Pearson Chi-square test ## Fisher's exact test.


**Table 3.** Comparison of anxiety and depression scores at baseline between experimental and control groups (N = 40).

Following the intervention program, the experimental group's mean scores for anxiety and depression decreased significantly at post-test compared to baseline (Table 4).

**Table 4.** Comparison of anxiety and depression scores at each point of measurement in experimental group (*n* = 20).


The post-test comparison between the experimental and control groups found that the mean scores for anxiety and depression in the experimental group were significantly lower than those of the control group (Table 5).

**Table 5.** Comparisons of anxiety and depression scores after intervention between experimental and control groups (N = 40).


\* *p* < 0.0001, \*\* *p* < 0.005.

#### **4. Discussion**

This study was undertaken to evaluate the effectiveness of a program given to patients with advanced cancer and family caregivers for reducing anxiety and depression in patients. Hospitalized patients are apt to have high psychosocial distress, and family members are in a good position to influence that distress. Especially in Thailand, there is a large presence of family members in the hospital. Findings from this study demonstrated that the family involvement program reduced anxiety and depression in patients with advanced HCC. The program consisted of four aspects of family involvement, including health information sharing, care provision, decision making on treatments, and providing psychological support.

In this program, nurses were encouraged to build rapport and establish trusting relationships with patients and family during the first day of hospital admission. This is aimed at affirming an important role of families [28]. The nursing activities included encouraging patients and their caregivers to be open and share concerns as well as impacts of the cancer experiences on all family members. In the information sharing session, the nurse provided education and support tailored to patients' needs and preferences for the level of required information. She also invited family caregivers to participate and provided the booklet for patients and other family members to learn. Family members could help patients manage physical symptoms and cope with psychological concerns.

In addition, the nurse supported family members to engage in conversations with the physician. A previous study reported that health information assists patients in coping with the immediate and long-term physical, emotional, and social impacts of cancer [47].

Advance care planning is a key component of palliative care for patients with HCC [29]. Our nurse-led program facilitated family caregivers to become involved in decision making through providing and sharing information with the patient, coordinating care with medical doctors for consultation, and setting family meetings among the patient, family members, and healthcare providers. Patients often viewed their family members as supporters to help cope with cancer and treatment options and identify preferences [21] and mentioned that it was important to discuss or share any decisions made with their caregivers [48]. Therefore, these nursing activities would alleviate patients' psychological distress.

Another aspect of our nurse-led program was to encourage family caregivers to be involved in care provision. Based on PPS assessment, most of our study participants were in the transition phase. For the most part, these patients were unable to perform activities of daily living. Encouraging family caregivers to be involved in daily patient care such as bathing, grooming, or eating can fulfill the physical needs of their loved ones. Furthermore, during care involvement, patients and family caregivers spend time together, which can enhance the intimate relationship and promote a sense of connectedness and alleviate feelings of loneliness [40].

Our findings confirmed the previous systematic review, which reported that psychooncological intervention can alleviate depressive symptoms and anxiety in patients with HCC [6] and patients with prostate cancer [22,23] and with breast cancer [24,25]. This nurse-led program is appropriate for an inpatient setting. In general, the length of stay of hospitalized patients with HCC in the selected hospital was five to six days. Therefore, our brief one-on-one family involvement program could be beneficial for both health care providers and patients as well as their family. It can be provided during hospital visiting times each day. It has been reported that a brief intervention, delivered by lay persons, can promote adjustment among newly diagnosed cancer patients at high risk of developing anxiety or depressive disorders [49]. Nurses take roles to facilitate interaction and communication among patients, family, and health care providers. Based on our observations during implementation of the program, we witnessed happy moments and saw the sparking eyes among patients. Instead of lying on their beds all day, these patients looked energized. Our study participants also reflected that they spent their time together meaningfully. When all aspects of the intervention are provided in a synchronized manner, they can alleviate psychological distress as experienced by these patients.

#### **5. Limitation of the Study**

There are some limitations in this study. The participants were family caregivers of male patients with advanced HCC in the university hospital, Southern, Thailand. Therefore, generalization to other settings and female patients is limited. This study was conducted during the COVID-19 pandemic, hence there was a limited number of eligible participants in the study. It would be valuable to repeat the study with a larger sample as well as with a female patient sample. Finally, the outcomes were assessed immediately after the program completion. Interventions cannot be assumed to have long-term effects. Moreover, only patient outcomes were measured. Further studies should be undertaken to examine the outcomes on family caregivers and measure the outcomes over a more extended period in both patients and family caregivers. Due to the complexity of care demands among other hospitalized patients, implementing the program in other inpatient settings may require adjusting the intervention to make it more practical in real-world settings.

#### **6. Conclusions and Implications**

Depression and anxiety are common among patients with HCC. The study addressed the significance of family involvement in alleviating anxiety and depression in hospitalized patients with advanced HCC. The results show that our nurse-led family involvement program had a short-term effect of reducing anxiety and depression symptoms immediately after intervention. This program was delivered successfully by registered nurses to patients with moderate levels of psychosocial distress. In the future, to implement the program in medical settings, nurses will require preparation for screening psychological distress and providing the intervention through orientation to the program activities.

**Author Contributions:** Conceptualization, S.K., S.T., K.N., and M.I.F.; methodology, S.T., K.N., and M.I.F.; validation, S.K. and K.N.; intervention, S.K.; formal analysis, S.T; writing—original draft preparation, S.T., and K.N.; writing—review and editing, K.N. and M.I.F.; funding acquisition, S.T.; project administration, S.T. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research was funded by the Faculty of Medicine Research Funds (grant number: 62-00015).

**Institutional Review Board Statement:** The Institutional Review Board of the Faculty of Medicine, Prince of Songkla University approval was obtained before the study was initiated (EC 62-131-15-7).

**Informed Consent Statement:** Informed consent was obtained from all subjects involved in the study.

**Conflicts of Interest:** The authors declare no conflict of interest.

#### **References**


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## *Article* **Perspectives on Emotional Care: A Qualitative Study with Cancer Patients, Carers, and Health Professionals**

**Meinir Krishnasamy 1,2,3,4,\* , Heidi Hassan <sup>1</sup> , Carol Jewell <sup>2</sup> , Irene Moravski 2,3 and Tennille Lewin 1,2,5**

<sup>1</sup> Academic Nursing Unit, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia


**Abstract:** The emotional consequences of a cancer diagnosis are well documented and range from emotional distress, defined as suffering associated with feelings such as shock, fear, and uncertainty, through to psychological distress that may manifest as depression, anxiety, feelings of hopelessness, or heightened risk of suicide. This study set out to explore the assumption that the provision of emotional care should be the platform upon which all other aspects of cancer care are delivered and, that without attention to emotional care, no other aspects of cancer care can be fully realized. Utilizing qualitative focus groups and in-depth interviews with 47 patients, carers, and health professionals, emotional care was shown to be (1) fundamental to the provision of comprehensive cancer care, (2) essential to easing the burden of a cancer diagnosis and demands of treatment, (3) everyone's business, and (4) a component of cancer care at any time and every time. Future studies are needed to test interventions to enhance provision of intentional, purposeful, and individualized emotional care to help patents achieve the best health outcomes possible.

**Keywords:** cancer care; emotional care; person-centered care; qualitative research

Cancer and its treatments can affect every aspect of an individual's life, giving rise to a range of supportive care needs that can include informational, physical, practical, social, spiritual, psychological, and emotional requirements [1]. When left unaddressed, these needs can impact capacity to tolerate or adhere to treatment, capacity to engage in treatment decision-making, patient experience and health outcomes, and health system costs [2,3]. Supportive care refers to the provision of services, resources, and interventions required by people to cope with the needs triggered or exacerbated by a diagnosis of cancer, the demands of treatment, and ongoing consequences of a cancer diagnosis [1] and is recognized as a component of quality cancer care [4]. This paper reports on experiences of emotional care as a distinct component of supportive care, as reported by people affected by cancer and health care professionals involved in their care. The data were collected as part of a larger study (described below). The manuscript is not concerned with provision of psychological care for patients who present with or develop complex mental health issues during a cancer experience, which require specialist psychological or psychiatric intervention.

#### *Cancer, Supportive Care, and Emotional Health*

The emotional health consequences of a cancer diagnosis have been well documented and range from emotional distress (suffering associated with feelings such as shock, fear, and uncertainty), through to psychological distress that may manifest as depression, anxiety, feelings of hopelessness, or heightened risk of suicide [5,6]. Approximately 35–40% of

**Citation:** Krishnasamy, M.; Hassan, H.; Jewell, C.; Moravski, I.; Lewin, T. Perspectives on Emotional Care: A Qualitative Study with Cancer Patients, Carers, and Health Professionals. *Healthcare* **2023**, *11*, 452. https://doi.org/10.3390/ healthcare11040452

Academic Editor: Reza Mortazavi

Received: 30 December 2022 Revised: 29 January 2023 Accepted: 2 February 2023 Published: 4 February 2023

**Copyright:** © 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

patients with cancer experience emotional or psychological distress at some stage during their illness [7,8], and this is especially so for patients who enter the health system already burdened by poverty, poor health literacy, rurality, cultural and linguistic diversity, or who belong to Indigenous or First Nations peoples [9]. Emotional care refers to the identification of and tailored responses to the emotional suffering experienced by people affected by cancer [1].

Furthermore, people affected by some cancers, such as head and neck cancer, are estimated to have suicide rates up to four times higher compared with the general population [10]. Cancer caregivers also experience considerable unmet emotional need, especially when the trajectory of care is prolonged [11] or where prognosis is poor at time at diagnosis [12]. Indeed, several studies have demonstrated that caregivers experience more emotional challenges than patients themselves [13,14]. Combined, patients with advanced cancers and their carers report emotional and psychological needs as the most prevalent unmet supportive care domains [12].

Although timely, targeted, and personalized supportive care screening, assessment, and intervention has been shown to relieve emotional and psychological needs following a cancer diagnosis [15–17], provision of supportive care (and thus attention to emotional and psychological needs) remains inconsistent [18]. This is concerning given evidence demonstrates that the emotional wellbeing of patients is linked to their ability to communicate with members of their health care team, make decisions, adhere to treatment, and achieve optimal physical health outcomes [19]. One explanation for this may be the conceptualization of emotional care (as a component of supportive care) as something adjunct or additive to the treatment of cancer care [20], rather than recognizing it as the platform upon which all other aspects of cancer care should be constructed or delivered [4].

The data reported in this paper are drawn from a large mixed-methods study undertaken to refresh and develop new approaches to the integration of cancer supportive care as a component of routine cancer service delivery. The study was funded by the Victorian Department of Health in Australia and approved by the University of Melbourne Human Research Ethics Committee (ID REF: 185 1227.5). A broad community of 300 cancer consumers (patients/family members/support persons), health professionals, health services researchers, policy makers, and not for profit organization members (other participants) took part in the mixed methods study, and data gathered were used to build an online supportive care portal (https://wecan.org.au (accessed on 20 December 2022).) (publication in preparation). Here, we present insights gained from qualitative focus groups and in-depth interviews undertaken as part of the larger study between January–November 2018 regarding provision of emotional care. This paper sets out to report participants' accounts of experiencing or responding to emotional distress, as defined above. It also sets out to consider whether data generated support the assumption that the provision of emotional care should be the platform upon which all other aspects of cancer care are delivered and, that without attention to emotional care, no other aspects of cancer care can be fully realized.

#### **2. Materials and Methods**

An exploratory qualitative approach, utilizing data collected during Town Hall and Community of Practice events as part of the larger mixed methods study. Town Hall meetings are a recognized approach to community engagement when a broad and inclusive approach to data collection is required to meet study aims [21]. A Community of Practice is a group of people who come together over a period of time to share an interest in, address, and learn more about a particular topic [22].

#### *2.1. Methods*

Focus groups were chosen to collect data during the larger supportive care study, to facilitate interaction among a large and diverse group of participants, in order to generate a wide range of views and ideas [23]. Participants who were unable to attend a focus group were offered the opportunity to take part in an in-depth interview.

#### *2.2. Recruitment and Consent*

Recruitment involved purposive and snowball sampling techniques [24]. Initially, a list of key stakeholders (described above as part of the larger mixed methods study) was developed by the project lead who had experience of and expertise in cancer supportive care (MK). The aim was to purposively recruit a diverse sample of participants with experience of supportive care either as a cancer patient, carer (i.e., family member or informal support person), or health professional. Potential participants were approached directly via email describing the intent of the study and inviting them to take part. The email contained a flyer explaining eligibility criteria, what participation would involve, and details of how to contact a member of the project team to express interest in taking part. Potential participants were asked to forward on the flyer to colleagues/friends they believed met the eligibility criteria and who might be interested in taking part. Eligibility criteria for people affected by cancer were: (1) current or previous cancer diagnosis or family member/support person of somebody who has/had a cancer diagnosis, (2) 18 years of age or over, (3) able to provide informed consent, and (4) able to read, write and speak English or take part with support of a family member/support person. Eligibility criteria for the health professionals were: (1) experience of working with/supporting people affected by cancer in any aspect of the health sector, (2) 18 years of age or over, and (3) able to provide informed consent. Following contact with a member of the project team (MK, IM, CJ), a copy of the Participant Information and Consent Form (PICF) was emailed or mailed to participants to read and sign and bring it along with them on the day of the focus group or interview. Participants who took part in an interview remotely (that is via telephone) were asked to return the signed consent form via email or mail, as preferred. Consent was also re-checked verbally and audio-recorded on the day of the focus group or interview.

#### *2.3. Data Collection*

After re-checking consent at the beginning of each focus group or interview, participants were asked to complete a brief demographic data collection form to indicate their status as a patient, carer, or health professional, their age, place of residence or work, language spoken at home (patients and carers) or, their professional affiliation (health professionals only). Intentionally, no data on cancer diagnosis, time since treatment completion, or treatments received were collected from patients or carers as there was no intention to undertake any tests of association or to consider experiences of emotional care in the context of a specific diagnosis. As such, collecting these data seemed intrusive. To address any potential imbalance of power by having health professionals, patients, and carers in the same focus groups [25], three patient and carer, and three health professional focus groups were conducted separately. Of the six focus groups, two were held in a regional setting, ensuring that the study was accessible to people affected by cancer and health professionals outside of metropolitan sites. Patient and carer participants were compensated for their travel and parking cost. Focus groups were moderated by two members of the project team (MK, CJ, IM), one to lead discussion and a second to observe and take notes of context and environment and to ensure that all participants had an opportunity to contribute. Interviews were conducted by the same project team members. A semi-structured discussion guide (see Supplemental Material S1) was developed based on data generated by Town Hall meetings and Community of Practice events undertaken as part of the larger mixed methods study. The discussion guide facilitated exploration of participants' experiences and understanding of supportive care and their views of its value and importance. The questions did not specifically direct participants to emotional domains of supportive care and so the findings reported below represent spontaneous insights recounted by participants of their experiences and views regarding emotional care. An example of questions

included in the focus groups and in-depth interviews is presented in Table 1. A full list of focus group and interview questions are available as Supplementary Material S1.

**Table 1.** Examples of focus group/interview questions.


Interviews and focus groups were audio recorded and transcribed verbatim as word documents. Word documents were uploaded to NVivo 12 [26] to help organize and manage the analytical process. All study data were stored in secure electronic folders and only named members of the project team had access to audio-recordings, participants demographic data, and consent forms. Transcribed audio recordings were de-identified.

#### *2.4. Analysis*

Data analysis was undertaken in accordance with Braun and Clarke's six steps of thematic analysis [27]. Recordings from each data set were initially listened through, transcripts read, and notes made about general observations and impressions, as part of researcher familiarization and rich engagement with the data. Transcripts were coded by two independent coders (CJ, SM) and any disagreement clarified through discussion with the project lead (MK). A threshold for saturation was agreed prior to data analysis which was agreed as the point at which no new themes were generated through the analytical process. The focus was on producing semantic, rather than latent themes as a means of establishing a detailed description of the data, but without engaging in broader interpretative theorizing [28]. All data were coded line by line using an inductive process. Candidate themes were identified by reviewing the codes and individual codes were collated under candidate themes. Themes were refined and revised using a reflexive process, and consistent with Braun and Clarke's model, themes were conceptualized as constructs rather than representative of "reality" [28]. Participants' demographic data were analyzed descriptively. The manuscript has been prepared according to the Consolidated Criteria for Reporting Qualitative Research Checklist [29].

#### **3. Results**

#### *3.1. Participants*

Forty-seven participants (16 patients, six carers, and 25 health professionals) took part across six focus groups and eight interviews (Table 2).


**Table 2.** Participant demographics (n = 47).


**Table 2.** *Cont*.

#### *3.2. Focus Groups/Interviews*

Four themes were generated that related to emotional care. No themes were unique to either focus group or interview participants. Themes are illustrated below by inclusion of participant quotes. Where more than one quote is included per theme, is it to illustrate nuance within the theme, rather than being indicative of a theme's prevalence within the data.

#### *3.3. Emotional Care—A Fundamental Component of Cancer Care*

People affected by cancer spoke of the provision of emotional care as being necessary to enable a person to live well, to cope throughout the treatment period, and beyond.

*"So there's emotional care, there's physical care, there's managing symptoms of cancer and of treatment. The emotional support of the patient [is important]* . . . *so they can live well throughout that time."* (P042)

Attending to a person's emotional needs was recognized by health professionals as fundamental to quality of life and ability to cope with the treatment "journey" and making it the best it could be.

*"what* . . . *might be of benefit to that person, wherever they are in their treatment phase* . . . *what services* . . . *might be of benefit for them to improve quality of life, make their treatment better, make their journey better."* (W FG HP01)

People affected by cancer spoke about their experience of emotional care in the context of help, advice, communication, and perhaps most significantly, listening and being responsive. Participants' emotional wellbeing was described as coming from feeling cared about, having a connection with a health professional who understood their struggles and circumstances, and took time to listen to them.

*"The most important and valuable thing is I guess, yeah, it's that you've got someone to talk to about your emotional state. It's really about the emotional state I guess. It's having someone you can talk to about it,* . . . *your emotional feelings, just dealing with your anxieties and your emotions really."* (PC046)

For some, this was a connection with a particular health professional, often a cancer nurse, while for others, this came through connections made in peer support groups and community services.

*"it can be the simple things like, can I do the shopping or can I come and wash your dishes, and people don't know what to ask or how to ask if they could help."* (M FG HP05)

For many health professionals ensuring access to practical support, delivered by nurses, occupational therapists, dietician, physiotherapists, psychologists, or social workers was regarded as an important emotional intervention where recognizing what a person needed practically, was a way of acknowledging an individual's unique circumstances, and a way of *'being with'* a person.

*"For me it means it's other people to help so that the patient's got lots of experts to help them with all of the needs that they've got."* (M FG HP01)

#### *3.4. Easing the Burden*

For many participants, the provision of emotional care was synonymous with easing the burden of a cancer diagnosis. Easing the burden came in very many forms, from ensuring that personal needs were attended to whilst in hospital, recognizing that someone is experiencing hardship and making it possible to ask for help, finding practical solutions to problems such as living arrangements, getting the shopping, knowing how to tell family about the diagnosis, and recognizing the mounting costs and financial concerns. These were all recognized as the provision of emotional care because they took account of the wider context of the person's life and the extensive impacts of a cancer diagnosis.

*"[health professionals] need to not just look at us as a physical thing, they need to look at us as the whole person, they need to look at us how we are emotionally and especially in our situations outside, our family situations and work with that as well because that's what makes us get better and it's what makes us feel supported if they, you know, that they're involved and understand what's going on* . . . *"* (M FG CC 07)

People affected by cancer described being unclear about what support or help was on offer to them, especially soon after diagnosis, and there was a concern that people might miss out on important care as a consequence.

*"if you say to a person do you want [support] or supportive care and they say no, what do they understand that they were gonna get, or what have they just missed out on."* (PC041)

Health professionals spoke about the importance of being explicit about what was on offer, of asking gently probing questions to ensure that patients' needs were identified, and that they were made aware of what help was available to them. Taking a sensitive approach to asking the questions was recognized as an important component of emotional care, preventing people from feeling that they were "not coping" if they were having difficulties, especially when this related to issues of emotional need.

*"I would just talk about whatever [service] it was. Like say, you know, it might be valuable to do this* . . . *or it might be valuable for you to do this."* (W FG HP03)

*"I think that when you're trying to integrate a service that's got stigma attached to it or that people might feel* . . . *, don't want to admit that, you know, they need extra help."* (PC041)

Critical to easing the burden and the provision of emotional care was acknowledging people as individuals with unique and dynamic needs.

*"it needs to be individualised. If you've got a child with cancer your needs are far different to what having a husband with cancer is, having cancer yourself, it's just got to be* . . . *individualised, tailored."* (R FG CC 011)

*"I did ask, I'm really struggling, and maybe the staff could see that. So, you know, having staff at the hospitals that see that* . . . *is pretty important."* (PC046)

#### *3.5. Emotional Care—Everyone's Business*

The provision of emotional care was universally considered to be the responsibility of all health professionals. Having a person's concerns or needs respected or acknowledged, even if a clinician could not directly deal with them, was recognized as important to addressing a person's emotional wellbeing.

*"I think that concept of, you know, the word respect and taking the time to get to understand the person you're speaking with."* (M FG HPC07)

*"You want them to have the attitude of this is about you, so we're gonna answer your questions and if I haven't got time to answer them now we're gonna organise a time where we're gonna sit down and we're gonna go through all your questions."* (M FG PC08)

Communication skills were identified by almost every patient and carer as being essential to the provision of emotional care. Strategies such as making eye-contact, introducing oneself at the beginning of the consultation, using the patient's name, having read case notes prior to the consultation, and having an un-rushed manner were described as making the difference between feeling emotionally supported and recognized as a person, not just a patient.

*"People who come in* . . . *and then they sit there with your notes and proceed to, um, ask you questions, and I have on one occasion had to tell a registrar you should be reading those notes prior to coming in to our consultation otherwise, um, our consultation is not going to be very meaningful* . . . *. So that sort of person I wouldn't talk to about my fear of recurrence for example because I would think they haven't even bothered to read the notes before walking in so what's their care factor."* (PC049)

Many health professionals spoke of the need to introduce conversations that were about addressing emotional care with a lead-in, prefacing offers of support with an outline of the general concept of care that extends beyond medical treatment.

*"you have to preface it by saying I'm giving you this form to have a look at and complete because we know that we can provide you with extra services but we don't know specifically what we think you need."* (PC040)

Some spoke of time taken to sit with someone in their distress, listen carefully to understand their needs, and ask gently probing questions as being an investment in avoiding difficulties escalating, or even reaching a crisis point before being addressed.

*"I think the biggest thing* . . . *is* . . . *it's actually having a conversation with the person* . . . *actually sit down and* . . . *you might refer them [there]."* (M FG HP 010)

People affected by cancer and health professionals identified these components of care as being central to provision of emotional support. The ability to ask any health professional about their needs or concerns, and health professionals' willingness and ability help patients find the most appropriate support either directly or via a referral, were highly valued aspects of emotional care.

*"it's part of routine supportive care to actually do this identification of need* . . . *to do that in a way that's palatable to patients, and in a way that facilitates* . . . *them getting access to the right supports at the right time."* (PC041)

However, complex barriers, such as lack of time to address emotional needs or having the skills required to initiate and manage emotional discussion, were acknowledged by all participants.

*"There's just that everyone is so very busy, so taking time to stop and actually think about what the patient might want or need is hard work* . . . *especially ward nurses* . . . *they're under such pressure. And then I think there's people that don't have the skills to ask those questions* . . . *you know, some people are frightened to ask patients about how they're feeling properly because they are frightened they won't be able to deal with that or, you know, be able to help them once they tell them."* (PC042)

The tension between demands on health professionals' time to meet large patient caseloads whilst having only a short amount of time allocated to each patient, was recognized.

*"you don't want to be a burden* . . . *you know people are busy"* (MFG CC 03)

*"so they [health professionals] would say yeah we're aware that patients are distressed, we're aware that it's a terrible time, but you know, we're trying to deal with their physical needs, we're trying to get through the tasks that are required to get them physically well." (P040)*

*3.6. Emotional Care—Anytime, Every Time*

The provision of emotional care was recognized as fundamental to wellbeing across all stages of a person's cancer experience.

*"I think the early stages is where a lot more supportive services should be in whether you want them or not, because the first thing's shock, grief, you know, who do I talk to, do I tell the kids, no I don't, do I or don't I and how do you tell them* . . . *I think the end of life there's a lot more research done into dying and death and there's all that. It's that first three months is the hardest."* (R FG CP 07)

For some participants the early stages of coming to terms with a diagnosis and engaging with treatment were felt to be so overwhelming that it was difficult to take anything else in and the importance of revisiting needs over time was highly valued.

*"And even during treatment, so I had surgery and then chemotherapy and then radiotherapy, during most of that time I didn't really actively seek anything because I was so involved in just trying to get through my treatment."* (PC046)

*"this notion that* . . . *just identify and then refer, it's short-sighted because things change and new things come up"* (CP041)

The importance of continually screening for, assessing, and intervening (as appropriate) for emotional needs was emphasized by all patients and carers, emphasizing the dynamic nature of the emotional impost of a cancer diagnosis from diagnosis through to end of treatment and on into follow up care.

*"once you've finished your active treatment, going back into the real world, you know, forming your new normal life, what's normal, because life has changed, and everyone looks at you like oh you're looking a lot better, your hair's grown back and you're looking healthy, so people think everything's fine but it's not because things have changed and you've got those fears and that sadness still there. So that's the crucial time where support's needed."* (PC046)

However, irrespective of when support was provided, people affected by cancer were unanimous in their view that dedicated time and space was essential to enable meaningful emotional care, and that attention to emotional needs should be recognized as an intentional, purposeful, and distinct component of cancer care.

*"I think it's difficult emotionally for patients to hold both sort of stances at once sometimes, to be thinking about the impact of their treatment on their life and what it means to them as a person, at the same time as trying to focus on the side effects of treatment and are those needs being addressed. I think having it separate, there is a role for that, even though we want of course all clinicians to have a certain level of understanding of [emotional care] and represent that in their practices."* (CP041)

#### **4. Discussion**

This qualitative study explored insights from 47 people affected by cancer and health professionals through a series of six focus groups and eight in-depth interviews, that focused on perspectives of emotional care as a component of cancer care. Four key themes were generated focusing on, the centrality of emotional care within the concept of cancer care; the importance of easing the burden through intentional emotional care; emotional

care as everyone's business; and the provision of emotional care as an enabler of emotional wellbeing across the entirety of a person's cancer experience.

The purpose of this paper was to explore the assumption that the provision of emotional care should be the platform upon which all other aspects of cancer care are delivered (emotional care anytime, every-time) and that without attention to emotional care, no other aspects of cancer care can be fully realized [4]. The paper set out to consider this assumption through perspectives of emotional care as recounted by patients with cancer, carers, and health professionals who had taken part in focus groups and in-depth interviews as part of a larger cancer supportive care study. Findings presented appear to support the assumption, whilst acknowledging that this is an initial exploratory study, representing insights from a predominantly female sample (patients and nurses) from metropolitan settings. As such, further research is needed to test this assumption more fully.

The importance of attending to the emotional stressors or burdens experienced following a cancer diagnosis has long been acknowledged, recognizing that cancer results in atypical levels of fear, worry, distress, and uncertainty for people affected by cancer [30]. Nevertheless, evidence demonstrates that the emotional needs of cancer patients (and those close to them) continue to be overlooked with damaging consequences such as inability to adhere to treatment [3,31,32]. This is not to suggest that cancer health care professionals lack care or empathy, but rather that they face considerable barriers within busy and often under-resourced health care settings to attend to needs beyond the cancer itself or to manage side-effects and symptoms of the treatment or the disease [30,33]. When integrated as the basis upon which cancer care is provided, actively asking about and listening to the needs of patients; empathy for their concerns; going beyond the minimum care provision required; timely identification and response to needs or concerns and, recognizing the needs of family members or carers have been described as powerful and practical ways to mitigate the emotional impost of cancer [30].

Our findings support many of these important insights. Our data demonstrate the importance placed by people affected by cancer and health professionals on the provision of emotional care and the creation of a safe emotional space where concerns and needs can be shared without fear of feeling a burden or as someone unable to cope. Skilled, empathic communication and the delivery of respectful person-centered care were identified as important components and enablers of emotional care and easing the burden. These are not new insights and are recognized as central tenets of patient centered care, benefits of which include enhanced patient experience, improved health outcomes, adherence to treatment, and improved health care costs [34], all of which have been shown to be sensitive outcomes to the provision of emotional care [15,16]. Consistent with other literature, our study demonstrated that the provision of emotional care is central to patients' experiences and outcomes of their cancer [35]. Our data also captured the importance of ensuring the availability of emotional care across the entirety of a person's cancer experience. Feeling able to talk to health professionals about emotional concerns, receiving information about services available, having needs acknowledged and validated by health professionals with the skills and knowledge to respond in a humane and respectful way, were critical to seeking and receiving impactful emotional care. These are important insights. With growing numbers of people being diagnosed with and living beyond cancer and its treatments [36,37], there is urgent need to enhance peoples' capacity to self-care (as they are able) to sustain their wellbeing through provision of timely emotional care. With a global health workforce shortage and reduction in health budgets in real terms [38–40], health systems will be unable to sustain the level of care currently provided to people with cancer. Enabling those who can access and proactively use emotional support services to do so will reduce burden on the health system, targeting scarce resources to those with greatest need for specialist emotional support and care. As health professionals there is opportunity for us to look outside acute health services and partner with not for profit, support, and advocacy groups who can deliver front line emotional care to people affected by cancer. Patients and carers in our study did not expect health professionals to have all the answers or resources to

hand, indeed they were quick to recognize the limitations and burden on their time and capacity to deliver emotional care, but they did expect that health professionals would access or refer them to services available to meet their needs.

Patient and carer participants in this study noted that the absence of accessible emotional care resulted in feelings of isolation, of fear of missing out on care, and of being a patient in a system, rather than a person enveloped by support. Lack of information about where and how to access emotional support was described as exacerbating already complex situations, compounding feelings of isolation and fear, and provision of support without taking the time to understand a person's unique and dynamic needs potentially negated the opportunity for receipt of meaningful emotional care—impacting not only emotional wellbeing but cancer outcomes. Recently published evidence has demonstrated considerable return on investment for patients and health systems when patients receiving timely supportive care, inclusive of emotional care [2]. Our data support these findings, demonstrating advocacy for timely and ongoing access to emotional care for patients and carers, and investment in health professional knowledge and capability to deliver emotional care to prevent and mitigate the emotional impacts of a cancer diagnosis. Importantly, our data demonstrate that emotional care is a critical domain in the provision of cancer supportive care, requiring effective communication skill and empathy on the part of health professionals, and investment in time and resources by health services to enable and health professionals to deliver the care they recognize and value as components of patient-centered care.

An important insight from our study is that the provision of emotional care requires distinct and purposeful attention recognizing that it has to compete with the urgency of treating the cancer itself, " . . . *it's difficult emotionally for patients to hold both sort of stances at once sometimes, to be thinking about the impact of their treatment on their life and what it means to them as a person*". Participants in this study demonstrated the importance of creating an emotionally supportive context for the provision of the totality of cancer care, enabled through respectful interaction, provision of time and attention to individual needs, skilled communication and readiness to source and refer patients and carers to a diverse range of support services and resources.

The strengths of this study are that it generated data from a cohort of patients, carers, and health professionals with lived experience of providing and receiving cancer supportive care. The intent was not to generate generalizable data but to explore in-depth perspectives on emotional care as a component of cancer care. Data included participants living and working across metropolitan and regional areas of one state in Victoria, Australia. The paper provides novel insight on emotional care, offering insights to ways in which the experience of emotional care can be enhanced for consumers and enabled by health professionals. Future studies may focus on the impact of interventions to strengthen provision of emotional care, patient reports of care experiences, health outcomes, and system impacts. Insights from the focus groups and interviews were fed back to participants as part of the larger study. A key limitation of the study is that no people from Aboriginal or Torres Strait Islander or culturally or linguistically diverse peoples were included. As such, these findings are likely to present "the best' of experiences, and recommendations generated may have limited relevance to under-served populations.

#### **5. Conclusions**

In conclusion, emotional care is critical to the provision of patient-centered care, without which effective delivery of other aspects of cancer care may be hindered. The provision of emotional care and perceptions of its adequacy or impact rely on health professionals' communication skills; their ability to offer proactive opportunity for discussion of needs and concerns across all stages of the cancer experience, and importantly, their access to time and resources necessary to elicit and respond to emotional needs. For patients, availability of opportunity, encouragement to voice, and awareness of the legitimacy of emotional concerns are important facilitators of emotional care. Future studies are needed to test

interventions to enhance provision of intentional and purposeful emotional care delivery to ensure patients achieve the best health outcomes possible. Studies focusing on the emotional care needs of underserved populations are urgently needed.

**Supplementary Materials:** The following supporting information can be downloaded at: https: //www.mdpi.com/article/10.3390/healthcare11040452/s1, File S1: People affected by cancer: Focus group/interview schedule.

**Author Contributions:** Data curation, C.J.; Formal analysis, M.K., C.J.; Funding acquisition, M.K.; Investigation, C.J., I.M. and T.L.; Methodology, M.K. and T.L.; Project administration, M.K.; Supervision, M.K.; Writing—original draft, M.K. and H.H.; Writing—review and editing, C.J., I.M. and T.L. All authors have read and agreed to the published version of the manuscript.

**Funding:** This study was funded by the Victorian Department of Health, Australia.

**Institutional Review Board Statement:** The study was conducted in accordance with the Declaration of Helsinki, and approved by the University of Melbourne Human Research Ethics Committee ID REF: 185 1227.5 on 21 March 2018.

**Informed Consent Statement:** Informed consent was obtained from all subjects involved in the study.

**Data Availability Statement:** The data are stored electronically and in accordance with Good Clinical Practice requirements in the Academic Nursing Unit, The Peter MacCallum Cancer Centre, Melbourne Australia, De-identified data can be accessed from the lead author (MK).

**Acknowledgments:** The authors wish to acknowledge and sincerely thank all the participants who gave their time and expertise so generously to be part of this study. Thanks to Stella Mulder for her expert contribution to co-coding the data set from the larger study from which these data were extracted.

**Conflicts of Interest:** The authors confirm they have no individual, company or organization-based interests which involve financial or personal gain.

#### **References**


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## *Article* **Development of a Scale of Nurses' Competency in Anticipatory Grief Counseling for Caregivers of Patients with Terminal Cancer**

**Chia-Chi Hsiao 1,2,3 , Suh-Ing Hsieh 4,5,\* , Chen-Yi Kao <sup>6</sup> and Tsui-Ping Chu 1,3**


**Abstract:** Anticipatory grief leads to a highly stressful and conflicting experience among caregivers of patients with terminal cancer. Nurses lack the competency to assess and manage the caregivers' psychological problems, which in turn affects the caregivers' quality of life. A scale assessing the anticipatory grief counseling competency among nurses is unavailable. In this study, an Anticipatory Grief Counseling Competency Scale (AGCCS) was developed for nurses. The Scale (AGCCS) was translated into Chinese and then revised. Psychometric testing of the scale was conducted on 252 nurses who participated in the care of patients with terminal cancer at a regional teaching hospital in Southern Taiwan. The data were analyzed using descriptive statistics, reliability, and Pearson's correlation, and principal component analysis and analysis of variance were performed. Item- and scale-content validity indexes were 0.99 and 0.93, respectively. The Cronbach α of internal consistency was 0.981. The final 53-item AGCCS had five factors, which accounted for 70.81% of the total variance. The Pearson correlation coefficients of these factors ranged between 0.406 and 0.880 (*p* < 0.001). The AGCCS can be used to evaluate the aforementioned competency for improving caregivers' quality of care. It can also facilitate in-service education planning and evaluation.

**Keywords:** patients with terminal cancer; caregivers; competency in anticipatory grief counseling

#### **1. Introduction**

In 2021, cancer was one of the 10 leading causes of death in Taiwan, accounting for 28.0% of all deaths [1]. An integrative literature review revealed that 12.5% to 38.5% of caregivers experience anticipatory grief symptoms before the death of their relatives [2]. In caregivers of patients with terminal cancer, anticipatory grief can result in a highly stressful and conflicting experience. Nurses lack the relevant competency for assessing and managing the psychological problems encountered by these caregivers. Consequently, they are unable to address the caregivers' anticipatory grief promptly or appropriately, which in turn affects the caregivers' quality of life [3]. Inadequate assessment and management of anticipatory grief in the caregivers of patients with terminal cancer may lead to complex grief reactions [4].

In clinical nursing education, the emphasis has shifted from obtaining information using a didactic method to enhancing problem-solving through experiential learning [5]. With competency-based education, nurses are taught to fulfill the demands of the clinical care environment; moreover, competency-based assessments are applied to evaluate their competency [6]. These assessments are performed using Miller's pyramid of clinical competency and Kolb's experiential learning cycle [6].

**Citation:** Hsiao, C.-C.; Hsieh, S.-I.; Kao, C.-Y.; Chu, T.-P. Development of a Scale of Nurses' Competency in Anticipatory Grief Counseling for Caregivers of Patients with Terminal Cancer. *Healthcare* **2023**, *11*, 264. https://doi.org/10.3390/ healthcare11020264

Academic Editor: Margaret Fitch

Received: 15 November 2022 Revised: 10 January 2023 Accepted: 12 January 2023 Published: 14 January 2023

**Copyright:** © 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

In Canada, hospice nurses are required to have core competencies, including assessing the needs of patients' families and providing them with knowledge on loss, grief, and bereavement. Hospice nurses must consider the stage of development and aid patients' families in recognizing the characteristics of grief and distinguishing grief and depression. The nurses must also identify family members at high risk of complex grief; assist them in predicting, recognizing, and adjusting their individual responses to loss and death; consider the unique needs of children at different developmental stages; and support the process of loss, grief, and bereavement through the grieving nursing care plan [7]. In Colombia, hospice nurses' core competencies include communication; the formation of therapeutic interpersonal relationships with patients and families; and the provision of emotional, grief, and spiritual care to these individuals [8]. The core competencies outlined by the European Association for Palliative Care include the provision of patient- and familycentered care; comfort care; psychological, social, and spiritual care; the ability to cope with ethical challenges; inter-professional cooperation; communication skills; development of interpersonal relationships with patients and families; self-awareness; and commitment to continuous professional development [9]. In Taiwan, these competencies include spiritual care, life review, and death preparation [10]. Nurses play multiple roles in grief care in terms of patient- and family-centered care, advocacy, and professional development [11–14]. They are also responsible for assessing caregivers' psychological state and providing them with emotional support by listening to them (to allow caregivers to express their emotions), and they also improve the sensitivity of grief assessment through grief counseling theory to support caregivers in managing anticipatory grief [15]. Among all healthcare providers, nurses have the most contact with patients and their families [16]. Therefore, they also have more opportunities to listen to patients (including those with terminal cancer) and caregivers and to assess their psychological distress levels. Nurses' inability to provide such care can negatively affect their patients' and caregivers' quality of life [3].

Scales for measuring anticipatory grief counseling competency, however, have been developed only in the field of counseling. The Death Counseling Survey (DCS), designed by 34 grief counseling experts, is a self-assessment of grief counselors' professional knowledge and treatment and assessment skills. It contains 58 questions scored on a 5-point Likert scale (ranging from 1 = noncompliance to 5 = full compliance). The Cronbach α of the five subscales ranges from 0.80 to 0.94. The Grief Counseling Competency Scale (GCCS) was developed by Cicchetti [17] and Cicchetti et al. [18], modified from the DCS and revised by 27 experts with >5 years of family grief counseling experience by using the Delphi method. The GCCS is a self-assessment questionnaire comprising 46 questions scored on a 5-point Likert scale (ranging from 1 = this does not describe me to 5 = this describes me very well). The questionnaire is divided into two sections comprising nine questions related to personal competency and grief and 37 questions related to skills and knowledge of grief counseling competency; the Cronbach α values of Sections 1 and 2 are 0.79 and 0.97, respectively. Of the 37 questions in the second section, questions 9, 9, and 19 address conceptual skills and knowledge, assessment skills, and treatment skills, respectively; the Cronbach α values of the three subscales in Section 2 are 0.59, 0.60, and 0.60, respectively [17].

The GCCS developed by Cicchetti [17] is primarily intended for counselors with a master's degree; it emphasizes the life experience, philosophy, and attitude toward death, diagnostic criteria of grief and its distinction from other diagnoses, use of specific deathassociated words to discuss death-related matters, and ability to convey matters and explain death to children at various stages of death concept development. However, some GCCS items are unachievable for clinical nurses, and academic and in-service nurse education often lacks counseling courses. In addition, nurses are not expected to help caregivers understand the process and types of anticipatory grief, identify the manifestations of anticipatory grief, understand the differences between anticipatory grief and grief, or evaluate the risk of anticipatory grief. To the best of our knowledge, no scale has yet been developed for evaluating the competency of nurses in providing anticipatory grief counseling to caregivers of patients with terminal cancer. Therefore, in this study, we

developed a scale for this purpose; psychometric testing of this scale was also conducted to evaluate the scale's content and construct validity and internal consistency reliability.

#### **2. Materials and Methods**

#### *2.1. Design*

In this psychometric study, a cross-sectional survey was conducted using a structured questionnaire, which is part of a larger survey study [19].

#### *2.2. Participants and Setting*

Participants were recruited from the oncology ward of a regional teaching hospital in southern Taiwan by using convenience sampling [20]. A sample size of 3 to 6 per item was required. The participants included nurses, nurse practitioners, case managers, and assistant head nurses who had cared for patients with terminal cancer and were 20 years or older. After sampling was completed, the study instructions and anonymous questionnaires (with codes and commodity cards) were distributed among the participants. Of the 257 questionnaires issued, 251 completed questionnaires were returned, corresponding to a response rate of 97.7%.

#### *2.3. Instruments*

The instrument developed in this study featured sociodemographic and professional background characteristics and the Anticipatory Grief Counseling Competency Scale (AGCCS). The AGCCS was adapted from the GCCS [17] and employed care provided to caregivers in hospice care in Canada for their loss, grief, and bereavement, 7 spiritual care competencies [21], and spiritual care nursing interventions [22] as references for its development. The GCCS consists of 46 items scored on a 5-point Likert scale, and the scale is divided into 2 sections, with 9 items assessing perceived personal competencies (Cronbach α = 0.79) and 37 items assessing perceived skills and knowledge competencies (Cronbach α = 0.97). The 3 subsections of the second section include 9 items on conceptual skills and knowledge (Cronbach α = 0.59), 9 items on assessment skills (Cronbach α = 0.60), and 19 items on treatment skills (Cronbach α = 0.60) [17,18]. The GCCS has been adapted from the 58-item DCS, scored on a 5-point Likert scale; it contains 5 subscales: personal competencies (Cronbach α = 0.79), conceptual skills and knowledge (Cronbach α = 0.92), assessment skills (Cronbach α = 0.63), treatment skills (Cronbach α 0.87), and professional skills (Cronbach α = 0.83) [18].

Two experts with a nursing background and doctorate who had lived in Englishspeaking countries for >5 years performed the English-to-Chinese translation and Chineseto-English back translation of the questionnaires used. The initial 60 items were evaluated for content validity by a panel of 7 experts with a master's degree or higher; at least 5 years of experience in oncology, hospice, or palliative care; and who were ranked as an instructor or higher. These experts comprised 2 nursing supervisors, 1 nursing lecturer, 1 associate professor, 1 attending physician, 1 psychologist, and 1 social worker. Specifically, content validity was assessed as the topical appropriateness or relevance of the scale items on a 4-point Likert-type scale (ranging from 1 = not relevant to 4 = extremely relevant). The items were merged, added, separated, or revised according to the expert advice. After these revisions were made (55 items), a second round of expert validity review was performed, as an unfavorable scale-content validity index (S-CVI) of 0.68 was obtained. Further revision was conducted according to expert recommendations, as follows. "I can identify cultural differences in anticipatory grief care" and "I can identify cultural differences that affect responses to anticipatory grief" were combined into "I can identify cultural differences in anticipatory grief care and responses to anticipatory grief." The final questionnaire comprised 55 items, including 9 items that addressed personal experiences of anticipatory grief, self-awareness, traits, skills related to counseling, and conceptual understanding of counseling. The remaining 46 items pertained to self-evaluation of knowledge and skills

related to anticipatory grief counseling and nursing. All items were scored on a 5-point Likert scale (ranging from 1 = noncompliance to 5 = full compliance). knowledge and skills related to anticipatory grief counseling and nursing. All items were scored on a 5-point Likert scale (ranging from 1 = noncompliance to 5 = full compliance).

"I can identify cultural differences in anticipatory grief care" and "I can identify cultural differences that affect responses to anticipatory grief" were combined into "I can identify cultural differences in anticipatory grief care and responses to anticipatory grief." The final questionnaire comprised 55 items, including 9 items that addressed personal experiences of anticipatory grief, self-awareness, traits, skills related to counseling, and conceptual understanding of counseling. The remaining 46 items pertained to self-evaluation of

#### *2.4. Procedure 2.4. Procedure*

Figure 1 illustrates the study procedure. After permission was obtained from the author of the GCCS, forward and backward translation of the 46-item GCCS was conducted. Then, the 51-item AGCCS was developed based on cited references and through the revision of items [5,17,18]. First and second rounds of expert content validity review were conducted. Figure 1 illustrates the study procedure. After permission was obtained from the author of the GCCS, forward and backward translation of the 46-item GCCS was conducted. Then, the 51-item AGCCS was developed based on cited references and through the revision of items [5,17,18]. First and second rounds of expert content validity review were conducted.

*Healthcare* **2022**, *10*, x FOR PEER REVIEW 4 of 16

#### **Figure 1.** Study procedure. **Figure 1.** Study procedure.

A pilot study was conducted in the hematology, oncology, and neurosurgery departments (n = 29) between 26 November and 17 December 2019. Subsequently, the formal study was conducted in 11 units between February 19 and March 6, 2020. Finally, the reliability and construct validity of the questionnaires were determined using the collected A pilot study was conducted in the hematology, oncology, and neurosurgery departments (n = 29) between 26 November and 17 December 2019. Subsequently, the formal study was conducted in 11 units between 19 February and 6 March, 2020. Finally, the reliability and construct validity of the questionnaires were determined using the collected data.

#### data. *2.5. Ethical Considerations*

*2.5. Ethical Considerations*  This study was approved by the study hospital's institutional review board (201901235B0A3). Before the questionnaire was administered, the participants were assured that they could withdraw from the study at any time without consequences to their work assessment or promotion opportunities. They were also asked to provide informed consent. Except for the subject manual, the questionnaire content was replaced by codes This study was approved by the study hospital's institutional review board (201901235B0A3). Before the questionnaire was administered, the participants were assured that they could withdraw from the study at any time without consequences to their work assessment or promotion opportunities. They were also asked to provide informed consent. Except for the subject manual, the questionnaire content was replaced by codes to protect participant anonymity.

#### to protect participant anonymity. *2.6. Statistical Analysis*

*2.6. Statistical Analysis*  All statistical analyses were performed using SPSS Statistics for Windows (version 21; IBM, Armonk, NY, USA). Assumptions of normality, linearity, outliers, and multicollinearity for factor analysis were checked [23]. For sociodemographic and professional characteristics and the AGCCS scores, descriptive statistics were analyzed for frequency, percent, mean, and standard deviation. Reliability analysis was used to assess the internal consistency of the AGCCS [24]. Principal component analysis (PCA) of the exploratory factor analysis with Promax rotation was used to examine construct validity, and these analyses were based on initial eigenvalues (≥1), factor loadings (>0.40), and scree plots [24,25]. Analysis of variance (ANOVA) was used to examine the mean difference in AGCCS scores on ever

caring for family, relatives, and friends with anticipatory grief [26]. Pearson correlation was used to analyze the association between the AGCCS factors.

#### **3. Results**

#### *3.1. Sociodemographic and Professional Characteristics of the Participants*

Most of the participants were aged 26 to 30 years (31.1%), and nearly two-thirds were unmarried (65.3%). Moreover, 92% of the participants had a bachelor's degree in nursing, and 68.5% had religious inclinations, including 39.5% and 17% with Taoist and folk beliefs, respectively. Most (71.3%) of the participants had experiences with death, and 66.5% of the participants had experienced anticipatory grief because of the death of a relative or through relatives and friends.

Most (71.3%) of the participants were clinical nurses. The participants worked in the hematology and oncology, pulmonology, gastrointestinal and hepatobiliary pathology, or urology departments. Moreover, 36.3% and 34.3% of the participants had 5 to 10 years of experience regarding working experience in the current department and the total working years. Of all the nurses, 42.6% had taken at least one course on or received training in anticipatory grief counseling during their education (26.7%) or as a part of the in-service programs at their workplace (16.7%).

#### *3.2. Content Validity*

The item-content validity index (I-CVI) and S-CVI of the AGCCS were 0.95 and 0.68 in the first round of expert content validity evaluation, respectively, and 0.99 and 0.93 in the second round of expert content validity evaluation, respectively (Figure 1).

#### *3.3. Construct Validity—Principal Component Analysis of the Exploratory Factor Analysis*

The 55 items on the scale were subjected to PCA with Promax rotation. The value of the Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy was 0.965. The measure of sampling adequacy (MSA) of individual items ranged from 0.884 to 0.987. The Bartlett test of sphericity demonstrated significance (χ2 (1378) = 13,806.5, *p* < 0.001), with an initial eigenvalue and factor loading of >1.00 and 0.40, respectively. The items with corrected item-total correlations <0.30 (1–8, "I believe that there is more than one correct way to deal with anticipatory grief") and factor loading <0.40 (1–9, "I have a sense of humor") were excluded from the exploratory factor analysis step by step. Factors 1, 2, 3, 4, and 5 explained 52.18%, 8.08%, 5.40%, 2.67%, and 2.47% of the variance, respectively. In general, all five factors explained 70.81% of the total variance (Table 1). The scree plot in Figure 2 illustrates the five factors.

As presented in Appendix A (Table A1), the five factors of the scale were named as follows: factor 1 = competency in identification, assessment, and notification of anticipatory grief and enhancement of client's self-expression and management (19 items); factor 2 = competency in nursing interventions for anticipatory grief (13 items); factor 3 = competency in counseling for anticipatory grief (nine items); factor 4 = personal experience, self-awareness, traits, and counseling perspective and competency in addressing anticipatory grief (seven items); and factor 5 = competency in respecting, accepting, and listening to anticipatory grief and inter-professional collaboration for anticipatory grief (five items). Most of the items loaded on factors 3 and 4 between the pattern matrix and structure matrix, except two items (AGCC2-19 and AGCC2-33), were identical. The item of AGCC2-19 was loaded on factor 1 of the pattern matrix and factor 5 of the structure matrix, whereas the item of AGCC2-33 was loaded on factor 1 of the pattern matrix and factor 2 of the structure matrix.


**Table 1.** Total variance explained by the five factors of the Anticipatory Grief Counseling Competency Scale (n = 251).

#### **Figure 2.** Scree plot. **Figure 2.** Scree plot.

= 7.07, *p* = 0.008).

*3.5. Internal Consistency Reliability* 

#### As presented in Appendix A (Table A1), the five factors of the scale were named as *3.4. Construct Validity—Contrasted Groups Method*

follows: factor 1 = competency in identification, assessment, and notification of anticipatory grief and enhancement of client's self-expression and management (19 items); factor 2 = competency in nursing interventions for anticipatory grief (13 items); factor 3 = competency in counseling for anticipatory grief (nine items); factor 4 = personal experience, self-awareness, traits, and counseling perspective and competency in addressing antici-Our ANOVA results revealed that the mean AGCCS scores were significantly different between the participants who had (n = 138) and those who had not (n = 113) cared for family, relatives, or friends with anticipatory grief (176.47 ± 31.54 vs. 166.19 ± 20.09, F(1, 249) = 7.07, *p* = 0.008).

#### ing to anticipatory grief and inter-professional collaboration for anticipatory grief (five *3.5. Internal Consistency Reliability*

*3.4. Construct Validity—Contrasted Groups Method* 

items). Most of the items loaded on factors 3 and 4 between the pattern matrix and structure matrix, except two items (AGCC2-19 and AGCC2-33), were identical. The item of AGCC2-19 was loaded on factor 1 of the pattern matrix and factor 5 of the structure matrix, whereas the item of AGCC2-33 was loaded on factor 1 of the pattern matrix and factor 2 of the structure matrix. In the pilot study (n = 29) and the formal study, the AGCCS had a Cronbach α of 0.975. and 0.981, respectively—demonstrating its internal consistency. The items with corrected item-total correlations <0.30 (1–8, "I believe that there is more than one correct

patory grief (seven items); and factor 5 = competency in respecting, accepting, and listen-

family, relatives, or friends with anticipatory grief (176.47 ± 31.54 vs. 166.19 ± 20.09, F(1, 249)

In the pilot study (n = 29) and the formal study, the AGCCS had a Cronbach α of 0.975. and 0.981, respectively—demonstrating its internal consistency. The items with corrected item-total correlations <0.30 (1–8, "I believe that there is more than one correct way to deal with anticipatory grief") and factor loading <0.40 (1–9, "I have a sense of humor") were excluded during the exploratory factor analysis. As presented in Table 2, the internal consistency of the five factors ranged between 0.869 and 0.974. As shown in Table 2, twoway to deal with anticipatory grief") and factor loading <0.40 (1–9, "I have a sense of humor") were excluded during the exploratory factor analysis. As presented in Table 2, the internal consistency of the five factors ranged between 0.869 and 0.974. As shown in Table 2, two-tailed Pearson's correlation revealed moderate to substantially high positive correlations between the factors (*r* = 0.406–0.880, *p* < 0.01). The correlation coefficients of factor 1 and factor 2 were the highest (*r* = 0.880, *p* < 0.01), followed by the correlation coefficients of factor 1 and factor 3 (*r* = 0.820, *p* < 0.01).

**Table 2.** Pearson correlation coefficients between the five factors of the Anticipatory Grief Counseling Competency Scale (n = 251).


Note. \*\* *p* < 0.01 level (2-tailed).

#### *3.6. Descriptive Statistics of the AGCCS*

Table 3 presents the grand means and means of the scores for the five factors of the AGCCS, as well as their corresponding standard deviations. The grand means and standard deviations for factors 1, 2, 3, 4, and 5 were 57.10 ± 13.21, 41.05 ± 8.79, 28.90 ± 6.19, 26.84 ± 4.00, and 17.95 ± 3.29 points, respectively. The means ± standard deviations of each factor divided by the number of items ranked from high to low were as follows: factor 4: 3.83 ± 0.57, followed by the means ± standard deviations of factor 5 (3.59 ± 0.66), factor 3 (3.21 ± 0.69), factor 2 (3.16 ± 0.68), and factor 1 (3.01 ± 0.70).

**Table 3.** Grand means, means, and standard deviations of the five factors of the Anticipatory Grief Counseling Competency Scale (n = 251).


Abbreviation: SD, standard deviation.

#### **4. Discussion**

In this study, we developed and evaluated the content and validity, and internal consistency of the AGCCS for nurses. As recommended by Polit and Beck [26], the evaluation by seven experts revealed that the scale had an I-CVI and S-CVI of 0.99 and 0.93, respectively—indicating high expert content validity of individual items and the overall scale, respectively.

Rather than principal axis factoring (PAF) and PCA with promax and direct oblimin, we used PCA with promax rotation, with an oblique solution for the rotation, because most item–item correlations were >0.30. [25] The KMO measure was 0.965, and the MSA of individual items ranged between 0.884 and 0.987 (i.e., >0.60) [25]. The Bartlett test of sphericity was significant (*p* < 0.001). These values indicate sampling adequacy and initial factor extraction. The 25 Factors 1, 2, 3, 4, and 5 explained 52.18%, 8.08%, 5.40%, 2.67%, and 2.47% of the variance, respectively; moreover, all five factors explained 70.81% of the total variance. Factor 1 explained 50% more variance than the other four factors. Although factors 3, 4, and 5 explained <5% of the variance, their eigenvalues were >1. In addition, the scree plot in Figure 2 presents all five factors [25]. We also reported the pattern and structure matrices for obliquely rotated solutions and named the five factors according to their items [25].

The results of the contrasted group's method demonstrated that the mean AGCCS scores were significantly higher for the participants who had cared for family, relatives, or friends with anticipatory grief than those who had not (176.47 vs. 166.19). The contrasted group's method was used to confirm the construct validity of the AGCCS, whereby the validity was examined on the basis of the degree to which the AGCCS demonstrated different scores for the groups known to have varying AGCCS scores [26]. Nurses who have cared for family, relatives, or friends with anticipatory grief may learn how to assess, plan, manage, and evaluate anticipatory grief by reflecting and working on improving their anticipatory grief counseling competency. Real-word experience presents powerful learning opportunities by situating nurses in authentic settings relevant to their clinical roles [5]. Competency in anticipatory grief counseling varies considerably depending on whether the nurses had cared for family, relatives, or friends with anticipatory grief, but not depending on their age. These results are identical to those of Cicchetti et al. [18] and Hsieh et al. [21]. In recent years, grief-related courses have been added to the curriculum of nursing schools in Taiwan. In the past, no similar courses or anticipatory grief courses were available, which resulted in insufficient nurse willingness toward and competency in anticipatory grief counseling. Presumably, because of their own experiences with anticipatory grief, nurses became highly aware of anticipatory grief reactions and their consequences. As a result of their empathy, they became more willing to offer anticipatory grief counseling for others with identical problems. Because of their anticipatory grief experiences or selfawareness and traits, they became more likely to focus on anticipatory grief responses in patients with terminal cancer and their caregivers. Therefore, they became more aware of anticipatory grief responses and their importance. These outcomes are similar to those reported in a previous study [27].

In the pilot and formal studies, the Cronbach α of the overall scale was 0.975 and 0.981, respectively. The internal consistency reliability of the five factors ranged from 0.869 to 0.974, indicating high reliability (>0.80), and the reliability value was slightly higher than that reported by Cicchetti18 for the GCCS, and no multicollinearity was observed among the reported issues [24,26]. The high internal consistency reliability of the AGCCS may be attributable to the inclusion of more items than those included by Cicchetti [18] and because the scale specifically measures the participants' anticipatory grief counseling competency and the homogeneity among the participants in this respect [28]. This is consistent with the results of the GCCS [17,18], which was developed to measure master-level counselors involved in rehabilitation counseling. The scale was developed using the core competencies of palliative care in Canada [7] as well as spiritual care competency [21] and spiritual care nursing interventions [22] as references.

In this study, a substantially strong correlation [29] was observed between factors 1 and 2 and between factors 1 and 3. This can be explained by the fact that nurses are better able to provide anticipatory grief interventions and conduct anticipatory grief counseling when they can recognize, assess, and validate anticipatory grief and enhance clients' selfexpression and management skills in nursing care. Regarding the means ± standard deviations of each factor divided by the number of items, factor 4 showed the highest mean, followed by factors 5, 3, 2, and 1. Nurses usually possessed personal experience, self-awareness, traits, counseling perspective, and competency of anticipatory grief, as well as competency in respecting, accepting, and listening to anticipatory grief and interprofessional collaboration for anticipatory grief if their workload was low. Thus, they rated factor 4 and 5 items higher than factor 1 to 3 items. The mean of factor 1 was the lowest because the participants lacked training on the identification, assessment, and notification of anticipatory grief and enhancement of clients' self-expression and management at school or in-service education. This competency can be strengthened through a series of workshops and bedside teaching methods (e.g., Objective Structured Clinical Examination and trusted professional activities based on competency) [30,31]. However, a single training session is insufficient for nurses to gain confidence in their grief counseling skills and conceptual knowledge [32].

This study has several limitations. First, this study was conducted in a single hospital, limiting the generalizability of the results. Nevertheless, the AGCCS may be used by other hospital's nurses to assess nurses' anticipatory grief counseling competency in the future and design in-service education programs. Second, the 53-item AGCCS was developed and tested in this study. Future studies can shorten it and test the construct validity of the shortened scale by using confirmatory factor analysis.

#### **5. Conclusions**

The five factors assessed for the AGCCS were significantly correlated and accounted for 70.81% of the total variance. The scale exhibited satisfactory content validity, internal consistency reliability, and construct validity. The AGCCS can be used to measure nurses' competency in anticipatory grief counseling for patients with terminal cancer, their caregivers, or patients with acute trauma, thus improving their quality of care. Therefore, the AGCCS can aid in the planning and evaluation of in-service education.

**Author Contributions:** Study Design, C.-C.H. and S.-I.H.; Data Collection, C.-C.H.; Data Analysis, S.-I.H.; Manuscript Preparation: C.-C.H. and S.-I.H.; Final Manuscript Approval, C.-C.H., S.-I.H., C.-Y.K. and T.-P.C. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research was funded by the Chang Gung Memorial Research Grant of the Chang Gung Medical Foundation (CMRPG6J0311).

**Institutional Review Board Statement:** The study was approved by the Institutional Review Board (IRB) of a medical center in northern Taiwan (201901235B0A3, 14 October 2019).

**Informed Consent Statement:** Written informed consent has been obtained from all participants to publish this paper.

**Data Availability Statement:** The datasets used and analyzed in this study are not available be-cause of the ethics restrictions set by the IRB.

**Acknowledgments:** The authors would like to thank all the clinical nurses who participated in this study.

**Conflicts of Interest:** The authors declare no conflict of interest.



**Table A1.** Results of exploratory factor analysis using principal component analysis with Promax rotation (n = 251).



*Healthcare* **2023**, *11*, 264

**Table A1.** *Cont.*




76

### **References**


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## *Article* **Do You Feel Safe at Home? A Qualitative Study among Home-Dwelling Older Adults with Advanced Incurable Cancer**

**Ellen Karine Grov 1,\* ,† and Siri Ytrehus 2,†**


**Abstract:** Many older adults with cancer prefer to live at home, and home treatment and outpatient care have been recommended for such patients. To improve their mental health, it is important to identify the challenges that are faced by home-dwelling older adults with cancer. This study aimed to examine the impact of the home on older adults with advanced cancer who were receiving treatment and follow-up care. In a cross-sectional design with criterion-based sampling, eight qualitative interviews were transcribed and interpreted thematically. We identified three themes of home-safety management: good home-safety management, uncertain home-safety management, and home-safety management collapse. Moreover, we revealed eight sub-themes important to the participants' home-safety experience. Ensuring that older adults feel safe at home will afford them the opportunity to enjoy living at home, which in turn may alleviate their symptom burden and enhance their mental health.

**Keywords:** cancer care; older adults; mental health; feeling safe; home-dwelling

**Citation:** Grov, E.K.; Ytrehus, S. Do You Feel Safe at Home? A Qualitative Study among Home-Dwelling Older Adults with Advanced Incurable Cancer. *Healthcare* **2022**, *10*, 2384. https://doi.org/10.3390/ healthcare10122384

Academic Editor: Paolo Cotogni

Received: 25 October 2022 Accepted: 20 November 2022 Published: 28 November 2022

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

#### **1. Introduction**

As the World Health Organization states, mental health " . . . goes beyond the mere absence of a mental health condition" and includes, e.g., social, cultural, and other interrelated factors contributing to mental health [1]. With this broad definition, we assume safety and reduced risk of harm as aspects of mental health on both system and individual levels. Thus, with support from a Finnish study, we argue that mental well-being and dwelling in a safe environment are linked together [2]. Over the past few decades, health authorities have underscored the role that the home plays in the lives of older adults with advanced health problems and the need for home care and social services [3–6]. The relationships that older adults share with their homes and communities have been gaining renewed research attention as a result of the increase in the number of older adults and the commonness of a combination of out-patient treatment services and home-based care and treatment. Many older adults continue to live in their own homes even when they have advanced cancer, receive advanced treatment, and follow-up palliative care [7–9].

Currently, in many countries, health care service providers assume that home-based care is more cost effective than institutional care [10], and it is assumed that older adults wish to continue living in their homes for as long as possible [11]. However, some of these assumptions have been questioned [11,12].

#### *1.1. The Meaning of a Home to Older Adults*

Across the fields of social geography, sociology, and gerontology, the dominating perspective on homes is that the home should be understood not only as a physical space within which various events take place but also as an entity that is influenced by both emotional, mental, and social factors [13,14]. Different conceptualisations of a home have been documented in the literature [13]. Research studies on older adults and their homes have focused on the meaning that older adults ascribe to the physical, emotional, mental, and social dimensions of a home. The importance of the social and emotional dimensions of a home have been repeatedly underscored, and safety, which is one aspect of these dimensions, has been regarded as a central component of attachment between a person and his or her home [15]. The feeling of safety that a home engenders is emphasised as a fundamental sense of safety or ontological security that is embedded within the material surroundings [16].

#### *1.2. The Home and Older Adults with Cancer*

Relatively little is known about the assistance that older adults with cancer need [17–19], their experience of having advanced incurable cancer while living at home [20], and the effects of treatment on their mental and social functioning [21,22]. Similarly, little is known about the meanings that home-dwelling older adults with advanced cancer assign to a home whilst living alone. It can be very difficult to live alone under such circumstances [9,17,19,23]. Older adults are likely to be dependent on others (who often do not belong to the household) for all of their activities. Living alone can exacerbate their sense of uncertainty about the future [23,24]. Older adults with cancer who live in rural areas are a particularly vulnerable group [19,25–27]. Long distances to hospitals can limit their access to requisite help [28,29]. Furthermore, they have to travel afar to gain access to treatment services and health institutions. Norwegian studies, which were conducted among home-dwelling older adults with cancer in rural areas, found that older adults consider waiting for transportation and uncomfortable post-treatment transportation to their homes to be sources of great distress [19,25].

Palliative care research has focused on the therapeutic role that close physical surroundings in in-patient settings play during this final phase of life [30,31]. Palliative care research studies have shown that older adults prefer to die in their own homes [30,32,33]. However, this contention has been challenged because the pertinent studies have not adequately accounted for the alternatives that are available to them. There have only been a few attempts to examine safety initiatives within the home care sector [34,35]. Within a patient's home, his or her safety is inextricably linked to that of his or her carer [34]. Trusting staff, being comfortable and well informed, and engaging in daily life activities contribute to well-being and a sense of security among those who receive palliative home care [35,36]. However, there is a lack of research findings on the dimensions of a home that contribute to a sense of safety.

Therefore, this study aimed to identify the dimensions of a home that older adults consider to be important and examine the role that advanced cancer plays in the meanings that older adults with this disease assign to their homes and their feelings of safety and mental well-being when living at home. The resultant findings can be used to develop strategies that promote the safety of home-dwelling older adults with serious health problems and accommodate their extensive needs for assistance. We have outlined the following questions for this study: what role does the home play for the older adults living at home with an advanced cancer disease, what role does the disease play in the meaning of the home, and which dimensions of the home are highlighted as significant?

#### **2. Methodology**

Qualitative research methods facilitate the identification of the nuances of the relationships that individuals share with spaces [37,38]. Therefore, a qualitative cross-sectional research design was adopted in this study with criterion sampling, and we found thematic analysis suitable for data navigation [39].

#### *2.1. Recruitment Strategy and Sample*

In this study, participants were recruited in collaboration with nurses in the home care service representing four municipalities. Older adults who met the inclusion criteria received documents that (a) requested their participation in the study, (b) provided information about the study, and (c) required them to provide informed consent. Their responses to the request were relayed to the researcher. Men and women who were older than 60 years and had advanced incurable cancer were eligible for inclusion. The exclusion criteria were as follows: individuals with a cognitive impairment or a condition (e.g., terminally ill patients) that interferes with their ability to participate in an interview. A total of eight older adults from the four municipalities agreed to participate in this study. This study comprises of municipalities with 10,000–25,000 inhabitants, defined by us as rural or sub-urban.

The ages of the participants ranged from 60 to 86 years (Table 1). Five of them were men, and three of them were women. Three of them lived alone, and the others lived with a partner or spouse. They all lived in their own private homes. The participants had the following different types of cancer: breast, colorectal, prostate, bladder, oesophageal, and oesophageal and tracheal cancer. One participant had more than one type of cancer. All participants demonstrated poor functioning and had major health problems, which were caused by cancer, but the consequences of cancer and health problems varied across participants. We had no access to the participants' medical or nursing record. With these limitations, we have no objective assessment as Karnofsky or ECOG performance status. Thus, we have described their health conditions in the same way that they told us and based on our assessment. Both authors have practiced as nurses for several decades. All the participants received public or private assistance.

**Gender, Age, Living Arrangements Disease/Function/ Health Issues Assistance Help from Partner/Family** A. Male, 74 years old, lives with wife. Lung cancer with metastasis to colon. Leakage from colon following surgery. Breathing problems and poor mobility due to hip problems. Was able to go out to his own car until a few months ago. Can barely walk up and down stairs. Previous heart attack and thrombosis. Uses several medicines. Private home services. Son helps with shopping. B. Male, 78 years old, lives alone. Prostate cancer with metastasis to bones. Chemotherapy, no curative intention. Out-patient treatment. Very weak during weekly chemotherapy. Severe pain and uses morphine-based pain relief plasters. Weak and tired, sleeps poorly, and anxiety issues. Confusion, but he attributes this to sleep medication. COPD. Has venous access port (VAP), and urinary catheter. Receives treatment from various hospitals: national cancer hospital, central hospital, and local hospital. Some private home health services. Some help from neighbours. C. Male, 82 years old, lives with wife. Bone marrow cancer, back fracture, operated to stabilise joints. In a lot of pain, reduced vision, and swollen legs. Chemotherapy and morphine-based plasters. Eating problems. Needs help to get out of bed and help to move around. Home care nurse assists with medication administration. Wife helps moving around indoors. D. Female, 60 years old, lives with husband. Breast cancer with pelvic and head metastasis. Somewhat disoriented due to the metastasis to the head. Coordination problems. Weight loss during treatment. Previous hip fracture still bothering her. Unable to go out on her own. Home care nurse. Days in a palliative unit. Followed up by primary physician. Husband helps with all practical tasks at home. He also helps his wife moving indoors and outdoors.

**Table 1.** Description of participants by gender, age, living arrangements, disease and health issues, public health services, and help from family/partner.


#### **Table 1.** *Cont.*

#### *2.2. Interviews*

A semi-structured interview guide that covered specific topics, which were identified from the literature, was developed. The interviews were conducted in the participants' homes. The participants reported that they felt relaxed during the interview, and they were given the opportunity to show us their homes. In the first interview, both authors served as active interviewers. The intention was to harmonise the way the interviews were conducted, and the data were collected. Regarding the other interviews, the first and last author conducted four and three interviews, respectively. The interviews were conducted with the assistance of the interview guide. The following are a few sample questions: can you describe what it is like to live at home when you have cancer? What does being able to live at home mean to you? What kind of help do you receive, and what are your experiences of receiving such help? Follow-up questions were used to facilitate further reflection upon and exploration of participants' experiences. Such questions were: how do you deal with daily activities at home? Do you find any tasks challenging? Please tell about making meals. Follow-up questions on shopping and cooking were conducted. What does this house mean to you? Please describe what is preferable, if so, of staying at home despite your serious illness. Are you able to walk outdoors? Do you need help from others to make the bed and clean the house? Who are your helpers? Are you receiving support or help from the home care nursing service?

Each interview lasted for 70 to 120 min. The spouses or partners of the participants participated in four interviews. They participated because the older adults wanted them to.

All the interviews were recorded and transcribed. The names and locations of the participants were deidentified during transcription. In this article, we present parts of the interviews, where 'I' refers to the interviewer and A-H are letters representing the patients' voice. We have connected the letters A-H to the quotations, a system that corresponds to the tables.

#### *2.3. Analysis*

Thematic analysis was used [39] whereby the data were analysed from quotations through sub-themes and themes ending with an overarching theme. Firstly, we became familiar with the data, a process which had already started while interviewing the participants. We separately read the transcripts and the noted text parts (coding units) and then in face-to-face meetings, we discussed our understanding of what we interpreted as the essential meaning. The authors always had the research questions in mind (the home's role for the patient, and the disease's impact on the meaning of the home). No software was used for the thematic analysis, as the authors wanted to read the text several times and wanted closeness to the data. From the text parts (coding unites), we identified central quotations and from these, we suggested and discussed sub-themes, themes, and the overarching theme. In the dialogue, we viewed the overarching theme, the themes and the sub-themes the other way—by turning back to the quotations. In Table 2, we present descriptions of 'good home-safety management'; 'uncertain home-safety management' and 'home-safety management collapse'. Each of the sub-themes have connected quotations in the text and we have used headings corresponding to the sub-themes and themes in the Results session.

**Table 2.** The overarching theme 'home-safe management' with themes and sub-themes.


However, we have exceeded the analysis to show our interpretation of each of the participants' positions on home-safety management. In Table 3, we provide a schematic overview of our analysis presented in four phases. In phase 1, we systematically examined and reviewed the transcripts and coded the data by critically analysing the text. We found descriptions of the home as a point of departure, where the dimension of the home included the environment, the house and the role that cancer played in the participants' lives as well as the life situation with the availability of a partner, family or neighbours.

In phase 2, we shed light on what impacts each participant experienced, and a personcentred perspective from the participants (A–H) and contextual analysis [38] was conducted to examine the significance of various dimensions of the home in relation to each participant's overall life situation. In this analytic phase, we directed our attention towards the sub-themes (referred in Table 3) that had emerged from the interview data of each participant. The aspects of the participants' life situations were embedded within the interview data, and we therefore classified this phase with dimensions of the participants' life situation. Phase 3 focuses on the analytical approach, which allowed us to understand the meanings that the older adults with advanced cancer ascribed to a home. The disease is present for the participants, and we have labelled this phase 'the disease's role in the meaning of the home'. In phase 4, the themes of home-safety management were described, and the characteristics of the participants' home-safety management were identified. The matrix presented in Table 3 summarises the phases of this analytical process.

#### *2.4. Ethics*

The Regional Committees for Medical and Health Research Ethics (no.1524) and the chief health officer in each municipality approved this study. The data were stored in a secure location during the study and will be moved to the Norwegian Sikt (https://sikt.no/) (accessed on 24 October 2022).

**Table 3.** Schematic overview of analysis phases and the characteristics of the participants and their connected home-safety management.


Data services and storage (giving data access in the Norwegian language) will be conducted after the completion of the study. The participants provided informed consent, and they were informed about their right to withdraw from the study at any time.

#### **3. Results**

#### *3.1. Good Home-Safety Management*

This theme comprises of the informants' descriptions on their wish to stay at home and their feeling of being safe at home. Several participants wanted to continue living in their own homes, despite their extensive health issues and uncertainty about the progress of their disease. They wished to maintain the home as it was and reported that they thrived when they were at home and experienced well-being there.

#### *3.2. Valuable Characteristics of the Homes—Predictability and House Quality*

The health issues of some participants made them particularly aware of the value of their home. Two male participants expressed their gratitude for being able to continue living in their homes. The disease had forced them to give up engaging in a variety of activities. They reported that their homes afforded them the opportunity to spend time outdoors. One of them emphasised the satisfaction, mental well-being, and pride that he derived from living in a single-family dwelling and being able to walk in the garden that surrounded his house. He reported that this was something that he did not take for granted, given his high age and his advanced disease.

*C: Well, yes, that's how it is. We're lucky to be alive; we're the oldest people around here, more or less. Oh, we are just so grateful for this!*

*I: Yes.*

*C: We're really doing fine. We can walk outdoors, you know.*

One of the other participants in this theme had advanced metastatic cancer and needed assistance with most daily tasks, including mobility. The disease prevented him from travelling or going for walks. The activities that he engaged in in his home were a positive compensation for the activities that he had to give up.

*A: We have not gone any further than the terrace and the deck. But it's amazing how great that can be too.*

*I: Yes.*

*A: We've said a few times, this summer, that this hotel here is certainly a pretty good place to live.*

#### *3.3. Caregiver Availability and Close Relationship*

Both these men lived with a partner who played a central role in their current lives. The partners actively participated in the interviews. The men emphasised that their female partners had taken on substantial and necessary responsibilities for their care. Both stated that they would not have been able to live at home without their partners. They both said that they felt safe and wanted to continue living in their current home.

One of the female participants (E) expressed a strong desire to continue living in her home. Her partner also participated in the interview. She lived in an old apartment building that was located at the centre of a mid-size municipality. Her living conditions were significantly poorer than those of the other participants. It was difficult to access the apartment because it had a steep staircase. She had to exit the apartment to use the bathroom and toilet. Nevertheless, she strongly emphasised that she wished to continue living in her home. The municipality had offered her a new and better-adapted house in an assisted living facility. She and her partner had declined this offer. Her partner was better informed about the disease and treatment than she was. Indeed, he reported that he was responsible for contacting the health services and he was involved in performing other household tasks. However, his contributions were different from those of the other partners. Specifically, neither he nor the woman explicitly emphasised that his contribution played a decisive role in her ability to continue living in her home. The participant repeated several times during the interview that she was independent.

*E: "I want to stay here. He wants to stay here. This is our home!"*

#### *3.4. Activities, Memories, and Independent Life in the Home*

A third male participant in this theme of good home-safety management had advanced prostate cancer. He lived alone in a single-family dwelling with a garden in a rural area. He had always lived alone. He faced many challenges as a result of his cancer. He reported a series of problems, such as the following, for which it had been difficult to receive help: pain, problems with mobility, incontinence, and uncertainties about changes in and the progress of the disease. Nevertheless, he emphasised that he thrived, felt safe at home, and was able to make his own decisions. Furthermore, he was surrounded by familiar objects and lived in an environment that he had a part in creating. He also spoke about his interest in interior design.

*I: You have said a bit about wanting to live at home. What does that mean to you? B: Quite a lot.*

*I: Could you say a bit more about this? In which way?*

*B: I feel good here.*

*I: What is it that makes you feel good here?*

*B: My surroundings—they're just what I want.*

*I: How's that?*

*B: Furniture, curtains. I sew it all myself. I sew curtains for people too.*

He wished to continue living in his home. His stories about his exhausting treatment journeys made it apparent that he had taken great efforts to continue living in his home.

*B: What was exhausting was the bus drive with the Health Express from X (located far away from the specialist hospital) and down to XX (specialist hospital) and back. It took six hours.*

*I: Yes.*

*B: It was exhausting, but I had to get home to my own bed and my cat.*

#### *3.5. Uncertain Home-Safety Management*

In this theme, we revealed a lot of uncertainty. This was expressed in terms of concerns about the home being the right dwelling place and the feeling of being insecure at home and uncertainty about the future because of the disease's progression. In some individuals, the disease created a sense of uncertainty about whether they ought to move. This was the case for participants who lived alone in single-family dwellings. They did not know what sort of assistance they would need in the future and how the disease would progress; therefore, they considered moving. However, both participants expressed that they felt safe at home at the time of the interview. Thus, they had considered moving because the disease had created uncertainty about the future, not because they were dissatisfied with their home or regarded it as being unsafe. They no longer took their homes for granted.

#### *3.6. Independent but Unprotected*

One participant considered a range of alternative places to which he could move, but he had not decided about what he wanted to do. His current home was important to him. This made it difficult for him to move. He also emphasised the following factors: his independence, the substantial effort that he had invested in maintaining his home, the fact that it had a terrace, and his emotional attachment to his home.

*H: There was an advertisement where they wanted new tenants. I thought, 'This would be good for me'. I went up to look at it. It's nice. It is one of those terraced house things. There was assistance twenty-four hours a day. I could get food served.*

*I: Yes.*

*H: But then, I sit here at night. I have, after all, spent some time on building this conservatory. I: It's really nice.*

*H: I just really love this place here.*

#### *3.7. Feeling Insecure about Living Alone*

When participant H spoke about his feelings of uncertainty and mentioned that he had been looking for a new home, he added:

*H: I was a bit scared then. You know, it is a bit difficult for me to get out of this place. I just had no intention of selling; I thought I would rent. But, if I leave here. I couldn't do it.*

The female participant (F) described that she was dependent on her husband, and without him she could not cope with her situation at home. Two cancer diagnoses, dizziness and balance problems resulted in her story about feeling insecure in a scenario living alone. *F: My husband helps with all the practical tasks at home.*

### *3.8. Home-Safety Management Collapse*

The informants defined to be in the 'home-safety management collapse' theme expressed challenges regarding their life situation and disease progression. They wanted to move because they felt unsafe at home.

#### *3.9. Spending Parts of the Day Alone in the Home*

Only two of the eight participants reported that they felt unsafe at home. Both spent considerable parts of their day alone. In both the participants, cancer had resulted in difficulties with mobility and pain. One participant was a woman who was living in a terraced house with her partner. Her partner worked full time and was away during the day. The other participant was a man who lived alone in an apartment on the first floor of a single-family dwelling. His adult son and his partner lived on the ground floor.

*D: My husband is at work the whole day.*

#### *3.10. High Symptom Burden*

The female participant had breast cancer with pelvic and brain metastasis. She reported a long-term disease trajectory, many hospital stays, and long periods where she had endured great difficulties in receiving the necessary help from health care services, especially when the symptoms of the metastasis of breast cancer had emerged. At the time of the interview, her disease status was stable. She had experienced several fractures and undergone several operations (including surgery to stabilise the joints) as a result of her cancer. She had fallen and was injured several times. She reported pain and several symptoms, which can reasonably be attributed to metastasis to the brain. She reported that she felt very unsafe when she was alone at home.

*D:* . . . *back home, here, afterwards, you know, and being alone, when my husband went to work. At the hospital, they would rather get rid of me. They were looking for a place where I could go to stay, and yeah, get some training or something.*

After a long process, she was informed that she could stay in a palliative care unit for a few days. She found this solution to be satisfactory.

The other participant, categorized here, was in great pain. He had comorbidities (cancer and diabetes) and complications due to his diseases:

*G: All my toes on one of my feet are amputated.*

#### *3.11. Unable to Move Around*

The latter mentioned male participant who reported feeling unsafe at home expressed a strong desire to move and permanently live in a nursing home. He lived in the same house in which his son was living. His son was away during the day. The participant spent most of his day passively sitting in a chair. He explained that he wished to move because he felt unsafe when he was alone at home and faced challenges when he performed daily tasks. He referred to a respite stay that he had got access to in a nursing home. There he had felt safe and had received the help that he needed.

*G: I am not able to move around. I am stuck here in this chair.*

#### **4. Discussion**

In this study, we examined how older adults with advanced cancer experience their homes, identified the dimensions of their homes that they consider to be important for their home-safety, and investigated the role that cancer plays in the meanings that they assign to their homes. The overarching theme of home-safety management is outlined with three themes.

Theories on late modern societies regard the home as a place that offers shelter and safety. The role that homes play in fostering a sense of security and mental well-being is particularly important because of constant changes in and the occasional unpredictability of societal conditions [16]. Advanced cancer causes unpredictable changes to an individual's abilities, mental health, and experience of their life situation. Accordingly, the need to identify the factors that determine whether older adults feel safe in their own homes has been previously underscored [40]. From this study, we have learned that older adults enjoy living in their homes, and their homes had positive dimensions that enhanced their daily lives. The significant dimensions of the home that were emphasised by the participants were pleasure from the features of their homes, having opportunities to engage in activities, being

independent, taking pride in their homes, being grateful for the opportunity to be outdoors, and having access to a garden. Thus, homes can alleviate the negative consequences of cancer and optimize well-being. In such contexts, it is important to conceptualise the relationship between the disease, the mental health status, and the home as a dynamic whole. Specifically, home-safety can relegate cancer to one's mental status, and cancer in turn can make older adults particularly aware of the various valued aspects of their homes. In this regard, the home may serve as a stimulus and represent something positive.

From an older adult's perspective, feelings of safety are an intermediary dimension and condition. For a positive synergy to exist between an older adult and his or her home, he or she must feel safe. The possibility of leading the life that one wishes to live can help older adults feel safe in their own homes [41]. According to Giddens (1991), a sense of safety is related to unconscious psychological aspects. By the overarching theme of home-safety management with its themes and sub-themes, we articulate the role that serious illnesses such as advanced cancer play in one's sense of safety. A sense of safety, which may otherwise be an unconscious and taken-for-granted feeling state, can emerge as an issue that older adults consciously reflect upon and address. Partners play an essential role in this preparatory process. Sharing their homes with their families or partner helped the participants maintain their home, enjoy it, and feel safe in their homes. In this regard, the partners of those with several health issues and those who required substantial assistance made substantial contributions. Their home-safety was maintained because of the contributions of their partners. Concordantly, Aspell et al. (2019) [3] found that the intensity of home support was a predictor of admission to long-term care among home-dwelling older adults. Another study found that older adults in nursing homes feel safer than their home-dwelling counterparts do; this finding is attributable to the easier access to health care personnel [40]. In our study, some participants who lived alone wanted to continue living in their homes, despite facing many difficulties and having health issues. Despite having an advanced disease and a great need for assistance, some older adults felt safe living alone in their own homes.

Decades of research have shown that caring for seriously ill home-dwelling older adults is a great burden to their families [42]. In our study, the partners of some participants had assumed responsibility for home-safety management. Home-safety management can be experienced in different ways and to different extents and can foster a sense of perceived control in older adults. Other studies have shown that maintaining some level of control over one's life when moving into a nursing home influences one's sense of safety [43]. Some older adults recognised and placed substantial emphasis on their dependence on their partner. However, some older adults did not recognise their need for help and dependence, and their partner's contributions were not explicitly acknowledged. Although the partners were responsible for home-safety management, the participants had not explicitly handed over the responsibility to their partners. This may have affected how both parties experienced this situation and contributed to their burden. In accordance with Wahl and Lang's (2006) description of attachment between a person and his or her home, the present findings delineate specific social and emotional dimensions.

Unsurprisingly, some felt uncertain about continuing to live at home. They did not know how their disease could progress and how their life situations might change in the future. When older adults live alone and become dependent on others, uncertainty regarding their home-safety management levels may arise. However, they may not know when and how dependence will happen and what kind of help they will be offered. Thus, he or she is in a moratorium. To a certain degree, they may be aware of their life situation and may think of possible solutions. Several studies have highlighted the particular challenges that are faced by home-dwelling older adults in rural areas who have to travel long distances to receive health care and social services [19,28].

Feeling safe is a precondition for a sense of meaning, mental well-being, and enjoyment of one's home. By conceptualising the home as a space that fosters meaning, safety, and routinised practice, we acknowledge that perceptions of homes are influenced by

innumerable experiences that can change in the future [30,44]. Thus, a home has different meanings to different older cancer patients, and these meanings can change with time. A sense of safety and the possibility of maintaining a routinised practice may diminish, depending on personal and household resources and resources in the surroundings. From a recently published article, the authors emphasize discharge planning for end-stage cancer patients [45]. We assume that the same promoting and barrier factors as ethical considerations, and self-efficacy and experience among nurses are also relevant for other countries such as Japan, where discharge planning was studied. A study from Scandinavia shows that good collaboration across health systems [7] has positive effects on the perceived safety of home-dwelling older adults. In our study, some participants felt unsafe even though they shared their homes with their partner or family. This was attributable to prior experiences of difficulties in getting the necessary help, difficulties coping on a daily basis, mobility issues, a fear of falling, and a general sense of uncertainty. The extent of help those older adults require plays a significant role in their sense of safety; severe health issues can reduce their sense of control and, consequently, perceived safety [40]. Thus, receiving proper treatment and care does not guarantee a sense of safety [46].

By examining whether older adults perceive their homes to be spaces within which they feel safe or insecure and unsafe, health care and social services can ascertain the perceived home-safety management levels of older adults. When home-safety management is emphasised, health personnel and social workers should further assess the options that are available to older adults, particularly those with uncertain and collapsed homesafety managements.

The strength of this study is the data collected from a group of home-dwelling older adults with advanced cancer living in different areas in the country (rural and sub-urban municipalities). We did not aim to arrive at generalisable findings. Nevertheless, we acknowledge that using a larger sample may have yielded different results. The sample was sufficiently heterogeneous to facilitate the identification of the significant characteristics of home-safety management. Both male and female older adults with different marital status participated in this study. The participants had extensive and complex health problems. However, we are aware of the difficulties in defining patients to various stages of advanced cancer, as the palliative phase might also include the terminal phase [47]. Based on ethical considerations, we wanted to exclude those most vulnerable cancer patients, defined by us to be in the terminal phase. Through the thematic analysis, the authors engaged in a valuable dialogue, seeking interpretations to understand the data. A limitation in this study is the sample, where patient groups, such as those from ethnic minorities, were not included. The participants were not asked to provide feedback on the results. However, transparent description of the reflexive analytical process should enhance the study's trustworthiness [48]. No software was used for the thematic analysis, and NVivo or other software could have organised the data in a different way than what we did manually.

This study might serve in revealing the generation of hypotheses for further studies. We suggest that studies with large samples should be conducted and studies including urban-dwelling participants.

#### **5. Conclusions**

Home-safety management assessment could be an approach to obtain an overview of how home-dwelling older adults with advanced cancer describe their homes, life situation and how the disease impacts their meaning of their home. It is important to adopt a holistic approach to care and pay attention to individual differences in the feelings of being unsafe, which can arise from various situations. We have elaborated on a description of homesafety management and outlined three themes: good home-safety management, uncertain home-safety management, and home-safety management collapse. Modifying the home environment to foster a sense of home-safety may give older adults with advanced cancer the opportunity to experience mental well-being and enjoy living in their homes. This may alleviate the burden of living with cancer.

**Author Contributions:** Both authors have contributed equally to the project's development, writing the protocol, up-dating the literature review, writing the manuscript, and confirming the manuscript's text. All authors have read and agreed to the published version of the manuscript.

**Funding:** This study was funded by the Norwegian Cancer Society (grant number 59083001).

**Institutional Review Board Statement:** The Norwegian Regional Committees for Medical and Health Research Ethics (REK) (REK: #1524) approved this study. https://www.forskningsetikk.no/ en/about-us/our-committees-and-commission/rek/ (accessed on 31 December 2012 for the whole project; survey first—documented 2017 and 2020; then interviews—completed 12 December 2017, analyzed 2019–2021. Data is anonymized, i.e., the ID-key is deleted. The anonymized data is available at the SIKT from March 2023).

**Informed Consent Statement:** Informed consent was obtained from all of the subjects involved in the study.

**Data Availability Statement:** The data will be stored at the SIKT, previously the Norwegian Social Science Data Services (NSD), after completing the study. https://sikt.no/about-sikt (accessed on 24 October 2022).

**Conflicts of Interest:** The authors confirm that they have no individual, company, or organizationbased interests which involve financial or personal gain.

#### **References**


**Laura-Anne Aitken and Syeda Zakia Hossan \***

Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW 2006, Australia

**\*** Correspondence: zakia.hossain@sydney.edu.au; Tel.: +61-2-935-19340

**Abstract:** In Australia, breast cancer is one of the most common cancers affecting women. Between 1987–1991 and 2012–2016, the five-year survival rate improved from 75% to 91%. The increased chance of survival due to early detection and treatment interventions has resulted in more women living with the diagnosis. This qualitative study was designed to analyse the journey of breast cancer survivors, their experience of psychological distress and changes in quality of life (QOL) due to the increased prevalence amongst Australian women. In-depth interviews were conducted; they lasted over 45 min and comprised 15 participants. The main topics discussed were knowledge of breast cancer prior to diagnosis, psychological distress, QOL and experience of use of healthcare services. The results showed that the process of diagnosis, undergoing treatment and isolation post-treatment resulted in high amounts of psychological distress. A reduction in QOL was also experienced due to treatment and medication side effects, fatigue, cognitive changes, and body-image perception. These findings can assist researchers in providing evidence-based frameworks for policy changes and for further investigation into effective healthcare interventions.

**Keywords:** breast cancer; psychological distress; quality of life; women's health; qualitative study

**Citation:** Aitken, L.-A.; Hossan, S.Z. The Psychological Distress and Quality of Life of Breast Cancer Survivors in Sydney, Australia. *Healthcare* **2022**, *10*, 2017. https:// doi.org/10.3390/healthcare10102017

Academic Editor: Margaret Fitch

Received: 22 September 2022 Accepted: 11 October 2022 Published: 12 October 2022

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

### **1. Introduction**

Breast cancer is one of the most common causes of cancer-related deaths in women globally. It occurs when abnormal cells in the breast grow uncontrollably. It is more common among women; however, a small proportion of men also are affected by breast cancer [1]. After diagnosis, some common treatments that Breast Cancer Survivors (BCS) receive are a lumpectomy, mastectomy, chemotherapy or hormone therapy [2]. Due to the raised awareness and focus on early detection programs, survival is becoming increasingly likely for breast cancer patients [3]. Within Australia, breast cancer in 2016 was the most common cancer affecting women, with 330 new cases per 100,000 people [4]. Between 1987–1991 and 2012–2016, the five-year survival rate improved from 75% to 91%, increasing the number of survivors in the community [4]. This is due to increased awareness campaigns and breast screening availability provided by companies, including BreastScreen Australia [5]. BreastScreen Australia is the state and territory initiative of the Australian government to increase early detection and thus decrease illness and death. It allows women over 40 to have a free mammogram every two years [6].

For BCS, common issues range from treatment side effects [5], financial hardships [7] and comorbidities [8] to social isolation [9]. Many studies have assessed the health related QOL of BCS [5,10–12]; however, there is limited research that focuses on Australian women who have survived cancer and continue to experience its detrimental effects. QOL and psychological distress are essential patient-centred outcomes, assisting with assessing cancer care delivery. BCS is a medical and social label for all who live with cancer diagnosis until death, irrespective of the cause [13]. These BCS undergo considerable stress and trauma throughout diagnosis, treatment and post-treatment, which continues even after survival, subsequently impacting their QOL. The main factors identified in the literature as the significant causes of stress and trauma include psychological distress, financial stress and social isolation.

Studies have indicated that BCS experience mental health issues as soon as they are diagnosed with cancer, during treatment and survivorship. Two main concerns within psychological distress have been identified for BCS: mental health issues and distress surrounding cognitive function. One-fourth of breast cancer patients will develop anxiety and depression at some point in the breast cancer journey [14]. Those aged younger than 50 years are especially likely to report psychological distress [15,16] compared to the older cohort aged > 50 years. However, it is also said that 12 months post-diagnosis, most BCS have returned to pre-diagnosis levels of distress [17]. This discrepancy between studies highlights the importance of a study to outline mental health issues throughout the journey, rather than just certain checkpoints.

QOL is an individual's perception of their position in life, in the context of the culture and value system they live within along with their goals, expectations, standards and concerns [18]. It is clear from the review of the literature that various stressors have resulted in a reduction in QOL for BCS. Previous research on QOL has focused on understanding the QOL in the early phases of breast cancer and groups of older BCS [10]. Most of these studies, however, focused on survivors 10 years post-diagnosis. The conclusions drawn were similar, with the participants reporting low QOL with additional sexuality, pain and psychological distress issues. This was illustrated in a quantitative study with BCS between the ages of 40 and 49, which found that the presence of breast-related symptoms at the time of survey completion had a profound impact on QOL [5].

Within the literature, there is insufficient focus on the qualitative experience of Australian BCS from diagnosis to survivorship. Most of the literature available is based on quantitative studies, with limited research being available on the experiences of BCS. This research is an attempt to fill this gap. There has also been a focus on mental health and cognitive disorders such as struggles with depression and increased anxiety; However, there is a need for a greater understanding of the progression of these issues in Australian BCS throughout their entire BC journey.

This research aims to understand the journey undergone by BCS diagnosed with breast cancer from diagnosis to survivorship. Furthermore, it explores the challenges experienced by the BCS due to physical changes, financial hardship, emotional distress and social isolation The Australian healthcare system is unique due to the country's cultural diversity and different demographics. Understanding the experience of specifically Australian women with breast cancer is essential, as it will allow healthcare providers to understand the experiences of BCS in greater depth within the cultural context. This, in turn, may help facilitate greater sensitivity when treating their patients and assist in developing strategies and policies for BCS.

This cross-sectional exploratory research is based on a qualitative research method. It aims to understand the journey undergone by women, diagnosed with breast cancer, from diagnosis to survivorship. Further, it explores the challenges experienced by the BCS due to physical change, financial hardship, emotional distress and social isolation.

#### **2. Materials and Methods**

Eligible participants were BCS; they were aged 35 years and above, living in Sydney and had been diagnosed for at least a year. A total of 15 women with breast cancer were recruited for the study. Participants were excluded if they had been diagnosed less than one year ago to ensure all participants had completed their treatment. Participants that were diagnosed greater than 11 years prior were also excluded as they may not clearly recollect their early experience of diagnosis. Multiple strategies were used to recruit participants including snowball and convenience sampling, social media and community organisation advertising. For example, through the assistance of the organisation Pink Hope, a preventative health charity, we acquired participants using flyers. Advertising on social media gained the most traction, with participants sharing and passing on information to other survivors. Before recruitment commenced, ethics approval was obtained from the University of Sydney Human Research Ethics Committee (25 August 2021). The participants were also presented with the "Participant Information Statement" to ensure the study had informed consent and that participation was entirely voluntary and anonymous. The data were also saved in OneDrive and password-protected, and only researchers had access. These in-depth interviews were conducted over 45 min with 15 BCS. The first author participated in two days of training prior to the interviews commencing.

This specific qualitative method was chosen to ensure that the full experience of BCS was explored effectively. In particular, QOL was measured subjectively rather than using established measurement tools. Quantitative measurement of QOL qualifies experience's on a scale rather than exploring participants' experiences which was important for this study. In the in-depth interviews, the interviewer led the BCS through a series of openended questions to establish the experience of breast cancer diagnosis, treatment and living with the diagnosis (Appendix A). The interviews were conducted over 3 weeks in August and September 2021 and were recorded via Zoom. These in-depth interviews allow the participant to determine the direction of the interview and are, therefore, an effective method for an exploratory study [19].

A thematic analysis was conducted by researchers on the interviews [20]. Firstly, each interview was transcribed. An excel document was then prepared with each of the interview questions as titles. The responses from every participant relating to that question were then compiled for easy comparison. The first author then went through each response and highlighted common words and phrases used by the participants. These words and phrases were then grouped together to form the codes for each question. These codes were used to identify the common themes and to identify similarities between the BCS journeys.

#### **3. Results**

The main themes identified within this study were emotional and psychological distress throughout the journey of BCS, a reduction in QOL seen through social changes and physical symptoms and access to health services.

#### *3.1. Background Information*

#### 3.1.1. Sociodemographic Background

The sociodemographic background of the study participants is presented in Table 1. The average age of the study participants is 45 years, the youngest being aged 35 years. Participants had received their diagnosis between 1 and 11 years prior to the study. On average, 66% of participants were employed with education levels ranging from year 12 graduation to tertiary studies. The majority (80%) of participants were married and had between 1 and 4 children (See Table 1).

#### 3.1.2. Previous Knowledge of Breast Cancer

Participants were asked to recount the knowledge they had of symptoms, diagnosis and treatment of breast cancer prior to their diagnosis. Three participants had a family history of breast cancer and were more likely to be informed about breast cancer. Symptoms identified by the participants were lumps, swelling, sensitivity and pain in the breast. Around 66.7% of participants had heard of a mammogram before, and 40% knew of breast self-examination (BSE). The most common treatment identified was chemotherapy, with 73.3% reporting prior knowledge (see Table 2). Some of the comments by the study participant's symptoms, diagnosis and treatment of breast cancer are presented in Table 2.


**Table 1.** Sociodemographic Background.


**Table 2.** Breast cancer previous knowledge.

#### 3.1.3. Diagnosis of Breast Cancer

Participants were asked, "How did you find out you had breast cancer?" The three main methods of diagnosis were finding a breast lump through self-examination, noticing changes in their breasts and through ultrasounds and mammograms. Approximately 40% mentioned that, initially, they dismissed the symptoms as being hormonal or something less serious (See Table 3).

#### 3.1.4. Treatment of Breast Cancer

Of these 15 participants, the most common sources of treatment reported were chemotherapy, radiation and surgery. Out of the total participants, 86.6% had chemotherapy and 53% had radiation, and all the participants underwent surgery (the majority received a mastectomy 66.6%). Side effects from these treatments and the preventative medications were also highly reported to impact QOF (See Table 4).


**Table 3.** Experience of Breast Cancer. How did you find out you had breast cancer?

#### **Table 4.** Treatments % (n).


#### *3.2. Psychological and Emotional Distress*

The study participants were asked to share any experience they had of psychological or emotional distress. Open-ended questions were used to assist participants in outlining their experience during diagnosis, treatment and post-treatment. Responses were categorised under the broad themes and presented below:

#### 3.2.1. Experience of Receiving Diagnosis and Treatment of Breast Cancer

Most participants (46%) went into a state of shock when they received their diagnosis, with three of the fifteen participants reporting a memory loss or blurred memories of the moment and four others reporting a trauma response (hot flushes, anxiety).

Participant 010 described the experience as:

"My whole world just collapsed. And I think I just sat in his room for like 20 min wailing, feeling like I was gonna be sick."

Three of the fifteen participants reported crying, while four mentioned moving into "survival mode" to attack the problem pragmatically. Participant 008 stated that:

"First question was, out of my mouth was what are we doing about it? Tell me what to do next . . . I was very practical, very pragmatic."

#### 3.2.2. Treatment: Chemotherapy, Surgery and Radiation

Of the 15 BCS interviewed, 13 went through at least one round of chemotherapy, either pre- or post-surgery. About 40% of participants reported a feeling of losing their identity, and 33% reported feeling helpless. For example, participant 015 stated that:

"Chemo is terrible 'cause you lose not just your hair, you lose your eyelashes and your eyebrows, you lose absolutely everything . . . you just go grey, and again, it is the treatment that makes you sick . . . I found it overwhelming at times, I was quite emotional."

#### 3.2.3. Post-Treatment

After treatment had been completed, several BCS reported a lack of direction and support, which caused psychological distress. Due to the continuing side effects of medications, menopause and the abrupt nature of ending treatment, 40% of BCS report of feeling abandoned and isolated.

"I have had such a long time of treatment and now, I feel like I am going into this open water of not as much intensity." (P010)

Participant 011 also described the inability to deal with long-term medication side effects that caused considerable distress in many BCS.

"There is always an end in sight . . . you have the surgery, and then you want clear margins, and you get your diagnosis . . . You know how many treatments of chemotherapy you are having over a period of time, You know how many treatments of radiation you are having over a period of time. So, once you get through all of that they put you on this medication, which the side effects don't end . . . There is no end in sight." (P011)

#### 3.2.4. Anxious for Recurrence

A common phrase repeated amongst participants was "scanxiety" (3 participants), which describes the feeling of panic and stress before a check-up and scan. BCS also report a hyper awareness of aches and pains and how they jump to the conclusion of cancer quickly (46%). Four BCS described this anxiety as always being in the back of their minds and as constant stress. Participant 008 especially struggled with this stress and described her experience:

"Biggest thing that I battle with all the time, it's always there. It may not rear its ugly head every day, but it is always at the back of your mind, always." (P008)

#### *3.3. Quality of Life*

Open-ended questions were asked about the impact of breast cancer on the QOL of the study participants. These questions focused on daily activities, sleep, fatigue, cognition, physical body image and sexuality. The three main themes that contributed to changes in QOL were physical symptoms, support network issues and finally accessibility to services.

#### 3.3.1. Physical Symptoms

Several common symptoms impacted the QOL of BCS. These included the inability to sleep, increased fatigue, chemo fog, vaginal dryness and changes in body image. Almost all BCS reported having issues with the perception of their bodies. The majority reported embarrassment of their bodies, particularly how they look in front of others, feeling unattractive to partners and a reduction in self-esteem. Five of the study participants highlighted concerns with the reconstructions, while three BCS outlined how not having nipples contributed to this issue. Participant 006 linked her issues with body image to her relationship with her husband and her sexuality.

"Now it is just very obvious I don't have nipples, but they are just it looks like I've been massacred. And my husband is a bit sad about it all [chuckle]. Unfortunately, men are very . . . They're quite visual creatures, unfortunately, in my experience, from what I've seen, but he's very understanding, and I think it's more the problem of the menopause, which is why sex life is dwindling." (P006)

Some BCS did report that cutting off their own hair before it fell out was a way to regain some control.

"I did make a pre-emptive strike to cut off my hair, but not straight away, 'cause I used to have really long, curly hair, and I thought, Well, that's something . . . Like I think a lot of women, something you can control." (P007)

Difficulties sleeping were reported by 66% of the BCS, while the other four participants had no issues with sleeping. Four BCS mentioned that hot flushes and side effects from menopause are the reason for this poor sleep, whereas two others associated poor sleep with an overactive mind. Three BCS use sleeping tablets and melatonin to get to sleep.

"So not very good sleep to begin with and the chemo, I couldn't sleep, I couldn't . . . I just felt sick the whole time. Trying to sleep when you're feeling nausea, wasn't fun, so it was very difficult trying to sleep and then getting up and smells really affected me." (P014)

Fatigue not only impacts BCS during chemotherapy but lasts for years post-treatment. Three women reported that they feel like they have less energy, and two others say they have issues with maintaining work-hour requirements. On average, fatigue was worse during treatment, and now most BCS have reported improvements. Participant 009 was one of many BCS who experienced issues returning to work due to fatigue.

"I would say for the first three years the fatigue is really, really tangible, very hard to, I guess, to sustain things for a long period of time . . . I found working, going back to work, even though it was a couple of days a week at first, were exhausting. Now, I still, even now, I still don't have the physical, I guess, stamina that I used to have." (P009)

Cognitive changes impact self-confidence and workability. BCS have reported feeling like they can't remember words and suffer from chemo fog and short-term memory loss. Four of these participants are worried about these cognitive changes impacting their working life. This issue was highlighted by participant 002, who stated:

"As well, so I think once I got back into that, I felt like my brain came back online, but before that, It's like I could. Sometimes I couldn't even find the words to say, and I was worried. I'm like how am I gonna go back to work and have these conversations with families? And you know, I sound dumb pretty much." (P002)

Bodily changes due to menopause, medication side effects and changes in self-esteem have been seen to reduce BCS ability to be intimate. For varying reasons, from the experience of dryness and pain to a lower libido, 60% of the participants reported some change in their sex lives. Participant 009 describes her struggle with getting hormone replacement therapy to reduce symptoms and improve her ability to be intimate.

"I had a very healthy sex life with my husband before any of this happened. Now it is non-existent. Not fun, not wanting to. But it is extremely painful. It doesn't . . . I can't obviously, can't take HRT, I have tried. I have begged, I have screened, I have fought with doctors, I've been shut down at every turn." (P009)

Another participant outlined the steps she has taken to improve her sexual functioning.

"Firstly, you don't really feel like it, that's for sure. But then afterwards, I think because of menopause, you've dryness and discomfort, definitely suffering from both of those. But because of my involvement volunteering with The Mater, I was lucky enough in those groups . . . So, she talked us through the option of laser in your cervix to get that sort of moisture back. But I . . . So we need to use lubricant now because it's never really got back to 100% normal." (P008)

#### 3.3.2. Support Systems

Support system changes were identified in the breast cancer survivors' relationships with their children, husbands, friends and family members. These changes not only impacted them emotionally during the time of treatment but have also had lasting effects post-treatment. Most of these BCS (80%) were married and had children, and a majority of them reported that their husbands were extremely supportive.

"He was very supportive. I was very lucky. I you know on being on breast cancer support group pages that I so many stories of relationships breaking down and you know divorce and all the rest of it. But yeah, no I was very lucky he was 100% in it with me." (P002)

A few BCS did outline issues with children's behaviour or difficulties amongst the extended family unit. Participant 014 in particular noted the difficulties within a family unit.

"My little girl was quite young at the time, so she didn't really know what was going on, but her behaviour started becoming quite bad during it all . . . So it was difficult for the older kinds, but they all worked so they threw themselves into work and study and friends and kind of like, I felt like they ignored me a lot." (P014)

Seven out of the fifteen participants' social networks shifted during their journey. Three BCS highlighted their desire for privacy throughout this time, while three others mentioned that they felt forgotten. Six BCS specifically mentioned that they felt disconnected and distant. Alternatively, 33% of BCS reported not feeling isolated and completely supported by their community, family and friends

For participant 008, it came as a surprise as to who stepped up and who stepped back.

"I felt like my network went into the washing machine and some people went down the drain, and others who came out lovely and fluffy; they are my posse. I'd trust my life with them. It's quite amazing the people who step away . . . But I had a couple of very, very close friends who are not in my inner circle anymore, and just stepped away." (P008)

#### *3.4. Health Services Experience*

BCS in both the public and private sectors reported financial distress throughout their journey (see Table 5). Out of the 15 participants, only 5 reported not having financial stress during this time. Of these BCS, all five were part of the private health system. Many did, however, acknowledge the steep prices and shock felt over the cost of their treatment, commenting that they were "lucky" to be able to afford treatment. Of the BCS experiencing financial stress, three were in the public system, and five were private. One woman highlighted the stress of having a lack of income on her family:


**Table 5.** Financial Stress and Healthcare System.

"My husband had to take time off because he had to return to his work. The cancer therapy helped us pay half the bill, which they do because of the stress that comes on between a family and then the kids trying to go to school, go to work, and then your husband's gotta look after the little one, cook, clean and wash." (P012)

There were also reports that post-treatments, due to financial constraints, BCS were not able to access services to improve their QOL.

"Everything that's come after it is virtually out of pocket so that I can't afford to seek the therapy that I actually really need on a regular basis." (P007)

During treatment, interactions with the medical staff and ease of using services contributed to the overall QOL of BCS. One woman mentioned that she felt "like everyone was treating me like a queen. It was great. I'm like everyone so nice to me because they know I've got cancer" (P002), whereas another mentioned that during treatment she had a few issues with communication that led to further anxiety.

"Oh, you've got more of a chance of it coming back somewhere else than in the other breast", and I remember thinking, "Did you just hear what you just said?" They just . . . I know it's hard for them and they need to be separate emotionally, but they also need to remember that they're dealing with people and they're dealing with people's lives"

As mentioned previously, there was a drop-off in support after active treatment. Here, BCS reported that they had difficulty getting help for the side effects of medications.

"They don't give you any way to manage those symptoms of what you're gonna go through on the medication. They don't identify things that you can go, "Oh, that's what that is, and this is how I can treat it, how to avoid it." They just kind of ignore the fact that you have side effects from it, or they say, "You know, I've seen people worse off, so you've got it okay." (P011)

#### **4. Discussion**

This study revealed that participants frequently reported psychological distress and a reduction in QOL. This aligns with the previous literature, where issues of financial hardships [7], comorbidities [8] and social isolation [9] were reported. The most prevalent issues highlighted by these studies BCS were the harm of the side effects from post-treatment medication, anxiety around cancer recurrence and issues with health service utilisation.

Psychological distress is the emotional suffering associated with stressors and demands that are difficult to cope with daily. The results from this study illustrate that the significant points of psychological distress along the journey of BCS are receiving the diagnosis during treatment and, finally, the process of survivorship. The most commonly endorsed stressors include chemotherapy trauma (46%) and loss of identity (40%). The anxiety of reoccurrence was noted by all survivors, with three of the fifteen participants reporting that it no longer concerns them. The literature has observed that BCS levels of anxiety and depression decrease over time, which contradicts the findings of our study where it has increased [21]. The increase in distress during the transition from active treatment aligns with qualitative and anecdotal studies [22], whereas contradicting quantitative studies report a decrease in distress at this time [23,24]. There were three main events where psychological distress occurred for BCS. These included receiving the diagnosis, completing treatment and post treatment abandonment which have also been observed in other studies [25,26]. When diagnosed, participants went into a state of shock and experienced trauma responses. Four of the fifteen participants did, however, mention that their first instinct was to attack the problem pragmatically. The next source of distress was going through treatment, especially chemotherapy. Side effects such as losing hair and the feeling of helplessness were significant contributors to psychological distress. Finally, post-treatment feelings of abandonment by the healthcare system and the lack of direction also contributed to distress, which is supported by a growing body of evidence [27,28]. Here, it was evident that participants felt abandoned and struggled with not having any support networks to assist with the transition.

Participants' QOL was explored by discussing how certain indicators, identified from the literature review, have impacted participants' QOL. The significant concerns derived from these interviews were physical symptoms of BC, changes in support systems for BCS and poor body-image perception.

Poor body image is associated with mastectomies and breast reconstruction surgery [11]. Although a smaller sample was used, this study supported those findings. Over half of the BCS reported a drop in self-esteem, feeling unattractive to partners and embarrassed by their breasts. There was a consensus amongst two of the BCS claiming to be unsatisfied with their reconstruction, often suggesting that they struggle with having or not having tattooed nipples. Survivors have reported sexual health concerns for up to 10 years posttreatment [29]. In Pumo et al.'s (2012) study, sexual conditions that directly correlated to psychological disorders were prevalent in 36% of their participants [30]. Within this study, sexual issues and complications such as dryness, pain and low libido to side effects of treatments were linked with medications rather than psychological disorders. There were also reports of participants' embarrassment of how they look affecting their desire to be intimate with their partner.

Sleep and fatigue are both factors contributing to the reduction in QOL. Several BCS reported insomnia, trouble staying asleep and extreme fatigue throughout the day. There was a common trend of fatigue and sleep issues being more prevalent during treatment and then improving as time went on, supported in the literature [31]. There was, however, a few BCS that reported persistent trouble sleeping and fatigue even years post-treatment. In Beck et al.'s 2010 study, this trend was also seen where some survivors continued to experience problems with sleep many years later [32]. This constant fatigue has resulted in reducing the workability of survivors and the ability to spend time with families, which has led to a reduction in QOL.

Cognitive changes were linked to memory loss and reduced capacity for work for the majority of the study participants. Similar findings were reported in previous studies, where participants noticed language, memory, spatial ability and motor function changes [33]. However, there was some discrepancy among participants regarding whether the medication, treatment or effects of ageing were causing the changes in cognition. Collins et al. (2009) discussed this phenomenon concerning hormonal therapies such as tamoxifen and anastrozole [34]. It was concluded that hormonal therapies subtly have a negative influence on cognition. This aligned with our findings as the negative side effects of tamoxifen were mentioned by four of the fifteen participants and linked to their cognitive changes and other physical symptoms. There were also conversations linking these cognitive changes to stressors in the workplace, with BCS worrying that it would affect their performance. Similar findings were cited in Nelson and Sul's (2013) study, which noted that the detrimental effects of reduced memory and learning impacted the workplace and function roles [35].

The majority of participants were married and had children. This resulted in extensive conversations about relationship changes and social isolation. Most BCS reported that their husbands were highly supportive and a great help during this time. Only a minority mentioned relationship breakdowns and increased stress due to their partners. Multiple studies have illustrated the positive effect of supportive spousal relationships [36,37], which our study supports. Even with this support, many BCS still feel isolated post-treatment due to a lack of continued understanding of their experience from family and friends [38] and continued side effects of medications. Perz et al. (2013) explored that the heightened fear of rejection experienced by BCS with potential partners causes survivors to isolate themselves even further [39]. The single woman who participated in this study reported that they felt embarrassed by their breast appearance; however, this fear of rejection was not explicitly mentioned. There was also no mention of participants further isolating themselves as they sought out more connections via social networks, support groups and their own families. Those who had better support networks of friends, family and communities mentioned that going through treatment was easier with all the extra help, and thus they felt less isolated. When this community was not present, there were often reports of feeling helpless and overwhelmed by tasks. This is supported in the literature, where those who have strong

relationships and communities to assist them felt protected from negative feelings such as depression, anxiety and the stigma of BC [9,36,38].

The experience of using and accessing healthcare services was identified as a significant factor contributing to QOL. Within Australia, Medicare is the publicly funded universal health care insurance scheme that all Australians can access. In addition to this, private health coverage is also available to paying customers to cover the gaps in Medicare. These two services however still do not alleviate the entire financial burden of Breast Cancer treatments and services. Financial distress acted as a significant barrier to healthcare services for BCS [40]. This result was expected because various studies outlined expensive costs and lack of coverage via Medicare and private health [40]. The previous literature also outlined that breast cancer comorbidities would also be a barrier to returning to work [41], which was also seen in this study. One central area discussed was the difficulties affording services post-treatment. Through the public and private health sectors, most women received some financial support.

In some cases, participants had to pick and choose the most needed services at a specific time rather than having access to all services that may improve their QOL. Although the majority did report that financially they were stable, all acknowledge the exorbitant costs of life-saving and life-enhancing treatments during survivorship. Breast reconstruction was a significant source of financial strain. It is not covered under Medicare, and as it is not considered a life-saving surgery, private health services often do not cover it.

Treatment and communication by staff within the healthcare system had a significant impact on survivors' experience and distress. Four of the fifteen BCS reported at least one issue of switching practitioners or feeling like they were not being heard. One of the most considerable contributions to distress during diagnosis was the communication of medical staff about the severity and course of action for treatments. Participants also highlighted how their health was now in their own hands after treatment, and there was no transition phase. Many felt abandoned and isolated by the shift in control as well as being at a loss as to how to manage their symptoms into the future. Most participants continued to take medication after their treatments to prevent cancer recurrence. These medications, however, had harmful side effects that BCS have had to learn how to manage by themselves. This, paired with financial restrictions, has resulted in a reduction in QOL.

However, there are a few limitations of the study. The limitations of this study include social media and readiness bias. The effectiveness of social media recruitment resulted in a biased sample toward BCS who do not use or do not have access to social media. In addition, it also eliminates participants who are not yet ready to share their experiences as they are still dealing with the consequences of their disease.

#### **5. Summary and Conclusions**

Fifteen BCS were interviewed to understand their journey from pre-diagnosis to survivorship. The average participants were aged 35–45, had at least one child, were married and were Australian. The most common issues mentioned throughout this study were the lack of interventions for medication side effects, changes in their body image and anxiety around cancer reoccurrence. There were also many accounts of how physical side effects from treatments have impacted their work and social and sexual lives.

These findings are based on a qualitative study, with a small sample of 15 in-depth interviews; therefore, a generalisation of the study cannot be made. Due to the small number of participants and sampling error, there was also a lack of older participants from diverse backgrounds.

This study has provided a preliminary basis for the experience of BCS and can expanded on in a larger study using quantitative methods to assess QOL and psychological distress. These findings have implications for policymakers and for the healthcare industry along with the importance of a survivor's relationship with their healthcare team and their ability to access services, which was especially highlighted. It would be our recommendation to focus future studies on the experience of BCS from ages 35 to 45 including their

diagnosis. Future studies should also include BCS of culturally diverse groups and older age cohorts.

From this research, it is also clear that younger women should have access to free and convenient mammograms. Additionally, the experience of sexuality and early menopause is an area that needs to be examined to provide better services and support for survivors. Access to post-care services, links to support groups and information about medication side effects should be prioritised in order to increase survivors' QOL.

**Author Contributions:** Here are the contributions from authors: Conceptualization, S.Z.H.; methodology S.Z.H. and L.-A.A.; software, L.-A.A.; validation, S.Z.H. and L.-A.A.; formal analysis, L.-A.A. and S.Z.H.; investigation, L.-A.A. and S.Z.H.; resources, S.Z.H. and L.-A.A.; data curation, L.-A.A. and S.Z.H.; writing—original draft preparation, L.-A.A.; writing—review and editing, L.-A.A. and S.Z.H.; supervision, S.Z.H.; project administration, S.Z.H. and L.-A.A. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research received no external funding.

**Institutional Review Board Statement:** The study was conducted in accordance with the Human Research Ethics Committee of the University of Sydney (Protocol number 2021/525 and date 18 August 2021.

**Informed Consent Statement:** Informed consent was obtained from all subjects involved in the study.

**Conflicts of Interest:** The authors declare no conflict of interest.

### **Appendix A**



#### *Section 2: Breast cancer diagnosis and distress*


#### *Section 3: Impact of breast cancer on quality of life*



### *Section 4: Health services utilisation*


### **References**


#### *Case Report*
