Factors Associated with Family Involvement or Lack Thereof in Caring for Mental Health Care Users: A Qualitative Study

Abstract

Family involvement in caring for people living with mental illness is significant for ideal positive treatment outcomes. Studies show that there are common factors that affect family members when involved in mental health care. The study aimed to explore and describe the factors associated with inadequate family involvement in caring for mental health care users. A qualitative explorative, descriptive, and contextual design was used. Purposive sampling was used to select data from family members and MHCUs admitted to long-term healthcare institutions. Data were collected concurrently with focused group interviews from the mental health care users and semi-structured interviews from the family members. Thematic analysis was used to analyse data. Three themes emerged from the results include: the attitude of family members towards carrying for mental health care users at home, the family burden in caring for mental health care users, and the lack of knowledge among family members. The study findings show that the attitude of family members towards carrying for mental health care users at home when discharged or granted leave of absence, impacts the odd behaviour of mental health care users. As a result, mental health care users are returned to the hospital before the expected return date.

1. Introduction

Family involvement in mental health treatment is an effective and transformative aspect that globally recognizes the crucial role of family members in supporting their loved ones with mental illness [1]. Despite widespread acknowledgment of the significance of family involvement in mental health, it was strongly recommended in scientific guidelines that simply suffer due to the factors associated with implementation [2]. The concept of “family involvement” was recognised in the 74th World Health Assembly World Health Organization (WHO)’s Comprehensive Mental Health Action Plan to foster the involvement of families and caregivers in mental healthcare to address the mental well-being of people diagnosed with illnesses [3,4]. According to Saxena, Funk and Chisholm [5] family involvement is the intervention that was found to be a central aspect of providing an operative response to mental health problems. In addition, the concept of family involvement was further defined as the process of linking, engaging and retaining families in mental health treatment services [6].

Despite the well-documented capability benefits of involving family members in the care of patients diagnosed with mental illness. In various studies, there have been many reports of factors associated with inadequate family involvement in mental health care [1,7,8]. The current study was conducted to explore and describe the factors associated with inadequate family involvement in caring for mental health care users (MHCUs) in long-term mental health institutions. The term MHCUs is derived from the South Africa Mental Health Care Act 17 of 2002 [9] to define a person receiving assisted care, treatment and rehabilitation. In addition, South Africa has developed a National Mental Health Policy Framework and Strategic Plan 2013–2020, to integrate mental health care into a comprehensive approach but the implementation of this policy is still limited [10,11,12].

In this regard, recent literature found that 50% to 70% of MHCUs relapse within six months of their discharge from the hospital, of which a lack of support from their family members was found to be a contributing factor [13]. Authors further identified abuse, neglect, family conflict, bullying and stressful life events as factors contributing to the high family burden [13]. In the current study, the author observed that family members are not willing to participate in the care of their loved ones during admission. It was also observed that family members seem to be unprepared to stay with the MHCUs when discharged; and families do not accept the MHCUs when granted leave of absence (LOA). In instances where family members accept LOA, MHCUs are returned to the mental health institution before the expected date. In addition, when the families are asked why the MHCU is returned before the expected date, the families explain that the MHCUs refuse to take treatment at home; some abuse dagga and alcohol, while community members accept some because of their odd behaviour.

Moreover, recent literature shows that mental health problems have been associated with a variety of factors such as social and psychological aspects in the family [6,11]. These include perceived family support, emotional detachment from family members, time spent with family, family conflict and affection, family cohesion, and parenting style [6]. Docrat et al. [12] alluded that the burden felt by families caring for patients diagnosed with mental illness discourages the families and caregivers from being involved in the care of their loved ones during hospitalization. This is similar to the Aubeeluck and Luximon-Ramma [14] study that found that having a family member diagnosed with mental illness makes the whole family worry about their safety and feel that it is difficult to be engaged in his or her mental health care when admitted to the hospital. Another study indicated that the relapse of patients at home is a factor that can influence the family towards participating in mental health due to the stigma and criticism from the community members [15].

Nevertheless, stigma-related and coping strategies were also identified as other factors associated with inadequate family involvement in mental health care [16]. In addition, a study by Campbell et al. [17] suggested that families of patients diagnosed with mental illness should be provided with sufficient information about coping with strategies during a LOA. Therefore, family members may understand the significance of their role and fully participate in the care of their loved ones diagnosed with mental illness [18]. Based on the above information, there is scanty literature about factors associated with inadequate family involvement in long-term mental health institutions (MHIs). The current study significantly contributes to the existing body of literature by addressing the relatively underexplored factors associated with family involvement (or lack thereof) in caring for MHCUs. Additionally, it explores the challenges families face in supporting MHCUs and the challenges they faced by MHCUs in involving their family members, which has been underrepresented in prior research. As a result, the factors associated with inadequate family involvement in caring for MHCUs have been explored and described in the current study.

2. Materials and Methods

A qualitative explorative, descriptive and contextual design was used to explore and describe the factors associated with inadequate family involvement in caring for NHCUs in long-term MHIs. A qualitative approach was chosen due to their inherent naivety, flexibility and functionality in diverse healthcare contexts [19]. This study was contextual because the interviews were conducted where family members with MHCUs reside and focus group interviews (FGIs) were conducted in long-term MHIs, where MHCUs were admitted. In addition, the study was conducted in MHIs context in Capricorn, Vhembe and Mopani, Districts of the Limpopo Province in South Africa. The population for this study comprised MHCUs and family members with MHCUs admitted receiving long-term care, treatment and rehabilitation. Purposive sampling was used to select family members and MHCUs, both male and female. The inclusion criteria for this study were MHCUs who were not sufficiently visited by their families during admission, those who were frequently visited were excluded. Additionally, families who were not visiting their loved ones during admission were included while those who were gradually visiting MHCUs during admission were excluded.

2.1. Data Collection Method

The author obtained permission to collect data from the University of Venda, Limpopo Department of Health and respective MHIs. Telephonic arrangements were made to obtain consent from family members who participated in the study. Semi-structured interviews among 21 family members at their respective homes, those who were insufficiently involved in caring for their loved ones during admission. In addition, the author arranged with the nursing managers to collect data from six FGIs MHCUs. The author was assisted by the nursing personnel in selecting the MHCUs that were stable enough to follow the instructions in the FGIs. Interview guides for both semi-structured interviews and FGIs developed in English and translated into Northern Sotho, Tshivenda and Xitsonga languages by the University of Venda language department to accommodate all participants. The interview guides were pre-tested to guide the interviews. Two different open-ended questions were used, one was guiding FGIs and the other one was guiding the semi-structured interviews. Additionally, follow-up probing questions were used to guide participants to the objectives of the study [20]. The central question “Can you explain to me what you think discourages your family from visiting you during admission” was directed to the MHCUs. Additionally, the central question “Can you explain to me what you think discourages you from visiting your loved ones during admission” was directed to the family members.

2.2. Data Analysis

Thematic analysis was used as described by Braun et al. [21] to analyse data [22]. The thematic analysis allows the author to develop coding and themes from the data collected. (1) The author familiarizes herself with the data by reading and re-reading the data to become deeply familiar with its content. (2) Codes were generated by systematically working through the data and creating initial codes to capture specific elements in the data. (3) Themes were identified by grouping related codes together and reviewing the codes, considering how they can combine to form meaningful themes. (4) The author reviewed themes by refining and checking the identified themes against the data to ensure they accurately represent the dataset. Some themes may be merged, split, or discarded based on the review. (5) Themes were defined and named to describe what each theme represents and how it relates to the research question. (6) The author finally wrote a report to provide a compelling story about data based on analysis. Data were analysed separately as soon as data collection started and not at the end of data collection [23]. Data from the voice recordings were transcribed verbatim by listening to the audio recordings. An independent coder who was familiar with open coding was requested to simplify the classification data into three themes.

Additionally, the following criteria were used to enhance trustworthiness: credibility, transferability, dependability and conformability [24]. The author employed semi-structured interviews and FGIs while observing the participants and utilized field notes as document analysis. This helped the author to triangulate the findings and gain a comprehensive understanding of the factors associated with inadequate family involvement to ensure credibility. The preliminary findings were presented to the participants to seek their feedback to verify interpretations to engage them. Thick descriptions with detailed context-setting and population were provided to ensure transferability. Dependability was ensured by keeping a comprehensive detailed record of data collection and documenting pronouncements made throughout the research route. Critically reflecting on one’s own biases, assumptions, and preconceptions throughout the research process was acknowledged and potential biases were addressed to endorse confirmability.

Ethical considerations were ensured by obtaining permission to conduct the study from the Higher Degrees Committee of the University of Venda, Limpopo Department of Health, Capricorn, Vhembe and Mopani Districts of Limpopo Province. The heads of institutions from respective MHIs were also granted permission to collect data. The following ethical principles were ensured, autonomy, the right to privacy and self-determination. Informed consent was obtained from participants who volunteered to partake in the study without using any force. The author reassured participants that their names would not be mentioned in any report and that they were free to withdraw from participation at any time when they felt so. In addition, confidentiality was ensured by signing a confidentiality agreement with the author to ensure that all information provided was treated confidentially.

3. Results

3.1. Demographic Data

The sample for the family members encompasses more employed (n = 12) participants than unemployed (n = 9) adults, and the majority (n = 13) were females, as indicated in

Table 1. The demographic characteristics of the family members.

Employment Status
Participants	Age	Employed		Unemployed		Sub-Total
Gender		Male	Female	Male	Female
	20–30	1	-	1	1	3
	31–40	1	3	1	3	8
	41–50	2	4	1	2	9
	>50	1	-	-	-	1
	Total	5	7	3	6	21

.

Table 2. The demographic characteristics of the MHCUs.

Participants	Age	Group 1	Group 2	Group 3	Group 4	Group 5	Group 6	Sub-total
Gender		Male	Male	Male	Male	Female	Female
	20–30	1	2	2	3	1	-	9
	31–40	2	2	2	1	3	3	13
	41–50	2	2	1	2	2	4	13
	>50	1	-	1	-	-	-	2
	Total	6	6	6	6	6	7	37

shows the sample for the MHCUs (n = 24) more males of which (n = 14) participants were of age between 31- 50, and the minority (n = 13) were females.

3.2. Themes and Sub-Themes Emerged from the Interviews

The following themes and sub-themes emerged from interviews and FGIs, explored and described the factors associated with inadequate family involvement in caring for MHCUs in long-term MHIs as indicated in

Table 3. Themes and sub-themes that emerged from the interviews.

Themes

Sub-Themes

Attitude of family members toward carrying for mental health care users at home The family burden in caring for mental health care users Lack of knowledge among family members.

Family members view MHCUs as a danger to the community. Carrying for MHCUs is viewed as a difficult task by family members. The lack of visitation of MHCUs by family members in the hospital results from fear that patients will request LOA. The reluctance of family members to care for MHCUs at home. An explanation that MHCUs abuse substances during LOA. Difficulty in monitoring treatment adherence LOA is viewed as a challenge because MHCUs relapse when at home.

. In addition, sub-themes and quotations with similar findings from interviews and FGIs were integrated. Integrating these findings allows for a broader perspective and can enhance the generalizability of the results.

Table 3 shows three themes and seven sub-themes that emerged from the findings.

3.2.1. Theme One: Attitude of Family Members Toward Carrying MHCUs at Home

The families’ attitudes towards carrying MHCUs at home were problematic and identified as associated with inadequate family involvement. The following sub-themes indicate that there was a general reluctance to take on this responsibility.

• Family members view MHCUs as a danger to the community.

Family members expressed their concerns about the safety of the community which were tied to certain behaviours when the MHCUs were granted LOA or discharged. Participants also indicated that they lack support from the South African Police Services (SAPS) when MHCUs relapse and seek help.

‘I won’t take him for LOA. He rooms around the village aimlessly being dirty and threatening everyone in the community. Police say that they are tired of being called to take my uncle back to the hospital. He is dangerous to the community and even to the family’.

(P 11)

‘His disruptive behavior prompted the community to write a letter to the headman complaining when he was granted LOA, I won’t take him again’.

(P 2)

• Carrying for MHCUs is viewed as a difficult task by family members

Family members reported challenges as they felt overwhelmed about their ability to provide adequate care. The participants indicated that MHCUs were unable to maintain personal hygiene rather than rooming around aimlessly. Discriminated by community members for having a mental illness within the family was also a challenge.

‘I struggling to balance my life needs with the demands of caregiving when I think of difficulties in managing work, personal life, and caregiving responsibilities’.

(P 3)

‘He does not have time to bath, he rooms around the village aimlessly being dirty and he does not want to be reminded to perform personal hygiene.’

(P 8)

‘My neighbors, colleagues and even the community are not happy when they see my child during LOA. They discriminate against me saying that there is something wrong which I did that is why I have a mentally ill child’.

(P 20)

• The lack of visitation of MHCUs by family members in the hospital results from fear that patients will request LOA.

Family members reported that they avoid visiting MHCUs in the hospital due to the fear that visiting the patient, can prompt the patient to request LOA, On the other side, MHCUs indicated that their family members were unable to visit them and to fulfill their promises. Therefore, participants felt that they were being rejected. The following statements are evidence that promises were not fulfilled:

‘My concern is that he always requests LOA that could disrupt my routines and commitments, that is why I am not visiting’.

(P 3)

‘We are unable to visit him; he begs us to bring some dagga when visiting the hospital, saying that he doesn’t like cool drinks and snacks that we are bringing at the hospital. We think it does not help us to visit him at the hospital because he became angry, saying we should try by all means to hide the dagga’.

(P 11)

Participants from FGIs supported the above statement as follows:

‘They are not coming to collect me: I had been LOA and then discharged and then sent to a social worker because since 2006 they have not been coming; I feel rejected’.

(FGD 3, P 6)

‘They promise to come to visit but don’t. It is bad. When other MHCUs are being visited by their family members, it affects me, and I end up feeling rejected’.

(FGD 1, P 3)

‘They promise to take me home for LOA, but they don’t come. I used to send please call me with my fellow MHCUs’ phone and thinking that they would phone me. They are no longer responding to my callbacks; they are not even coming’.

(FGD 6, P 2)

3.2.2. Theme Two: The Family Burden in Caring for Mental Health Care Users

Participants indicated that having MHCUs at home is a burden and the family burden in caring for MHCUs was found to be associated with inadequate family involvement. They also raise their concerns in cases where the community complains about odd behaviour and the fact that they were unable to convince MHCUs to perform follow-ups at the local clinic to prevent relapse. The following sub-themes and quotes provide evidence of family burden in terms of caring for MHCUs.

• The reluctance of family members to care for MHCUs at home

Participants raised a concern regarding the unwillingness to care for MHCUs at home when discharged or granted LOA. Therefore, the following statements indicate that the participants were reluctant to care for their loved ones with mental illnesses.

‘I used to lock the gate so that my child could not go out. It does not help because they also laugh when they see him roaming in the yard. I am really depressed’.

(P 4)

Another participant supported the above statement as follows:

‘The community members are always complaining about my uncle’s destructive behaviour. The problem is that I am unable to manage him at home. He says that we should not take part in monitoring treatment compliance; we are not nurses’.

(P 9)

• An explanation that MHCUs abuse substances during LOA

Participants indicated that MHCUs abuse substances during LOA which discouraged them from requesting MHCUs to visit home for LOA. The participants said that MHCUs are begging family members to hide dagga when visiting the hospital. The following statements are evidence that substance abuse during LOA was a problem:

‘When granted LOA or discharged, he mixes the treatment with dagga. We are aware that our child abuses alcohol, he even knows that smoking dagga can affect the grant that he is receiving’.

(P 1)

‘I abuse dagga and alcohol while am at LOA. I think that is a reason for not negotiating with me why my family brought me back before the expected date and not taking me for LOA again. I think that is why they are rejecting me’.

(FGD 5, P 3)

3.2.3. Theme Three: Lack of Knowledge Among Family Members

Participants indicated a lack of knowledge among the family members on how to seek help, which was also identified as a factor associated with inadequate family involvement. The following sub-themes and quotes provide evidence that a lack of knowledge was a problem.

• Difficulty in monitoring treatment adherence

Participants indicated that they were unable to monitor their loved ones to continue with treatment at home. In addition, Participants also indicated that MHCUs struggle to continue with treatment and lack support since their families fail to initiate treatment compliance. Therefore, the following statements are evidence that monitoring treatment was a problem:

‘My brother refuses to do follow-ups at the clinic for the treatment while at home, saying that he will go back next week until he relapses. The problem is that he does not want his treatment to be supervised’.

(P 2)

‘My brother does not want to be reminded to tale treatment. He is saying that we are not nurses. Even when we ask him to verify whether he has taken his medication he does not tell us the truth. The problem is that I am the one who is expected to answer several questions at the hospital’.

(P 18)

• LOA is viewed as a challenge because MHCUs relapse when at home

Participants indicated that when they disagreed on certain matters, they were returned to the hospital without valid reasons. Hence some of the participants provided certain reasons for not taking MHCUs for LOA. Therefore, the following statements LOA was viewed as a challenge.

‘They present our problems to the social workers instead of assisting us to take our treatment accordingly. They should be patient with us; we are mentally ill’.

(FGD 4, P 1)

‘My family members treat me like a psychotic patient, I am not involved in decision making. I abused dagga and alcohol while I was on LOA. They didn’t negotiate with me regarding the reasons for bringing me back before the expected date’.

(FGD 2, P 4)

‘My parents once took me for LOA and told me that they wanted to try traditional healers, as I am stable. I ended up telling them that I am stable because of the treatment’.

(FGD 6, P 6)

Another participant supported the above statement as follows:

‘I then absconded from home back to the hospital. Since then, they have not been coming. I think I rather stay in the hospital than stop treatment and be treated by traditional healers’.

(FGD 4, P 3)

4. Discussion

This study explored and described the factors associated with inadequate family involvement in caring for NHCUs in long-term MHIs. Recent literature shows that mental health problems have been associated with a variety of factors such as severe depression, anxiety, and distress aspects in the family [25,26]. The current study identified three key themes from the findings, the attitude of family members toward carrying for mental health care users at home; family burden in caring for mental health care users; and lack of knowledge among family members. Both family members and MHCUs reported emotional strain, negative impacts on physical/mental health, and disruptions to daily life, contributing to stress and uncertainty in caregiving roles [27]. Additionally, the thematic analyses of study findings from the family members and MHCUs were integrated to highlight several factors associated with inadequate family involvement. However, it is important to note that both participants understand the significance of involving family when one member is diagnosed with mental illness. Factors such as lack of knowledge among family members, the attitude of family members towards MHCUs, MHCUs’ attitude towards their family members as well as substance abuse when MHCUs were discharged or granted LOA were identified. This gives nurses a therapeutic role in partnering with family members to improve the quality of mental health care services [28]. This was noted in the literature to emphasize partnering with the families to help them to deal with the feelings of ambiguity and disempowerment [29]. Such partnerships can flourish in recovery-oriented mental health services that allow meaningful family involvement.

The current study findings contrast with those of Tham et al. [30], which focused on the importance of family knowledge and education in supporting the MHCUs and found that a lack of understanding about mental health problems can result in misunderstandings, ineffective caregiving, and family stress. This study further explored family-focused interventions and their effectiveness in improving family members’ knowledge of mental health issues, highlighting how such programs help increase family involvement.

The participants indicated that the attitude of family members towards MHCUs impacts the families to be involved in mental health. Hence, on the other hand, the attitude of the MHCUs towards their families was identified as a problem. According to Topor et al. [31], family members’ attitudes are crucial in shaping the caregiving experience. Positive attitudes can foster better support, while negative attitudes might lead to poor outcomes for both the caregivers and MHCUs. This study focuses on the importance of positive family attitudes and how they affect recovery outcomes in individuals diagnosed with mental illness, stressing the need for interventions that target family perspectives.

The current study finding is similar to Lok and Bademli’s [26] study, which highlighted that families feel embarrassed, helpless and a sense of guilt when their loved ones with mental illness are not cooperating throughout their hospitalization. In this regard, authors also found that MHCUs experience problems attached to their well-being in comprehending discrimination that hinders their opportunities to have more positive and recover from mental illness when their families are not supporting them [32,33]. Therefore, it is significant for the family to have positive attitudes towards MHCUs and support them to minimize feelings of rejection. In addition, researchers found that once the families fully participate in the treatment plan for their loved ones during hospitalization, both MHCUs and family members benefit and minimize the risk of relapse [25].

The study findings revealed that having MHCUs in the family is a burden. Participants expressed the way they were accused by community members of having done something wrong and being punished for having a member diagnosed with mental illness. These findings are similar to the study conducted to describe the coping mechanisms of families with MHCUs diagnosed with mental illness. The authors found that families experienced difficulties in dealing with the challenges they encountered and struggled to support MHCUs daily [33]. In addition, the current study found that a concern raised by families regarding the unwillingness to be involved in the care for MHCUs is related to deviant behaviour when granted LOA. In addition, some of the MHCUs deny being reminded of their follow-up to continue with treatment. These findings contrast with Ramlucken and Sibiya [34] study which found that the reasons for MHCUs to miss scheduled appointments encompass lack of transportation, forgetfulness and financial constraints.

However, the fact that MHCUs abuse substances was a major problem. The current study revealed that MHCUs were begging family members to hide dagga when visiting the hospital and mixing the treatment with dagga during LOA. Hence MHCUs understand the use of substances and relate to the reasons for being rejected. In this regard, researchers found that the integration of family members in the treatment plan for LOA and discharge benefits both the families and MHCUs by diminishing the consumption of substances and improving family functioning [35]. The current study found that a lack of knowledge among the family members on how to seek help was a problem. Family members stated that they were unable to monitor their loved ones to continue with treatment at home. On the other hand, MHCUs raised their concern about lack of support from their families which led to MHCUs struggling to continue with treatment. These findings are similar to Monnapula-Mazabane and Petersen’s [36] study which found that a lack of knowledge about mental health, hinders the capacity of families to cope effectively and support their family members diagnosed with mental illness. Furthermore, the various authors highlighted that both MHCUs and their families be supported to reduce stigma among them [37,38].

However, the substantial results remained enthusiastic when considering factors identified from the current study. The current study findings are aligned to a study to investigate how MHCUs view their families’ involvement in their recovery and how negative attitudes or lack of support from families can impede mental health recovery which revealed that the attitudes of MHCUs towards their families are shaped by various factors, including the stigma associated with mental illness, past experiences, and the dynamics of family relationships [39,40]. As noted in the literature, psychoeducation was introduced as a strategy to provide information to families and MHCUs on mental health [41,42]. In addition, it was also found that psychoeducation encourages and motivates families to fully participate in mental health while discussing its potential contribution to decision-making [43,44]. Therefore, the current study made recommendations based on the findings. The current study recommended psychoeducation during family therapy sessions to provide mental health information among the family members and revision of admission policies that may promote family involvement in mental health. It was also recommended that MHCUs should be admitted to their local district MHIs to encourage families to visit their relatives without complaining about traveling expenses. In addition, the building of maximum-security wards in all institutions providing mental health services was recommended.

Regardless of the current findings, it is important to acknowledge the essential strengths and limitations of this study. The strengths were nurses’ readiness to participate in the research study, and the limitation was the extensive distance between the locations relevant to the context of the study significantly slowed down the progress during the data collection phase. The considerable travel time required to reach various sites resulted in delays and added logistical challenges. This distance not only increased the time spent on transportation but also created difficulties in scheduling and coordinating with participants, further hindering the efficiency of the data collection process. As a result, the overall timeline of the study was extended, and additional resources were required to mitigate the delays caused by the geographical spread of the study’s context.

5. Conclusions

Factors associated with inadequate family involvement in caring for MHCUs in long-term mental health institutions encompass the attitudes of family members towards carrying MHCUs at home that impact the MHCUs’ odd behaviour, lack of knowledge among family members, MHCUs’ attitude towards their family members, as well as substance abuse when MHCUs are discharged or granted LOA. As a result, MHCUs are returned to the hospital before the expected return date when granted leave of absence or readmitted if discharged. Therefore, these contribute to inadequate family engagement in mental health care. Psychoeducation was recommended, which was considered a significant aspect of providing mental health information among the family members and revision of policies that may promote family involvement in mental health.