Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer
Abstract
:1. Introduction
2. Materials and Methods
2.1. Participants and Recruitment
2.2. Data Collection
2.3. Data Analysis
3. Results
3.1. Participant Characteristics
3.1.1. Parent Characteristics
3.1.2. AYA Characteristics
3.2. Overarching Themes of Communication Advice to Clinicians
3.2.1. Maintaining Interpersonal Relationships
Demonstrating Empathy
Showing Commitment
Empowering Patients and the Family
Maintaining Optimism and Hopefulness
Building and Maintaining Connections
Maintaining a Calm Demeanor
3.2.2. Providing Information
Supporting Understanding
Preparing for the Future
3.2.3. Providing Treatment, Resources, and Medical Care
Providing Resources
Being Competent
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Parent Age | n (%) |
---|---|
21–29 years | 4 (5) |
30-39 years | 25 (31) |
40–49 years | 31 (39) |
50 years or older | 20 (25) |
Parent gender | |
Female | 67 (84) |
Male | 13 (16) |
Relation to Child | |
Parent | 79 (99) |
Grandparent | 1 (1) |
Parent race/ethnicity * | |
White | 73 (91) |
Black | 7 (9) |
Asian | 2 (3) |
Hispanic | 3 (4) |
Other | 1 (1) |
Parent education | |
High school graduate or less | 7 (9) |
Some college or technical school | 15 (19) |
College or technical school graduate | 37 (46) |
Graduate/professional school | 21 (26) |
Parent marital status | |
Married/living as married | 63 (79) |
Other | 17 (21) |
Child age at diagnosis | |
12 years or younger | 52 (65) |
13 years or older | 28 (35) |
Child gender | |
Male | 42 (53) |
Female | 38 (47) |
Diagnosis | |
Leukemia/Lymphoma | 36 (45) |
Solid tumor (not in brain) | 31 (39) |
Brain tumor | 13 (16) |
Time point in cancer trajectory | |
Treatment | 30 (37) |
Survivorship | 27 (35) |
Bereavement | 21 (27) |
Site | |
St Louis | 27 (35) |
Boston | 27 (35) |
Memphis | 24 (30) |
Gender | n (%) |
---|---|
Female | 19 (51) |
Male | 18 (49) |
Age at diagnosis, mean (SD) | 16 (2.2) |
Age at interview, mean (SD) | 18 (2.9) |
13—16 years | 11 (30) |
17—20 years | 20 (54) |
21—24 years | 5 (14) |
Race ** | |
Asian | 2 (5) |
Black | 8 (22) |
Pacific Islander | 2 (5) |
White | 26 (70) |
Hispanic ethnicity | 1 (3) |
Diagnosis | |
CNS tumor | 8 (22) |
Leukemia | 7 (19) |
Lymphoma | 12 (32) |
Solid tumor | 10 (27) |
Time point in cancer trajectory | |
Treatment | 19 (51) |
Survivorship | 18 (49) |
Site | |
St Louis | 19 (51) |
Memphis | 18 (49) |
Parent Sub-Themes | AYA Sub-Themes | |
---|---|---|
Interpersonal relationships |
|
|
Informational preferences |
|
|
Delivery of treatment, resources, and medical care |
|
|
Interpersonal Relationships | ||
---|---|---|
Demonstrating empathy and caring | Parents experience profound emotional distress when their child is diagnosed with cancer. Emotional distress can impede their ability to process information and make informed treatment decisions. Parents advised that clinicians could help them through these challenging times by being compassionate, recognizing emotional needs, attempting to understand their feelings, and being responsive to each family’s unique needs. and celebrate achievements and important time points. | AYAs advised clinicians to ask about patients’ and families’ emotional states, acknowledge them, and respond appropriately. They advised clinicians to “read the room” before delivering a cancer diagnosis to meet the family’s unique emotional needs. Compassionate and kind clinicians can relieve some of their burdens during challenging times. |
Showing commitment | Parents advised clinicians to demonstrate dedication and reliability in caring for their children. They advised clinicians to follow through on promises | AYAs advised clinicians make them feel like they were not alone and that the team remained available to them. AYAs in survivorship especially emphasized that clinicians remain available to the patient after completing therapy, even if the AYA has transitioned to a different clinical team. |
Empowering the patient and family | Parents advised that clinicians should actively support and encourage parents to advocate for their child and make patients/families feel like active members of the team. | AYAs advised clinicians to make them feel like an important part of decisions and communication. They also advised clinicians to encourage AYAs to ask questions and make them comfortable to raise concerns. |
Maintaining hopefulness and optimism | Parents advised that clinicians should reinforce their hopes about their child’s future. These hopes could focus on prognosis or other specific hopes. Many parents also described the importance of hopefulness and positivity in general. Despite the importance of hopefulness, parents also advised against providing false or unrealistic hopes. | AYAs advised clinicians to be optimistic despite adversities. They advised clinicians to stay upbeat and positive instead of being gloomy. While AYAs identified the importance of honesty and transparency, they also emphasized the importance of portraying information in a positive, hopeful manner. |
Building and maintaining connections | Parents advised clinicians to maintain a lasting relationship with families, especially after their child has died. Similar to AYAs parents advised clinicians to maintain a close-knit bond with them by providing avenues for continued communication after they lost their child | AYAs advised clinicians to get to know them as a person and not just as a patient, often describing clinicians as “friends” or “family”. They advised clinicians to build a relationship with them by asking about their interests, being friendly, and displaying affection rather than being “sterile” and distant. AYAs in survivorship advised clinicians to maintain a close-knit bond with them by providing avenues for continued communication after the end of treatment. |
Maintaining a calm demeanor | Not identified in parents | AYAs advised clinicians to maintain a sense of calm, rather than showing their nervousness or anxiety. When their clinicians exhibited nervousness, it made them and their parents more anxious. They advised clinicians to make patients and families feel like things were under control. |
Informational preferences | ||
Supporting understanding | Parents pursue clarity regarding the cause, diagnosis, treatment, prognosis, and long-term effects of cancer and its treatment. Parents advised that clinicians use simple terms, pace the amount of information, and remain open to a multitude of questions without showing frustration. Further, many parents found that written information was helpful in addition to verbal communication. | AYAs also look for clarity in information regarding the cause, diagnosis, treatment, prognosis, and long-term effects of cancer and its treatment. AYAs advised that clinicians first recognize a family’s emotional state before sharing potentially distressing information. They advised clinicians to use simple terms, pace the amount of information, and not overwhelm patients and parents. Many AYAs preferred to know accurate percentages of pts with similar diagnoses and outcomes, but this was not universal. |
Preparing for the future | Parents experience a variety of incertitude when the diagnosis of cancer is made. These uncertainties can stem from prognoses, frequency and or length of hospitalization, and late effects. Parents advised clinicians to communicate clinical uncertainty when it exists, dispel uncertainty when there is an answer, and help patients and families to cope when inexorable obscurities remain or arise. To help families navigate through these challenging situations, parents advised that clinicians should provide them with a plan for the immediate, short- and long-term futures. Further, providing pragmatic information on post-treatment surveillance, treatment-related complications, relapse, and mortality helped parents set realistic expectations. | AYAs advised clinicians to prepare for the future by actively acknowledging AYAs’ persistent worry about cancer relapse, and by preparing them to look for concerning signs or symptoms of illness or relapse. They also advised clinicians to help patients understand what to expect in survivorship, in terms of physical signs and symptoms, emotional distress, and logistics of follow-up with the clinical team. |
Delivery of treatment, resources, and medical care | ||
Providing resources | Families advised clinicians to offer different resources to them early on and continue to do so throughout their treatment and thereafter. These resources included Child Life Services, social workers, art therapy, and music therapy, as well as financial and insurance resources. Parents shared that support staff helped them navigate through long hospital stays with support such as housing accommodations, gas cards, and meal card vouchers. | AYAs advised clinicians to provide individualized resources to support self-management and emotional needs. They emphasized that clinicians should provide resources to connect with other AYAs who shared similar experiences. |
Being competent | Parents expect their clinicians to have the knowledge and skill to treat their cancer and its side effects effectively. Parents advised that clinicians demonstrate the knowledge, skill, and humility to provide optimal treatment for their child | AYAs similarly expected their clinicians to demonstrate the knowledge and skills to treat their cancer and side effects. AYAs advised clinicians to fulfill their responsibilities towards their patients to the best of their abilities. |
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Srinivas, M.; Kaye, E.C.; Blazin, L.J.; Baker, J.N.; Mack, J.W.; DuBois, J.M.; Sisk, B.A. Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer. Children 2023, 10, 7. https://doi.org/10.3390/children10010007
Srinivas M, Kaye EC, Blazin LJ, Baker JN, Mack JW, DuBois JM, Sisk BA. Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer. Children. 2023; 10(1):7. https://doi.org/10.3390/children10010007
Chicago/Turabian StyleSrinivas, Meghana, Erica C. Kaye, Lindsay J. Blazin, Justin N. Baker, Jennifer W. Mack, James M. DuBois, and Bryan A. Sisk. 2023. "Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer" Children 10, no. 1: 7. https://doi.org/10.3390/children10010007