End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice
adolescent; adult; article; controlled study; conversation; face cancer; human; narrative; pain; palliative therapy; terminal care; young adult
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.
Sansom-Daly U M; Wakefield C E; Patterson P; Cohn R J; Rosenberg A R; Wiener L; Fardell J E
Journal of adolescent and young adult oncology.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2019.0084" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0084</a>
An evaluation of By My Side: Peer support in written form is acceptable and useful for parents bereaved by childhood cancer
child mortality; parents; bereavement; psychosocial support systems; peer group; neoplasm/mortality*
CONTEXT: Cancer is the leading cause of non-accidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalise grief experiences and reduce parents' isolation. It is available free of charge. AIM: This project evaluated the acceptability, relevance, emotional impact and usefulness of By My Side. DESIGN: Bereaved parents and healthcare professionals provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyse the data. SETTING: /participants: We mailed a study invitation and evaluation questionnaire to parents and healthcare professionals who ordered a copy of By My Side. RESULTS: Twenty-four bereaved parents and seven healthcare professionals provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was 'just right'. 75% of parents reported that the book made them feel that their reactions to their child's death were normal/appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and healthcare professionals reported that the book provided useful information about grief. 83.4% of parents and 85.7% of healthcare professionals would recommend it to others. CONCLUSION: By My Side was acceptable and useful to bereaved parents and healthcare professionals. Results suggest that peer support in written form may help normalise aspects of grief and comfort parents bereaved by childhood cancer.
Raharjo C; Hetherington K; Donovan L; Fardell J E; Russell V; Cohn R J; Morgan N; Siddiqui J; Wakefield C E
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.01.013" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.01.013</a>