Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Result(s): Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusion(s): Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.
Sisk BA; Keenan MA; Schulz GL; Bakitas M; Currie ER; Gilbertson-White S; Lindley LC; Roeland EJ; Mack JW
Journal of adolescent and young adult oncology
2022
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.2021.0154" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0154</a>
Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer
Oncology
BACKGROUND: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. OBJECTIVE(S): To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care communication. DESIGN: Cross-sectional observational study. SETTING/SUBJECTS: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. MEASUREMENTS: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. RESULT(S): Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. CONCLUSION(S): Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.
Currie ER; Johnston EE; Bakitas M; Roeland E; Lindley LC; Gilbertson-White S; Mack J
Journal of Palliative Care
2021
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/10.1177/08258597211001991" target="_blank" rel="noreferrer noopener">10.1177/08258597211001991</a>
Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives
Oncology
BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. METHOD(S): We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. RESULT(S): Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. CONCLUSION(S): Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.
Mack JW; Currie ER; Martello V; Gittzus J; Isack A; Fisher L; Lindley LC; Gilbertson-White S; Roeland E; Bakitas M
Journal of the National Comprehensive Cancer Network
2021
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/10.6004/jnccn.2020.7645" target="_blank" rel="noreferrer noopener">10.6004/jnccn.2020.7645</a>