"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
family; human; adult; female; male; perception; article; aged; Canada; adolescent; young adult; health personnel attitude; cancer palliative therapy; physician; psychiatrist; tertiary care center; experience; qualitative research; semi structured interview; thematic analysis; advanced cancer; radiation oncologist; care behavior; clinician parent communication difficulty; advanced practice nurse; theoretical study; medical oncologist; counter transference
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
Avery J; Geist A; D'Agostino N M; Kawaguchi S K; Mahtani R; Mazzotta P; Mosher P J; al-Awamer A; Kassam A; Zimmermann C; Samadi M; Tam S; Srikanthan A; Gupta A
Journal of Oncology Practice
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/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">10.1200/JOP.19.00313</a>
Incorporating bereaved parents as facilitators and educators in teaching principles of palliative and end-of-life care
advanced practice nurse; bereaved parents; paediatric; palliative care; parent experiences
Objectives * Identify innovative ways to incorporate highly trained bereaved parent volunteers into educational opportunities in palliative care for health care providers and staff. * Describe the process of implementation and content of palliative care educational forums facilitated by bereaved parent educators. * Conduct training, support, and debriefing that is provided to bereaved parent volunteer educators and facilitators involved in staff education on palliative and end-of-life care. High quality medical education for all members of the clinical and supportive care team requires training in principles of palliative and end-of-life care, including symptom management, empathic communication, ethical considerations, and provision of support around the time of death and throughout bereavement. We have demonstrated that experiences of bereaved parents can augment and inform palliative care educational curricula in uniquely powerful and valuable ways. We present a novel and innovative palliative care training program facilitated by bereaved parents of children cared for at our institution, who now serve as volunteer educators in palliative care didactic forums for clinical staff. Current and ongoing educational events include quarterly offerings of the End of Life Nursing Education Consortium (ELNEC), and Quality of Life Seminars, two independent one-day training programs for nurses, support staff, advanced practice nurses, and physicians. These educational sessions utilize small groups, facilitated by a bereaved parent volunteer and a palliative care team member, to augment didactic teaching, encourage interactive discussion and questions, and allow practice in palliative care skills. Bereaved parents also function as facilitators and educators in intensive and interactive communication workshops for medical trainees and collaborate with palliative care physicians to teach communication skills in national forums in which they provide communication training and discuss fundamentals of bereavement support. Unquestionably, appropriate selection and training of bereaved parent educators is essential to programmatic success. Parents receive support through scheduled debriefings following each event, with additional one-on-one support provided as needed. Feedback from bereaved parent participants demonstrate unanimous perception of teaching opportunities as meaningful avenues to continue longitudinal relationships with the institution and create lasting legacies to honor their children. Our uniquely innovative integration of bereaved parents in education around palliative and end-of-life care is a model which we have observed to be an effective and beneficial intervention for both staff and parents.
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).
Snaman J; Kaye E; Levine D; Clark L; Wilcox R; Cunningham M; Baker J
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.128" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.128</a>
Use Of Spiritual Coping Strategies By Gender, Race/ethnicity, And Religion At 1 And 3 Months After Infant's/child's Intensive Care Unit Death
Advanced Practice Nurse; Bereaved Parents; Emotional Adjustment; Nicu/picu; Nurse Practitioner; Pediatrics; Spirituality
BACKGROUND AND PURPOSE: In the United States, 57,000 children (newborn to 18 years) die annually. Bereaved parents may rely on religious or spiritual beliefs in their grief. The study's purpose was to examine differences in parents' use of spiritual and religious coping practices by gender, race/ethnicity, and religion at 1 and 3 months after infant/ICU death. METHODS: The sample consisted of 165 bereaved parents, 78% minority. The Spiritual Coping Strategies Scale was used to measure religious and spiritual coping practices, separately. One-way ANOVAs indicated that Black non-Hispanic mothers used significantly more religious coping practices at 3 months than White non-Hispanic mothers. Protestant and Catholic parents used more religious coping practices than the "no" and "other" religion groups at 1 and 3 months. Within the 30 mother-father dyads (paired t-tests), mothers reported significantly greater use of religious coping practices at 1 and 3 months and spiritual coping practices at 3 months than fathers. CONCLUSION: Religious coping practices were most commonly used by Black mothers and Protestant and Catholic parents. Within dyads, mothers used more spiritual and religious coping practices than fathers. IMPLICATIONS FOR PRACTICE: These findings are beneficial for healthcare personnel in providing support to bereaved parents of diverse races/ethnicities and religions.
Hawthorne D M; Youngblut JM; Brooten D
Journal Of The American Association Of Nurse Practitioners
2017
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).
10.1002/2327-6924.12498