Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology
BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. METHODS: The aim of this project was to enhance the healthcare teams' understanding of bereaved parents' end-of-life care preferences through narratives. Bereaved parents were recruited from our institution's Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child's end-of-life care. Narratives were analyzed using standard qualitative methods. RESULTS: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child's voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. CONCLUSION: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child's end of life and to remain in contact with them after death.
Robert R; Razvi S; Triche LL; Bruera E; Moody KM
Children (Basel)
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/10.3390/children9020274" target="_blank" rel="noreferrer noopener">10.3390/children9020274</a>
What constitutes meaningful engagement for patients and families as partners on research teams?
Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement. Methods We conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada. Results We identified four main themes: research environment, expectations, support and value, which highlight participants' combined perspectives on important factors to ensure their engagement in research is meaningful. Conclusions Our findings add to the evolving evidence base on the perspectives of lay people involved in health care research and their recommendations for research leaders on meaningful engagement. Our study suggests that research leaders should provide a welcoming research environment, outline appropriate expectations for patient research partners on research teams, support patient research partners' engagement in projects and recognize the value patient research partners bring to health research.
Black A; Strain K; Wallsworth C; Charlton SG; Chang W; McNamee K; Hamilton C
Journal of Health Services Research & Policy
2018
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/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener">10.1177/1355819618762960</a>
Understanding Young People and Their Care Providers' Perceptions and Experiences of Integrated Care Within a Tertiary Paediatric Hospital Setting, Using Interpretive Phenomenological Analysis
paediatrics; healthcare providers; family-centred care; integrated care; patient experience; person-centred care; Person-Driven Care Special Collection.
INTRODUCTION: Benefits of integrated care include improved health outcomes and more satisfaction with experiences of care for consumers. For children and young people with chronic and complex health conditions, their care may be fragmented due to the multitude of healthcare providers involved. This paper describes the experiences of integrated care in a paediatric tertiary hospital. THEORY AND METHODS: Using an Interpretive Phenomenological Analysis approach, semi-structured interviews were conducted with children and young people, their parents and healthcare providers to explore stakeholders' integrated care experiences. RESULTS: Nineteen interviews were completed (6 children and young people, 7 parents and 6 healthcare providers) and transcribed verbatim. Two recurrent themes were applicable across the three cohorts: 'agency and empowerment' and 'impact of organisational systems, supports and structures'. DISCUSSION AND CONCLUSION: Stakeholders' experiences of integrated care highlighted the need to examine the discrepancies between healthcare strategies, policies and service delivery within a complex, and often inflexible organisational structure. Power imbalance and family agency (including directly with children and young people) needs to be addressed to support the implementation of integrated care.
Johnson H; Simons M; Newcomb D; Borkoles E
International Journal of Integrated Care
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/10.5334/ijic.5545" target="_blank" rel="noreferrer noopener">10.5334/ijic.5545</a>
Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System
Family caregiving; Healthcare system; Navigation; Patient experience; Qualitative; Rare disease
A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents’ experiences of navigating the healthcare system, a gap we begin to address in this study. Guided by an interpretive description methodology, participants were recruited through online listservs and posting flyers at a pediatric hospital in Western Canada. Sixteen parents (15 mothers and 1 father) participated in in-depth, semi-structured interviews between April 2013 and March 2014. Data were analyzed inductively, generating the main study themes. Findings illuminated the challenges parents’ experienced on their child’s diagnostic journey—from seeking, to receiving, to adjusting to the rare disease diagnosis. Following diagnosis, gaps, and barriers to services resulted in parents pursuing services that could support their child’s unique care needs, which often resulted in out-of-pocket payments and changes to employment. Parents found peer support, both online and in person, to be an effective resource. This study illustrates the common challenges experienced by parents of children with rare diseases as they navigate the healthcare system. Parents’ role as “expert caregiver” was rarely acknowledged by healthcare providers, pointing to the need to foster more egalitarian relationships. As well, parents were burdened with the additional role of care coordinator, a role that could be filled formally by a healthcare provider. Lastly, peer support was a key resource in terms of information and emotional support for parents who often begin their journey feeling isolated and alone. Policies and programs are needed that validate the invisible care work of parents and ensure adequate formal supports are in place to mitigate potential sources of inequity for these families. Furthermore, genetic counselors can play a key role in ensuring parents’ informational needs are addressed at the time of diagnosis and in connecting families who share common experiences regardless of the rare disease diagnosis.
Baumbusch J; Mayer S; Sloan-Yip I
Journal of Genetic Counseling
2018
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/10.1007/s10897-018-0294-9" target="_blank" rel="noreferrer noopener">10.1007/s10897-018-0294-9</a>