Parent Perspective and Response to Challenges and Priorities for Pediatric Palliative Care Research

Lord, Blyth

doi:10.1016/j.jpainsymman.2019.08.007

Cited by 14 publications

(12 citation statements)

References 1 publication

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“…Similarly, in a study of PPC in Uganda, patients also reported medication use for pain control, noting this as a strength of provided services (Amery et al, 2009). These international studies corroborate research with NHW children residing in the United States, who identify alleviation of suffering as important in their care (Lord, 2019; Melin-Johansson et al, 2014).…”

Section: Pain Managementsupporting

confidence: 74%

“…Across studies, caregivers consistently identify communication as an integral part of PPC. Caregivers and pediatric patients from various ethnic/racial groups indicate they value provider communication that is thorough, respectful, and honest and includes genuine expressions of compassion and kindness (Ghirotto et al, 2019; Lord, 2019; Melin-Johansson et al, 2014; van der Geest et al, 2014). For BIPOC families, language barriers and physician cultural sensitivity have been identified as important aspects of communication (Contro et al, 2002; Rosenberg et al, 2019; Saha et al, 2003).…”

Section: Communication With Providersmentioning

confidence: 99%

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Unheard voices: Underrepresented families perspectives of pediatric palliative care.

Sample¹,

Mikulic²,

Christian-Brandt³

2021

Clinical Practice in Pediatric Psychology

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Objective: Each year, half a million families cope with pediatric life-threatening illness in the United States. While research on pediatric palliative care (PPC) is growing, literature focusing on caregivers and patients who identify as Black, indigenous, or people of color (BIPOC) is limited. Given disproportionate experiences of health care disparities among BIPOC families, further exploration of these families' perspectives of PPC is imperative to improving health equity. The present topical review summarizes existing literature on BIPOC family experiences of PPC in order to inform current clinical practice and future research. Methods: Searches were conducted on databases including PubMed and PsycInfo, using the keywords pediatric palliative care, race, and ethnicity. Results: Based on available literature, regardless of ethnicity/race, families commonly identify clinician communication and management of patient pain as critical and desired components of PPC; however, research among BIPOC families suggests unmet needs across these domains as well as the need for improved physician cultural sensitivity. Conclusions: Existing PPC research among BIPOC families suggests unmet needs across domains, as well as the importance of attention to family culture and values. We conclude by providing recommendations for a culturally sensitive, familycentered approach to PPC; in addition to future mixed-methods research recommendations focusing on the experiences of BIPOC families. Implications for Impact StatementLiterature has found that families commonly identify communication and pain management as key aspects of effective PPC, regardless of ethnic-racial background; however, BIPOC families additionally note the importance of cultural sensitivity with regards to their care. This review highlights the importance of culturally sensitive PPC and provides research and clinical recommendations for providing care from this inclusive approach.

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Section: Pain Managementsupporting

confidence: 74%

Section: Communication With Providersmentioning

confidence: 99%

Unheard voices: Underrepresented families perspectives of pediatric palliative care.

Sample¹,

Mikulic²,

Christian-Brandt³

2021

Clinical Practice in Pediatric Psychology

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“…Bem and Small 7 provide a helpful way of discerning the impact of social determinants on comfort. Professionals must attend to the child's physical health status and functional status 20 . Supporting this would include the intensive symptom management provided through concurrent hospice care, access to home-based technology, and care coordination.…”

Section: Discussionmentioning

confidence: 99%

Social Determinants of Comfort

Mooney-Doyle

Mendola

Naumann

et al. 2022

J Hosp Palliat Nurs

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The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social determinants of comfort builds on the well-accepted concept of social determinants of health. Although some guiding palliative care documents begin to address this intersection, deeper understanding and exploration are needed. The goals of this article are to (1) describe and articulate the impact of structural and ecological factors on the comfort children and families can attain near the end of life; (2) describe how to address these factors to support children and families in attaining comfort, and maybe even flourish, at end of life; and (3) provide an agenda for research that addresses how palliative care research can advance health equity and how a focus on equity can advance palliative care science. A variety of inequities reinforce social vulnerability and disadvantage throughout the life span and can have profound effects on children, particularly children with serious illness or at the end of life. Ethical care for these children requires recognition of the social determinants of comfort.

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“…Our first step was to review research priorities previously identified by PPHC leaders and experts, as well as by parents. 73,74 We then explored where we have been as a field over the previous 5 years and where we need to go next. Using these previous priorities to guide our literature search, we conducted comprehensive reviews of the literature in 4 key areas: communication, systems of care, symptom management, and family impact.…”

Section: Recommendationsmentioning

confidence: 99%

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda

Coats

Doyon

Isaacson

et al. 2023

J Hosp Palliat Nurs

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The Hospice and Palliative Nursing Association established the triannual research agenda to (a) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, (b) guide organizational funding, and (c) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

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Parent Perspective and Response to Challenges and Priorities for Pediatric Palliative Care Research

Cited by 14 publications

References 1 publication

Unheard voices: Underrepresented families perspectives of pediatric palliative care.

Unheard voices: Underrepresented families perspectives of pediatric palliative care.

Social Determinants of Comfort

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda

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