Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

Abstract

Background Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Methods We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Results Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include “The care team treats my child’s physical symptoms so that my child has as good a quality of life as possible”, “I have regular access to on-call services from our care team”, and “The nurses have the knowledge, skills, and experience to support my child’s palliative or hospice care at home.” Conclusions The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.

A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?

“…However, palliative and EOL care services generally lack standardisation across Scotland and the wider UK resulting in inconsistencies and a lack of equitable access for families [28][29][30]. Moreover, it is a similar picture in other countries, such as the US, where there are few standard models for home-based EOL care due to significant variations in resources, structure of services and regulations across different geographic areas [31][32][33]. Yet there remains a drive by policy makers and commissioners across the UK and beyond [1][2][3] to ensure EOL care and death occurs in a child and family's preferred setting, be that home, hospice or hospital.…”

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools

“…home care). 29 , 32 , 33 , 35 – 37 The primary objective of the studies varied, with the two main aims being to develop and test a tool 24 , 25 , 32 , 35 , 37 or to explore perspectives of parents and/or healthcare professionals about the quality of dying and end-of-life care experiences. 23 , 26 – 31 , 33 , 34 , 36 , 38 , 39 Study participants comprised parents only ( n = 10) 26 , 28 – 34 , 39 , 40 ; healthcare professionals only ( n = 3) 23 – 25 ; parents and partners ( n = 1) 27 ; parents and guardians ( n = 1) 38 and parents and healthcare professionals ( n = 3).…”

“… 23 , 26 – 31 , 33 , 34 , 36 , 38 , 39 Study participants comprised parents only ( n = 10) 26 , 28 – 34 , 39 , 40 ; healthcare professionals only ( n = 3) 23 – 25 ; parents and partners ( n = 1) 27 ; parents and guardians ( n = 1) 38 and parents and healthcare professionals ( n = 3). 35 – 37 , 40 In total, there were 1859 participants involved in the development, validation or use of tools, representing 1048 children and young people. For studies involving family caregivers, participants tended to be female (range 56%–100%) and, when specified, from a white ethnic background (range 72.9%–100%).…”

“…With the exception of one tool, 35 all the other tools were developed for use after death. The time period in which the child’s death had occurred ranged from within a previous 12-month period 25 up to the previous 7 years.…”

Pediatric palliative care has a place everywhere

“…Fortunately, better measures are coming 3,5,11 . Recently, researchers and organizations such as the National Coalition for Hospice and Palliative Care and the Center to Advance Palliative Care have advocated for the expansion of specialty PPC, recognized that PPC quality measures will differ from adult hospice and palliative care measures, and promoted quality measures that emphasize the holistic patient and family experience.…”