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Developing a Family-Reported Measure of Experiences with Home-Based Pediatric Palliative and Hospice Care: A Multi-Method, Multi-Stakeholder Approach (BMC Palliative Care)

Publication Topics

Adolescents/Children; Health Care Economics; Cost and Utilization Studies; Family, Caregiving and Parental Issues

Publication Type

Journal Article

Publication Date


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<a onclick="OpenPopUpPage('http:\u002f\\u002f_layouts\u002flistform.aspx?PageType=4\u0026ListId={7AAD61FA-4BCB-48C0-B0B7-87AFDC3673EF}\u0026ID=1877\u0026RootFolder=*', RefreshPage); return false;" href=";ListId={7AAD61FA-4BCB-48C0-B0B7-87AFDC3673EF}&amp;ID=1877&amp;RootFolder=*">Jackelyn Y. Boyden</a>

Author 2

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Summary: 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.

Authors developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Their 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, authors conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4).

Findings: 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."

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.


Article 1

Journal Article: Developing a Family-Reported Measure of Experiences with Home-Based Pediatric Palliative and Hospice Care: A Multi-Method, Multi-Stakeholder Approach

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Press Release

Related Link 1

Related Policy Brief: Better Outcomes, Lower Costs: Palliative Care Program Reduces Stress, Costs of Care for Children with Life-Threatening Conditions

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Version: 3.0
Created at 4/8/2021 3:08 PM by i:0#.f|uclachissqlmembershipprovider|celeste
Last modified at 4/12/2021 3:47 PM by i:0#.f|uclachissqlmembershipprovider|celeste