Evaluating The Reliability And Validity Of A New Pediatric Palliative Care Needs Assessment Tool

Title

Evaluating The Reliability And Validity Of A New Pediatric Palliative Care Needs Assessment Tool

Creator

Michelson K; Downing K; Rudnik M; Cloen J; Donnelly J

Identifier

DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.140

Publisher

Journal Of Pain And Symptom Management

Date

2016

Description

Objectives
Describe categories of need faced by parents and
patients in pediatric palliative care.
Describe unmet needs faced by parents and patients
in pediatric palliative care.
322 Schedule with Abstracts Vol. 51 No. 2 February 2016
Describe potential uses for a needs assessment
tool in the delivery of pediatric palliative
care.
Original Research Background. Despite the challenges
faced by children with life-limiting conditions
and their families, there is no validated needs assessment
tool for use in pediatric palliative care. To
address this gap, we developed the Parent/Child
Needs Tool (PC Needs), which assesses physical, psychological,
social, and healthcare team needs.
Research Objectives. Test the reliability and validity
of PC needs, and identify unmet needs in pediatric
palliative care.
Methods. Four community-based organizations in
Chicago, IL and Rochester, NY distributed surveys
to parents of pediatric palliative care patients. The
surveys included three sections: parent demographics;
the PC Needs (22 items rating degree of
need from 1e10 and scored by adding responses);
and the World Health Organization Quality of Life
(WHOQOL-BREF) tool (26 items measuring four
domains: physical, psychological, social and environmental).
We assessed reliability using Cronbach’s
alpha and validity by calculating correlations between
the PC Needs score and WHOQOL-BREF
domains.
Results. Surveys were collected from 82 parents, ages
26 to 64 (Mean¼ 42). Parents were: 73% female and
89% white, 5% African American and 6% Other.
The mean PC Needs score was 81.3 (range¼
25e139, SD¼26.4). The lowest rated (most fulfilled)
needs were palliative care team respect for child and
parent and parent-child relationship. The highest
rated needs were impact of the child’s illness on the
family; managing physical problems; and financial
needs. Reliability (Cronbach’s alpha) was 0.83. Correlations
between the PC Needs score and the
WHOQOL-BREF domains were in the predicted direction
(i.e., greater need¼lower quality of life): Physical
r¼-0.44; Psychological r¼-0.55; Social r¼-0.59; Environmental
r¼-0.45 (all p<.001).
Conclusion. The PC Needs Tool is a reliable and
valid needs assessment measure for pediatric palliative
care. Unmet needs reported by parents included
impact on the family, physical problems, and finances.
Implications for Research, Policy, and
Practice. Future work will assess the use of the PC
Needs in clinical care

Rights

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).

Citation List Month

March 2016 List

Citation

Michelson K; Downing K; Rudnik M; Cloen J; Donnelly J, “Evaluating The Reliability And Validity Of A New Pediatric Palliative Care Needs Assessment Tool,” Pediatric Palliative Care Library, accessed July 25, 2021, https://pedpalascnetlibrary.omeka.net/items/show/10564.

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