Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care

Donnelly, J. P.; Downing, K.; Cloen, J.; Fragen, P.; Gupton, A. W.; Misasi, J.; Michelson, K.

J Pain Symptom Manage. 2017 Dec 31; 55(4):1077-1084.e2


CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families. OBJECTIVES: This study examines the psychometrics of and respondents' perceptions about the PCNeeds. METHODS: Parents of children in four outpatient pediatric palliative care programs completed the PCNeeds and the World Health Organization Quality of Life-Brief tool (WHOQOL-BREF). Parents answered questions about demographics and the experience of completing the PCNeeds. Internal scale reliability was measured with Cronbach's alpha. Validity was assessed by correlating the PCNeeds total and subscale scores with the WHOQOL-BREF subscales. Additional respondent perceptions were obtained via written comments and analyzed using content analysis. RESULTS: The 93 respondents were predominantly female (n = 69, 74%); white (n = 79, 85%); college graduates (n = 71, 76%); and married or partnered (n = 75, 81%). Internal reliability was acceptable (Cronbach's alpha = 0.83), and validity correlations with the WHOQOL-BREF subscales were consistent with theoretical expectations (moderate negative correlations ranging from -0.36 to -0.51). The most frequently cited need not addressed by our survey was sibling impact (n = 17, 18%). Twelve parents (13%) indicated that no content was missing. The least met needs were financial impact, family impact, and the child's physical problems besides pain. Sixty-eight percent of parents (n = 63) rated completion of the survey as "easy" or "very easy." CONCLUSION: Initial psychometric analysis of the PCNeeds is encouraging, but further study of reliability and validity with more diverse respondents is needed.

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