An evaluation of two decision-making scales for children with life-limiting illnesses

Abstract

Purpose Annually, about 500,000 children are coping with life-limiting illnesses. Many of these children could benefit from pediatric palliative care which provides supportive services. These services can also aid parents in decision making. In order to measure the effect of pediatric palliative care programs on decision making, a valid and reliable tool must be identified. This study aims to validate the psychometric properties of the Decisional Conflict Scale (DCS) and the COMRADE instruments for children with life-limiting illnesses. Methods Analyses were conducted using survey data collected from 266 parents whose Medicaid enrolled children have life-limiting illnesses. Results Results of the analyses suggest that the DCS has better psychometric properties for measuring decision making within the population of children with life-limiting illnesses than the COMRADE. Conclusion Pediatric palliative care programs should use the DCS to measure the effectiveness of services aimed at supporting families with high levels of decisional conflict.

Children's palliative care in low- and middle-income countries

“…A systematic literature review of CPC in sub-Saharan Africa undertaken in 201033 found only five papers in peer-reviewed journals, four reporting on service evaluation (one with quantitative outcomes,43 three others an evaluation of activity and process31 44 45 and one a programmatic description from two countries: South Africa and Uganda46). The authors suggested the lack of evidence was partly attributable to the challenges in undertaking CPC research, as well as the fact that few reliable, valid and developmentally appropriate methods are available 33 47.…”

“…Priorities for CPC research generally are varied, with research in HICs focusing on issues such as service evaluation,50–52 decision making,46 53 the impact of educational programmes,54 55 telehealth,56 57 preferred place of death,58 resource utilisation and costs,59 60 pain management,40 61 perinatal palliative care,62 screening for palliative care,63 64 and quality-of-life measures 65…”

Does Decisional Conflict Differ Across Race and Ethnicity Groups? A Study of Parents Whose Children Have a Life-Threatening Illness

“…[17][18][19][20] The IOF was developed to measure the impact of children's illnesses on families, but has also been used with families of children with life-threatening illnesses. 13,14 The scale includes 15 items assessing various aspects of family stress and strain in various settings. Response categories for individual items are ''strongly disagree,'' ''disagree,'' ''agree,'' and ''strongly agree.''…”

“…Adolescents in the intervention felt better about their decisions. 12 A study by Knapp and colleagues 13 compared the performance of two decisional conflict scales with 266 parents of children with life-threatening illnesses. Results from the study suggest that the Decisional Conflict Scale (DCS) is a valid and reliable instrument for this population.…”

“…Results from the study suggest that the Decisional Conflict Scale (DCS) is a valid and reliable instrument for this population. 13 Although these studies are insightful, they only provide a paucity of information on parents of children with life-threatening illnesses and they do not indicate how decisional conflict varies across racial and ethnic subgroups. Without an understanding of how decisional conflict differs by patient or family characteristics, it is difficult to strategize about how to implement interventions designed to reduce decisional conflict in particular populations.…”