ABSTRACT
BACKGROUND: There is a growing impetus across the research, policy and practice communities for children and young people to participate in decisions that affect their lives. Furthermore, there is a dearth of general instruments that measure children and young people's views on their participation in decision-making. This paper presents the reliability and validity of the Child and Adolescent Participation in Decision-Making Questionnaire (CAP-DMQ) and specifically looks at a population of looked-after children, where a lack of participation in decision-making is an acute issue. METHODS: The participants were 151 looked after children and adolescents between 10-23 years of age who completed the 10 item CAP-DMQ. Of the participants 113 were in receipt of an advocacy service that had an aim of increasing participation in decision-making with the remaining participants not having received this service. RESULTS: The results showed that the CAP-DMQ had good reliability (Cronbach's alpha = 0.94) and showed promising uni-dimensional construct validity through an exploratory factor analysis. The items in the CAP-DMQ also demonstrated good content validity by overlapping with prominent models of child and adolescent participation (Lundy 2007) and decision-making (Halpern 2014). A regression analysis showed that age and gender were not significant predictors of CAP-DMQ scores but receipt of advocacy was a significant predictor of scores (effect size d = 0.88), thus showing appropriate discriminant criterion validity. CONCLUSION: Overall, the CAP-DMQ showed good reliability and validity. Therefore, the measure has excellent promise for theoretical investigation in the area of child and adolescent participation in decision-making and equally shows empirical promise for use as a measure in evaluating services, which have increasing the participation of children and adolescents in decision-making as an intended outcome.
Subject(s)
Decision Making , Patient Participation , Surveys and Questionnaires , Adolescent , Child , Female , Humans , Male , Models, Psychological , Northern Ireland , Patient Advocacy , Psychometrics , Reproducibility of Results , Young AdultABSTRACT
This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and well-being [36-item short-form health survey (SF-36)] and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers' needs were largely unmet. In particular, there appeared to be a need in relation to statutory healthcare provision, information, psychological support and involvement in decision-making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared with cancer survivors. Compared with UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver's health long after treatment has ended. Providing appropriate and cancer-specific information may alleviate difficulties and improve health and well-being. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.
