Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries.

Abstract

The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. Mixed methods (1) <i>Content validation</i>: mapping C-POS items onto an evidence-based framework from prior evidence; (2) <i>Comprehensiveness, comprehensibility, acceptability feasibility, and implementability</i>: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (<i>n</i> = 6), family caregivers (<i>n</i> = 16), and health workers (<i>n</i> = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. (1) C-POS content mapped on to palliative care domains for (a) children (i.e. <i>physical</i> (e.g. symptoms), <i>social</i> (e.g. play/socialize), <i>psychological</i> (e.g. happy)) and (b) families (i.e. <i>psychological</i> (e.g. worry), <i>social</i> (e.g. information), and <i>help and advice</i>). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.