TY - JOUR
T1 - 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
AU - Namisango, Eve
AU - Bristowe, Katherine
AU - Murtagh, Fliss E.M.
AU - Downing, Julia
AU - Powell, Richard A.
AU - Atieno, Mackuline
AU - Abas, Melanie
AU - Ali, Zipporah
AU - Luyirika, Emmanuel B.K.
AU - Meiring, Michelle
AU - Mwangi-Powell, Faith N.
AU - Higginson, Irene J.
AU - Harding, Richard
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was partly funded by AIDSTAR-One and the Open Society Foundation as BUILD care African funders, with the latter being funded through an unrestricted grant. The funder played no role in the study design, the collection, analysis, and interpretation of the data, the writing of the report, or the decision to submit the paper for publication.
Funding Information:
RH is supported by the NIHR Applied Research Collaboration (ARC) South London (SL) at Kings College Hospital National Health Service Foundation Trust. RAP’s independent contribution to this article is supported by the National Institute for Health Research Applied Research Collaboration Northwest London. FM is a National Institute for Health Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care.
Funding Information:
The authors express their sincere gratitude to the following sites that participated in the development and validation of the C-POS: Nyahururu Hospice, Kenya; Nyanza Public General Hospital’s children’s oncology ward, through Kisumu Hospice, Kenya; Isibani Sitembi, South Africa; Soweto Hospice, South Africa; Red Cross Children’s Hospital, South Africa; Hospice Africa Uganda; Mildmay Uganda; Mulago National Teaching; and Referral Hospital, Uganda. We also thank the research assistants who undertook data collection, and all the children, their caregivers and facility health workers who provided the data on which these findings are based. Our data can be accessed by contacting the lead author. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was partly funded by AIDSTAR-One and the Open Society Foundation as BUILD care African funders, with the latter being funded through an unrestricted grant. The funder played no role in the study design, the collection, analysis, and interpretation of the data, the writing of the report, or the decision to submit the paper for publication.
Publisher Copyright:
© The Author(s) 2022.
PY - 2022/7/1
Y1 - 2022/7/1
N2 - Background: 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. Aim: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. Design: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. Results: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (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. Conclusion: 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.
AB - Background: 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. Aim: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. Design: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. Results: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (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. Conclusion: 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.
KW - Africa
KW - C-POS
KW - children
KW - cognitive interviewing
KW - content validity
KW - Paediatric palliative care
KW - PROMs
UR - http://www.scopus.com/inward/record.url?scp=85131601096&partnerID=8YFLogxK
U2 - 10.1177/02692163221099583
DO - 10.1177/02692163221099583
M3 - Article
C2 - 35656638
AN - SCOPUS:85131601096
SN - 0269-2163
VL - 36
SP - 1140
EP - 1153
JO - Palliative medicine
JF - Palliative medicine
IS - 7
ER -