Healthcare needs and healthcare satisfaction from the perspective of parents of children with chronic conditions: the DISABKIDS approach towards instrument development

Abstract Aim Increasingly, families' perspectives are taken into account in the appraisal of health services. The objective of this study was to cross‐culturally analyse concepts related to healthcare needs, healthcare utilization and the appraisal and satisfaction with care of parents of children with chronic conditions with the aim of developing a cross‐cultural measure. Methods Several approaches were employed in the study: (i) a deductive approach integrating existing measurements; and (ii) an inductive approach based on focus groups. Focus groups were conducted in seven countries with mothers and fathers as well as their children with seven different chronic conditions, and qualitatively analysed. Results As a result of an evaluation of the different existing methodological approaches, the basic structural components were identified: healthcare needs, the receipt of services, problems with receiving services as well as the appraisal of and satisfaction with the quality of care. While items referring to existing healthcare services were primarily derived by the work of an expert group, items related to quality of care and satisfaction with services mainly evolved from the focus group work. From the focus groups, 367 statements were extracted, which were further processed in a Q‐sort rating by a multinational expert group in order to identify domains and salient items. The draft questionnaire to be pilot tested cross‐nationally consisted of 101 items which were reduced on the basis of psychometric findings. Conclusion On the basis of results of focus groups and existing evidence, a comprehensive measure should be employed in paediatric health services research including structural, process and outcome parameters of care from the perspective of parents.