Assessing needs of families raising a child with a chronic health condition: the OBI-CZ study A content validity study of the Family Support & Needs Inventory
Summary
Background: Families raising a child with a chronic health condition face multiple challenges. Much is known about these challenges, however, little is known about the needs of these families and how healthcare professionals can support them in the most effective manner. Moreover, these needs vary for each family and situation. For families raising a child with a physical disability, a Dutch instrument to inventory their needs was developed previously: the OBI (OndersteuningsBehoefte Inventarisatie [Family Support & Needs Inventory]) checklist. It is expected that this instrument is also useful for families raising a child with a chronic health condition.
Aim: To determine if the OBI checklist is useful for families of children with a chronic health condition, and to validate the content of this instrument for this new population.
Method: The OBI checklist, which consists of 189 possible family needs, was assessed for its relevance by parents of children with a chronic health condition (n=21), and healthcare professionals (n=9) in two paediatric hospitals in the Netherlands. A content validity index was computed for each item in the OBI checklist, to rate each item’s relevance. Additionally, missing items, strengths and weaknesses, and overall usefulness of the OBI checklist were assessed.
Results: Only 14 of the 189 items were judged as less relevant for this population. All other items were found reasonably to highly relevant. Especially items within the domains of ‘diagnosis, development, and expectations’, and ‘medical treatment’ were found highly relevant. The overall usefulness of the OBI checklist scored 7.55 out of 10.
Conclusion: The OBI checklist seems a suitable instrument for identifying needs of families raising a child with a chronic health condition, and can be of great value in family-centred care settings.
Recommendations: Further research is needed regarding family needs based on the child's diagnosis, and severity of the condition.