Needs of Families with Children Who Have a Physical Disability: A Literature Review

Assessment of family needs in children with physical disabilities: development of a family needs inventory

“…In addition to 99 family needs previously identified in the literature (Siebes et al . ), parents and healthcare professionals mentioned 41 new items during individual interviews. A further 49 unique needs were identified during expert meetings with healthcare professionals and parents.…”

“…However, the FNI‐PR comprises all items mentioned in other need inventories (Siebes et al . ), complemented with needs mentioned by parents and professionals in the interviews in this study, making it the most complete family needs inventory thus far. All parents were recruited from the caseload in a paediatric rehabilitation centre.…”

“…The initial inventory was derived by reviewing the literature for possible family needs (Siebes et al . ) and consisted of 99 items in 14 domains (‘Diagnosis, development and expectations’, ‘Paramedical treatment’, ‘Aids and adaptations’, ‘Partner in care’, ‘Emotional and practical support’, ‘Raising my child’, ‘Talk about my child’, ‘Family’, ‘Recreational activities’, ‘Transportation’, ‘Law, legislations, funding and finances’, ‘Medical treatment’, ‘Education/employment’ and ‘Other family members’). For each item, parents could tick the options ‘Yes’, ‘Maybe’ or ‘No’.…”

“…As a result, all family needs found in the literature were included in one new list (Siebes et al . ).…”

What do parents need to enhance participation of their school‐aged child with a physical disability? A cross‐sectional study in the Netherlands

“…The FNI‐PR Inventory was developed based on an extensive literature study and discussions with parents and experts (Siebes et al . ; Alsem et al . ).…”