Needs of carers of severely disabled people: are they identified and met adequately?

Objective: To examine the unmet needs of informal carers of community dwelling disabled people and to compare their perspectives to those of disabled people and nominated professionals. It was hypothesised that a poor recognition of carers’ needs could have implications for carers’ well- being and thus their ability to maintain their caring role. Need was defined as a service or a resource that would confer a health or rehabilitation gain.

Design: Face to face interviews with carers and disabled participants, telephone interviews with professionals (Southern England). Disabled participants had been selected randomly from two disability registers.

Main outcome measures: The Southampton Needs Assessment Questionnaire (carers version), SF-36 (carers’ health status).

Results: Carers experienced similar health status to people in the general population. The most frequently carer-reported unmet needs were for short breaks, domestic help and respite care. Carers who had reported unmet need for short breaks had significantly poorer levels of mental health and vitality (SF-36) than carers who had not reported this. Similar numbers of unmet carers’ needs were reported by disabled participants, professionals and carers themselves. In terms of type of unmet needs, poor concordance between carers and disabled participants occurred in 52% of cases: carers reported more unmet needs than disabled participants for short breaks and domestic help. Poor concordance scores between carers and professionals occurred in 59% of cases: carers reported more unmet needs for short breaks than professionals and professionals reported more unmet needs for formal respite care.

Conclusion: In line with recent legislation, carers’ needs must be independently addressed and services, especially for flexible community support such as short break services, must be developed specifically to meet the needs of carers. Further research is warranted to evaluate whether recent legislation for carers has any effect on carers’ well-being and ability to cope with their caring role.