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

Objective To examine the unmet needs of informal carers of community dwelli ng disabled people and to compare their perspectives to those of disabled p eople and nominated professionals. It was hypothesised that a poor recognit ion of carers' needs could have implications for carers' wellbeing 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, telep hone interviews with professionals (Southern England). Disabled participant s had been selected randomly from two disability registers. Main outcome measures The Southampton Needs Assessment Questionnaire (carer s version), SF-36 (carers' health status). Results Carers experienced similar health status to people in the general p opulation. The most frequently carer-reported unmet needs were for short br eaks, domestic help and respite care. Carers who had reported unmet need fo r short breaks had significantly poorer levels of mental health and vitalit y (SF-36) than carers who had not reported this. Similar numbers of unmet c arers' needs were reported by disabled participants, professionals and care rs themselves. In terms of type of unmet needs, poor concordance between ca rers and disabled participants occurred in 52% of cases: carers reported mo re unmet needs than disabled participants for short breaks and domestic hel p. Poor concordance scores between carers and professionals occurred in 59% of cases: carers reported more unmet needs for short breaks than professio nals and professionals reported more unmet needs for formal respite care. Conclusion In line with recent legislation, carers' needs must be independe ntly 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 legisla tion for carers has any effect on carers' well-being and ability to cope wi th their caring role.