title: Caring for a disabled child at home: parents' views.
abstract: There are many things to think about when caring for a disabled child at home. Special, and often costly, equipment can be difficult to obtain and information on rights to benefits may not be readily available. Apart from the special needs of the child, carers often find that they have deprived themselves of their own basic personal needs, such as an adequate night's sleep or making the time for proper nutrition. Social activities are also difficult to fit in and the carer of a disabled child may find their friendships are harder to maintain. This article asks parents and carers what they feel would help them in managing disabled children with medical needs at home. Unsurprisingly, having a good community nursing team was seen as pivotal. The article calls for children's nurses to get more involved with issues of disability in helping to ease the burden of managing a child with special needs at home.
authors.forename: Annette
authors.initials: A
authors.lastname: Koshti-Richman
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D017028:Caregivers / Q000193:education / Q000523:psychology*; D002648:Child; D003152:Community Health Nursing; D017281:Cost of Illness; D019988:Children with Disabilities / Q000534:rehabilitation; D006701:Home Nursing / Q000193:education / Q000458:organization & administration / Q000523:psychology*; D006801:Humans; D020380:Needs Assessment / Q000458:organization & administration*; D015404:Nursing Methodology Research; D010290:Parents / Q000193:education / Q000523:psychology*; D010371:Pediatric Nursing; D012944:Social Support; D011795:Surveys and Questionnaires; D016526:Workload