The health of caregivers for children with disabilities: caregiver perspectives

Background There are an estimated 5.9 million children with severe disabilities in the USA, and most of them are cared for at home by their parents and families. Indirect evidence suggests that poor caregiver health may contribute to recurrent hospitalizations and out-of-home placements for children with chronic conditions and disabilities. Greater knowledge of caregiver health-related needs would allow for the improvement of existing services and the development of new strategies to sustain caregivers in their vital roles. This study explores caregiver perspectives of the health implications of long-term informal caregiving for children with disabilities. Methods Forty parents/caregivers of children with disabilities residing in urban, suburban and rural regions of Utah completed questionnaires and participated in focus groups that explored their feelings regarding their current physical and emotional health and the factors that they viewed as either impairing or promoting their health. The sessions were audiotaped and transcribed. Summary statistics were generated for the questionnaire responses. Focus group content was analysed according to emerging themes and patterns in clusters of information. Results The caregiving experience was captured by five themes: (i) stress of caregiving; (ii) negative impact on caregiver health; (iii) sharing the burden; (iv) worry about the future; and (v) caregiver coping strategies. Forty-one per cent of the caregivers reported that their health had worsened over the past year, and attributed these changes to a lack of time, a lack of control and decreased psychosocial energy. Conclusions Caregivers of children with disabilities describe negative physical, emotional and functional health consequences of long-term, informal caregiving. They have important insights regarding those aspects of caregiving that have positive and negative influences on their health. Interventions that address these issues may have the potential to positively impact caregiver health.