Determining caregiver needs for respite, results of an Alabama survey

Abstract

Background: The Alabama Lifespan Respite Resource Network™ enhances respite services for family caregivers with federal and state support. University evaluators assisted the Network to conduct a first statewide assessment of family caregivers using multiple formats (mail, in-person, online, phone). The purpose was to determine met and unmet needs for respite among families with relatives who have a disability or chronic illness. Results will be used to plan outreach education and match services to caregivers’ needs.

Methods: A family caregiver survey was developed after reviewing professional literature and vetted with agency professionals and family caregivers. A total of 49 items were grouped into 4 general categories: service needs, demographics, caregiver expectations, and identification of service providers. State and local agencies serving children and adults with disabilities and chronic illness promoted caregiver participation and disseminated printed and online surveys statewide.

Results: Of 884 individuals completing the survey, 54% provide daily care to a female with a disability or chronic illness and 52% of these were parents. Data indicated some family caregiver needs were met; however, 50% could not locate respite care at least once. Nearly 25% did not know how to request respite and worried about finding a qualified caregiver. Although 60% reported less than $40,000 annual income, only 20% received a Medicare waiver. Caregivers’ responses indicated 5 types of expectations for how respite services will help their family. The three most frequent types of expectations were attending to family caregiver’s needs, helping with activities of daily living, and caring for others in my family. The two other expectations were providing financial assistance to pay for respite; and caregiver continuing education, providing therapies or medical treatment.

Conclusions: Respite services enable families to effectively care for relatives with disabilities and chronic conditions in communities. A majority of respondents to the Alabama survey who received respite praised its benefits and would feel stressed if respite was unavailable. Unfortunately, nearly half felt the most recent respite was insufficient to meet their needs, straining their caregiving capacity. Nurses and nurse educators have important roles to play, sharing information about respite services and providers with their patients, advocating for services to be provided to family caregivers, and participating in training paid and volunteer respite providers.