Living with amputations : caregivers' perceptions

Abstract

Family members caring for individuals who have undergone limb amputation are a major concern for society. In many circumstances and for a number of reasons, caregivers may decide to care for their relative with an amputation at home for as long as possible, instead of opting to relocate their relative to residential facilities. However, every family responds differently to such circumstances. One family may find it difficult to accept their relative with this disability, but another may simply be fearful and need more information about what the future holds. Family members who are themselves the primary caregivers of the patient with disability, often provide such care in addition to their other roles and responsibilities. This may leave them exhausted with little time to provide for their own needs and requirements. Often these family members have no means of support for themselves. A lack of information may cause even more frustration for the caregiver if nobody explains to the family that such disability may be altered with prostheses later on with recovery after amputation. This culminates in significant stress on the caregivers due to a great work load coupled with their relatives dependence on them. The aim of this study is to explore the problems encountered by caregivers following a lower limb amputation. A convenience sample of six participants who were the caregivers of a relative with a lower limb amputation were approached to participate in the study. A pilot study was undertaken in order to detect any flaws in the research instrument. Data was gathered by means of semi structured interviews and were analysed using content analysis. The results of this study suggest that the caregivers' major concerns include their lifestyle changes due to the limited mobility of their relative. Furthermore, the needs of the caregivers were identified, and the most frequently reported issues included their need to be provided with adequate information by healthcare providers and the need for rehabilitating their relative with an amputation. Also, the findings suggested a need for psychological support and respite care for such caregivers. Based on the findings of this small scale study, recommendations were generated which include the design and delivery of educational packages for these families. The emphasis should be on teaching coping strategies to the caregivers, enabling them to deal with daily living whilst assisting their relative. In addition, this study is perceived to be of value since it highlights the need to strengthen community-based programmes and addresses the needs of the caregivers. Moreover, if these needs are addressed, the transition from hospital to the home environment would be better facilitated and these families would be more able to take care of their relatives within the community, decreasing the need for residential care.