Relatives' needs as caregivers to patients with muscular dystrophy

Abstract

This study sought to explore relatives' needs as caregivers to patients with Muscular Dystrophy (MD). A descriptive non-experimental design, adopting a combination use of qualitative and quantitative approaches was utilized. The study involved a convenience sample of eight participants. Semi-structured interviews were carried out once in participants own home, where relatives' needs as caregivers were explored. The needs for information and the need for specialised health care professionals were the most reported needs. Furthermore, underlying themes that influence needs were also outlined. Themes reported included acceptance and reaction of diagnosis and hope for a better fature. &ale analysis helped to assess patient's ability to perform 17 activities of daily living (ADL 's) such as eating and drinking. Relatives' needs were analysed in relation to patient's abilities to perform ADL 's. No specific correlation was made between relatives ' needs and patient level of dependency. The role of community nurses (MMDNA) and Muscular Dystrophy support group of Malta (MDG) in meeting relatives' needs as caregivers were also explored. It emerged that not all participants are aware of community nurses, with only one participant actually making use of such service. Majority of relatives stated that they have never felt the need for nurses. Conversely, all participants are registered members with MDG. MDG provides the services of various health care professionals, information and general support. With the exception of one, all participants reported a source of help from a nearby relative. Half of the respondents also make use of volunteers to help them in care giving. Some of the proposed recommendations being put forward upon completion of this study include, the increase in public awareness about community nurses; set-up of a specialised MD clinic as part of hospital services and enforcement of continuity of care in health services between primary and secondary care. Furthermore, the incorporation of a genetic module in the undergraduate nursing programme in Malta is also being suggested Study is not without limitations. This was the researcher's first research exercise, and a small sample convenient sample was studied. The strength lies in the fact that qualitative method of data collection was used hence, more in-depth information was obtained.