The Educational Needs of Home-Based Stroke Patients and Family Caregivers in Malaysia

Abstract

Many research studies have been done in relation to the educational needs of patients and families post-stroke based in Western countries but limited studies have been conducted in non-Western countries. This study explored the educational needs of home-based stroke patients (HBSP) and family caregivers in the Kelantan state located at the northern part of Peninsular Malaysia. The other areas of focus were to identify the resources available for HBSP and their families, the practice of health professionals in relation to the provision of information and education and the early rehabilitation needs for HBSP and family caregivers. A further aim was to develop education strategies that will help patients and their families to minimise risk of complication post-stroke and support the advancement of their quality of life. This study used a qualitative approach guided by a theoretical framework "Stroke Care Community Model (SCCM)" developed for this research. This study was in two phases. Phase 1 involved semi-structured interviews with three kinds of participants: stroke patients (n=5), family caregivers (n= 5) and key members from health professional groups (n=12). Phase 1 established the educational activities currently received and needed by patients and families. Phase 2 involved presenting the findings from Phase 1 to the previously interviewed health professionals through focus groups and individual interviews with the aim of establishing priorities and processes to develop education strategies for HBSP and their families. The findings revealed that the provision of information and education does not meet the needs of many patients and families. There is no national or local programme provided to address patients' and families' needs. The educational needs are on a wide range of topics including the nature and the impacts of stroke, how and why stroke happens, how to prevent stroke recurring, prevention of complications and promoting faster recovery. The need for skills on managing patients at home include positioning, strengthening, mobilisation, prevention of complications, feeding, swallowing, managing co-morbid conditions, basic exercise and safety. The findings also revealed some needs are religiously and culturally bound around prayer and traditional healthcare practice such as urutan tradisional (traditional massage). Prayer and reciting Holy Qur'an are part of cognitive training, coping strategies, rehabilitation therapy and a source of psychological support. Therefore, there is a need to take the knowledge of what makes a difference to health outcomes of patients and families in a western context and work with this, utilising what is important in the culture of people at a local level. The next step to progress addressing educational needs requires a structured approach involving the formation of a multi-disciplinary stroke team that incorporates cultural and religious practice.