RESEARCH UNDERWAY

Interactions between health professionals and family carers of individuals with a neurological disability

Project team

Prof Gwynnyth Llewellyn
Dr Suzanne Leigh Snead
Dr David McConnell
Angela Dew

Overview

Adults with severe neurological disabilities become reliant on family members for care and support in all areas of their daily lives. For adults struck down by severe neurological impairment several decades of family care and support lay ahead.

Health professionals play a major role in the rehabilitation of individuals with severe neurological disability. From the early days in hospital, physiotherapists, occupational therapists and speech pathologists form part of the rehabilitation team aiming to achieve the greatest degree of independence possible for the adult with a neurological disability. After discharge, therapists continue to work with the client and their family members, who often become the primary care provider.

Despite the rapidly growing demand for health professionals to interact with family carers there is a major gap in knowledge about how they go about the task of working with family members as care providers. Health professionals responsible for adults with a severe neurological disability are specifically challenged to negotiate care, knowledge and resources with the family carers supporting that adult. Exploring and understanding health professional practice in serving family carers of adults with neurological disabilities is the first step to defining best practice in this rapidly expanding area of family care for severely disabled individuals.

Approach

There will be two samples of key stakeholders, a group sample of health professionals from occupational therapy, physiotherapy and speech pathology, and a group sample drawn from consumer organisations representing people with neurological disabilities.

Participants will be invited to participate in either a focus group for professionals or for representatives of consumer organisations as appropriate to explore current health professional practice with family carers.

Focus groups are the procedure of choice for this exploratory study to permit participants to express common and divergent viewpoints in response to the topics presented. If however any participant is unable to attend a scheduled focus group, an individual interview will be arranged at a mutually convenient time and location. If needed, individual interviews will be guided by the focus group schedule with wording adapted to suit the individual interview situation.

Anticipated outcomes

This exploratory study is the first phase in a program of research that aims to design solutions to ensure positive health and wellness outcomes for families caring for adults with a neurological disability. Models for best practices in family centered care to enable optimal carer health and to reduce the likelihood of placing family members with neurological disabilities in institutional care will result from this program of research.