POWER: family-centered rehabilitation

Background and objectives:
Empowerment of patients and their families, meaning enhancing their ability to handle the consequences of their condition adequately to participate in society, is an important goal of rehabilitation. However, for several reasons these efforts do not reach their goals. Research consistently shows that many patients and their families feel insufficiently equipped for their new life and perceive a discontinuity of care. The general aim of the POWER study is to improve upon current rehabilitation concerning empowerment of patients and their significant others. The specific aims of the study are to: (1) to develop and evaluate a systematic screening on risk factors in patients and their relatives(usually but not necessarily spouses) for long-term adjustment problems; (2) to evaluate a Family Group Conference (FGC) for families at risk on long-term adjustment problems, with at least two structured follow-up contacts with the family.



Paticipants:
Dyads of patients with recent onset of brain injury, amputation or spinal cord injury and their relatives.



Methods:
There is a comprehensive assessment of risk factors for long-term adjustment problems in patients and relatives in the first two weeks of admission. The assessment battery will cover the domains of mood, personality, coping strategies, psychological resources, lifestyle factors, existing social network and support and pre-injury social participation. The assessment battery functions as a screening instrument for ‘high risk’ families. The FGC intervention will only be implemented in ‘high risk’ families in the intervention centers. The FGC is an intervention consisting of three contact moments in which the family, supported by the social worker of the rehabilitation team, and relevant members of their social network (e.g., children, friends, colleagues) will come together to discuss the possible impacts of the condition on activities and participation of the family, to set priorities for support and to make action plans on how to achieve these priorities. The conference will be prepared by the social worker and the family together. Topics to be addressed and persons to be invited will be family-specific. The intervention will be evaluated in a parallel group trial. ‘Low risk’ families and families in the control centers will receive care as usual. All participating patients and their relatives will complete four questionnaires: at admission, at discharge, and after three and six months after discharge.



Outcomes:
It will be evaluated if the FGC will enhance empowerment, operationalized as disability-management self-efficacy, and participation of patients and relatives. In addition, the assessment battery of potential risk factors will be evaluated.

Family Group Conferences will improve disability-management self-efficacy and participation in patients with amputation, acquired brain injury and spinal cord injury and their relatives

Shortly after clinical admission in the rehabilitation centre, at discharge, 3 months after discharge and 6 months after discharge

Patients and informal caregivers in the intervention centres who score low on self-efficacy (high-risk families) will receive the Family Group Conference, consisting of three meetings organised by social work. Aim of the Family Group Conference is to enhance disability-management self-efficacy and participation of the patient and the informal caregiver, with help of their social network. Patients and informal caregivers who score high on self-efficacy and the participating patient and informal caregiver dyads in the control centres receive regular care.