Families Focus on Future

Background Clinical rehabilitation should become more family-centered for several reasons. First, disability not only affects the patients involved but also their significant others. Many spouses and children of persons with disabilities experience high levels of burden of care, depressive feelings and low quality of life. Second, support from family members is often pivotal to maintain participation and quality of life of the patient, and in many cases conditional for the patient to be able to return home instead of a residential care setting. Due to upcoming changes and budget cuts in community care, more pressure will be put on the family to provide care Therefore, it will become even more important that families are well-prepared, and that community care, transportation, return to work, etc are being prepared for during initial inpatient rehabilitation. 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. Objectives The general aim of the Family Focus on Future (FFF)-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 significant others (usually but not necessarily spouses) for long-term adjustment problems; (2) to evaluate a Family Future Conference (FFC) for families at risk on long-term adjustment problems, with at least two structured follow-up contacts with the family. Design The intervention will be evaluated in a cluster-randomized controlled trial with measurements before and after the FFC, and at 3 and 6 months follow-up. A total of 240 patients and their significant others will be included in 12 rehabilitation teams (20 patients/team) in at least 6 rehabilitation centers, 6 intervention teams (2 brain injury, 2 SCI, 2 amputation) and 6 control teams (idem). This sample size is calculated based on an cluster-randomized design with an estimated effect size of 0.5,ICC=0,05, alpha=0.05 and power=0.80. Patients Inclusion criteria are: (1) recent onset of brain injury, amputation or spinal cord injury (traumatic or non-traumatic), (2) initial inpatient rehabilitation, and (3) expected duration of admission at least 4 weeks. Exclusion criteria are: expectation of complete or nearly complete recovery and (2) no informed consent. Primary outcomes of this trial are empowerment, operationalized as disability-management self-efficacy, and participation of patients and significant others, measured 3 months after the FFC. Secondary outcomes are adherence to agreements of the FFC, mood, burden of care, experienced continuity of care, family functioning, and time spending of rehabilitation professionals. In addition to this quantitative evaluation, an independently funded parallel PhD study is planned by the Hogeschool Utrecht to perform a qualitative evaluation of the FFF-intervention from a communication sciences perspective, to provide more insights in the processes and mechanisms of guidance and support for spouses provided by rehabilitation teams in ordinary care and the FFF intervention. Intervention 1. Comprehensive assessment of risk factors for long-term adjustment problems in patients and significant others in the first two weeks of admission. The assessment battery will cover the domains of mood, personality, coping strategies, self-efficacy, lifestyle, existing social network and support and pre-injury social participation. Validated generic instruments will be used so that the same instruments can be used in patients and significant others and reference values will be available. 2. The FFC is a meeting in which the family, supported by the social worker of the rehabilitation team, relevant members of their social network (e.g., children, friends, colleagues) and if applicable community case managers (MEE) 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 social worker will also have at least two follow-up meetings with the family, 6 and 12 weeks after the FFC to monitor agreements of the FFC and arrange adaptations of the action plans if applicable. Pending the results of this trial, a detailed plan to stimulate implementation in other rehabilitation centers will be developed in the final year of this study.