International evidence indicates that long-term condition in early-life can affect not only the individuals’ health and wellbeing across the life-course, but also the whole family’s health and wellbeing. Although families respond differently to long-term conditions, the family response is closely related to clinical outcomes. Research indicates that family relationships have the potential for health-promoting effects and although models of family-focused care across the life-course are delivered in some countries, as yet they do not appear to be embeded within UK health and social-care systems. Family- focused care in a broad context is an approach to care delivery, whereby health professionals, respect and respond to the needs of the patient and their family as a complete unit, recognising the family role in supporting and being involved in care (Foster, et al. 2016; Grant, et al. 2016). In order to establish the extent to which family-focused care for persons with long-term conditions exists across the life-course we have established a virtual, multidisciplinary research development group: ‘Family health and social-care research across the life-course’ that combines expertise in long-term conditions research, psychology, nursing, social-care with patient/carer experience to meet the following objectives:
- Systematically review the UK literature in this area;
- Harness existing links with international family experts;
- Establish a Patient and Public Involvement and Engagement Advisory group to advise from family perspectives;
- Define aims/objectives for future collaborative grant application/s around support strategies where a family member has a chronic/long-term condition.
Since the project inception event in April 2016 that aimed to determine groups’ aims, objectives and milestones we have:
- Convened the PPI group;
- Developed a project web-page to support dissemination and demonstrate collaboration http://www.whiterose.ac.uk/collaborationfunds/fostering-and-sustaining-uk-multidisciplinary-family-focussed-care-across-the-life-course/;
- Delivered a 1.5 day workshop for the applicants, consumers and key UK family-focussed colleagues, and expert Master Classes with international experts:
- Developed and begun a systematic review of reviews protocol to summarise and synthesis the findings of systematic reviews of family-focused care, family-centred care and family-focused practice across the life course in the context of supporting families where a family member has a long-term condition using the Joanna Briggs Institute methodology for ‘umbrella reviews’.
It is anticipated that a new and potentially transferrable model for fostering and sustaining family-focused health-care across the life-course in one global region will be developed. The benefits of establishing a collaboration to identify research priorities for family-focused care for persons with long-term conditions and a Patient and Public Involvement and Engagement Advisory Group has the potential to ground the model in real-world, family insights and experiences.
See more of: Evidence-Based Practice Sessions: Symposia