Fostering and Sustaining Family-Focused Healthcare Across the Life-Course: A Transferrable Model Between Countries?

Friday, 28 July 2017: 3:30 PM

Joanna Smith, PhD
Academic Unit of Adult, Child and Mental Health Nursing, School of Healthcare, University of Leeds, Leeds, United Kingdom
Veronica Swallow, PhD, MMedSci, BSc (Hons)
School of Healthcare, University of Leeds, Leeds, United Kingdom
Veronica D. Feeg, PhD
Division of Nursing, Molloy College, Rockville Centre, NY, USA

Care of persons with chronic or long-term conditions is a key international health-policy priority. Around 15 million people in England live with one or more long-term condition, which impacts on the whole family’s health & wellbeing with family members contributing to care. The Kings Fund report Better Value in the NHS (2015) predicts that improving service quality and cost-effectiveness for people with long-term conditions is critical because 70% of UK health/social-care spending is focused on individuals with long-term conditions.

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:

  1. Systematically review the UK literature in this area;
  2. Harness existing links with international family experts;
  3. Establish a Patient and Public Involvement and Engagement Advisory group to advise from family perspectives;
  4. 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:

  1. Convened the PPI group;
  2. Developed a project web-page to support dissemination and demonstrate collaboration;
  3. Delivered a 1.5 day workshop for the applicants, consumers and key UK family-focussed colleagues, and expert Master Classes with international experts:
  4. 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.