Fostering and sustaining UK, multidisciplinary, family-focused care across the life-course: A White Rose collaboration in long-term condition management



  • Establish a virtual, multidisciplinary research development group (RDG) ‘Family health and social-care research across the life-course’ that combines expertise in LTC research/psychology/nursing/social-care in the three Universities;
  • Systematically review the UK literature in this area;
  • Harness existing links with international family experts;
  • Establish a patient and public involvement (PPI) group of consumers to advise from family perspectives;
  • Define aims/objectives for future collaborative grant application/s around support strategies where family members have LTC/s.


1. Project inception event for applicants/consumers to refine timetable and determine RDG, PPI and ECR groups’ aims, objectives and milestones;
2. Convene PPI group;
3. Develop White Rose project web-page to support dissemination and demonstrate collaboration;
4. Undertake a systematic literature review;
5. Deliver a 1.5 day workshop for the applicants, consumers and key UK family-focussed colleagues, comprising Master Classes by:
a. Professors Knafl and van Riper, America (Conceptual/methodological underpinnings of international family research)
b. Professor Shields, Australia (International evidence for family-centred care)
c. Dr Ostergaard (Developing family-cardiology nursing in Denmark)
6. Draft funder’s report and manuscript reporting review;
7. Define aims/objectives/design for a grant application to begin developing/evaluating; innovative tool/intervention/s to foster and sustain family-focussed LTC care across the life-course.


Care of persons with long-term conditions (LTCs) is a key health-policy priority.  LTCs account for 70% of health/social-care spending.  In Better Value in the NHS (2015) the Kings Fund predicts that improving service quality and cost-effectiveness for people with LTCs will remain critical for the foreseeable future.
International evidence indicates that LTCs in early-life can affect individuals’ health and wellbeing across the life-course. Around 15 million people in England live with one or more  LTCs, family members may contribute to their care and one person’s LTC can impact on the whole family’s health and wellbeing. Families respond differently to LTCs but family response is closely related to clinical outcomes. 
In 2013 the Chief Medical Officer urged professionals to ‘think family at every interaction’ to ensure family-health and well-being is central to multi-professional practice, and to develop innovative tools to support/promote this. Research indicates that family relationships have the potential for health-promoting effects, yet family-focused care across the life-course is not central to the NHS. Little is known about: how UK health and social-care professionals understand family-support; how family-life, family-health and social-care intersect; or what tools/interventions exist to support and promote family-focussed care for those with LTCs across the life-course.  


Swallow V, Smith J, Milnes L, Curtis P, Todd A, Birks Y, Saltiel D, Kirk S

Funding body: White Rose Collaboration Award

Contact: Veronica Swallow