Learning to live with a long-term condition in adulthood can be challenging. From the uncertainty at diagnosis, to new treatments and different ways of living – it’s a rollercoaster of a journey – physically and emotionally. For a child, this journey can be even more turbulent, in addition to the existing challenges facing the youngest generation in society. For the parents and carers of these children, this journey can be equally difficult, demanding more of their time, energy and emotions as they do their very best to support their precious child.
The care of people with long term conditions is a key health policy priority, given that long-term conditions account for approximately 70% of health and social care spending. In a growing and ageing population, improvements in service quality, efficiency and cost will increasingly present challenges for both people with long-term conditions, and healthcare providers.
Evidence suggests that long-term conditions in early life can affect an individuals’ health and wellbeing across the life course. In England alone, there are around 15 million people living with one or more long-term conditions – that’s a quarter of population in England. Then, you need to take into consideration family members who may contribute to the care of a relative living with a long-term condition. One person’s long-term condition can impact on the health and wellbeing of the entire family. It’s evident that family relationships may have health promoting effects; yet, the health and social care environment in the United Kingdom doesn’t reflect this family-focused approach, failing to acknowledge the real world reality of living with a long-term condition.
In 2013, the Chief Medical Officer, Professor Dame Sally Davies, urged healthcare professionals to think ‘family at every interaction‘, in order to centralise family health and wellbeing to multi-professional practice. To do this, innovative tools to support this approach are needed. Little is known about how health and social care professionals in the United Kingdom (UK) understand family support, how family life, family health and social care intersect, or what tools and interventions exist to support and promote family-focused care for individuals and families living with long-term conditions. From these findings, an international White Rose collaboration evolved, between the Universities of Leeds, Sheffield and York.
Fostering and sustaining UK, multi-disciplinary, family-focused care across the life course: a White Rose collaboration in long-term condition management
I was thrilled to be part of an exciting workshop held on Monday 7th and Tuesday 8th November, which was planned as part of this collaborative project to explore and discuss family-focused care across the life course in the UK. Led by Professor Veronica Swallow and Professor Angela Tod, and co-ordinated by Dr Joanna Smith, the workshop brought together researchers and lay representatives to explore the most recent evidence around family-focused care, in order to identify an action plan to drive future research in family health.
The two day workshop, held in the charming Devonshire Hall, began with a welcome to the University of Leeds from Professor Andrea Nelson, Head of the School of Healthcare and Deputy Dean for the Faculty of Medicine and Health. Professor Swallow and Professor Tod then set the scene of family-focused care from political, practical and policy perspectives. We were also extremely fortunate to be joined by four international experts: Professor Linda Shields, Professor Kathy Knafl, Professor Marcia van Riper and Dr Birte Østergaard. They shared their invaluable experiences, and enriched the discussions throughout the workshop.
The empirical evidence of family-focused care
Professor Linda Shields shared findings from a 2012 Cochrane systematic review update on family-centred care of hospitalised children, aged 0 to 12. Professor Shields and co-authors of this update concluded that there is limited, moderate-quality evidence that suggests some benefit of a family-centred care intervention for children’s clinical care, parental satisfaction, and costs. However, this assumption is based on a small dataset. They also highlighted the absence of high-quality quantitative research about the effects of family-centred care. From this review, the need for further rigorous research on the use of family-centred care as a model for care delivery to children and families in hospitals was highlighted, with the caveat of including a wide range of outcomes for children, parents, staff and health services.
Dr Jo Smith then provided a summary of steps taken to develop a systematic review protocol to understand the family-focused care landscape in the UK. Dr Smith and the project team in their preparation for conducting the review noted that, despite arriving at a similar long-term outcome, the views and experiences of health professionals, children and their families diverge, each taking a different path throughout the journey of life with a long-term condition. Also, in health and social care, we often ‘forget’ about the carers, who help to look after those with long-term conditions. To the surprise of many, 1 in 4 millennials are carers – so a very young population of people are caring for others in a formal or informal carer role. Thinking about these individuals in the context of family-focused care, who then cares for the carers?
“Millennials, also known as Generation Y, are people reaching young adulthood around the year 2000.”
We keep referring to family in the context of human society – as the people affiliated to individuals either by consanguinity, affinity, co-residence or a combination of these relationships. Stereotyping the family unit in this way means that we make assumptions about the meaning of family. Whilst we think of it in this context, it’s highly important to recognise that family isn’t a static definition when focusing on family-centred care – rather, it is a fluid construct. The definition of family-centred care has also be questioned, as some believe that it sets parents and carers at the centre of the child’s long-term condition. Bernie Carter has suggested that the term child-centred care is used, to embrace the concept that children and their interests need to be at the centre of our thinking and our practice. This approach lends itself to the increasing drive for personalised healthcare, because one size does not fit all. Interest in personalised medicine, from a clinical perspective, is gaining momentum – such as in the field of immuno-oncology. However, personalised medicine from a sociological and health delivery perspective is lagging behind. The conceptual and methodological issues associated with this arena of research are, in part, responsible for this delay in application to practice, as well as the political framework which restricts fluid and adaptive processes in health and social care.
“Family-focused care 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.” A working definition of family-focused care, embracing the concepts of family-centred and child-centred care.
Models of family-focused care: concepts, implementation and evaluation
Building on the first sessions of the workshop, Professor Kathy Knafl and Professor Marcia van Riper went on to discuss concepts, implementation and evaluation of family-focused care, by sharing ten top tips and useful resources for family researchers. First and foremost, it is essential to make a compelling case for taking a family focus – taking into consideration expected outcomes, funding priorities and the added value of embedding the family perspective into research. In order to do this, you must do your homework! Professor Knafl emphasised the importance of conducting a scoping review to map the territory. In doing so, you will identify key characteristics of the existing literature, and you will identify some of the gaps which warrant further investigation. From here, it is good practice to clarify and align your family focus, by defining and positioning ‘family’. From there, you must determine your measurement unit, and its appropriateness. Using the 4Ws framework will help this stage of your thinking, by identifying who is your target population, what variables you wish to assess, when you will collect data, and where you will collect data – which shouldn’t be inconvenient to individuals and families participating in research. When you reach the analysis phase of research, it is desirable to adapt your analysis to family data, particularly when multiple family members are involved. There are a number of family-friendly analytic approaches, such as the Actor-Partner interdependence model and cluster analysis. Finally, it’s important to remember that family research is a team endeavour, with input from non-family researchers, to build clarity and transferability of the research outcomes to influence practice. Dr Berte Østergaard helped to visualise these models of family-focused care by sharing her experience of developing family cardiology nursing in Denmark. She highlighted the Calgary Family Assessment and Intervention Model, recognised by the International Council of Nurses as one of the four leading family assessment and intervention models in the world. It has been translated into eight languages, and is used in over 25 countries around the world.
Using conceptual frameworks to guide collaborative research endeavours
Looking forward, as patients, carers, researchers and healthcare professionals, we must use clear strategies to embed individuals and families into everything that we do. Professors Knafl and van Riper presented some common measures of family functioning. However, they emphasised that researchers must critically question their decisions – by asking themselves whether selected measures have been appropriately developed for the ages and circumstances of individuals and families involved in a given research study. Taking this into consideration, it isn’t difficult to believe that in a review exercise, over 700 different outcome measures were identified in relation to family-focused care! Whilst it’s okay to use different measures in different circumstances, it is important for researchers to have a common ground – where some core measures are shared. This comes back to the silo mentality of research and clinical disciplines. Now, we should try to look at things a little differently. For example, look at how different conditions and approaches are similar – such as grouping conditions by shared characteristics, whether they be progressive conditions or relapse-remission conditions. In addition, we must begin to incorporate health economic analyses into ongoing research endeavours, to identify whether interventions are cost-effective, both in the short- and long-term, to children, their families and the National Health Service alike.
Using the experiences of children, parents, carers and professionals to drive positive change
Based on discussions throughout the morning workshop, we developed five key areas to discuss in sub-groups:
- Making sense of the evidence base for family-focused care;
- Identifying the components of good outcome measures;
- Using patient experience to inform practice;
- Defining family and measures to maintain contextual flexibility;
- Teasing out the assumptions about family-focused care.
During sub-group discussions, we delved deeper into our experiences and understanding of family-focused care, based upon personal and representative experiences of using health and social care as patients and carers, and delivering health and social care of health professionals. I joined sub-group three, and there certainly wasn’t any time for an awkward silence! Rich and diverse experiences (positive and negative) were shared. Notably, we wanted to better identify how experiences change across the life course – as people age, as their health changes, as their skill set changes, and as their personal, social and professional lives change. Sometimes, as a patient, you may feel that healthcare professionals don’t take notice of your concerns. Their priority may appear to be clinically-focused – for example, reducing disease activity. However, your priority may be about finding the energy for you to be able to go to work and have a social life outside of working. This imbalance in addressing priorities can escalate, whereby patients lose trust in their healthcare professional, and communications can begin to break-down.
“As a patient, I feel as though I’m expected to fit within a pre-defined box. I’m a patient with x disease in one clinic, and a patient with y disease in the second clinic. What happened to me being a person – with thoughts, feelings and emotions? I shouldn’t be labelled simply by the disease of which I have to live with.”
As discussions progressed, it became evidently clear that the fragmented health and social care services is negatively impacting patient and family experience. From disjointed communication, to service delivery constraints, we were left with the unanswered question of ‘Whose time matters?’
With so much to do, it is clear that we’ve got a long way to go until we develop family-focused care which is not only efficacious, but is also realistic, practical, personalised and cost-effective. As we move forward in developing family-focused care, widespread adoption of a family systems perspective that incorporates family system constructs and understands children with feelings and emotions (rather than patients with textbook conditions) is, in my opinion, going to influence the way that children and families live with long-term conditions, and the way in which health and social care services deliver collaborative and integrated care. In parallel, we need to develop evidence-based teaching practices of health professionals, by embedding a research culture into undergraduate and postgraduate teaching of nurses, allied health professionals and medical students, whereby research is an integral part of their learning experience. Finally, we need to go to further lengths to demonstrate and disseminate the findings, benefits and excitement of family-focused research – to patients, families, health professionals and the wider community. Perhaps we can learn a thing or two from Professor Brian Cox…
“And for me, our true significance lies in our ability to understand and explore this beautiful universe… on the border between the known, and the unknown. That is the true wonder of the universe.” Professor Brian Cox