Research on chronic pain, chronic illness and relationship dynamics

Background to the study

Having specialised in the psychological aspects of chronic pain for many years, Dr. Toby Newton-John (University of Technology, Sydney) was increasingly struck by the influence of intimate relationship dynamics on his clients’ presentation and management of chronic pain. This led Dr. Newton-John to reflect, at greater depth, on the role of different types of relationships and the outcomes of pain treatment. An emerging body of research supports this association, and healthcare professionals and clinical psychologists are increasingly acknowledging that intimate relationships are an important variable when managing health and medical issues, and conversely that relationship dynamics influence patient outcomes.

Dr. Newton-John approached Dr. Rebecca Gray (Senior Manager, Research) at Relationships Australia NSW, given the organisation’s interest in conducting research on relationships. Dr. Gray consulted the clinical division of Relationships Australia NSW and presented Dr. Newton-John’s research ideas. This issue resonated with our staff, who also noted that couple therapists and relationships educators rarely discuss health related concerns with their clients in any targeted way. Given the extensive number of factors that emerge in any given session, such as, communication styles, family dynamics, work related stress, and different values relating to parenting, to name a few, it was perhaps not surprising that health related issues may not emerge as a presenting problem. Moreover, we noted that a professional was more likely to have awareness about the impact of chronic pain if they themselves had experience as a patient, or were a carer of someone with pain. Given the potential of chronic pain to place additional stress on couples, and to greatly affect relationship satisfaction, it was suggested that additional professional development relating to chronic pain would be beneficial.

Research aims

A research project was initiated between Relationships Australia NSW and Dr. Newton-John. In the first instance we aimed to understand the prevalence of clients presenting with chronic pain at Relationships Australia NSW counselling services. This figure would then be compared with the National prevalence rates of chronic pain. We would then undertake a fuller survey with those clients affected by chronic pain, and gather information about their relationship style, level of psychological distress, the nature of their pain and any treatment they were receiving.

Preliminary Findings

The prevalence study is drawing to a close, but even a cursory look at the data reveals that the rates of chronic pain amongst our clientele is higher than the National prevalence rates of chronic pain. We also note that most respondents experiencing chronic pain are not attending a pain clinic and tend to use prescribed medication to manage their pain. At this point the Relationships Australia National team contributed support which included applying for funding, which was successful.

The Humankind project

The funding for this national project (working title ‘Open Arms’) was supplied through a Health Access Grant by Medtronic which focuses on health, community, and education. Medtronic is the global leader in medical technology – alleviating pain, restoring health, and extending life for millions of people around the world. Through innovation and collaboration, Medtronic improves the lives and health of millions of people each year.

Medtronic recognised that chronic illness impacts the individual, along with their network of family, friends and peers – and solid partnership, including relationships – are important in aiding, restoring and managing health outcomes. Therefore, we broadened the scope to include all chronic illnesses.  In doing so, we conducted a systematic review of the research in this broader area and noted some similarity with our preliminary work on pain. Namely that, there is growing interest in supporting patients with chronic illness by working within the context of their relationships, but that this work is in its infancy and is under evaluated. This research and website aims to contribute to this knowledge and to building expertise in this area. The final online resource was named Humankind.

Humankind is an evidence based initiative

As a result of the Health Access Grant funding, we were able to expedite the research study underway in New South Wales, and expand the dissemination opportunities of our findings. The funding also enabled us to expand the professional development and public awareness campaign around the impact of health issues on relationships. Given their experience of working in this area, Relationships Australia South Australia (RASA) joined the project, and contributed their experience in web-design, program development and professional development on health and medical issues. RASA also built on the preliminary findings in NSW by conducting their own research in South Australia through consultation with their professional staff.

The aim of Humankind is to raise awareness about chronic illness and how it can affect relationships. Humankind also aims to provide support and tools for people wishing to initiate conversations with loved ones about health and mortality, and how these conversations can be opportunities for growth and intimacy rather than fear and stigma. Humankind also provides tools for professionals who may wish to enhance their practice by bringing “relationships” and “illness” discussions into the clinical encounter. This starting point will allow us to test our findings so far, and build upon what we have achieved by providing an action-research mechanism to further inform work in this area.

Acknowledgements

Relationships Australia would like to take this opportunity to gratefully acknowledge Medtronic who provided a Health Access Grant. It has enabled us to undertake a faster and larger research project, and to turn our findings into an evidence-based support for our clients, clinicians and members of the public who wish to know more about this area.

We also acknowledge and thank the Relationships Australia member organisations’ professional staff across Australia for their expert input and review of this online resource.

Relevant documents: click below to download

Relationships Australia New South Wales are working together with the University of Technology, Sydney to understand how chronic pain affects relationships and what can be done to support those who suffer.  To take part in a survey on the issue click here.