The importance of interactions between patients and healthcare professionals for heart failure self-care: A systematic review of qualitative research into patient perspectives

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.


Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.

How can community health care contribute to self-managing health?

Nowadays, patients are expected to take more and more responsibility in managing their illness/es. For patients to get to a state of self-management they require a lot of support from professionals. However, professional help is time-consuming and expensive. With the number of people with chronic illness growing, alternatives are welcomed. Community health care can be such an alternative.

The WHO  defines community health care “as environmental, social, and economic resources to sustain emotional and physical wellbeing among people in ways that advance their aspirations and satisfy their needs in their unique environment”. Successful community health care practices are exemplified through the availability of social support, health promoting services and amenities, instrumental support and role modelling. These practices allow people to retain, change and maintain their health. Further, through these practices the responsibility of looking after one’s health can become less of a burden for the patients and health system. To show the vast opportunities available, community health care can take place in neighbourhoods, sport clubs, churches or any other social group, essentially by optimizing the environment of the respective community.

Important and unique to community care, compared to professional care, are the positive effects that can come from a sense of belonging.

Community health care and its positive effects

The emotional bonds formed when belonging to a group have long been positively related to health, adjustment and well-being. In contrast, the feeling of not belonging can affect mental health negatively in comparison to when feeling connected, and can consequently negatively impact physical health and life expectancy.

In the context of self-management and chronic disease, support networks have been targeted as part of community health care. Findings show that good quality connections between neighbours can successfully aid people with chronic illnesses in improving health outcomes. Connections were strengthened when people were encouraged to share practical health information, help each other and check on each other, ultimately increasing the likelihood that healthy behaviours were adopted. Another example of strengthening a support network was achieved through training neighbours, trusted role models within a community, to be community health advisors promoting team sports. Research showed that patients were more likely to partake in sport activities led by someone they trust, who knows their local environment and who can offer extra advantages, e.g. socialising and social support. Through the aforementioned means self-manging one’s health becomes more appealing with the community’s support.

Cristina Spoiala

Cristina Spoiala

Cristina worked as a junior researcher at Nivel – institute for health services research in the Netherlands. She has a background in Social & Health Psychology, with a particular interest in community and care collectives, and alongside it Moral Psychology.

How COMPAR-EU contributes to this topic

In COMPAR-EU community interventions are being compared to interventions that take place in more traditional healthcare settings and to usual care. Example community interventions involve families, peers and close friends who were recruited to be trained/to assist in the process of supporting a patient. Researchers in other interventions also involve peers with the same chronic illnesses in order to make online communities available where patients can interact, discuss issues and offer each other social support. We may find from these studies that community health care is as effective as professional care for some health outcomes and may be administratively cheaper. From a further context analysis we will attempt to gain insights into what specific community aspects are helpful in chronic disease self-management.

While I have portrayed community care as a viable positive force for good, that is not to say that there are no disadvantages, as some small scale meta-analyses have shown by their mixed results. It is these mixed results that the current COMPAR-EU will come closer to untangling – answering the question: when and how can community care substitute or add to professional care?