Uptake and adherence in cardiac rehabilitation
Research type
Research Study
Full title
An exploration of the uptake of and adherence to a UK cardiac rehabilitation programme.
IRAS ID
255718
Contact name
Joanna M Blackwell
Contact email
Sponsor organisation
University of Lincoln
Duration of Study in the UK
0 years, 6 months, 0 days
Research summary
Research Summary
The aim of this qualitative research project is to explore various influences on uptake and adherence to the exercise element of a UK based cardiac rehabilitation programme. This is an important topic to study because previous research tells us that social and cultural influences may be important considerations in a person's choice to take up the offer of cardiac rehabilitation and to continue attending cardiac rehabilitation. Only half of eligible patients actually attend, so it is very important to understand why patients may not be able to attend, or prefer not to attend.The research hopes to be conducted with a hospital NHS trust cardiology department and a community NHS trust cardiac rehabilitation service in the UK and eligible study participants will be those who participate or have chosen not to participate in the exercise element of cardiac rehabilitation. The data collection will take place over a 6 month period and include attendance at cardiac rehabilitation exercise sessions (for attendees) and in the participants own environment (for non-attendees) to undertake participant observations and two interviews.
Summary of Results
The study was titled ‘An exploration of the uptake of and adherence to a UK cardiac rehabilitation programme’ (thesis title ‘Socio-cultural influences on exercise and health along the cardiac patient journey’). It was conducted as part of dual PhD studentship through the University of Lincoln in the UK and the University of Copenhagen in Denmark. Working in collaboration with cardiology and Cardiac Rehabilitation (CR) services in NHS Trusts in the East of England, fieldwork commenced in November 2019 and concluded in June 2020. The PhD thesis was submitted in September 2021, with the oral defence taking place in November 2021. This was successfully passed with minor corrections to the thesis required. The student has completed these corrections and is awaiting approval of the examiners before confirmation of the award can be made.In the UK, there are thousands of cardiac events every year, which include Myocardial Infarctions (heart attacks), heart surgery, device insertions and heart failure. Despite good evidence of the effectiveness of CR in reducing death and further events, only half of patients eligible to attend CR actually do, and further numbers drop out. Additionally, there are disparities noted in terms of numbers of women accessing CR, those of Black, Asian and Minority Ethnic backgrounds, those living in deprived communities, and younger adults who experience cardiac events. These inequalities have persisted for at least the past 15 years, since data began to be collected via the National Audit of CR.
Much research on CR and the cardiac patient journey often focuses on medical and psychological aspects, using existing data, producing statistics and discussing these. Taking a qualitative and sociological view enables people to contribute their thoughts, feelings and lived experiences to research, collating themes within these contributions and using social theory to illuminate certain aspects. Sociological insights into health and illness are not novel, but given the prevalence of Coronary Heart Disease in the UK, the numbers eligible for CR and the inequalities in the uptake of CR programmes, this research contributes to the appreciation of why current policies focused on individual action and responsibilisation, and which utilise a medicalised view of exercise and health, have had limited impact. Given that targets and initiatives have failed to instigate significant change in attendance rates at CR programmes, it is important to investigate in-depth some of the socio-cultural factors shaping and influencing (non)participation. Further, through the exploration of how individuals navigate the recovery stage following a cardiac event, insight can be gained into the complexities of ‘getting on with life’ following serious ill-health. The main objectives of the study were to:
1.Undertake a critical review of the issues surrounding cardiac events and uptake and adherence in exercise-based CR, particularly in the UK 2. Explore aspects of habitus, capital and field in adult cardiac patients and their significant others, and how these may influence practice along the patient journey 3. Explore the intersectionality of age, gender and social class in relation to the cardiac patient journey
Working with the NHS Trusts, the study recruited 17 participants. 10 of the participants were patients accessing cardiology and/or CR services and seven were identified as significant others of patients and subsequently recruited to the study. The fieldwork involved participant observations undertaken over six months, some of which were conducted during CR sessions and others were conducted at community locations or in the homes of participants. There was no requirement for participants to do anything specific or take part in any particular activity for the study, rather the student visited them where they were, which may or may not have involved participation in CR sessions. Each participant was also interviewed twice by the student. The first interview took place during the first few months of the study and the second towards the end. Doing so enabled the student to revisit points raised from the observations and first interview. The student also kept a journal, used as a place to note her reflections on her own background, preconceptions and the research process, this was useful in consideration of how these things may influence the study.
The theoretical framework offered by the French sociologist and philosopher Pierre Bourdieu provides a powerful way of illuminating several key aspects in understanding socio-cultural influences on exercise and health, and health care decision making throughout the cardiac patient journey. This includes recognition of both structure and agency, and how the two may interact in the social world, guiding an individual’s chances and choices along the cardiac patient journey. In brief, Bourdieu identified three key concepts: habitus (who one is and where one fits in), capital (the resources held, which can be economic, social, cultural (including physical) and/or symbolic), and field (social spaces). A fourth concept, practice, describes the coming together of all the concepts.
Considering the journey of each cardiac patient was an important part of the study and the findings indicated that each journey is likely to be influenced by many factors and follows three main stages: symptom recognition and treatment, the offer of CR, and recovery. How one approaches each stage and the decisions made about health care can be highly personal and contingent on socio-cultural influences.
1. Approach to cardiac symptoms - Autonomy and control as sub-concepts of the habitus constituted a prominent part of the discussion, where patients had departed from the prevailing doxa and taken control of when and how to seek help for their symptoms. Decisions about seeking help were based most frequently on social position, typically related to capital and positioning within certain fields, such as employment. Informed by material conditions and personal biography, both primary and secondary habitus were found to be influential in guiding action. For instance, a family background that involved caring responsibilities tended either to lead a patient to delay seeking help, or to propel their swift accessing of health care, with the complexity of these circumstances guiding which of these routes was taken and when. Relatedly, significant others were also shown to be an important influence in recognising the severity of symptoms and the effect on their loved one, almost as a reflexive and conscious counter to the pre- reflexive habitus-guided reactions of the patient. The engagement of family can have benefits for both the patient and the significant other, such as encouragement to seek immediate help for symptoms. Family influence is not, however, always beneficial, and significant others may feel a lack of control of the situation and ‘mollycoddle’ the patient, potentially constraining the recovery journey. The influence of others was a significant theme featuring in each phase of the cardiac patient journey.
As part of the habitus, masculinity was also found to be an important aspect of health care decision making amongst male patients and their significant others, with both embodied tendencies and masculine ideals relevant to the demonstration of strength and not showing of weakness. This was a notable finding in the data in relation to military habitus and military masculinity, apparent in the embodied experiences of those with who had served in the Armed Forces. Again, this was an aspect salient to every stage of the patient journey.Finally, the exploration of the significance of place beyond the physical environment was important in acknowledging socio-cultural dimensions as significant influences on symbolic space/place. This was particularly salient to the current study owing to the rurality of the area where the research was conducted, and the relevance of symbolic and physical geography to the perceived accessibility of health care. The significance of space and place in relation to health care decision-making, and particularly the cardiac patient journey, has to date been under-researched and also features in aspects of the discussions on CR and recovery.
2. CR uptake and adherence - The biographical disruption experienced as a result of a cardiac event was evident in shaking the habitus and bodily hexis. Indeed, even the deepest dispositions can be difficult to hold together in crisis situations, which may influence one’s ability to change. In cases where a period of reflection, and in some cases reflexivity, had taken place following hysteresis, this was found to be helpful to the consideration of the compatibility of the habitus to the fields of health care and CR. This also indicated that when CR had been offered early post cardiac event, the response was likely to have been pre-reflective, particularly where the information provided about CR was minimal, unclear or not understood by participants. Importantly, reflexivity is not a universal notion. Its relation to privilege denotes that those with less power (the working class, for example) may be limited in both the perceived control of life and the options available in a given situation. The study indicated that for some patient-participants decisions guided by second nature (in Bourdieusian terms) involved little reflection. In instances that involved reflection on whether to attend CR by patient-participants, the possession of capital assisted in decision making. For example, social capital to support group interactions, and economic capital to support travel expenses.
As Bourdieu reminds researchers, to understand a field one should appreciate that each has its own logic, and CR is no exception. Being able to map out the forms of capital which are at stake, understanding the habitus and doxa that are displayed by those in the field, and considering what practices develop as a result, will assist in gaining a grasp on the pertinent features that have assisted in successful navigation of the field. In conducting an analysis of the different fields, it was possible to investigate features of the subjective aspects and objective structures within the social space. This linked to findings that strongly suggested requisite amounts of capital could assist entry into the field (relevant to uptake of CR), and continued availability of capital (cultural capital via education, for example), could assist in the positioning within the field (relevant to adherence to CR).
Exploration of the data demonstrated that there were different capital and social positioning concerns based on the age, gender, and social class of the patient-participant. For example, the concerns of those who were of working-age were largely driven by social status and economic capital, where the fear of disruption to employment or loss of earnings were reported as reasons for declining or not adhering to CR. Whereas those with distinct personal identities, often related to gender and social class, such as ‘head of the family’ or main carer, sought to maintain their social positioning within these fields. Often this involved engaging with CR so that they could regain control of their bodies, but also in some cases declining to attend so that their position was not perceived as jeopardised.
Dispositions, which relate to the schema within the habitus, were also relevant to the discussion of uptake and adherence in CR, and link to embodied cultural capital, involving, for example the interests, tastes and knowledge one has. It was clear from participants’ accounts that deeply embodied cultural capital can act like a habitus. As part of this, dispositional inclinations that supported PA and help-seeking behaviour were found to be durable in study participants, even being re-enacted in the face of ill-health. The same was also true in reverse, where those dispositionally disinclined to engage in Physical Activity (PA) or health practices were generally unlikely to significantly alter their practice away from age, class or gender expectations. Linked to the discussion on capital above, this was especially the case where social dignity was felt to be threatened by engagement with a new practice.
3. Recovery - Corporeal and psychological dimensions of recovery were noted, which highlighted the feelings of body-mind separation that can occur as the result of ill-health. Such recovery was found to be particularly challenging in younger working-age participants, who expressed difficulty in grappling with what had happened to them against the discourses surrounding ageing, health and illness. Common health discourses assist in developing beliefs within society of what a body should look like and be able to achieve. Whilst the consideration of physical capital and embodied cultural capital assisted in attending to the bodily aspects of recovery, there was an emotional dimension to each aspect of the patient journey, related to the feelings reported by participants, and particularly in relation to other people.
The discussion concerning the influences on recovery also featured the Covid-19 pandemic. Significantly, patient-participants described the socio-cultural impact of the pandemic on their recovery journeys. Newly acquired, or enhanced capital gained as a result of engagement with CR, became superfluous, without access to fields within which to deploy these resources. Alongside this, important elements relating to social position were also affected through restrictions which resulted in employment furloughing and severely limited social contact. The evocative descriptions of stalled and stifled recoveries provided particularly novel insights in a new and evolving area of research, concerned with the wide-reaching socio-cultural impacts of the pandemic.
By viewing the cardiac patient journey as a socio-cultural ‘thing’ rather than just an individualised event, this study has made an original contribution to knowledge via the following:
• Adding to the existing literature utilising Bourdieusian perspectives to illuminate some of the socio-cultural complexities associated with health care decision making, uptake and adherence in CR, and recovery following a cardiac event. Exploring in detail the ways in which the habitus, bodily hexis and capital are affected by ill-health.
• Enhancing understanding of how material conditions and personal biography impact on the formation of practice. This involves habitus (in respect of who one is and where one fits in), capital accumulation (the resources held, which are beneficial to one’s health care decision making and post cardiac event recovery), and field (navigation of the social space).
• Increasing the understanding of the influence of other people on the formation of health care views, health care decision making and recovery after a cardiac event.Whilst this research only scrapes the surface of the wider socio-cultural influences which are pertinent to cardiac patient journeys, it is hoped that health professionals and managers working in cardiology and CR may draw comparisons with their own experiences and consider the transferability of the findings of this study to their settings. Furthermore, by raising interest in sociological research in the context of CHD and CR and the potential benefits this may have on how services are designed and delivered in the future, it is hoped that the value of socio-cultural insights in health and illness continue to gain greater traction, both in terms of research and in practice, within the NHS, the UK government and social policy as a whole in the future.
In addition to the summary provided here, more detailed summaries have been provided to the NHS Trusts engaged and to the study participants. Some of the research has already been disseminated through conference attendance. In the future, it is hoped more can be shared via peer-reviewed journals and a copy of the PhD thesis (once the award is confirmed) will be placed in the repositories/libraries at the University of Lincoln and the University of Copenhagen.
REC name
Yorkshire & The Humber - Sheffield Research Ethics Committee
REC reference
19/YH/0183
Date of REC Opinion
24 Sep 2019
REC opinion
Further Information Favourable Opinion