How do facilitators of group programmes for long-term conditions conceptualise self-management support?

Introduction

The increasing prevalence of long-term conditions (LTCs) is a challenge for healthcare providers and systems in terms of healthcare costs and professional resourcing as well as in how to support people to live well with LTCs. ¹ A myriad of health policies, frameworks, strategies and standards for the management of LTCs have emerged in Organisation for Economic Co-operation and Development (OECD) countries, which suggest ways that health professionals should support and deliver care to patients who are living with LTCs. These documents articulate the need for health professionals to help facilitate self-management by fostering skills, knowledge and behaviours that enable their patients with LTCs to take a more active role in their own care.^2–7 In Australia, for example, the 2017 National Chronic Condition Strategic framework advises health providers to support individuals to develop self-management ‘skills and resources’ in the priority area of ‘active engagement’ (p. 24). ² Tested theoretical models and programmes for self-management support emphasise the importance of a specially trained workforce to facilitate patients’ problem solving and goal setting skills, and to help patients build self-efficacy, which responds to the medical, emotional and social aspects of managing LTCs.^8–14

Group-based self-management programmes are a common format used for providing self-management support.^15,16 They also provide opportunities for shared learning and peer support, which is central to programmes based on the lay-led Stanford Chronic Disease Self-management Program.^17,18 Empirical evidence suggests that support from experientially similar others, as found in groups, benefits physical and psychological wellbeing,^19,20 and a recent qualitative review of group self-management support programmes showed participants valued being with similar others and gained confidence from the experience. ²¹ Health professional-led group programmes are a common format and are promoted by condition-specific guidelines.^6,22–24 The extent to which objectives of self-management support articulated in policy and research/theory, and the benefits of support from similar others, are translated into the delivery of health professional-led group programmes is still not well understood.

Overwhelmingly, research evaluating group programmes has focused on changes in biomedical indices and outcomes such as weight, lung function, blood glucose levels and treatment adherence.^25–27 There remains limited understanding of how group programmes are envisaged and developed, and the extent to which the broad range of factors thought to comprise self-management support inform these processes. The need for greater understanding of the ‘breadth of self-management’ in this format has been previously reported. ²⁸ Further, little is known about whether group programmes seek to respond to the experiences, needs and expectations of the individuals who participate in group programmes. Those studies reporting on facilitators’ views have tended to focus on their evaluation of the programme rather than how they conceptualise their role and their experiences of being a facilitator.^21,29–34 In particular, the perspective of group facilitators has rarely been studied; yet, it is the facilitator who is vital to the enablement of self-management support in this format. ²¹

Therefore, in this study, we aim to explore how group facilitators’ conceptualise self-management support in a group programme, their experiences of facilitating, their perception of their role and the challenges they identify.

Methods

Data from interviews with health professionals who are facilitators of group self-management support programmes in New South Wales, Australia were used to investigate their experiences and perceptions. The facilitator interview data used for this study are drawn from a larger qualitative study about the role of goal-setting in chronic condition self-management support that also gathered observation and participant interview data. A qualitative approach was taken to allow an in-depth exploration of the experiences and perspectives of health professionals engaged in group self-management support. We received ethics approval from Sydney Local Health District (Protocol no: X15–0214) and The University of Sydney (Project no: 2016/898) human research ethics committees.

Sample and recruitment

We followed the approach of recent research into group self-management support that considered all LTC group programmes as self-management support if their aim is to support patients’ ‘health-related activities’. ³⁵ We limited to health professional-led programmes for people with one of three chronic conditions (chronic obstructive pulmonary disease (COPD), type 2 diabetes, or obesity) chosen for their high prevalence and management guidelines promoting self-management in a group format.^6,7,36 Using the research team’s networks and web searches, we made contact via email and/or telephone with personnel from group programmes, invited participation and provided a study information sheet. Six programmes were selected across a range of locations (metropolitan/regional) and settings (e.g. hospital/community based). An overview of each of these programmes is included in Table 1. The facilitators of the group programmes were provided an information sheet about the study and invited to participate in the interviews. Study participants were informed that the lead researcher, a PhD candidate and healthcare professional with an interest in LTC management, was collecting interview data for a project on self-management and goal setting. No facilitators refused to participate.

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Table 1.

Overview of programme characteristics.

Programme description (development; guidelines/theory used)	Site	Facilitators; training	Outcomes measured
Diabetes education (external programme; adult learning theories)	Large metropolitan hospital outpatient	Dietitian (n=1); 2 h external	Weight
Diabetes education (developed by facilitators; no theory)	Suburban general practice	Dietitian (n=1) and EP (n=1); no training	Weight, BP, HbA1c, BMI
obesity education, (developed by facilitators; no theory)	Large metropolitan hospital outpatient	Physiotherapist (n=1), nurse (n=1), psychologist (n=1 dietitian (not interviewed); no training	Weight, waist, hip, BMI
Obesity lifestyle education (external programme; no theory)	Rural, community hall/hospital meeting room	Dietitian (n=2) and EP (n=1); facilitator manual, online modules with assessment	Weight, BP, exercise capabilities
COPD rehabilitation (developed by facilitators; national guidelines)	Large metropolitan hospital outpatient gym	Physiotherapist (n=2); internal training and supervision	Weight, height, lung function, respiratory symptoms, exercise capabilities, QOL, depression surveys
COPD rehabilitation (developed externally within local health district; national guidelines)	Small metropolitan hospital outpatient gym	Physiotherapist (n=2); external training and supervision	Weight, height, lung function, respiratory symptoms, exercise capabilities, QOL, depression surveys

EP: exercise physiologist; BP: blood pressure; BMI: body mass index; COPD: chronic obstructive pulmonary disease; QOL: quality of life.

Data collection

In-depth, semi-structured interviews were conducted by the first author between December 2015 and April 2017. Interviews were conducted face-to-face at the site or by telephone, were between 60 and 90 min and were audio-recorded with participants’ consent. An interview schedule was developed based on a review of the literature ²¹ to guide the interviews and included questions about how their programme was designed, what the purpose of their programme was, their role in the delivery of the programme and their perceptions of group participants (Table 2). Following each interview, detailed field notes were taken to initiate reflection and understanding.

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Table 2.

Semi-structured interview question schedule.

Theme	Questions
Working with LTCs	How did you come to be working in group programmes?
	How would you describe your role?
	Did you receive any training before you started this role?
	What did that involve?
The perceived programme purpose	What do you focus on in your programme?
	What do you see as the main purpose of your programme?
	What do you want people to get out the programme?
	What do you think the participants want to get out of this programme?
The group	What do you believe are the benefits/ disadvantages of healthcare in a group?
	What interactions do you see occurring between the members of your groups?
The programme materials	In what ways do you use them?
	How were they developed?
	What are the theoretical/research principles (if any) that underpin the programme materials?
Goal setting	Do you think goal setting is important? Why? Why not?
	Can you give me an example of how you incorporate goal setting into the programme?

LTC: long-term condition.

Results

Thirteen facilitators from six group programmes were interviewed and comprised five professions: physiotherapist, dietitian, exercise physiologist, nurse and psychologist. Facilitators were evenly distributed across age decades (20–59 year olds) and were predominantly female (female n = 10, male n = 3).

In the following sections, we describe four main themes which emerged from analysis. (1) Facilitators recognised that contextual factors contributed to their programme’s existence and design. (2) Facilitators perceived the key purpose of their programmes was to provide health education and instruction to participants about the health risks of their condition, and the health benefits of behaviour change. (3) Facilitators’ views on their identities and roles illuminated tensions between ‘care provider’ and self-management ‘enabler’. (4) Facilitators placed an emphasis on participant self-responsibility for behaviour change while minimising the importance of self-management elements such as goal setting or support from the group and its members.

Discussion

This is the first study to explore the perceptions of the facilitators of group programmes for self-management support, including overall conceptualisations of the programmes as well as perceptions on programme purpose, development and delivery. We found that the facilitators in our study consistently depicted their group programmes as vehicles for providing pre-determined biomedical education and instruction to people with LTCs. There was little or no mention of training to build facilitator capacity for any complexities involved in delivering the group programme format with the result that facilitators adopted an individualised treatment approach approximating one-to-one care. Facilitators felt they were confined by the exigencies of a healthcare system determining when groups are established, high hospital admissions and waiting lists and further, the need to address the knowledge deficits they described as being a limiting factor in the self-management of people with LTCs. The prevailing notion that a group is a way of getting education ‘out of the way’ privileges the idea of individual care and misses the ethos of group-based programmes.

The facilitators, prioritising instruction and education to the participants, sidelined broader aspects of SM, such as shared learning, emotional support, problem solving and goal setting. Assuming a low level of knowledge amongst participants, thereby implicitly discounting prior knowledge, and judgements about motivation, attitudes and capabilities was a driver of this perspective, as was a focus on awareness and avoidance of future health problems, i.e. reducing risk. Reliance on the biomedical content appears to have stemmed from a dominant viewpoint that there is a pressing need to educate before further aspects of self-management could be addressed. This reliance on biomedical education aspects may diminish opportunities to address the broader range of components that may enable participants to live well with their condition and is contrary to studies showing multiple component interventions have better outcomes. ³⁸ Yet, facilitators questioned the value of goal setting, a core self-management support component, and rarely mentioned aspects such as problem solving and exploration of coping with the emotional and social impacts of living with a LTC. Limited specific training for self-management support may have contributed to facilitators’ reliance on biomedical content and avoidance of aspects perhaps peripheral to their professional training.

The group facilitators identified primarily as professional practitioners in the delivery of their group programmes, bringing their clinical background, training and knowledge to their role as well as notions of professional responsibility. The programmes were embedded within healthcare environments (e.g. hospitals, general practice) and this may be partially responsible for a biomedical focus. Facilitators perceived a responsibility to support the systems they were working within by taking the pressure off peers through responding to education needs and focusing on biomedical improvements that could be reported as evidence for programme efficacy. All these factors may have influenced the biomedical focus of the facilitators’ role. Yet, tensions were created as the necessities of their role as a group facilitator were also apparent. These tensions are additional to those already highlighted from health professionals negotiating professional responsibility with patient autonomy in one-to-one self-management support. ³⁹ It appears that in the group format, to minimise this discordance, aspects of the health professional role and facilitator role are cherry-picked, creating an environment of individual care in an educational-imperative format.

Provision of self-management that supports the needs of individuals in a way that self-management is theorised and written into policy is challenging. One such challenge seen in our study programmes was the co-opting of self-management support for the alternate agendas of the health professionals and health services within which they are employed that shaped the group programmes for the narrow purpose of biomedical instruction, education and outcomes assessment. The consequences of this appear to be that little time remained (and perhaps little incentive) to address non-biomedical aspects of self-management. Yet, this limited ambition is at odds with the principles of working with individuals, responding to their needs and supporting and empowering them to live and manage well with their conditions.

A further challenge to self-management is apparent in how the facilitators, when discussing the participants and the outcomes hoped for them, talked about encouraging ‘individual responsibility’ rather than about ‘supporting their self-management’. Holman et al. in a recent review found that focussing interventions around individual responsibility was a ‘growing trend’ in the literature. ⁴⁰ The authors argued that despite a ‘wealth of evidence’ on ‘upstream’ health inequalities due to social and economic structures, the effect on ‘downstream’ interventions has been minimal and health behaviour remains steadfastly attributed to the individual in interventions. Others have further argued that health promotion has been developing as a political tool over recent decades within which individual responsibility with a moral tone is part of the prevailing neo-liberal political discourse.^41–43 Moving against political trends is perhaps the biggest challenge (despite the obvious contradiction when healthcare support is (re)purposed in order to discourage the use of healthcare support). Specific facilitator training where these and other challenges and tensions within self-management support are discussed and reflected upon would appear vital to the development of a robust self-management support programme. In light of these findings, to achieve fidelity in self-management support where the needs of participants are fore fronted, it may be beneficial to separate organisational motivations from development and delivery of programmes.

The programmes’ apparent emphasis on biomedical instruction and education over self-management also poses questions about perceptions and ramifications of the term ‘self-management’ that further research might explore. Recent reviews of self-management interventions show this emphasis is not isolated to the programmes in our study. For example, a review of COPD programmes in its definition of self-management led with ‘to carry out disease specific medical regimens’, ²⁷ and a review of diabetes programmes talked about ‘self-management education’ which suggests disease education that had evolved rather than the emergence of a separate self-management ethos. ¹⁶ The possibility exists that healthcare environments and healthcare professional facilitators are not the most appropriate means of providing self-management support. It would also be prudent to revisit what value is associated with having condition-specific programmes such as those in our study, not least because many people with LTCs have more than one condition. It is perhaps a pragmatic necessity due to health system organisational structures, medical specialties, medical disciplines, funding streams and guidelines that condition-specific programmes exist and maintain a place in the mix of self-management programmes offered to people with LTCs and their health professionals. Condition-specific programmes have shown evidence for positive health benefits in some (but not all) indicators measured,^16,27 and participants have said they find the programmes beneficial particularly through being able to learn from similar others. ⁴⁴ However, programmes where the commonality among participants is not a single condition should also be considered as this may more closely align to the realities of living with multiple conditions and perhaps be an impetus for the provision of broader self-management. In light of ongoing poor evidence for didactic educational methods,^45,46 programme developers should also revisit contemporary adult learning methods.

The facilitators in our study downplayed participant–participant interactions in the group, and hence the support between participants that these interactions may enable, were sidelined. They appeared to devalue mechanisms of support between participants such as emotional support, shared learning and sharing of experience. This is despite the group programmes in our study being for single conditions and hence comprised of participants with similar experiences. The combination of the facilitators’ beliefs in the basic education needs of participants, and the lack of specific facilitator training for groups may have lessened the value they placed on group interactions in the programmes. In light of this, it was surprising that facilitators spoke of the value gained from participants interacting with each other despite not being prepared to further invest time into them beyond what occurred incidentally. Facilitating support between participants is inherently unstructured and this requires a relinquishing of control, ⁴⁷ absent in the facilitators responses in the current study. Promotion of shared learning and supportive relationships between group participants would seem to be integral to this format and thus an area for immediate attention. ²⁹

Strengths and limitations

A strength of our study is that diverse programmes from everyday practice were sampled. Whilst only 13 facilitators were interviewed for this study, there was diversity in health professionals and context in this sample. However, we will not have captured the full range of experiences and perceptions of facilitating group self-management support programmes. We limited our sites to those with health professional facilitators (a common format) and note that other forms of self-management support programmes exist with different formats and facilitator types such as peer facilitators and for other single and generic LTCs. Differences between facilitator profession types or length of experience were beyond the scope of this paper.

Implications for clinical practice

Our study has revealed the perspective of facilitators of group self-management programmes for people with LTCs, a previously underreported perspective. The facilitators in our study conceptualised their programmes as education and instruction vehicles, setting up their participants for post-programme behaviour change and individual responsibility. This runs contrary to LTC policy and models of self-management support that advocate for programmes that have education as only one component of broader self-management support that also promotes and applies problem-solving skills, building of self-efficacy and goal setting towards medical, social and emotional aspects of LTC management. Our sample shows an example of a disconnect at the point of implementation of LTC policy. Further, we revealed that the potential benefits of being in a group with other people who share similar experiences, such as social support and social learning may not necessarily be understood nor valued by health professional facilitators.

The limitations and contradictions of current practice presented in the views of the facilitators in our study point to, with respect to group self-management support programmes, a potential weakness in the realisation of self-management outcomes. Multiple levels of health system policy, implementation and the training of health professionals may be implicated. A greater understanding of all the components of self-management support models that are prominent in both policy and theory, may lead to a better realisation of the overall aims of supporting the self-management of those with LTCs. This paper supports the need for deep reflection on the current practice and purpose of group self-management support programmes. To be relevant, self-management support in groups must reflect objectives broader than biomedical education and instruction to support the self-management needs of participants.