“Not just a disease with a pair of legs”: Participant and Peer Leader Experiences of the Chronic Disease Self-Management Programme

Marese Heffernan, Jennifer Wilson O’Raghallaigh, Marelise Spies, Mary Forry, Ruth Buckmaster and Stephen Patchett.

 

Abstract

The Stanford developed Chronic Disease Self-Management programme (CDSMP) has been shown to improve self-efficacy, well-being and communication levels in people with chronic diseases, but little qualitative research has been conducted to better understand the unique experience of participating in the programme. The aim of this study was to explore the personal impact of the CDSMP for both participants and peer leaders.

 

Introduction

The Chronic Disease Self-Management Programme (CDSMP)1 is a six-week course for patients with chronic illnesses developed by a team at Stanford University. It is a generic programme which allows for participation from those with single and co-morbid conditions, and covers topics such as healthy eating, dealing with difficult emotions, fatigue, communicating with medical professionals, decision-making and problem-solving. A key aspect of this programme is that it is co-facilitated by at least one peer leader (a person living with chronic disease) who receives training alongside healthcare professional leaders. The CDSMP is currently delivered in various settings throughout Ireland; the present paper describes research which took place in a hospital setting that offers the CDSMP to patients as part of a joint initiative between the Departments of Psychology and Gastroenterology. We wanted to learn more about the experience of the patients who took part as both participants and leaders.

While quantitative outcomes for CDSMP participants have been widely documented, there is a relative lack of qualitative research exploring experiences of those involved and additionally, little is known about how peer leaders experience the process of training and group facilitation in terms of their own health management and psychosocial functioning. International studies have demonstrated the capacity for the CDSMP to positively impact health-related indices including self-efficacy, distress, self-reported health, patient-doctor communication, self-monitoring, and insight over time1-5. Both self-efficacy in managing disease and self-efficacy in managing emotions have been shown to improve following the programme as well as reduced perceptions of social or role limitations6. While such controlled quantitative studies speak to the efficacy of the programme, we wanted to enhance this knowledge base by exploring the individual experience from a service-user perspective, which is unlikely to be captured using standardised measures.

In one of the few studies to explore qualitatively the experience of participating in the CDSMP it was found that emotional control (that is, the ability to maintain optimism and deal with negative emotions) was increased by the experience of talking with and helping others in the group setting, and the aspect of group learning praised for the opportunity for members to improve and problem-solve together7. As well as looking at participant experiences, the current study aimed to build on previous research by addressing the experience of the peer leader. It has been emphasised that the role of the leaders in the CDSMP is to facilitate group members in reaching their goals and to act as positive role models with similar backgrounds1. All leaders, both peer and healthcare professionals, are required to attend a dedicated leader training course which is facilitated by certified CDSMP master-trainers and uses a specific leaders’ manual8. Leader training involves trainees experiencing each aspect of the course, including creating and implementing their own action plans for sessions9.

It was also anticipated that insights could be gleaned from participants’ experience of undergoing training alongside healthcare professionals, particularly as Catalano, Kendall, Vandenberg, and Hunter10 found that peer leaders were likely to feel inferior to healthcare professionals, leading to feelings of decreased self-confidence and rejection. We hoped to gain a better understanding of these dynamics so that we could better supports our peer leader volunteers.

The Current Study

The current study was carried out at a large Irish teaching hospital where the CDSMP has been delivered since 2012. Previous research undertaken here has shown the programme to be effective in enhancing the mood and emotional well-being of such patients11. By conducting this qualitative research at the levels of participant, peer leader post-training, and peer leader post-facilitation, we aimed to garner a broad-range perspective of the various aspects of this programme which are most likely to have consequences for the day-to-day lives of people with chronic diseases.

Design

Participants

Participants were 12 people with chronic diseases who were involved at one of three levels (i.e. programme participants vs. recently trained leaders vs. leaders who have facilitated one group) with a CDSMP delivered by a large Irish teaching hospital. Information about the research was provided verbally and in writing during ongoing CDSMP and leader training courses; participants of recent programmes were also invited to participate during routine follow-up conversations with coordinators. Interested participants were invited to make contact with the interviewer for further information; written informed consent was obtained from all participants.  Descriptions of levels and gender proportions are shown schematically in Figure 1. All participants were Caucasian and living in Ireland; ages ranged between 23 and 72 years. Participants have been provided with pseudonyms in the following analysis.

 

CDSMP figure1

Figure 1. Participation level descriptions and gender distributions.

Design and Procedure

This study employed a qualitative based research design using individual semi-structured interviews. Interview schedules explored participants’ experiences of the programme content, group processes, and the potential behavioural impact. Interviews and analysis were conducted by a researcher from a local university who at the time of data collection had no involvement with the CDSMP beyond this study. The study was approved by the relevant university ethics committee; the affiliated hospital noted it as a service evaluation as per local procedures.

Analysis

Interviews were transcribed verbatim by the interviewer and analysed using descriptive-interpretive thematic analysis guided by Elliott and Timulak12, with procedures for enhancing trustworthiness directed by Williams and Morrow13 (e.g. use of direct quotes to demonstrate links between data and interpretations; checking interpretations with members of the research team). Interview data were first coded and meaning units extracted; these were then sorted and re-sorted until all units could be optimally grouped into overarching categories with associated themes. Interview data was initially coded within its particular strand i.e. individual coding for programme participants, trained peer leaders and post-facilitation peer leaders respectively. However, after exhaustive analysis of meaning unit sets it became clear that despite the different experiences of interviewees, similar units emerged across all levels of the data-set and these could be optimally sorted into overarching categories with corresponding sub-categories.

Findings

Three major categories were identified during analysis; these are depicted with corresponding themes in Figure 2 and will be interpreted with specific reference to the data.

CDSMP figure2

Figure 2. Categories and themes identified during analysis

Experience of the Group

The data indicated that the group component of the CDSMP formed a primary element of the experiential process at both programme and leader training levels. Two themes were identified.

Making comparisons: Across all three levels of participation, there was an expression of the comparative nature of the groups; in hearing the stories of other people in the group, participants made conscious references to their own experiences with illness. Several participants emphasised the feelings of relatedness and empathy that came from listening to fellow group members discussing health issues.

“Every one of us sort of felt the same on the way around so I knew I wasn’t alone in other words, I didn’t feel that I was different to anyone else.” – Myles, Programme Participant

That people with different chronic conditions were present in the groups also offered participants new perspectives with which to view their own situation. In this sense, they compared their illness with the illnesses of others, using the ‘other illness’ as a framework for comparison.

“Sometimes you look at your own ailment as you know woe-be-tide you know things are terrible for me and then you listen to what other people have, their problems and you know it just puts things into different perspective.” – Malachy, Programme Participant

Forming an in-group: A second thread that emerged was participants’ view of the group members including themselves as a specific social group with which they strongly identified. The formation of such in-groups can be attributed to two central factors, the first being the common illness-related features shared by members as described above, and the second being the common goal of people within the groups at both participant and peer leader trainee level.

“I didn’t feel alone, I felt I was part of something.” – Myles, Programme Participant

In the context of leader training, the very clear existence of a common goal– i.e. to successfully complete the course – allowed for the breakdown of an identified barrier between ‘patient’ and ‘healthcare professional’. The in-group formation allowed for peer leader trainees to see from a different perspective the role of different healthcare professionals and provided a sense of being ‘heard’.

“If you go into a clinic or even on a one-to-one session with a counsellor or psychologist … there’s kind of a wall or a barrier whereas in this case there are no barriers everyone’s there just to share knowledge.” – Dominic, Trained Peer Leader

Experience of the Programme

The category Experience of the Programme relates to the ways in which participants experienced the specific elements of the CDSMP, and both the positive and negative aspects that informed their level of trust in and acceptance of the course. The three themes identified were: Adopting specific tools; Inspiration role of the peer leader; and Programme structure.

Adopting Specific Tools. Several components of the CDSMP structure emerged as having particular resonance for both programme participants and trained peer leaders, who as part of training are asked to complete the various elements of the programme. The most salient element was the weekly action plan. Participants associated this element with feelings of motivation and drive, while other elements were also noted as effective self-management tools which helped participants to cope with their illness in everyday life, such as practiced breathing exercises, problem-solving and communication strategies.

“I’ll do the breathing exercises or I’ll listen to the tape doing me breathing and it does, it does help and it relaxes you that much, the pain is still there, but … it’s dealing with it.” – Myles, Programme Participant

Additionally, post-facilitation peer leaders identified the experience of witnessing their programme participants successfully adopting the same tools, and the effect that it had on them over the course of the programme.

“I think it’s very motivating … to see the action plans as well like growing every week … the first week they tend to be quite small … but as the leaders’ actions plans expand the group tends to keep up as well and they’re kinda they’re branching out, they’re getting a lot braver.” – Leah, Post-Facilitation Peer Leader

Inspiration role of the peer leader: The purpose of the peer leader role in providing inspiration for programme participants in attaining goals emerged in the analysis of responses as as a facet of broader belief in the CDSMP. In the first instance, programme participants recognised the ‘role model’ status of the peer leader, as someone who experienced the same disease-related challenges as them but who represented the possibility of overcoming said challenges to achieve goals within everyday life.

“I think she was fantastic, first of all to do it and then to go every week when she felt really rotten you know and she really never said anything about feeling rotten, she just kept going.” – Leanne, Programme Participant

Trained peer leaders experienced leader inspiration in two senses: firstly in their aim to learn how to successfully fulfil the function utilising effective modelling, and the second in their response to their master-trainers, at least one of whom was also a peer. The responses suggests that peer leader trainees were initially inspired by their own master-trainers, and in turn developed the hope of imparting such inspiration to their future programme participants.

“One trainer who has a chronic illness himself just you could see that he really believed in the content and how much it had helped him, and that inspired me to go away from the training then and put some of these things into practice myself.” – Zara, Trained Peer Leader

Similarly post-facilitation peer leaders identified a desire to inspire participants through their own experiences.

“We can show ourselves being ill like we can show that we’re in pain and stuff but the point is to show that that doesn’t stop us.” – Leah, Post-Facilitation Peer Leader

The peer leader role appears from the data to play a subtle but clear role in incorporating into the CDSMP an implication around learning through modelling.

Programme Structure: The level of structure contained within the CDSMP was identified as a potential challenge. While the reasons for the highly structured approach were generally understood, there was a common thread of struggle for both participants and peer leaders in the desire to ‘go beyond’ the programme structure to further help people.

“There’s so much packed in to those two and a half hours … I found that there was little time to talk to people little time to get to know people and I found that a little bit frustrating.” – Marian, Post-Facilitation Peer Leader

The structure of peer leader training is different from the CDSMP itself, made up of four full-day sessions. This intensive approach posed a challenge for interviewees, in the practical management of their symptoms for protracted periods; however the level of accomplishment in being able to successfully adhere to this concentrated structure was also evident.

“When I came out the other end of it I was physically exhausted but that’s ok because I was tired from actually doing something constructive with my day you know which was great and it really did give me a sense of achievement.” – Zara, Trained Peer Leader

Expressions of Self-Worth

The final category relates to participants’ expressions of self-worth upon completion of their particular role in the CDSMP. It is likely that the previously described categories largely contributed to the development of this category, in the enhancement of feelings of self-worth across the three groups. Positive expressions of self-worth emerged from the data as being directly attributable to the successful completion of the CDSMP, and were expressed primarily in terms of purpose and accomplishment.

Purpose: A sense of purpose was expressed in the feeling of contributing to the world, largely associated with data from trained peer leaders and post-facilitation peer leaders. These participants derived purpose from being able to help other people, using their experiences to bring positivity to themselves and others.

“A sense of purpose … I was just doing stuff for myself at home or trying to get through the day or whatever so now that I can look back and know that I’ve helped those people.” – Leah, Post-Facilitation Peer Leader

Accomplishment: There was a particular sense of accomplishment among peer leaders at both levels, both for the role they played in helping others but also in being able to successfully complete the programme despite their illness. The identity of peer leader was associated specifically with feelings of self-worth, in providing participants with a defined role that went past their illness status.

“It just gives you a sense of self-worth, you know it … makes you realise you’re human you know, you’re not just a disease with a pair of legs.” – Dominic, Trained Peer Leader

Discussion

The aim of this research was to gain a better understanding of the personal experience of taking part in the CDSMP, through descriptive-interpretive analysis of data from semi-structured interviews with programme participants, trained peer leaders and post-facilitation peer leaders. The primary categories which emerged during analysis were experiences of the group, experiences of the programme, and expressions of self-worth. Overall these categories indicate that the CDSMP, through facilitating positive social interactions as well as effective self-management tools, has the capacity to enhance levels of self-worth as reflected in feelings of purpose and accomplishment. These results add further weight to positive findings from quantitative studies which have shown its propensity to enhance emotional well-being and self-efficacy and reduce distress among other gains over long-term periods1,2,11, and they also echo the emphasis placed by writers such as Yalom and Leszcz14 on supportive group dynamics in therapeutic groups.

Heightened self-efficacy has been recognised by CDSMP developers as being an important mechanism through which the programme impacts disease self-management15. Lorig and Holman in turn demonstrated how each of the four self-efficacy sources identified by Bandura16 could be applied to the CDSMP: performance accomplishments as the skills mastery of successfully completing weekly action plans; vicarious experience as reflective of the modelling that occurs through peer leader teaching; verbal persuasion in terms of the group element of learning and implementing new behaviours in a social setting; and physiological states regarding the reinterpretation of symptoms that occurs through attributing alternative causes to negative symptomology.

Based on the categories and themes identified during the current analysis, it appears that performance accomplishments (mastery), vicarious experience (modelling), and verbal persuasion were the most salient programme elements that contributed to heightened self-efficacy. The role of social persuasion was arguably the most significant source of efficacy that emerged from the data, as both programme participants and trained peer leaders developed their confidence through engaging with the stories of people in their respective groups, experiencing relatedness and gaining new perspectives on their disease.

The development of a shared social identity was apparent in participants’ categorisation of themselves and other group members as one in-group with collective identification as well as strong concern for fellow group members’ welfare – processes which have been widely established previously in social identity research17,18,19. The significance of this shared social identity was particularly apparent in the case of trained peer leaders who described the shedding of barriers between patients and healthcare professionals in the face of the common goal of completing training. This is in contrast to previous research which found there to be feelings of tension between peer and professional leaders, with peer leaders feeling excluded from the process10. We found no evidence of such feelings, instead finding strong in-group formations at the leader training level. It is unclear whether the participants in Catalano et al.’s10 study undertook leader training as a mixed peer/professional group, however the current findings indicate this to be the optimal format for leader training as it allows for the development of shared understandings between peers and healthcare professionals, reducing social barriers and fostering bonds.

The present study has several potential limitations. The self-select method of sampling could be viewed as likely to appeal more so to those participants who thought positively of their experience. In anticipating this concern researchers at recruitment and interview stage emphasised openness to positive and negative feedback as well as the interviewing researcher’s external affiliation with a local university rather than with the hosting organisation. However these measures are unlikely to have entirely counteracted the impact of this limitation. Additionally, with a substantial rate of attrition previously measured for the CDSMP20, it may have been beneficial to use this qualitative platform to explore experiences among those participants/peer leaders who did not complete the full programme or training course, to better understand the reasons for drop-out. This may be a direction for future qualitative explorations of the CDSMP.

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Authors:

Ms. Marese Heffernan, Trinity College Dublin and Beaumont Hospital mheffer@tcd.ie

Dr. Jennifer Wilson O’Raghallaigh, Beaumont Hospital

Dr. Marelise Spies, Trinity College Dublin

Ms. Mary Forry, Beaumont Hospital

Ms. Ruth Buckmaster, Beaumont Hospital

Prof. Stephen Patchett, Beaumont Hospital