“So, you must understand that that group changed everything”: perspectives on a telehealth group intervention for individuals with chronic pain

Abstract

Background

The Patient Education Empowerment Programme (PEEP) is an interdisciplinary group intervention for people living with chronic pain. As a result of the COVID-19 pandemic, lockdown and restrictions on in-person group-based health care delivery in South Africa, PEEP was modified to a telehealth electronic format (ePEEP) and offered to patients on a waiting list at two interdisciplinary chronic pain clinics in Cape Town, South Africa. The purpose of this study was to explore the feasibility and acceptability of ePEEP through the perspectives of individuals with chronic pain who participated in ePEEP. 

Methods

A qualitative, exploratory descriptive study was conducted. One month after completion of the 6-week ePEEP programme, individuals who participated, were recruited for the study. Data were collected through semi-structured interviews. Data analysis followed an iterative process of inductive content analysis. 

Results

Six individuals, all women, consented and participated in the study. Three main themes emerged from the data. Theme one focussed on how ePEEP initiated a journey of personal development and discovery within the participants. In theme two, participants reflected on the importance and value of building peer and therapeutic relationships as part of ePEEP. In theme 3, participants shared that the online learning environment had features which influenced learning about pain in different ways.

Conclusion

ePEEP was found to be acceptable, feasible and valuable for the participants. ePEEP facilitated self-discovery, empowerment, relationship building and transformation in the participants, through experiential learning. Although barriers and facilitators to learning were present, both enhanced the learning experience. The positive reception of this telehealth initiative indicates potential for enhanced access to chronic pain management services in the South African setting.

Introduction

The COVID-19 pandemic, and subsequent lockdown, changed many aspects of healthcare delivery [1]. In South Africa, some healthcare services were temporarily suspended during lockdown and services for people with chronic pain were interrupted. The impact of COVID-19 on South Africans with chronic pain remains to be seen but based on other countries’ experiences, it is likely to impact access to care, effective pain management, support and may intensify health care disparities [2,3,4]. People with chronic pain often experience increased levels of disability over time, with a concomitant reduced potential for recovery. Therefore, it is critical to provide appropriate treatment and rehabilitation early in their health care journey. There is thus a dire need to support people with chronic pain in new and innovative ways while adhering to lockdown regulations. Telehealth innovations are one way to offer such care.

Chronic pain is a complex, multi-dimensional experience, which impacts wellbeing, leading to decreased functioning and quality of life [5, 6]. In South Africa, one in five people suffer from chronic pain [7]. To address this concern, the Groote Schuur and Tygerberg Hospitals in Cape Town, South Africa, offer interdisciplinary chronic pain management clinics. Both these clinics provide a group based chronic pain management program (CPMP), which is branded PEEP (Pain Education Empowerment Program) [8]. PEEP is six-week group program patients attend for two hours per week. PEEP integrates treatment strategies for chronic pain using principles of cognitive behavioural therapy (CBT), education, pain neuroscience education, mental wellbeing and physical activity. PEEP focusses on addressing patients’ understanding and beliefs about their pain, facilitating skill acquisition and behaviour change to increase self-efficacy and thus their capacity to live and cope with pain [9, 10]. During the pandemic in-person PEEP sessions were suspended due to the high risk of COVID-19 infection when patients travel and attend hospital-based group sessions. However, given the risk of worsening disability for patients due to limitations in access to health care, it was imperative to provide alternative access to pain management. We therefore modified PEEP to be delivered via telehealth as an electronic version (ePEEP) via a smart mobile device on which WhatsApp could be used, to address this need.

Telehealth interventions for chronic pain can be as effective and acceptable as in-person therapy to improve pain, physical activity, function, and psychological variables [11, 12]. Additionally, a telehealth group intervention offers the benefit of increasing social participation using a virtual connection platform [13]. However, there is a knowledge gap regarding the efficacy of telehealth group interventions [13, 14], interdisciplinary telehealth [15] and the processes through which change occurs. There is thus a need to explore the acceptability and feasibility of a telehealth group intervention in the South African context. In this paper we report on patients’ perspectives regarding participation in a telehealth intervention (ePEEP), and their perspectives on the acceptability and feasibility of ePEEP in the SA context. In a separate paper we will report on the perspectives of the clinician providers who facilitated ePEEP.

Methods

Study design

A qualitative, exploratory descriptive study design with a phenomenological approach [16] was used. The phenomenological approach was chosen to gain insight into the participants’ lived experience of, and their perspectives regarding participating in a telehealth group program for chronic pain. The study received approval from the University of Cape Town and Stellenbosch University Health Research Ethics Committees and the Groote Schuur and Tygerberg Hospital Facility Management and Ethics committees.

Population and sample

Patients with chronic pain on the waiting list for PEEP were eligible to participate and were invited to take part in ePEEP. Purposive sampling was used [17], using the criteria as outlined in Table 1. All patients who had completed the first week of the program were eligible since week 1 of ePEEP is foundational. ePEEP utilises synchronous and asynchronous learning in the flexible program, and thus attendance at scheduled activities was not compulsory for inclusion in the study.

Table 1 Inclusion and exclusion criteria for participation

Instrumentation

An interview guide was developed based on similar research [13, 18, 19]. The interview schedule comprised questions about expectations and experiences regarding participation in ePEEP, challenges experiences as well as potential solutions, participant roles and suggestions for optimising ePEEP. The interview schedule is available as additional file 1. DE, who was not involved in the practical delivery of ePEEP, conducted the interviews in Afrikaans or English, according to the preference of the participant.

Procedure

Two rounds of ePEEP were conducted with three groups of participants. In the first two groups, patients were allocated into ePEEP groups according to language preference; and the third group was a mixed language group (Afrikaans and/or English). Each ePEEP group had a dedicated facilitator who co-developed e-PEEP. One team member contacted eligible patients to offer them participation in ePEEP (MZ). After completion of the ePEEP intervention, MZ contacted the participant to ask permission to provide their contact details to another team member (DE), for the purpose of being invited to participate in the research study. DE invited those who agreed by sending a text message, complemented by a voice note. Information on the study, its purpose, and an invitation to participate was sent. The participant could provide written informed consent via text message or email. On agreement to participate, an appointment was scheduled for a telephonic interview. Individual semi-structured telephonic interviews were conducted to assure privacy and encourage in-depth discussion. Study participants’ socio-demographic data were obtained after the interview using a short telephonic survey, to enable a description of context. Interviews lasted 30 – 60 min and were audio recorded.

The intervention (ePEEP)

The telehealth intervention was 6-weeks in duration. The therapeutic components of ePEEP were derived from PEEP and adapted for delivery using smart mobile devices. The research team identified the key educational and skill activities for inclusion through a collaborative process. Thereafter, these were packaged into discrete learning tasks using various forms of multimedia. Table 2 provides a summary of the ePEEP content and delivery. Educational material in the form of an existing workbook in English or Afrikaans were couriered to participants. Educational content such as short videos, podcasts, voice notes, pictures (infographics) and text messages were delivered via WhatsApp at the beginning of each week for asynchronous learning. An online WhatsApp video call session was held weekly via a group call, to facilitate collaborative (synchronous) discussions. At the end of each week, further educational content was shared to expand on the synchronous discussions. ePEEP was delivered using low data methods focussing on mobile messages, via WhatsApp. This was necessary since 60.1% of South Africans access the internet via their mobile devices. However, only 10.4% of South Africans have access to internet connection at home [20]. Participants in ePEEP received a weekly data allowance for 6-weeks, to allow them to access the material sent to them and to allow participation in online facilitated discussions.

Table 2 Overview of ePEEP content and delivery

With their permission, participants and facilitators were added to a group on the mobile messaging platform on which the intervention was delivered. WhatsApp was chosen as a low data method of delivering a range of content. At the time of conducting the study, this platform was ethically and legally allowed without impacting on patient rights. In the first introductory contact of ePEEP participants completed a statement that they would maintain the confidentiality of the group. In this statement participants specified that they would show mutual respect, and that confidentiality regarding personal information shared in the group would be maintained. Participants could add any additional points regarding conduct in the groups. ePEEP is a group-based program, therefore the information shared in the group cannot be anonymised.

Data management and analysis

Interview recordings were downloaded to a computer, a unique serial number allocated, and de-identified by DE. Thereafter, the recordings were transcribed by a professional transcription company. Survey data were extracted from the transcriptions and entered into MS Word for descriptive analysis. Inductive, thematic content analysis of the interview transcripts were done [21]. This method involved an iterative process of immersion in data, identification of initial codes, clustering codes into categories and categories into themes [21]. Data were analysed in the language of the interview and translated to English where required for the purpose of this manuscript. The six transcripts were equally divided between DE, RP and KL, who each independently coded two transcripts. The three researchers developed an initial list of codes from the two transcripts allocated to them, then compared and discussed their initial list of codes and emerging themes. Consensus was reached regarding the codes to formulate an initial codebook and preliminary themes. DE applied the amalgamated codebook to the dataset using ATLAS.ti (version 9, Scientific Software Development, GmbH, Berlin, Germany) and added codes where indicated. The latter step was done to be consistent in the application of the codebook to the transcripts. The research team audited the interview analysis, categories and themes and collaboratively identified associations and relationships between themes. Member checking was done by providing the themes and categories to study participants to verify via text message [22].

Results

Study participants

A total of 51 patients were on the waiting lists for PEEP at GSH and TBH and were therefore eligible to be invited to participate in ePEEP. We could only reach 27 out of the 51 via the provided contact details to invite them to take part in ePEEP. Nineteen (18 women, 1 man) indicated that they were interested in participating in ePEEP and had smartphones. Three groups were run with 11 patients (all women) completing the full program to graduation and six agreeing to participate in this study (Fig. 1). One eligible person declined due to her personal circumstances, and four could not be reached telephonically by the facilitators. Table 3 summarizes study participant ages and health conditions. The mean age was 43 years (range: 28 – 52).

Fig. 1

Recruitment and participation in ePEEP

Table 3 Study participant information

Themes

Three main themes emerged from the data. In theme one, participants shared their personal journey of discovery and development. Theme two focussed on the affordances of the online learning environment and in theme three, participants reflected on how ePEEP may be optimised. Figure 2 provides a summary of the main themes as well as the associated categories and codes.

Fig. 2

Participants perspectives on ePEEP 

Theme 1: The journey of discovery

Participants described embarking on a journey of discovery through ePEEP. This journey included elements of self-discovery, empowerment, and transformation via engagement with various role-players on the journey. Participants identified their pre-ePEEP selves, which, through engaging in meaningful learning activities during the journey, shaped their new identity as empowered individuals. Table 4 provides an overview of Theme 1, with substantiating verbatim quotes.

Table 4 Theme 1: Journey of discovery during ePEEP

Three categories of people played a role in participants’ pre-ePEEP identities, namely themselves, their families, and health care providers. Participants attributed their pain to their past activities, leading to self-blame or they attributed their persistent pain to previous traumatic experiences. They reported feeling lost in the healthcare seeking process of enquiry about pain and longed to play a more active role in their family life. Healthcare providers played an important role in validating or non-validating pain and participants’ resultant feelings.

The participants’ journey of discovery was facilitated by the learning activities and the learning environment created during ePEEP sessions. Being part of a group significantly enriched learning. Participants experienced the learning environment as open, relaxed and non-judgmental. The journey of discovery was an active journey with participants valuing learning new skills to enable them to live their lives with pain as a companion. The valued skills acquired on the journey of discovery included exercise, mindfulness, relaxation, and healthy eating.

New knowledge gains and the acquisition of skills enabled a change in participants’ mindset and a sense of empowerment. The participants realized that they were in the driver’s seat to their life’s destination; this required them to shift their locus of control with a newfound determination and self-motivation to set goals and to make decisions. The change in their own perspectives resulted in a change in their family dynamics and the way they approached healthcare providers. Family engagement with the ePEEP learning materials improved the family’s understanding of the person living with pain. Additionally, participants had improved communication with family members which enhanced relationships and redefined roles. On reaching their destination in this journey, the participants were looking forward to a fuller life beyond mere existence.

Theme 2: Building peer and therapeutic relationships

The findings strongly indicate the value of building peer and therapeutic relationships as part of the ePEEP journey (Table 5). The fellow travellers (peers and facilitator) on the journey enhanced learning and enabled change through shared experiences and validation. Participants valued that there was close personal virtual contact with the peers and the group facilitator, even though the program was offered remotely and online. The shared experience of pain contributed to the group cohesion. The participants valued that they could learn from each other; they felt supported and understood by each other and by the facilitators. There was a sense of belonging and accountability regarding goals on the journey of discovery. The peer-learning environment appears to have been successfully created in the virtual space with participants reporting that they felt safe engaging and communicating with the facilitator and with their peers. Moreover, the facilitators were successful in creating online therapeutic alliances.

Table 5 Theme 2: Building peer and therapeutic relationships 

One of the main recommendations from the participants was that they would like some in-person time with their fellow travellers. Suggestions included an initial in-person meeting to facilitate forming the group, or a final meeting to reflect on the journey and successes. The value of such a meeting was proposed to strengthen relationships, learning and behaviour change. There were some participants (Fig. 1) who did not complete their ePEEP journey. The remaining participants noted that group cohesiveness was disturbed when a fellow traveller, with whom they started their journey, left the group prematurely. The latter indicates a disruption in group dynamics and relationship.

Theme 3: The online learning environment

Learning in the online environment was a novel experience for the participants. Learning in this way meant that travel on the journey of discovery was not straightforward, with some barriers forming bumps in the road, while numerous facilitators made the path easier and more enjoyable. Facilitators to learning comprised accessibility and convenience, safety, fun, provision of access, and the unique features of the online environment. The barriers to learning involved issues with internet connectivity, disturbances in the environment, user competence and that some who initially participated in the program, discontinued. Table 6 provides an overview of the factors that influenced learning in the online environment.

Table 6 Theme 3: Learning in the online environment

Providing ePEEP facilitated greater access to care. Participants who were working, or who were responsible for childcare at home during lockdown, found the online environment more convenient compared to in-person sessions. The provision of data packages was a major facilitator to participation since it allowed participants to engage in the learning activities despite financial challenges and it eliminated travel costs. The provision of data packages contributed to adherence and allowed participants to continue travelling on their journey with consistency. Additionally, participating in ePEEP was perceived as safe, both from an emotional aspect and in terms of risk of exposure to COVID-19. The learning activities were experienced as fun and enjoyable, and participants particularly highlighted the fun of the exercise sessions. Participants further valued the online environment due to its flexible structure, the synchronous and asynchronous activities such as the front- and back-loading of podcasts and videos, and the ongoing input from the facilitator between live sessions.

Participants reported some challenges and distractions along the journey of discovery ranging from the challenge of learning online, family responsibilities, and the home environment. Distractions included background noise from their own and other participants’ home environments. The most frequently experienced challenge to participation in ePEEP was poor internet connectivity interfering with real-time interaction. While providing participants with data was helpful, poor cell phone coverage and signal quality was experienced by all. This meant that the facilitator and participants had to make alternative arrangements when video calls were not possible. Similarly, user competence, while a potential roadblock on the journey of discovery, was addressed with some assistance. Participants acknowledged that they or other participants might need more support to be able to optimise technology use and engage in the online learning environment. Congruently, study participants acknowledged that prior to starting, some participants may have benefited from better technology preparation and training to enable them to get the most out of the journey of discovery. Furthermore, the participants consistently recommended more course time to develop relationships, embed learning, and benefit from the relationships formed through their journey.

Discussion

This study, to the knowledge of the authors, is the first reporting on the development, implementation, and evaluation of a group-based telehealth intervention for patients with chronic pain in the (South) African context. This group intervention was found to be feasible, acceptable, accessible, safe, and valuable for study participants. ePEEP facilitated a journey of self-discovery, empowerment, relationship building and transformation in the participants. The key strengths of ePEEP were the group cohesion, experiential and non-judgmental learning environment, and the accessibility of the online initiative. The findings of this study are important, since they address the knowledge gap in the user (participant) experience regarding group telehealth for chronic pain [13, 14].

The research allowed an in-depth understanding of patients' experience and perspectives regarding ePEEP, which could be instrumental for the design, implementation and decision- making regarding future telehealth interventions. A significant finding of this study is the participants’ journey of personal discovery and transformation. The journey of discovery was facilitated by their engagement not only with the ePEEP learning material, but through engagement in relationship with fellow participants and facilitators in an online platform. ePEEP provided the participants the opportunity to engage within a community of practice and to participate in active and patient-centred learning activities leading to them feeling empowered with new skills and knowledge. These findings concur with those of a group telehealth CPMP that was beneficial regarding pain-related outcomes and group cohesion in a rural Australian population [13]. Group interventions can be successfully delivered via telehealth with participants feeling actively engaged and supported [23]. Playing an active role in health care was found to be influential in reducing help seeking behaviour, the usage of healthcare services, and in improving quality of life. Additionally, Smith et al., (2019) [24] found telehealth interventions for chronic pain superior to usual care for increasing pain self-efficacy. However, our study participants consisted only of women, and while pain rehabilitation programs have rendered positive outcomes for both men and women, gender differences should be acknowledged and further investigated [25]. Nonetheless, our study adds to the body of knowledge that confirms the efficacy of telehealth interventions, providing evidence for group based and interdisciplinary telehealth for chronic pain. The study findings contribute to the understanding of patients’ perspectives on how this change in outcomes occurs.

The valued features of ePEEP that facilitated change were the creation of therapeutic relationships, peer and facilitator support, and the learning environment. These relationships enhanced the journey of discovery. Correspondingly, most of the participants longed to have some in-person contact with group members and the facilitator. The importance of in-person contact to the participants indicates that a hybrid model of care may be preferable, and that not all chronic pain care can/should be delivered remotely [1, 13]. The group processes and real-time video interaction mitigated the effects of social isolation [13]. It is notable that the facilitators were able to create therapeutic alliances, trusting relationships, and a supportive learning environment, despite never having met the participants in person. The above finding contrasts with other studies that report patients struggling to connect with health care professionals in a telehealth environment when there wasn’t a pre-existing relationship [1, 2]. Congruently, it is recommended that group facilitators for telehealth initiatives be equipped with a core set of competencies which could include acquaintance with the technology, explaining chronic pain and teaching activity pacing [15], to optimize the learning environment and formation of the therapeutic relationship.

The intervention was patient-centred and considered participants' unique needs, preferences, and circumstances. The above was facilitated by the provision of individual and personal contact, via the asynchronous learning activities which could be completed at the participants preferred time and combined with synchronous real-time video interaction sessions. ePEEP enabled experiential learning through an information booklet with worksheets, goal setting exercises, and participation in relaxation and physical activity sessions. Although there was initial concern with initiating physical activity in the online setting, safe implementation was possible since a thorough evaluation of physical ability was done prior to referral. Congruently, exercise via telehealth has been implemented safely before for patients with chronic pain conditions [11, 13] and physical disabilities [26]. The guided problem-solving, patient-centredness and collaborative decision-making indicate key features for successful implementation of telehealth initiatives for chronic pain [1, 26].

Barriers to implementation were similar to those reported elsewhere on telehealth implementation [13, 15, 27], namely technology, internet access, and digital literacy; however, these barriers could be overcome. The collaborative problem-solving to address barriers in the group by adaptation of what was planned, formed a core part of the learning experience to guide problem-solving. This learning experience on adaptation and being flexible became part of the participants’ goal setting and narrative. The provision of data packages was a major facilitator to participation addressing financial inequities. It is therefore recommended this be a key consideration for future implementation of similar interventions in South Africa and other resource poor settings. The need for educational initiatives to optimise participants’ digital technology usage was also highlighted in the current study. Due to the nature of the study being exploratory, we excluded the three potential participants who did not have smartphones. To broaden access, and provide equitable opportunity to participate in telerehabilitation interventions, solutions should be sought for those who do not own smart phones, to bridge the digital divide. Congruently, Tauben et al., (2020) [15] advises that subsidizing broadband and electronic equipment for telehealth initiatives may be required for success.

Strengths and limitations

ePEEP allowed a group of strangers to collectively embark on a journey of discovery at a time when isolation and inertia were prominent features of daily life. They travelled on this journey with support and fun, challenging themselves along the way and successfully overcoming barriers to reach the destination of a transformed self. The telehealth initiative overcame barriers to care such as economic and transport concerns, geographic barriers, COVID-19 safety concerns, as well as access to care during the COVID-19 lockdown. ePEEP was therefore an effective mechanism to provide support to patients and to mitigate consequences of limited access for chronic pain [1]. There are indications that ePEEP offered unique and broadened learning opportunities when compared with in-person sessions, namely the opportunity for family involvement, access and use of resources that were distributed, peer led online support, and preparation for access to community-based groups.

Although ePEEP was initiated as part of adjusted measures to continue care for patients with chronic pain during the COVID-19 lockdown period, it has important implications for delivering rural and remote pain services. Those who are responsible for childcare or the care of relatives, may particularly benefit from the intervention due to its accessibility. In South Africa, people often travel long distances and/or over rough terrain to access pain care services which are largely only available in some tertiary metropolitan centres for a limited number of patients. Telehealth has the potential to increase quality and accessibility of health care, thereby contributing to equity in health care delivery in the African context [2, 28]. The study has provided several indications about the value of telehealth for chronic pain rehabilitation programs and indicates that telehealth has cemented itself as a viable option in the South African context. Telehealth should therefore be considered for inclusion in under- and postgraduate curricula. Additionally, health policies, clinical guidelines and care pathways should consider and include telehealth to enhance its uptake into practice [27].

More research is required regarding clinical outcomes of this telehealth initiative, since we only investigated fidelity, participant engagement, and user experience. Our research was a case study to investigate the feasibility of ePEEP, therefore, the results can only be generalised to similar contexts. The study sample size was small, and based on self-selection, which further impacts generalisability; however, data saturation was achieved. One of the major considerations is the gender bias in our study. The study focusses on the perspectives of women who participated in the group initiative. Based on the information that only one male, out of the total population eligible to participate were interested in participating, more research exploring the role of gender on participation in group interventions would be valuable [25]. We highlighted several lessons to be learnt from our implementation and investigation. It is suggested that more information be gained from patients who did not start or did not complete the program to ascertain reasons for non-participation. Such information would assist to optimize the ePEEP initiative. Although we attempted to contact these individuals, they could not be reached telephonically or declined to participate. ePEEP requires access to a mobile smart device with a camera, microphone and speaker technology and mobile data. These may not be accessible to all patients and may have to be provided or subsidized. The main suggestions to optimize the ePEEP of the future was to consider the duration of the interventions, to include at least one in-person session, and to address digital literacy prior the start of ePEEP.

Conclusion

The telehealth group intervention that was developed and implemented, was found to be acceptable, accessible, safe, and valuable for the participants. ePEEP facilitated self-discovery, empowerment, and transformation in the participants, through experiential learning, therapeutic relationships, social and facilitator support, and peer-assisted learning. The subsidized mobile data allowance was a major facilitator to participation. Future telehealth innovations in this context should include the monitoring of clinical outcomes and an in-person group session, when feasible.