This study employed a qualitative exploratory design using in-depth interviews amongst CHWs prior to enrolment in a self-management programme. The interviews were conducted with two primary purposes, namely to describe the CHWs’ personal and professional challenges in performing their duties and to examine motivations for wanting to join a self-management programme. This study design allows for the in-depth, rich and holistic understanding of the phenomena under investigation.²⁵

The study was conducted in an urban setting in the Western Cape, South Africa. According to the 2011 Census of Cape Town, the high rates of poverty (47%) within the community tend to compromise the mental health and well-being of the residents.²⁶ The CHWs in this area work in environments, which are both socio-economically poor and have high rates of violence. Approximately, 84% of attempted murders in this area are attributed to gang activity and this region is in the top 10 for illegally possessing firearms and ammunition.²⁷

With the re-engineering of primary healthcare in South Africa, the support for the CHW workforce has expanded, consequently they are being employed by non-governmental organisations (NGOs) sanctioned by the provincial health departments.²⁸ Those lay healthcare workers who did not have formal training, worked in nurse-led teams¹³ and their focus was directed towards health prevention and promotion.

Participants formed part of a bigger study where they completed a survey related to determining their risk factors for non-communicable diseases.²⁹ Based on the survey, participants were purposively selected to be interviewed. Purposive sampling is a technique used in qualitative research to obtain rich information from key participants³⁰, thus allowing for recruitment of participants who met the predetermined criteria aligned with study objectives.³⁰ Stratified purposive sampling allows the researcher to capture variations in thoughts rather than identify a common core although the latter may emerge during analysis.³⁰ Thus, the number of participants is not important, but rather the information obtained from participants. The two inclusion criteria for participation in the study were that CHWs had to be employed as CHWs at the time of the study, and they had to indicate that they were willing to participate in a self-management programme. Participants were excluded if they were not willing to participate in the self-management programme. Fifteen participants were recruited from two NGOs that employ CHWs in the Western Cape.

Data were collected by means of in-depth interviews. In-depth interviews are relevant when comprehensive insight about participants’ concepts, perspectives, behaviours and experiences regarding a specific intervention, idea or situation is sought.³¹ Interviews allow the researcher to understand how participants view the phenomena under investigation.^31,32 This interview strategy provides a comfortable and natural atmosphere, which facilitates conversation,³² as meeting one on one with the interviewer enables those who would normally shy away from contributing opinions in a group setting to voice their perspectives and provides more explicit information than surveys.³¹ In this study interviews were conducted by a trained researcher at a mutually suitable date and venue.²⁴ The researcher has a background in physiotherapy and has conducted several interviews as part of research projects. She was also guided by experts as supervisors for this project. Informed consent and permission to record the interviews was obtained prior to interviews, and interviews lasted approximately 20 min – 30 min. Interviews were started with important questions and probes were used during the interview process. The interviews were based around two central questions: ‘What are the challenges you experience personally and professionally in conducting your duties? Why would you be interested to join a self-management programme or what would be your motivation to join a self-management programme?’ Individual interviews were conducted until saturation was achieved. The participants were interviewed in the language they preferred (English/Afrikaans) as the researcher was versatile in both languages. Field notes and observational cues were recorded by the researcher at the end of each interview.

Each interview was transcribed verbatim. Given the exploratory nature of the study, thematic analysis was conducted following a rich and detailed account from the participants.³³ The interviews were transcribed verbatim and each transcript read several times by the primary researcher. Initial codes were created by writing notes on the transcripts. Codes were then group and clustered together into agreed upon themes by the researcher and co-researchers.

To promote confidence in the research and ensure quality it is essential that the protocols and procedures employed in the study are detailed.³⁴ The following procedures were conducted to ensure trustworthiness: during interviewing the researcher repeated the central questions in different ways to ensure that the participants understood the questions (credibility). In addition, detailed notes were taken during the interview process and interviews were recorded (dependability). Co-researchers who were academics and had expertise in the field of qualitative research, reviewed all notes made during the analysis process and discussed the conclusions reached (confirmability). During the reporting of the findings, actual quotes are used relevant to the participants and a full description of the context is provided (transferability).

Ethical clearance was obtained from the Human and Social Sciences Research Ethics Committee at the University of the Western Cape (HS17/8/23), and permission was obtained from NGOs in the sub-district. Written informed consent was obtained from all respondents and confidentiality was ensured.

The challenges experienced by the CHWs included influence of social conditions, mental health status of the patient, patient adherence, communication and work environment.

The second question of this study focused on the challenges that CHWs experienced with their own health. The themes that emerged were ineffective self-management with lack of self-care, lack of motivation and CHWs’ own personality challenges.

The third line of inquiry in interviews focused on why the CHWs would want to engage in a self-management programme. The two themes that emerged were empowerment and widening perspectives.

In this study, the CHWs reported that the social conditions of the patients led to fear, depression and an inability to focus on what the CHWs wanted them as patients to do. Literature from India commented on the CHWs’ description of not gaining access to clients’ homes as one of the negative experiences of the job.³⁵ A recent study determined that social conditions do have an impact on the mental health of an individual.³⁶ Although there is evidence that CHWs are not always safe when they enter the homes of patients with mental health problems,³⁷ concern for safety was not raised in this study. Rather, CHWs observed the need to understand the patient and how to communicate depending on the mental health status of the patient, and CHWs in this study demonstrated empathy towards their clients’ mental health needs. Understanding the mental health conditions of patients thus becomes a key aspect of the skills that CHWs require. The need to include mental healthcare training and coordination at the primary care level is consistent with needs expressed by CHWs in this study.³⁸ Using CHWs resourcefully in the primary care setting may result in stress reduction and mental health promotion amongst community patients, especially in low- and middle-income countries that are severely under-resourced with respect to mental health services.

The lack of patient adherence to the prescribed treatment regimens were identified as a challenge. Factors contributing to the lack of adherence to proposed health regimens are multi-faceted, ranging from undervaluing preventative measures to psychosocial and socioeconomic hurdles to fears over stigma and challenges with traversing the health sector.^39,40,41 As CHWs can play a key role in areas where health service access or motivation is poor,¹³ ‘training on behaviour change techniques’ would stand CHWs in good stead to deal with adherence concerns.⁴² Community health workers have themselves reported that they are capable of motivating community members to seek appropriate health services.³⁹ It is thus apparent that CHWs can make a positive difference in assisting patients to adhere to medical regimens if they receive the correct training. Communication between the community and the health system is vital. The CHW workforce is like an important conveyor belt that transports the key health messages to the community and simultaneously increases the formal health professional’s awareness of the social determinants contributing to the patients’ health status. Community health workers in their dual role are more effective when they receive the respect they deserve from the formal health professionals and the community they serve because they feel that their contribution is valued.⁴³ One advantage of the CHW workforce is that they come from the communities they serve and therefore have a unique ability to speak the language of the community.⁴⁰ Although the community may not always understand the role of the CHW, it is important that communication channels remain open as it has been shown that CHWs are effective in strengthening communication between the medical system and the community.^44,45

In this study the CHWs raised workload and the environment as a barrier to successfully implementing their duties. Literature has previously highlighted CHW workload as a barrier to achieving goals set by supervisors or health systems.⁴⁶ In a study aptly titled ‘We are the people whose opinion don’t matter’, CHWs expressed their need to have their work environment challenges addressed by the NGOs with which they are affiliated.⁴⁷ World-wide it has been reported that increased workload and the absence of clearly defined boundaries for the job causes stress.⁴⁸ This is no different for CHWs, who are under tremendous pressure to meet health needs with subpar human resources, increasingly having additional responsibilities added to their workload and disconnection between themselves and the formal health sector.^47,49,50 Studies have documented these factors as significant contributors to occupational stress.^51,52

Aligned to the fact that the CHWs were not coping with their increased workloads, was their inability to successfully manage their own health. Literature reveals much research about the roles that CHWs play in addressing health challenges in the communities, yet there is a dearth of information on CHWs’ health needs and how they manage their own health. A substantial proportion of health professionals including CHWs struggle to manage their own health behaviours and to ‘practice what they preach’.^18,53 A recent study amongst rural CHWs reported that they present with chronic conditions such as those of the community members they serve and that they also experience physical and emotional barriers to managing their own chronic conditions, suggesting that CHWs themselves may be good candidates for self-management interventions.⁵⁴

In this study the participants highlighted empowerment and widening perspectives as two key reasons for joining a self-management programme. Research indicates that CHWs feel empowered when they are valued for the healthcare contributions they make, when they are included as part of the healthcare team and when they receive training to improve their competence.^35,43,55 With the expectation that CHWs need to contribute productively to improvements in overall community health, it is important that CHWs feel empowered.⁵⁵ Training is highly regarded amongst CHWs globally and a substantial contributor to CHW effectiveness and motivation. As such, CHWs need to be empowered to improve their own health behaviours and then to serve as a catalyst and role model by empowering the community members with increased knowledge and support.⁵⁶ The role that CHWs play in communities has been flagged as an empowerment strategy to reach communities with the aim of improving healthcare. Once communities are empowered there is an increase in the sense of self-determination and self-efficacy and a positive cycle of health behaviours may be perpetuated and sustained.⁵⁷

It has been found that CHWs were very keen to gain new knowledge, as such new information modified their worldview.³⁵ This study echoed these findings, but it also yielded further reasons for the CHWs participation in the self-management programme. These included the enjoyment they receive from gaining new knowledge, possible job advancement, the transference of new-found knowledge to benefit others, learning coping skills and the desire to learn ways to manage their health. The participants in this study also indicated that they would not pass up an opportunity for training.

Research has shown that most engagement with the CHW workforce has been around upskilling to improve the health and empowerment in the communities they serve.⁵⁸ Much has been documented about CHWs as a liaison between the formal healthcare system¹³ and the community and as a vital strategic resource to achieve global health goals, the actual CHWs and their own needs have been grossly overlooked. There is sufficient evidence to inform decision-makers about the factors that motivate CHWs into performing their roles effectively.^35,43 Empowerment of this cadre should be high on the agenda, as CHWs cannot transfer skill sets of confidence, goal setting and action planning needed to create behaviour change without themselves developing and maintaining these skills. A self-management programme, which by its design is problem-based and incorporates the person’s perception in the process, is ideally suited as a tool to achieve this end, and CHWs as frontline providers are ideal candidates to be trained as self-managers.²⁰ As members from the same communities they work in and share the same health and social needs as their communities, thus becoming effective self-managers will enhance CHWs’ cultural competence. Self-management programmes train participants in the key skills of decision-making, finding and utilising resources, forming partnerships with their healthcare providers, and taking action. The mastery of such skills would benefit CHWs in meeting role expectations.^21,59

Simply belonging to the same community and having shared experiences is not sufficient to equip CHWs to work with clients who are unresponsive, who undervalue CHWs’ role and who do not adhere to recommended health behaviours. Therefore, there is a need to incorporate these competencies into all training offered to CHWs coupled with regular maintenance sessions. Self-management is a cost-effective strategy⁶⁰ that can be used to address this, and it can therefore be successfully rolled out in low-income areas. As the CHWs become effective self-managers they can train community members and the positive cycle can continue.

The formal health system has been remiss in failing to fully accept the CHW as a critical link in the patient-centred delivery model.^45,47 It is important that health systems develop insight into the critical role of CHWs, the impact CHWs make in their communities and work to remedy the strained relationship that currently exists between CHWs and health systems. Self-management is an empowerment strategy of meta-skills that does not rely on deep content knowledge within an aspect of medicine. One strategy to improve mutual respect could be to enable CHWs to serve as self-management trainers to members of the formal health system. During these trainings CHWs can present their field findings to formal health professionals. Community health workers-led training may improve the structural competence of health professionals. Another way to address this current divide is to have more ‘multidisciplinary’ engagements, wherein all parties have an equal voice to contribute.