South Africa (SA) and other low- and middle-income countries (LMICs) have an increasing burden of stroke as a result of socio-economic development, urbanisation, increasing risk factors for noncommunicable diseases and a transition in the epidemiological profile of the population associated with ageing, increase in cardiovascular diseases and adoption of the Western lifestyle (Donkor 2018; Langhorne et al. 2018; Taylor & Ntusi 2019). While significant functional improvement is possible, around a third of stroke survivors require ongoing care (Jaracz et al. 2015). In rural SA, the incidence and prevalence of stroke are higher than elsewhere recorded in SA or other African countries (Maredza, Bertram & Tollman 2015; The SASPI Project Team 2004), and the lack of access to medical and rehabilitation services increases disability and impairment, with resultant dependence on family caregivers. While family caregiver training is integral to stroke care and rehabilitation in all settings and levels of the health system (Cameron et al. 2016; Lindsay et al. 2014; Pandian et al. 2016; Winstein et al. 2016), the lack of services in rural SA contexts means a lack of caregiver training in these communities.

The local and international literature describes a myriad of caregiver training interventions in different levels of care, different settings and with different caregiver needs and stroke survivor stages of recovery (Aslani et al. 2016; Bakas et al. 2014; Brereton, Carroll & Barnston 2007; Camak 2015; Chaiyawat & Kulkantrakorn 2012; Chaiyawat, Kulkantrakorn & Sritipsukho 2009; Deyhoul et al. 2020; Forster et al. 2013; Hafsteinsdóttir et al. 2011; Krieger, Feron & Dorant 2017; Lutz et al. 2016; Mudzi, Stewart & Musenge 2012; Nordin et al. 2014; Pitthayapong et al. 2017; Robinson et al. 2005; The ATTEND Collaborative Group 2017; Smith et al. 2004; Torres-Arreola et al. 2009; Wang et al. 2015; Yan et al. 2016; Zhou et al. 2019). Most evidence, including evidence from SA, comes from stroke survivors who received specialised stroke unit care and/or multidisciplinary rehabilitation services (Aslani et al. 2016; Bakas et al. 2014; Brereton et al. 2007; Camak 2015; Dobe, Gustafsson & Walder 2022; Forster et al. 2013; Hafsteinsdóttir et al. 2011; Krieger et al. 2017, 2021; Lutz et al. 2016; Robinson et al. 2005). There is limited evidence for caregiver training interventions in settings where these services are not available (Deyhoul et al. 2020; Dobe et al. 2022; Krieger et al. 2021; Mudzi et al. 2012; Nordin et al. 2014; Torres-Arreola et al. 2009; Zhou et al. 2019). Despite the volume of evidence on caregiver training, few publications detail the training development process (Forster et al. 2015; Krieger et al. 2017; Robinson et al. 2005). This inadequate description of the development process, particularly the context and instructional design methods, limits the transferability of interventions to low-resourced primary healthcare (PHC) settings. There is also no evidence of caregiver training as a PHC intervention.

South African health policy promotes a PHC approach with a continuum of preventive, curative, rehabilitative and palliative services. Home- and community-based care (HCBC) are delivered by nurse-led teams of community health workers¹ (CHWs) (Naledi, Barron & Schneider 2011; National Department of Health 2018). Rehabilitation services at the PHC level are limited and infrequent (Rhoda, Mpofu & De Weerdt 2009) and often inaccessible because of poverty and a lack of or inaccessible transport (Cawood & Visagie 2016; Eide et al. 2015; Maart et al. 2007; Maart & Jelsma 2014; Visagie & Swartz 2016).

National initiatives to strengthen PHC rehabilitation services include strengthening the role of CHWs, as well as introducing midlevel rehabilitation workers² (National Planning Commission 2012). However, the latter has not gone to scale, and there is a need to redress the inequitable distribution of rehabilitation services. Stroke caregiver training is congruent with the scope of practice of CHWs (Hartzler et al. 2018). Unfortunately, the national CHW training curriculum contains limited rehabilitation content and only as elective modules (South African Qualifications Authority 2018a, 2018b, 2018c), thus limiting the knowledge of CHWs to support family caregivers.

The Western Cape province in SA (Figure 1) has a higher prevalence of stroke compared with national figures (Shisana et al. 2013; Statistics South Africa 2018a). Within its less-resourced rural districts, there are no stroke units or inpatient rehabilitation services. Acute inpatient stays are an average of five days (Scheffler & Mash 2019), and stroke survivors are discharged home to untrained family caregivers, resulting in poor stroke survivor and caregiver outcomes and satisfaction (Scheffler & Mash 2019) and a high caregiver burden (Scheffler & Mash 2020). For these stroke survivors and their family caregivers, CHWs may be their only accessible source of health care and rehabilitation. However, these CHWs have no stroke or rehabilitation-specific training. Because of the lack of rehabilitation service capacity in the district, a community-based services (CBS) manager from the rural Cape Winelands District (Figure 1) requested the researcher’s assistance with the development of a rehabilitation training program for CHWs to train family caregivers of stroke survivors within HCBC services. The district had one multidisciplinary professional rehabilitation team of seven members and no midlevel rehabilitation workers. The researcher, a physiotherapist, had extensive stroke rehabilitation experience in low-resourced settings and with designing and developing training programs for rehabilitation health workers. This article reports on the design and development of a contextually appropriate stroke training program for CHWs within a rural South African PHC context.

This article reports on the last stage of a multistage mixed-methods study (Table 1). The first two convergent stages, a quantitative longitudinal survey (Scheffler & Mash 2019) and a qualitative exploratory descriptive study (Scheffler & Mash 2020), preceded the participatory action research study in stage three.

In this last stage of this multistage mixed-methods study, a cooperative inquiry (CI) process was used (Heron 2014; Higginbottom & Liamputtong 2015; Ramsden et al. 2018). Cooperative inquiry had been used in stroke program and training development (Aslani et al. 2016; Dobe et al. 2022; Krieger et al. 2021). The CI followed the cyclical steps of planning, action, observation and reflection (Table 1). The cyclical steps of the CI were also aligned with the analyse, design, develop, implement, evaluate (ADDIE) (analyse, design, develop, implement, evaluate) instructional design model (Allen 2006; Mayfield 2011) for the development of a training program (Table 1): analyse, design, develop, implement and evaluate.

This article focuses only on the planning step of the CI, which corresponds with the analysis, design and development steps of the ADDIE model (Figure 2). A separate article will report on the remaining steps of the inquiry where the program, per the ADDIE model, was implemented and evaluated.

This section reports on the results of the planning of the CIGs in the first three steps of the ADDIE model, namely analyse, design and develop.

This study appears to be the first of its kind to design an appropriate stroke training program for CHWs to empower caregivers and stroke survivors in the home. Several stroke interventions, including caregiver training, have been developed through co-creation (Aslani et al. 2016; Dobe et al. 2022; Krieger et al. 2021). However, these programs focus on stroke survivors who have received formal rehabilitation services. These programs are primarily delivered by professionals and also include applications and other technological solutions. In this study, the stroke survivors had not received any formal rehabilitation services.

The training program was designed under the PHC philosophy to address a significant community health problem and was developed through coordinated engagement between local professional and nonprofessional healthcare providers using appropriate technology and resources (Mash et al. 2019; Naidoo, Van Wyk & Joubert 2016; World Health Organization 2008). Technological barriers, such as restrictions on the government computer networks, prevented the use of cloud-based collaborative environments during the design and development phase and impacted the participative process. Primary healthcare in SA is evolving, and MDPs in this study had neither training nor experience in developing community-based interventions and had limited time to participate in such initiatives because of their focus on individual care. Participating in this novel process should lay a foundation for future team-based interprofessional community-oriented PHC interventions. Effective leadership and management are needed to reshape existing care models into comprehensive PHC interventions (Marcus, Hugo & Jinabhai 2017; Schneider et al. 2015).

While stroke caregiver training is routinely delivered by rehabilitation professionals (Bakas et al. 2015; Camak 2015; Chaiyawat & Kulkantrakorn 2012; Forster et al. 2015; Hankey 2013; Mudzi et al. 2012; Sabariego et al. 2012; The ATTEND Collaborative Group 2017; Wang et al. 2015), task-shifting to other healthcare cadres is advocated where numbers of rehabilitation professionals are limited (Bryer 2009; Bryer et al. 2011; Hassan et al. 2012; Miranda et al. 2017; The ATTEND Collaborative Group 2017; Wasserman, De Villiers & Bryer 2009). Task-shifting to nurses is common (Deyhoul et al. 2020; Torres-Arreola et al. 2009; Yan et al. 2016; Zhou et al. 2019). However, problems such as increased workload, time implications and inadequate underlying skills and knowledge may undermine such task-shifting (Torres-Arreola et al. 2009; Zhou et al. 2019). No evidence of task-shifting to mid- or grassroots-level workers was found for stroke rehabilitation in LMICs.

Unlike many caregiver training interventions in LMICs, which focus on home-based rehabilitation exercises (Chaiyawat et al. 2009; The ATTEND Collaborative Group 2017; Torres-Arreola et al. 2009; Wang et al. 2015; Yan et al. 2016; Zhou et al. 2019), this training program included minimal teaching of home exercises to ensure that the content was aligned with the CHWs’ scope of practice and avoided overlap with the scope of future midlevel rehabilitation workers. By following the principles of the Bobath neurorehabilitation approach, recovery was promoted through a 24 h therapeutically structured caregiving approach and neuroplasticity by repeated task practice and motor learning. Routinely repeated caregiving activities become therapeutic and synchronous with the therapeutic approach from therapists (Michielsen et al. 2019; Vaughan-Graham et al. 2009, 2019a, 2019b).

The content of this training program was based on an in-depth analysis of the local context and the needs of the caregivers and stroke survivors. In contrast, most caregiver training programs, including those developed in LMICs (Chaiyawat et al. 2009; Chaiyawat & Kulkantrakorn 2012; Deyhoul et al. 2020; Mudzi et al. 2012; Pitthayapong et al. 2017; The ATTEND Collaborative Group 2017; Torres-Arreola et al. 2009; Yan et al. 2016; Zhou et al. 2019), have followed a top-down approach with design by professionals from specialist rehabilitation services. Only a few training programs (Dobe et al. 2022; Krieger et al. 2017; Robinson et al. 2005) have been informed by the needs of the target population.

Although the topics covered in this training program were similar to others in the immediate post-acute period in both high-income countries (HICs) (Bakas et al. 2014; Forster et al. 2015; Kalra et al. 2004; White, Cantu & Trevino 2015) and LMICs (Chaiyawat et al. 2009; Chaiyawat & Kulkantrakorn 2012; Deyhoul et al. 2020; Mudzi et al. 2012; Pitthayapong et al. 2017), it differed from existing programs by focusing on culturally and contextually appropriate information and training materials, including low-cost, self-made assistive products. Each lesson plan also provided guidance on how to further adapt the training to the local setting. Contextual appropriateness has only recently been emphasised in stroke training (Krieger et al. 2017; The ATTEND Collaborative Group 2017; Yan et al. 2016; Zhou et al. 2019).

The low educational levels of both the CHWs and the final target population impacted the selection of teaching methods and the development of training resources. The interactive nature of the adult education teaching model (Hanger & Wilkinson 2001; Kaufman 2003; Knowles 1970) accommodated the low literacy levels (Doak, Doak & Root 1996), different learning styles (Hanger & Wilkinson 2001; Knowles 1970) and learning of practical skills (Hanger & Wilkinson 2001; Kaufman 2003; Maguire & Pitceathly 2002; Mudzi et al. 2012; Nadar & McDowd 2008; Pitthayapong et al. 2017), as well as feedback through assessment (Deyhoul et al. 2020; Hanger & Wilkinson 2001; Kaufman 2003; Maguire & Pitceathly 2002; Mudzi et al. 2012; Pitthayapong et al. 2017). The plain language text of the resources and trainer’s manual and the picture-based format of the learner’s manual and information booklet facilitated access and understanding (Doak et al. 1996).

Poverty, technological barriers (Opoku, Stephani & Quentin 2017) and prohibitive data costs (Independent Communications Authority of South Africa 2017) limited opportunities for CHWs and caregivers to access online information and/or to use electronic teaching and information platforms, necessitating the development of paper-based resources. All resources were also made available online, with online size minimised by using black and white line drawings and low-resolution videos and slide presentations.

With limited access to and availability of psychosocial services, this training program included a substantial focus on psychosocial support within the CHW’s scope of practice, including identification and referral of at-risk families. Although common in training programs in HICs, psychosocial support is less frequent in training programs in LMICs (Pitthayapong et al. 2017; Yan et al. 2016; Zhou et al. 2019).

Although the structure of the training program for CHWs followed a specific sequence and duration, the training of caregivers would be tailored to the stroke survivor’s specific level of functioning and care needs, similar to most training programs (Chaiyawat et al. 2009; Chaiyawat & Kulkantrakorn 2012; Forster et al. 2015; McLennon et al. 2014; Mudzi et al. 2012; Pitthayapong et al. 2017; The ATTEND Collaborative Group 2017; Wang et al. 2015; Yan et al. 2016; Zhou et al. 2019). Progression of caregiver training would be determined by the care coordinators and the CHWs.

As a participatory action research project, the involvement of the service providers was limited because of low numbers and high service demands. None had experience in designing a training program of this scale and nature. Fully collegial roles (Higginbottom & Liamputtong 2015) with equal responsibility for conducting the research project and compiling and implementing the training program were not possible. Cooperative inquiry group members therefore clarified the extent of their involvement at the start. Whereas CIG members are usually both co-researchers and co-subjects during the inquiry (Heron 2014), limited availability shifted the focus to the pragmatic tasks of developing the training program, with reflectivity limited to more practical and operational awareness. Transferability and use of the training program will be limited to similar services, contexts and group characteristics and will need to be adapted for the local context with regard to resources, technology, health care service structure and existing knowledge. The design of the resources allows for this. This article only reports on the planning phase of the inquiry. A future article will report on the implementation of the program and subsequent actions, observations and reflections of the CIGs.

This study demonstrated how local healthcare services at the PHC level can design an appropriate, contextually relevant community-oriented intervention through a participatory approach. The CI planning step described in this article used the ADDIE model to analyse, design and develop an appropriate home-based stroke rehabilitation program to be delivered by CHWs in a low-resourced setting. This home-based stroke rehabilitation program and its accompanying training program for CHWs should be implemented and further evaluated in practice.