An exploratory qualitative study design was used to describe the barriers and facilitators experienced in the care journey of PWND. In addition, recommendations to strengthen the health services for PWNDs were explored. This study was one part of a larger PhD study by the corresponding author.

People requiring comprehensive rehabilitation care, such as SCI and stroke, are admitted to a specialised public rehabilitation Hospital in Gauteng province, which is a densely populated urban region in South Africa.²¹ Statistics in South Africa²² have reported that approximately 84% of the population is accessing public healthcare. The 24-h public rehabilitation hospital serves the entire Gauteng province and receives referrals from all levels of care. Therefore, it provided the most suitable setting. The rehabilitation hospital ward registers indicated that 98% of the patients admitted had disabilities related to neurological disorders.

Purposeful sampling was appropriate to ensure coverage of the continued care journey for PWNDs. Therefore, the patient sample consisted of adult inpatients and outpatients with no time limitations since the onset of their neurological disorders. Stroke and SCI are the most common neurological disorders in the adult population at the rehabilitation hospital. All participants were aged 18 years or older and children were excluded. All applicable patients were invited to participate in the study. Expert opinions were sought from the heads of departments (HODs) among the current health professionals at the rehabilitation hospital, including doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, audiologists, pharmacists, dietitians, social workers, and psychologists. These HODs managed professional health departments or, in the case of the operational nursing managers, outpatient departments or hospital wards.

Initially, all participants were provided with standardised information and consent forms for participation in the study, as well as for permission to be audio recorded. Semi-structured interviews were conducted to obtain a comprehensive understanding of the patients and HODs by using similar interview guides with open-ended questions. These participants were asked to describe barriers and facilitators they experienced. In addition, they were asked to recommend service improvements in the care pathway. Demographic and other socio-economic data were also collected. Patient data were further categorised according to assistive devices, conditions, waiting times, length of stay, and duration of disability.

The purpose of the study was explained to the participants in a language that they could understand, and informed consent was obtained. A research assistant was available to assist with the patients and language translation as required. All interviews were face-to-face and audio recorded. Interviews were conducted in a private hospital room. Two pilot interviews were conducted, and these results were deliberated with the co-author, Sonti Pilusa. A strategy was implemented to proceed with the subsequent interviews without material changes to the interview guide. Interviews were conducted until data saturation was reached in consultation with the study supervisors. A field journal was implemented, and all research processes and schedules were documented to meet the requirements of research audits.

Qualitative data were analysed using a framework analysis.²³ Interviews were audio recorded and then transcribed verbatim by an independent service provider. The primary researcher and research assistant verified the transcripts. The MAXQDA 24 (Analytics Pro) software was used to code the transcripts and develop themes. Continuous familiarisation and re-reading of the data, along with draft coding, were performed during and after the interviews. Two researchers analysed three transcripts inductively and explored the possible codes. Thereafter, the results were discussed, and an inductive coding framework was developed and used to code the remaining transcripts. Similar codes were then categorised into broader categories. This was verified by using a secondary coder at each stage. The final code book was shared with the supervisors for verification. There was an interpretation of the coding and triangulation of data prior to the write-up of the findings.

Figure 1 refers to the theoretical frameworks used in data analysis as adopted by the World Health Organization (WHO): International Classification of Functioning, Disability, and Health (ICF),²⁴ the Building Blocks of the health systems²⁵ and the Health System Performance Assessment for universal health coverage.²⁶

The emerging categories were classified using the ICF. The ICF conceptualises a biopsychosocial approach to care by optimising health outcomes to improve activities of daily living and maximal participation in life events.²⁴ The ICF organises and categorises functioning and disability in key health-related domains of body structure and function, activities, participation, and contextual factors.²⁷ The contextual factors comprise of environmental factors (physical, social, and attitudinal environment) as well as personal factors (lifestyle, habits, life events, etc).²⁸ The contextual factors identified in this study were further categorised as services, systems and policies, products, technology and man-made environments, support and relationships, attitudes, and other factors.²⁹

Participants’ suggestions for health service and systems improvements were categorised and adapted primarily from the Building Blocks of the health systems²⁵ and the Health System Performance Assessment for universal health coverage.²⁶ While both frameworks describe similar components to categorise and assess the health system, the building blocks provide simple evidence-based components and indicators for health system strengthening. The Health System Performance Assessment for universal health coverage is a modern framework designed to strengthen the health system and advance universal healthcare.

The methodological rigour criteria adhered to the principles of credibility, dependability, confirmability, and transferability.^30,31 The primary researcher and research assistant were trained and oriented to the study and data-collection materials in advance. An audit trail was maintained, and all the original data are available via the University of the Witwatersrand repository. During data analysis, a code-recode procedure was employed, in which segments of data were coded in separate sessions, and the results were compared. A codebook and field diary were maintained.

The researcher’s position at the hospital is in administrative hospital management. Therefore, rigid reflexivity was practiced, in which the researchers’ personal, professional, and job-related positional views were set aside to prevent bias and maintain neutrality. A research assistant was also allocated to assist with interviews. The patients were not known to the researcher prior to the interview, and the researcher was introduced to them as a physiotherapist. The researcher was known to the HODs; however, they were reassured about the study’s confidentiality and independence. Their participation was voluntary with witnessed informed consent. In addition, participants had the option of being interviewed by a research assistant who was unknown to all patients and HODs.

Ethical clearance to conduct this study was obtained from the University of the Witwatersrand Human Research Ethics Committee (Medical) (No. M220828). The study was registered in the National Health Research Database (GP_202211_037).

A total of 41 participants, 26 patients, and 15 HODs were interviewed. Figure 2 outlines the HOD demographics, with an emphasis on years of experience and representation of HODs from all health professions at the hospital. The HODs represented 100% of the departments existing at the rehabilitation hospital under each profession, as well as the Outpatients Department and the operational nursing managers from the various ward categories. The data revealed an in-depth profile of HODs: the mean total years of work experience was 22 years, and the mean years of rehabilitation experience was 12 years.

A summary of the patients’ demographic information is outlined in Figure 3. There was a lack of access to rehabilitation care, with patient waiting times for admission to rehabilitation recorded at 17.87 days, while the average length of stay in the rehabilitation hospital was 54.32 days. Patients were interviewed between 10 years and 23 years, 22 years post-onset, allowing data to be collected throughout the care journey, from inpatients to outpatients who were integrated into society.

Various barriers and facilitators are outlined in Table 1. These categories and sub-categories of themes identified are based on the findings of the study that were categorised using ICF contextual factors, that is, environmental and personal factors.^24,27,32

The majority of participants recommended key improvements in the health system. These suggestions are categorised according to the WHO health systems building blocks and the health systems performance assessment for universal health coverage in Figure 5.^25,26

The authors found that primary environmental barriers were reported in areas with poor health service delivery, health system inefficiencies, and limitations related to government directives. There was insufficient access to healthcare services, and in some instances, a complete lack of access, with rehabilitation care especially affected. Furthermore, participants reported various cases of inaccessible infrastructure and transport systems for PWND. Additional challenges identified included a shortage of health resources, significant barriers to securing employment following the onset of disability, and negative attitudes towards PWND exhibited by both family members or caregivers and healthcare professionals. These environmental factor barriers shared commonalities with previous South African studies.^33,34,35 For example, Van Biljon et al.³⁵ highlighted poor access to rehabilitation services for people with disabilities in public healthcare facilities, while Magaqa et al.³³ identified a lack of rehabilitation services and resources at the primary health level. In this study, patients and HODS also reported delays in wheelchair access and repairs, a lack of medical supplies such as wound dressings and medicines, and a shortage of equipment. Heads of departments reported significant delays because of complex procurement processes and recommended procurement contracts that allow shorter turnaround times for the delivery of goods and services. Modisakeng et al.³⁴ also identified some of these challenges in the South African public hospital procurement system.

Patients admitted to the rehabilitation hospital indicated that weekends were characterised by a lack of engagement in therapeutic interventions, resulting in periods of inactivity and associated feelings of boredom. The patients proposed that they could be more involved in physiotherapy or occupational therapy on weekends to facilitate a quicker recovery. This suggestion represents a novel perspective not documented in previous literature explored by the authors. The average length of stay of these patients at the rehabilitation hospital was 54 days; thus, implementing a patient therapy programme is recommended on weekends and public holidays with relevant in-hospital activities to optimise care and prevent risks in their physical and psychological health.^36,37 Considering the reported limitations in the availability of healthcare resources and staff, the feasibility of the suggested weekend therapeutic rehabilitation may be limited.

Community care and integration for PWND were identified as severe environmental barriers because of the lack of specialised primary healthcare services, limited community awareness, inaccessibility to buildings or transport, a lack of care placement facilities, and a shortage of rehabilitation health facilities in the community. Although a few other South African studies support these findings,^{17,33,38,39,40} many were based on studies at one point in the care journey or included any patient requiring rehabilitation services. The evidence suggests that the South African Health Department needs to develop and implement a comprehensive community care package for PWND, in collaboration with relevant disability stakeholders and other government departments. Some components of this approach are also supported by the literature.^41,42

Participants experienced various financial difficulties, and PWND were commonly dependent on social disability grants. The evidence suggests that the disability grant was not adequate to cover living expenses for PWND, and the approval of social grants was reported to be a drawn-out process.^10,43 Difficulties in securing gainful employment post disability were yet another environmental barrier identified.¹⁸ In this study, wherein 73% of patients were unemployed, and many were unsure if they could return to work. It was found that the majority of these patients would also have to be reskilled for employment, as their jobs required manual labour, prior to their disability.^10,44 Therefore, key participant recommendations to facilitate gainful employment for PWND are access to vocational rehabilitation services with emphasis on reskilling, accessibility to transport, adaptability at the workplace, and implementation of supporting government policies to accommodate PWND.^45,46

Overall, within the health system, environmental barriers were also reported in the aspects of governance, care coordination, and health system responsiveness, where key health interventions can facilitate better outcomes.^47,48,49 The evidence supports the participants’ suggestions for health system strengthening, which include improving clinical management, increasing budget allocations, improving the efficiency of procurement procedures, implementing skills training for health professionals, and implementing greater collaboration between governmental departments and disability stakeholders.

The personal factors reported in this study highlighted the negative impact of limitations in a patient’s individual physical function that was dependent on the severity of their neurological-related disability. For example, patients with SCI experienced challenges in self-care and activities of daily living that are specific to their health impairment.⁵⁰ Another personal factor was the impact of the patient’s own personal beliefs, where, for example, attempting traditional remedies or recreational activities resulted in burns to the lower limbs. Self-motivation has been described as a personal factor that reportedly influences how well a patient progresses through their rehabilitation programme. Heads of departments reported that patients who are not motivated take longer to reach the outcomes set in the rehabilitation programme. Participants recommended early and continuous patient and caregiver education and training related to personal factors, and the use of peer support.⁵¹

The key enablers in the care pathway for PWND were rehabilitation care, an MDT approach, peer support programmes, and positive family or caregiver support.^12,52,53 However, the evidence also suggests that these enablers were not consistent throughout the care pathway, and this influenced the quality of care. Therefore, the authors recommend, as also suggested by the participants, an MDT approach, education and training of patient, caregiver and health staff, the development of specialised services such as wound care, incontinence care, pain management, peer support, reintegration programmes, and vocational rehabilitation, with the provision of relevant health resources and budget support.^8,47,54

The participants were recruited from individuals accessing services or working at the same Gauteng rehabilitation hospital, as part of a larger sequential multimethod PhD (Author Prisha Alakram-Khelawon). The rehabilitation hospital provides services for patients throughout the Gauteng province and across provinces, as there is a shortage of rehabilitation health facilities in the country (South African National Health Act, Categories of Hospitals). A more comprehensive study of PWND in community care is recommended, as is an exploration of the experiences of patients discharged from rehabilitation care who are living in other provinces.

Specialised health services for PWND are required for wound care, incontinence care, pain management, peer support, the implementation of MDTs, and rehabilitation care. There is a need to improve accessibility for PWND across infrastructure, transport, and community care. The role of clinical governance and the efficiency of hospital procurement procedures should be reviewed for PWND.