Above: Strokes have many risk factors.

When we observe World Stroke Week (28 October to 3 November) and World Stroke Day (29 October), we should also spare a thought for stroke survivors, their caregivers and community health workers (CHWs) in South Africa’s rural areas who often lack the necessary support to deal with this disability.

“Stroke survivors, their family caregivers and CHWs in low-resourced areas don’t have the knowledge and training about strokes, its risk factors, causes, symptoms, complications, recovery and treatment. They also don’t have access to proper rehabilitation services,” says Elsje Scheffler, a PhD student in the Division of Family Medicine and Primary Care in the Faculty of Medicine and Health Sciences at Stellenbosch University.

Under the guidance of Prof Bob Mash from the same division, Scheffler conducted a study to describe the experience and perceived needs of stroke survivors, their caregivers and CHWs in the Breede Valley subdistrict in the Western Cape where there are no stroke units, and access to and support from formal rehabilitation services is limited. The research was part of a larger study to develop a home-based stroke rehabilitation programme in the Cape Winelands district. The findings of the study were published in the African Journal of Primary Health Care & Family Medicine recently.

“This is a very serious issue given that the Western Cape has the highest incidence of strokes in the country and stroke survivors are being discharged and sent home to untrained family caregivers,” says Scheffler.

“Stroke survivors, family caregivers and CHWs we spoke to said they often have to figure out for themselves how to cope. They also expressed an overwhelming need for emotional support, knowledge and skills training.”

Scheffler says stroke survivors yearned for full recovery and did not anticipate living with a disability. “This portrays both denial and poor knowledge of the consequences of stroke and likelihood of recovery.”

Scheffler points out that the organisation of health and rehabilitation services failed to meet the needs of stroke survivors, caregivers and CHWs.

“These people have to deal with limited service capacity and long waiting times for appointments. This was further compounded by inaccessible, costly and unavailable transport.”

“They all wanted access to therapy services and rehabilitation exercises, which they viewed as the key to improvement.”

According to Scheffler, there was a real need to know how to manage incontinence given stroke survivors’ physical condition, their anxiety, embarrassment and apprehensiveness, as well as toilet facilities that are sometimes inadequate.

“Comprehensive incontinence management including specific bladder and bowel function assessment and treatment, medication, bowel and bladder training programmes, prescription of incontinence wear and products as well as toileting products can help to reduce the strain that caregivers experience when they look after stroke survivors.”

Scheffler points out that the lack of assistive products not only impacted incontinence management but complicated all care tasks and prolonged dependence, including mobility, communication, eating, drinking and self-care.

She adds that caregivers had little or no training and CHWs lacked the necessary knowledge and skills.

“Caregivers of stroke survivors felt inadequately equipped to manage complications such as pain, stiffness, blood glucose levels and seizures. The CHWs perceived caregivers and stroke survivors to often be unsure of how to use their medication.”

According to Scheffler, the burden of looking after stroke survivors caused stress, fear, anxiety and frustration in caregivers and they couldn’t singlehandedly provide sufficient supervision.

“The CHWs experienced a fragmented healthcare system, which failed to support stroke survivors, caregivers and CHWs. We also found that the CHWs’ rehabilitation scope of practice and their role is not well defined, resulting in conflicting expectations from both caregivers and CHWs.”

Scheffler adds that the CHWs also reported that their role was not acknowledged or recognised by healthcare professionals and that they were not seen as part of the team and not consulted or informed of treatment planning.

She says their study highlights the need for an appropriate training programme that will equip CHWs to train and support caregivers.

“Such a programme should focus on practical caregiving tasks, incontinence management, providing psychosocial support and assistive products, and identifying at risk families.”

With proper training, the CHWs can provide vital support to stroke survivors and their family caregivers, adds Scheffler.

  – Stellenbosch University