Background
A stroke is known to have a negative impact on the quality of life of the individual. Self-management, which is based on self-efficacy principles, has been found to have a positive effect on quality of life since those with greater self-efficacy are better equipped to tackle their unmet needs by utilising resources in their existing environment. Self-management, which involves the active participation of the patient and in some cases their family in the management of their condition, is an important strategy in low- to middle-income countries as it lessens the burden on the healthcare system. Healthcare systems in low- to middle-income countries often lack a systematic pathway, where not all survivors of stroke receive the time-sensitive acute treatments and therapeutic interventions needed to survive and age healthily with a chronic condition. Therefore, the concept and solicitation of self-management is applicable throughout the disease process. Taking action, reflection, problems solving, resource utilisation, self-discovery and knowledge are some of the self-management principles highlighted in the literature. Before employing self-management as an adjunct to the rehabilitation of persons with a stroke in low-resourced areas, it is important to explore the individuals’ experiences of being capable of managing their condition and to identify and characterise self-management strategies employed to date.
Purpose
To explore the lived experiences of persons with a stroke in low-resourced areas of South Africa in managing their health condition in order to inform self-management support strategies that could be implemented during rehabilitation.
Methods
A phenomenological, qualitative study was used to explore the self-management strategies employed. This approach focuses on the descriptions of what people experience and the reasons for those experiences, with the final goal of eliciting the essence of shared experiences. The data were collected from persons with stroke living in the community. Interviews were conducted with 10 purposively selected individuals, who were able to share their experiences of living with a stroke as well as the strategies they employed to assist with functioning in their homes and communities.
The interviews, which were conducted in the participants’ homes, lasted for ∼45 minutes and were audio-taped. Inductive thematic analysis was used to analyse the data and ethical clearance was obtained from the University of the Western Cape’s Senate Ethics Committee (Ethics Number HS/16/5/39). To ensure transferability of the findings, a broad description of important aspects of the study, such as the setting and participants, was provided, while an audit trail of the conceptualisation of the study, participant recruitment and analysis processes was included to ensure dependability and confirmability.
Results
In exploration of the phenomenon of the lived experiences of self-management strategies employed by persons with a stroke to restore meaning and functioning, four main themes emerged. These were adaptation, engaging with information provided, self-efficacy and spirituality. The participants expressed how they adapted to facilitate: improved function, continued engagement in leisure activities and lack of finances. The following quotation illustrates these ‘I loved socialising with my friends, and dancing… I dance, but now I have to sit and dance’. ‘Before the stroke, yes, I was a driver. I drove trucks, busses. I don’t drive the big stuff anymore, the trucks that would be problem for me I would say’. ‘I still try to tend to my gardens but now I have to ask someone to help me, you know’.
The manner in which the participants engaged with the information pertaining to dealing with and handling their condition was also expressed. Information engaged with was not only provided by healthcare providers but by family or community members as illustrated in the following quotations. ‘I massaged my weak side with ointment, because the physiotherapists told me that I should remember to do that so my weak side knows it is still part of my body’. ‘My mother heard from someone that I should eat mebos sweets and so I did that, and you know eating is also a good exercise (for speech)’. In addition to the previous themes, the participants also expressed how their belief in their abilities motivated them to engage in functional and social activities. ‘I fell a lot, but I pushed through, persevered. I didn’t let it get me down, because if I let the falling get me down, I wouldn’t have been able to walk like I do today’. ‘I just have to persevere with the exercise then I should be able to walk better I do believe’.
Additionally, participants expressed their dependability on a higher being for recovery, as is illustrated in the following quotations: ‘I was positive because I had that firm belief that I couldn’t help myself without my helpers and whatever with the assistance from God’. ‘I am very grateful to God. He was the one. God was the one who encouraged me and gave me the willpower to exercise and exercise and to never give up’.
Discussion and Conclusion
The participants interviewed in this study highlighted a number of strategies they implemented to improve their functioning in their homes or their integration into society. To function within the community, stroke survivors implement adaptive behaviours, engage with information provided to them and rely on themselves and a higher power for assistance. These skills and abilities are necessary for managing the medical aspects of stroke, their roles and responsibilities within home and community life, and their emotional/mental health. The interaction of the themes found in this study highlights the complexity of life after stroke and the ability of individuals to use resources, both internal and external, in expanding their independent, autonomy and functioning. The role of rehabilitation professionals in self-management context is to provide support for the self-management strategies employed by individuals with stroke. It further provides information on the unmet needs of survivors which could be addressed by relating current strategies employed to limitations and restrictions. Knowledge of these self-management strategies is therefore important specifically in situations where rehabilitation services are limited as caring for one’s self becomes important. Results from this study highlight the importance of recognising firstly that information needs to be provided to individuals as part of their rehabilitation which could facilitate functioning. Knowledge of the environments and contexts these individuals find themselves in is therefore important. This knowledge of the context of the individuals is also important as rehabilitation professionals guide and support any adaptations that could be implemented in order to assist functioning. Acknowledging that belief in one’s self and a higher being plays a role in recovery post-stroke and how this should be facilitated is an aspect that rehabilitation professionals need to explore and be aware of.
Implications
Self-management support strategies provided during the rehabilitation of individuals with stroke should be contextual to facilitate their functioning in the communities. Physical therapist should also engage aspects relating to self-efficacy and spirituality which could enhance self-belief and resilience. The role of spirituality in the rehabilitation of stroke patients needs to be explored further.
Disclosure statement
No potential conflict of interest was reported by the authors.
Funding
This project was funded by the National Research Foundation of South Africa.