Browsing by Author "Steadman, Jacqui"

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    The experience of caring for a child with cerebral palsy in rural communities of the Western Cape, South Africa.
    (Stellenbosch : Stellenbosch University, 2015-03) Steadman, Jacqui; Pretorius, Chrisma; Stellenbosch University. Faculty of Arts and Social Social Sciences. Department of Psychology
    ENGLISH ABSTRACT : It has been suggested that the complex needs of children with neurodevelopmental disorders are best addressed with a family-centred approach. As this approach has been increasingly incorporated into healthcare systems over recent years, most children with disabilities are now able to remain at home as opposed to living in institutions or group homes. Many parents have thus been forced to adopt the role of a primary caregiver for their child that has been diagnosed with a disability or chronic condition. This study aimed to investigate the experiences of caregivers for children with cerebral palsy in rural communities of the Western Cape, with a specific focus on the barriers and facilitators that they encounter. An exploratory qualitative design was employed and 15 individuals (aged 27-62), who were identified as caregivers for a child with cerebral palsy through purposive sampling were interviewed. Thematic analysis was used to analyse and generate themes from the semi-structured interviews that were conducted with participants. A number of barriers to caring emerged including the personal consequences of caregiving, difficulty adjusting to caregiving duties, environmental conditions, lack of access to healthcare services, lack of respite services, and negative perceptions towards disability. Various facilitators to caring were also identified, namely personal coping methods, personal transformation, social support, relationship with one’s child, community resources, child’s crèche, and financial assistance. The five levels of the Social Ecological Model were used to conceptualise the discussion of these findings and links were made to the existing literature on the caregiver experience in the developing context. In this process it was found that participants often encountered similar barriers and facilitators to caregivers for individuals with other types of conditions, such as HIV/AIDS, autism, mental illness, cancer, and neurological disorders. This could suggest that caregivers residing in developing countries share similar experiences, regardless of the condition of the care receiver. Although participants received support from a number of sources that aided them with their caregiving duties, it is evident that they still encountered gaps in the provision of a number of important services, including lack of information from healthcare professionals, lack of community programs to reduce stress and promote empowerment, and lack of disability-friendly facilities. It is vital that caregivers have access to these services to ensure their child’s well-being as well as their own. There is thus a need to explore how these services can be made more accessible to caregivers in rural communities.
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    The impact of an online Facebook support group for people with multiple sclerosis on non-active users
    (AOSIS Publishing, 2014-11) Steadman, Jacqui; Pretorius, Chrisma
    Background: Multiple sclerosis (MS) is a debilitating disease and there is little research on support networks for people with MS (PwMS). More specifically, most studies on online support groups focus on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way. Objectives: This study therefore aimed to explore the experiences of non-active users of an online Facebook support group for PwMS. Emphasis was placed on the facilitators and the barriers that were associated with membership to this group. Method: An exploratory qualitative research design was implemented, whereby thematic analysis was utilised to examine the ten semi-structured interviews that were conducted. Results: Several facilitators were acquired through the online support group; namely emotional support (constant source of support, exposure to negative aspects of the disease), informational support (group as a source of knowledge, quality of information) and social companionship (place of belonging). Some barriers were also identified; namely emotional support (emotions lost online, response to messages, exposure to negative aspects of the disease), informational support (information posted on the group, misuse of group) and social companionship (non-active status) Conclusion: These findings demonstrate that the non-active members of the online support group for PwMS have valid reasons for their non-active membership status. More important, the findings suggest that the online Facebook support group provided the group members with an important support network in the form of emotional support, informational support and social companionship, despite their non-active membership status or the barriers that have been identified.