The experience of caring for a child with cerebral palsy in rural communities of the Western Cape, South Africa.

Thesis (MA)--Stellenbosch University, 2015ENGLISH 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.AFRIKAANSE OPSOMMING : Daar word voorgestel dat die komplekse behoeftes van kinders met neuro-ontwikkelingsversteurings die beste aangespreek word deur ‘n familie-gefokusde benadering. Aangesien hierdie benadering meer geredelik geïnkorporeer is in die gesondheidsorg sisteem oor die afgelope paar jaar is meeste kinders met gestremdhede nou in staat om by die huis te kan bly in plaas daarvan om in inrigtings of groepshuise te woon. Baie ouers is dus geforseer om die rol as primêre versorger aan te neem vir hulle kind wat gediagnoseer is met ‘n gestremdheid of kroniese toestand. Hierdie studie se doel was om die ervarings van versorgers van kinders met serebrale gestremdheid in landelike gemeenskappe van die Wes-Kaap, te ondersoek, met ‘n spesifieke fokus op die hindernisse en fasiliteerders wat hulle ondervind. ‘n Ondersoekende kwalitatiewe ontwerp is gebruik en onderhoude is gevoer met 15 individue (ouderdomme 27-62) wat deur doelgerigte steekproefneming geïdentifiseer is as versorgers van ‘n kind met serebrale gestremdheid. Tematiese analise is gebruik om die semi-gestruktureerde onderhoude wat met die deelnemers gevoer is te analiseer en temas te genereer. ‘n Aantal van die hindernisse tot versorging het na vore gekom en sluit die persoonlike gevolge van versorging, probleme om aan te pas by die versorgingspligte, omgewingstoestande, tekort aan toegang tot gesondheidsorg dienste, tekort aan verligting dienste en negatiewe persepsies teenoor gestremdhede in. Verskeie fasiliteerders tot versorging is ook geïdentifiseer, naamlik persoonlike hanteringsmetodes, persoonlike transformasie, sosiale ondersteuning, verhouding met hulle kind, gemeenskapsfasiliteerders, kind se speelskool en finansiële hulp. Die vyf vlakke van die Sosiale Ekologiese Model is gebruik om die bespreking van hierdie bevindinge te konseptualiseer en verbintenisse is gemaak met bestaande literatuur wat handel oor die versorger se ervaring in die ontwikkellende konteks. In hierdie proses is gevind dat deelnemers dikwels dieselfde hindernisse en fasiliteerders ondervind as versorgers van individue met ander tipe toestande, soos MIV/VIGS, outisme, geestesiektes, kanker en neurologiese versteurings. Dit kan moontlik beteken dat versorgers wat in ontwikkellende lande woord dieselfde ervarings deel, ten spyte van die toestand van die persoon wat die versorging ontvang. Alhoewel deelnemers ondersteuning van ʼn aantal bronne ontvang het wat hulle help met hulle versorgingspligte, is dit duidelik dat hulle steeds gapings ervaar in die voorsiening van ʼn aantal belangrike dienste, insluitende ʼn tekort aan inligting van gesondheidsorg werkers, ʼn tekort aan gemeenskapsprogramme om stres verligting en bemagtiging te bevorder en ʼn tekort aan gestremdheid-vriendelike fasiliteite. Dit is baie belangrik dat versorgers toegang het tot hierdie dienste om die welstand van hulle kind en hulself te verseker. Daar is dus ʼn behoefte om te ondersoek hoe hierdie dienste meer toegangklik gemaak kan word vir versorgers in landelike gemeenskappe

The impact of an online Facebook support group for people with multiple sclerosis on non-active users

CITATION: Steadman, J. & Pretorius, C. 2014. The impact of an online Facebook support group for people with multiple sclerosis on non-active users. African Journal of Disability, 3(1): 1-10, doi: 10.4102/ajod.v3i1.132.The original publication is available at http://www.ajod.orgBackground: 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.http://www.ajod.org/index.php/ajod/article/view/132Publiser's versio