IntroductionCancer is an important health problem in Africa with projections that incidence could double by 2030. While sparse, the literature on cancer control in African low- and middle-income countries suggests poor cancer planning, overburdened services and poor outcomes. South Africa has established oncology health care services but also has low cancer awareness, poor cancer surveillance and widespread service challenges.MethodsData for this study was derived from 316 photovoice interviews with cancer patients, families of cancer patients and oncology workers across South Africa. The objectives of the study were to collect first-hand feedback about cancer challenges and to develop recommendations for the improvement of cancer control strategies.Results9 themes of cancer challenges were distinguished via thematic content analysis of the photo-narratives. The identified themes of cancer challenges were physical and treatment challenges, emotional, poor services, transport, finances, information, powerlessness, stigma, and schooling challenges.ConclusionThe findings of this study offer the patient and family perspective of cancer challenges as a valid contribution to our body of cancer knowledge. The 9 themes of cancer challenges profile the emotional, physical and social impact of cancer on patients and families, and offer detailed subjective information about problem occurrence in the trajectory of care. Recommendations following from the 9 themes of cancer challenges include training for improved patient-centred care standards, the need for cancer surveillance, innovative and locally appropriate cancer awareness campaigns, private and government health care partnerships and the development of psychosocial services. The advocating of findings and recommendations to influence cancer control strategies in South Africa, is indicated.
<strong>Background:</strong> Many childhood cancers are treatable with cure rates between 70% and 80% in well-resourced countries, while approximately 80% of African children with cancer die without access to adequate care. South Africa has an established oncology health care service with overburdened infrastructure, low cancer awareness in the primary health care service and widespread service delivery challenges.<br /><strong>Aim:</strong> The aim of this study was to explore, document and analyse the subjective experience of childhood cancer-related challenges in South Africa, and to make the results available to stakeholders.<br /><strong>Setting:</strong> A total of 58 patient-participants (childhood cancer patients, parents and guardians of children with cancer) and 10 paediatric oncology workers (oncology social workers, oncology nurses and interim home carers) were selected from tertiary oncology centres and from the Childhood Cancer Foundation of South Africa (CHOC) interim care homes across South Africa.<br /><strong>Method:</strong> Participants were selected via convenience sampling and qualitative data were derived from face-to-face photovoice interviews conducted by psychologists and social workers and supported by translators when necessary.<br /><strong>Results:</strong> Nine themes of cancer challenges were identified via thematic content analysis of the photo-narratives, that is, physical and treatment challenges, emotional, poor services, transport, finances, information, powerlessness, stigma and schooling challenges.<br /><strong>Conclusion:</strong> Lack of awareness and knowledge about cancer at the African traditional healer, primary and regional health care service levels were frequent challenges. Important feedback included lack of patient-centred care, separation of children with cancer from guardians, diagnostic delays, permanent disabilities for children because of cancer, emotional trauma, special needs of teenagers and a lack of community and palliative care support.
This study aims to offer evidence-based feedback about the emotional challenges of cancer in South Africa. The action research photovoice methodology was used to capture accounts of cancer-related challenges via 316 face-to-face interviews with cancer patients and family members (n = 286), and oncology support and medical staff (n = 30). The photovoice contributions constituted qualitative data that were analysed according to inductive thematic analysis whereby nine themes of cancer challenges were identified and photovoice images were descriptively summarised from a phenomenological perspective. The emotional challenges theme was the most commonly reported of these themes, and is the focus of this paper. The findings of this study highlighted widespread emotional distress, anxiety, loss, poverty, physical challenges, traumatic impact of a cancer diagnosis, cancer stigma and low patient empowerment in the medical setting. Four main causes of patient emotional isolation in advanced stages of cancer are also identified, and this extends current understanding and offers new direction for clinical management. Recommendations from these findings include the need for the development and inclusion of psychosocial oncology services, best-practice standards of care, distress screening, patient empowerment and the prioritising of training and support for oncology staff in the South African health-care setting.
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