A descriptive qualitative study of childhood cancer challenges in South Africa: Thematic analysis of 68 photovoice contributions

Abstract

<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.

Exploring grassroots feedback about cancer challenges in South Africa: a discussion of themes derived from content thematic analysis of 316 photo-narratives

“…Poor services challenges : As evidenced by this and other studies [ 27 , 36 , 37 ], lack of patient-centred care is inextricably linked with poor services and constitutes a risk to outcomes. In addition, health care participants in this study spoke out about inadequate oncology training standards, the lack of continuous professional education and low cancer detection skills becoming standards of health service.…”

“…Physical and treatment hardships as well as socioeconomic issues such as lack of support, stigma, transport and financial struggles are documented causes of emotional distress [ 22 , 23 ], and in line with other research [ 24 , 25 ], those with advanced cancer reported increased levels of trauma and isolation. Separation of families was an intense stressor for many, and this was particularly traumatic when parents and guardians were denied the right to stay with children who were admitted to hospital [ 26 , 27 ]. Generally, parents of children with cancer reported more emotional trauma than their children who were noted as coping well as long as they had the constant presence of a parent or guardian.…”

“…Schooling challenges : Interruptions to normal school life, developmental milestones and separation from friends were problematic for many children with cancer [ 27 ]. The most educationally vulnerable children were those whose parents could not assist with homework, and where contact with hometown teachers was not maintained.…”

Pediatric cancer communication in low‐ and middle‐income countries: A scoping review

“…One‐quarter of the studies directly involved children, and 2 studies focused exclusively on patient participants 21,60 . Of the 9 studies including health care workers, 22‐24,31,32,35,38,42,54 2 focused on nursing perspectives 22,42 . Studies were conducted at all phases of cancer care, from diagnosis through bereavement.…”

“…Cancer misconceptions were exacerbated when oncologist communication was limited (Egyptian study) 52 or when providers used inconsistent, incorrect, or undefined medical terms to describe the disease and treatment, as reported from Indonesia, Brazil, and Mexico 26,38,54 . Gaps in educational status 39,59 and language barriers 35,57 between providers and patients in sub‐Saharan Africa contributed to a hierarchical relationship, which decreased caregiver empowerment and engagement. Similarly, caregivers from Malawi, Indonesia, Iran, and Tanzania were hesitant to ask questions 54,59 and felt that providers did not engender trust 33 or lacked compassion 60 …”