Type E – Dr Lynn Edwards – Patient-centred Psychosocial Oncology in LMICs
A travel grant was awarded to Dr Lynn Edwards, a Psychologist in Cape Town to attend and present at the 20th International Psycho-Oncology Society World Congress of Psycho-Oncology (IPOS 2018) in Hong Kong from 28 October to 3 November 2018.
Challenges For Children With Cancer In Low Resourced Settings: An Analysis Of 68 ‘On-The-Ground’ Photo-Narratives
The purpose of the study was to collect evidence of cancer challenges in South Africa to enable those with ‘lived-experience’ to contribute directly to knowledge about cancer challenges rather than ‘expert’ voices dictating what is regarded as knowledge. Photovoice contributions from 58 childhood cancer patients, their parents and 10 workers in the field of childhood oncology were extracted from a larger national sample of 316 interviews and subjected to inductive thematic content analysis. Nine themes of cancer challenges were identified from the thematic analysis and are presented and discussed in this paper i.e. emotional, information, physical and treatment, powerlessness, poor services, finances, transport, cancer stigma and schooling challenges. The findings provide information about the little studied area of childhood cancer experiences across the referral pathways in South Africa and offer important detailed substance to challenges e.g. the practice of separating children over the age of 8 years from parents at district hospitals, role of abject poverty in the struggle to access cancer care, distress of family separation, transport, employment and treatment cost problems. Further to describing problems and making recommendation, this study incorporates the undertaking to participants to make the findings available for cancer advocacy in South Africa. The findings of this study support the call for large scale strategic planning and cancer planning in Africa (Busolo & Woodgate, 2015; Price, Ndom, Atenguena, Nouemssi & Ryder, 2012) and specifically in South Africa, and the detailed qualitative information suggests that ‘targeted interventions’ to improve existing services (Kazak, et al., 2007) is also recommended.
Understanding and responding to the challenge of cancer care in low-resourced settings
While low levels of service delivery are suspected, little is documented about the realities of the cancer experience in developing and low- middle-income countries (LMIC). This workshop will showcase the value of qualitative research in providing a substantial understanding of the LMIC cancer experience, and will also explore how evidence-based data can be an important planning tool to try to align constrained services with the essential needs of cancer patients’ in low resource communities. This workshop will use the findings of published qualitative research in South Africa to reference grassroots cancer challenges in low-resource settings. Nine identified themes of cancer challenges will be introduced, their complex interrelationships explored, their global relevance discussed and appropriate responses considered. A 4-levelled cancer advocacy framework will be presented to guide the development of targeted cancer advocacy strategy across the trajectory of cancer care. Practical examples of advocacy materials, projects and initiatives will be presented and discussed thoroughly. The workshop process will be very participant-interactive and will conclude with an exercise to enable participants to practice the application of the workshop content to (their own) ‘real life’ low resource settings. Written and electronic resource material that is related directly to the workshop content will be made available to participants.
Major areas of study and how the visit contributed to the understanding and/or management of cancer
The major area of study is focused on the psychosocial challenges of cancer in low resourced settings. The importance of the development of responsible and ethical responses to patient psychosocial challenges and the role of cancer advocacy in the education and mobilisation of non-governmental organisations, governmental health care departments, political decision makers and patient advocates.
This visit contributed to liaison and communication with other oncology workers in other African states and other Low Middle Income Countries (LMIC) across the globe. Exchange of information and strategic planning with oncologists, psychiatrists, social workers, psychologists, nurses etc. from the Philippines, India, Argentina, Malaysia as well as a number of African States was particularly valuable for ourselves as well as for workers from these regions. Because many problems and challenges for cancer patients were similar in LMICs, it was helpful to share ideas about improved service delivery, patient empowerment and strategic oncology planning in the political and decision-making domains. Invitations for collaborative conversations were received from a number of psycho oncology workers and academics from other countries.