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- Convenors:
-
Maria Fernanda Olarte-Sierra
(University of Vienna)
Shirin Ahmadnia (Allameh Tabataba'i University)
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- Format:
- Panel
- Sessions:
- Tuesday 18 January, -
Time zone: Europe/London
Short Abstract:
Our panel addresses translation and collaboration across and within, biological, medical and social sciences of non-communicable diseases. We invite presentations addressing innovative collaboration with NGOs to explore patient and caregiver treatment engagement across the Global South.
Long Abstract:
Non-communicable diseases (NCD) (e.g., cardiovascular diseases, cancer, and diabetes) are the leading cause of death for approximately 15 million people each year worldwide. Mental illnesses, chronic respiratory diseases, Alzheimer's and autoimmune disorders are other examples.
NCD are remarkably biomedicalised and patients are counselled to make significant lifestyle changes as part of their treatment. The triad disease-treatment-experience makes evident the need to approach these diseases from a qualitative perspective to include all stakeholders (i.e. patients, families/caregivers, and health care professionals) who are often marginalized by the high-tech nature of their treatment or limited options for effective treatment. Despite the large body of literature on patient and family engagement in high-income countries, there is still limited research that captures how patients and their families/caregivers, in low- and middle-income countries (LMIC) experience, navigate and view their engagement during treatment for NCD.
We invite presentations that reflect on the methodological challenges and possibilities of addressing and capturing patient and family/caregiver expectations, nature and degree of experienced engagement and their preferred engagement across LMIC. We aim to reflect on and share creative methodological pathways in concert with NGOs to identify the most compelling themes of interaction and communication across families, between biomedical teams and families and between caregivers during NCD treatment. In this panel, we expect to share diverse multi and transdisciplinary translations and strategic collaboration with NGOs that privilege and bring forward patient and caregiver engagement in extreme biomedical contexts across the Global South.
Accepted papers:
Session 1 Tuesday 18 January, 2022, -Maria Fernanda Olarte-Sierra (University of Vienna) Julia Challinor (University of California San Francisco) Shirin Ahmadnia (Allameh Tabataba'i University) Nuria Rossell (Fundación Nuestros Hijos)
Paper short abstract:
We reflect on the methodological challenges of qualitative research with the support of local grassroots organisations of childhood cancer in low- and middle-income countries. Relying on them as trustworthy side doors of alternative stakeholders to reach respondents shaped our research practice.
Paper long abstract:
We present a methodological reflection on the challenges, contingencies, and possibilities of conducting qualitative research through and with the support of local grassroots organisations of childhood cancer in low- and middle-income countries (LMIC). Access to children who have survived life-threatening diseases and their parents/ caregivers for social science research is daunting. A trusted side door may be necessary when hospitals (the common front door) are overwhelmed and focused on treatment or quantitative, biomedical research. The Engagement Task Force of the International Society of Paediatric Oncology gathered a multidisciplinary team of qualitative researchers to explore LMIC parent/caregiver/survivor engagement during childhood cancer treatment. Although engagement is well documented in high-income countries, little information is available from LMIC. We conducted interviews and focus group discussions in 9 LMIC in partnership with local childhood cancer support organizations (NGOs). Relying on NGOs as trustworthy side doors of alternative stakeholders shaped our research practice and results. We conclude that by shifting the (main) entry point to approach participants and the scope of conversation we were able to bring to the surface the ways in which parents/caregivers and survivors were–in their own terms and with their socio-cultural resources–active and engaged in their child’s or their own treatment.
Dorcas Malahlela (University of the Witwatersrand)
Paper short abstract:
The paper describes how working with an established NGO in biomedical spaces facilitates engagement, through reputation with medical staff, and trust when recruiting participants. The researcher works as annex to the NGO, with their networks adopted in service of the research.
Paper long abstract:
The International Society of Paediatric Oncology’s (SIOP) Patient, Family, and Survivor Engagement working group’s multinational research project sought to investigate engagement between these parties and medical professionals during childhood cancer treatment. To reach this population in South Africa, unconventional methods were used, including working with and through an established NGO in paediatric oncology in South Africa: CHOC Childhood Cancer Foundation SA. The controlled, regimented, and regulated space of the paediatric oncology centre focuses primarily on the health of the child, while CHOC’s contribution meets psychosocial needs and counsels on diagnosis and treatment (in-house social workers staffed by CHOC). Their forty-year plus reputation facilitated permissions and buy-in of medical professionals. Potential participants were inspired to engage, as the project presented an opportunity to help as they had been helped. This paper will explain how working with and through established NGOs in biomedical spaces, a more diverse socio-cultural, economic, and demographic picture of the Non-Communicable Disease population is obtained. The collaboration fosters a ‘for us, by us’ approach, elevating subjects into participants and contributors.
Bindu Nair (Aroh)
Paper short abstract:
This study analyses the lived experiences of 4 Childhood Cancer survivors who were 12 -18 years of age at the time of their treatment. Through their stories, the Researcher tried to understand what they perceived as engagement on financial, sociological, physical and psychological levels.
Paper long abstract:
The respondents were selected from different socio economic backgrounds, 2 from lower middle class, one each from middle and upper middle class. The children were treated also in different kinds of hospitals, corresponding to their financial status. 2 children from the lower-middle class were treated in the government Medical College Hospital, one from the middle-class background was treated in a reputed Private Hospital and the child from Upper middle-class got her treatment from the best hospital with international standards. Researcher tried to maintain all possible variables and thus the respondents included 3 boys and a girl.
The study was conducted in the four states of Southern India as part of a global study that included 9 low and middle income countries in 2019 called “Patient, Family, Stakeholder Engagement in Childhood Cancer”. The Writer re-visited the respondents again for this paper. The Respondents were identified and reached out to through the NGO the Researcher founded and associated with. Details were collected through informal discussions done with each respondent and his/her family in their mother tongue and through Focus Group discussions. The qualitative data was analyzed thematically to arrive at the conclusions.
* The study brings to light that the knowledge and the engagement in treatment for the patient and the family members are directly proportional to their financial and social status.
* Lack of/ inadequate communication between the health care professionals and the patient and family a major roadblock in engagement in treatment.