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A study to understand the experiences of adolescents and young adults living with cancer in a northern cape public health setting

Introduction: The challenges and holistic care needs of adolescents and young adults (AYAs) with cancer in low- and middle-income countries are under-researched. This limits evidencebased information regarding their experiences related to palliative care and quality healthcare services, resulting in a neglect in planning services for this population. Aim: The aim of the research study was to explore and identify the challenges experienced by AYAs with cancer in a Northern Cape public health setting. Objectives: The objectives were to describe the key concerns and priorities experienced by AYAs with cancer, to determine their holistic care needs and to identify the current limitations of healthcare resources that influence the provision of appropriate palliative care for AYAs with cancer in the Northern Cape. Methodology: In this qualitative study, purposive sampling was utilized to select AYAs with cancer and between the ages of 18 and 39 years. The participants recruited were patients from the Northern Cape public health setting who received curative or non-curative cancer treatment at either Robert Mangaliso Sobukwe Hospital or Harry Surtie Hospital oncology centres. Their experiences were explored using individual, open-ended semi-structured interviews. Data were analysed using thematic analysis. Results: A total of twelve participants between the ages of 22 and 39 were identified. Male and female participants were equally representative of the sample and their cancer diagnosis included many diverse tumour types that ranged from Hodgkin's lymphoma, breast cancer, testicular cancer, larynx cancer, melanoma, and colon cancer, to Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome-related malignancies such as Kaposi's sarcoma, cervical cancer, and non-Hodgkin's lymphoma. Six key themes emerged that provided insight into the challenges experienced by AYAs with cancer. These challenges were interrelated on a physical, psychosocial, spiritual and healthcare level, and they included the physical impact of cancer, additional illness burdens such as Human Immunodeficiency Virus and Tuberculosis, health system issues such as poor communication, delayed diagnosis, negative nursing attitudes, poor health services, inadequate resources, and transport problems. Apart from similar challenges experienced by AYAs with cancer in developed countries, such as overwhelming emotional responses, threatened dreams and hopes, a need for emotional counselling and better support systems, participants from this study also reported the impact of socio-cultural influences such as stigmatization, cultural beliefs, socio-demographics, poverty, unemployment, and a lack of cancer awareness and education within communities. Conclusion: AYAs with cancer experience complex, multidimensional, interrelated challenges that include many health system issues. In a middle-income country, these challenges are amplified by additional factors such as communicable diseases, sociocultural influences, and poverty. Consequently, their holistic care needs are largely unmet. Even though the findings may only be generalizable to limited settings, they can be transferred to form specific recommendations on how to improve the quality of life of AYAs with cancer and that of their families in the Northern Cape public health setting. As reflected by these findings, higher interventions on a National Health level in order to implement the current national palliative care policy, are required. Advancements in AYA oncology care that acknowledge their unique developmental age, emotional capacity, distinct life stage, and social background are also pivotal. Notwithstanding the significant challenges that plague quality healthcare delivery in the Northern Cape, further research to elucidate the meaning of age-appropriate care and the development of comprehensive, integrated oncology and palliative care guidelines for AYAs with cancer in South Africa, is necessary in order to acknowledge and address their total pain.

Identiferoai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:uct/oai:localhost:11427/34001
Date27 September 2021
CreatorsSpies, Leana
ContributorsGwyther, Liz, van Jaarsveld, Dalene
PublisherFaculty of Health Sciences, Department of Medicine
Source SetsSouth African National ETD Portal
LanguageEnglish
Detected LanguageEnglish
TypeMaster Thesis, Masters, MPhil
Formatapplication/pdf

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