Clients' returning for cervical screening results : a focus group study exploring the reasons why women spontaneously return for their results at the Khayelitsha Cervical Cancer Screening Project

Introduction: Cervical cancer is integrally associated with the problems of poverty in the developing world. It is the most common cancer cause of death among women in these regions. In South Africa, the lifetime risk for black African women developing this cancer is 1 in 26. Rates for white women are 1 in 80. Cervical cancer is largely preventable by screening for its precursor stages. However, cervical cancer screening in low-resource settings has only rarely been initiated and sustained. There are many barriers to the establishment of mass, organised screening programmes. This study focuses on one aspect of the screening process: the clients' receivi g of their screening results. For the most part, health providers in resource-poor settings rely on the clients themselves to return to the health service to receive their results and consequent arrangements for further care. Understanding those factors that impact upon clients' returning is therefore crucial to the success of the screening. The Khayelitsha Cervical Cancer Screening Project (KCCSP) was established in 1996 to evaluate alternative screening tests to cytology. In addition, the Project has evaluated alternative screening algorithms to the traditional approach of cytology, colposcopy, biopsy and treatment, specifically, a "screen and treat" approach. This approach is expected to overcome some of the many barriers to women participating in screening programmes. Aims and objectives: This study aims to investigate the phenomenon of the high spontaneous return rate in the setting of the KCCSP. Motivating and deterring factors are sought, both logistical and psychological, in the clients' personal contexts, as well as those related to their experiences of the Project. Design: Exploratory study in the interpretive research paradigm located in a peri-urban informal settlement outside Cape Town, South Africa. Sample: Volunteer sample of women enrolled in the KCCSP returning for their first set of screening results. Un ive rsi ty of Ca pe To wn xii Methods: Four focus groups were conducted in Xhosa, facilitated by a Xhosa-speaking social worker from Khayelitsha who has experience in focus group work. Discussion guidelines were followed. The discussions were tape recorded and later transcribed before being translated into English by the facilitator. Analysis of the data draws on elements of both the grounded theory and the systems theory paradigms. Results: The findings reveal that, for the most part, women present to the KCCSP in order to have general gynaecological problems addressed. Returning for results represents an extension of this need. Obstacles to returning include problems with access to the clinic, the need to care for dependents at home and the competing priorities of housework and generating income. Factors that promote the returning for results are the imperative to understand the cause of, and have treatment for pre-existing gynaecological symptoms which cause high levels of anxiety. Related to this, women are motivated to have confirmed or refuted the diagnosis of a fatal disease, including cancer and HIV. Certain qualities and design features of the KCCSP facilitate women returning fOr their results. These include the perceived superior quality of interpersonal communication between Project staff and clients and the efficient manner in which results are made available to clients. Other promotive or obstructive factors that playa role in cervical screening service utilisation include; client attitudes towards traditional healers, a prevalent fear of hysterectomy, concern about privacy and gossip and a suspicious attitude toward caring health workers. Conclusions: Women enrolled in the KCCSP have a personal health agenda with a different focus to that of the Project. Chronic gynaecological problems are frequently experienced and give rise to levels of anxiety about their being signs of serious pathology. Women have not had these fears or the symptoms adequately addressed at other health services. The need to have these issues properly managed represents a large enough motivating force to overcome many of the practical and psychological obstacles to utilisation of the KCCSP. The Project represents for women a general women's health service. Un ive rsi ty of Ca pe To wn 1 Chapter One Introduction Page 1.1 Cervical cancer in low-resource settings 2 1.1.1 Epidemiology, with particular reference to South Africa 3 1.1.2 Risk factors and pathogenesis 3 1.1.3 Why are poor women in South Africa vulnerable? 4 1.1.4 Cervical screening in low-resource settings 7 1.1.4.1 Cervical screening in developed countries 7 1.1.4.2 Cervical screening in developing countries 8 1.1.4.3 Cervical screening in South Africa 8 1.4.4. 4 Cervical screening in Khayelitsha 9 1.4.4.5 The problems with cytology-based screening 10 1.2 The Khayelitsha Cervical Cancer Screening Project 11 1.3 The research question: Why do so many of the women return spontaneously for their results at the KCCSP? 12 1.4 Motivation for the study 13 Un ive rsi ty of Ca pe To wn 2