'People who are together with me' : the personal social networks of women living with breast cancer in the lower southern region of Thailand : a dissertation presented in fulfilment of the requirements for the degree of Doctor of Philosophy in Nursing at Massey University, Palmerston North, New Zealand

Abstract

Living with breast cancer is a complex, long, and changeable journey. Due to my personal experiences of breast cancer in my family, and (breast) cancer clubs being promoted in the Thai health policy to support cancer care, this study’s aim was to explore the experiences of the personal social networks of women living with breast cancer in the lower southern region of Thailand. A qualitative collective case study approach was used to purposively examine eleven personal networks, comprising eleven women with a breast cancer diagnosis and their significant network members. Data were collected during eleven months of fieldwork, through interviews, (participatory) observation, and network mapping. Analysis of the longitudinal data revealed that personal social networks were identified as the ‘people who are together with me’. These people were predominantly family and they were held together by family relationships and feelings of ข้อง /Khong/ (the Thai southern dialect that means a combined feeling of ‘attachment’ and ‘concern or worry about’). Throughout the breast cancer journeys in the lower southern region of Thailand, an ongoing interplay between the contextual factors related to the breast cancer disease and its treatment, the health system, and normal life resulted in four unique patterns of living with breast cancer. These were: i) living with mature networks; ii) living with complexities in family circumstances; iii) living with complexities in the management of the breast cancer, and family circumstances; and iv) for some women, having a long-term involvement with a breast cancer club. Through cross case analysis, five core characteristics of networks emerged. These characteristics were the: i) interplay between support, supporters, and relationships; ii) hierarchies of member significance; iii) different degrees of relationships and feelings of ข้อง /Khong/; iv) fluidity of networks; and v) network life cycle. These characteristics were underpinned by criteria related to the disease, relationships, and cultural differences. These study findings have important implications for nursing, especially related to the nursing of people with long-term conditions such as breast cancer. First, personal social networks can form part of the health care team; second, family and family relationships are important and impact on both the women‘s support needs and access to resources; third complexities in clinical management of the disease as well as complexities in family circumstances have a high impact on the support needs and ability of the network to provide the necessary support; fourth, an involvement of non-family members in the core supporter group of a network is a significant sign of difficulties in family support provision; fifth, it is crucial that nurses understand the nature of networks; and sixth, there are considerable individual differences of needs for formal network support (cancer clubs) related to perceptions of needs, preferences for types of support, and barriers to participation. These findings provide an in-depth examination of the women‘s personal social networks, and their functions and actions in providing support for women that extended past coping with their breast cancer and its treatment into also supporting the women to meet their responsibilities within their everyday lives. While most personal social networks were resourceful and supportive, gaps in support emerged over time in some networks. Consideration of personal social networks would enable more opportunities for nurses to individualise care to the social and cultural contexts of women‘s lives and their specific support needs.