Family-Centred Healing At Home: A Samoan Epistemology of Samoan Families' Experiences of Home Dialysis and Home Detention in Aotearoa/New Zealand

Disease management Detention of persons Kidney diseases Home detention Prisoner health Dialysis New Zealand

Home dialysis and home detention are home-based public services increasingly used in Samoan households living in Aotearoa/New Zealand. They are cheaper than institutionally-provided hospital and correctional services and save the government millions of dollars; savings which do not seem to be transferred to the households which switch to home-based services. This thesis considers the role of housing in Samoan families living in Aotearoa/New Zealand, both symbolically and practically. It analyses in depth the way these two different public services are adapted within the home built environment and the effect these have on the lives of Samoan occupants. The quality of housing and built environments are a vital and significant component of home-based services, yet, largely ignored in the literature and state policies as having an effect on the health of occupants. In this qualitative research I used a multiple-case study approach to investigate the housing experiences of five Samoan dialysis patients (n=4) and their carers (n=8); and two Samoan home detainees (n=2) and a sponsor (n=1). Using an iterative approach of the Photovoice method, disposable cameras were used by the participants to produce photographs about their experiences. In consultation with Samoan elders, I also developed an epistemological model of Samoan health and well-being based on the traditional house and descriptions of tides and winds. The participants' photographs and in-depth interviews in the Samoan and English languages were matched to the three stratified areas of the Samoan traditional dwelling: front of house, middle of house and back of house. Key informant interviews with public service officials were also analysed to provide important information about the Wellington Hospital Renal Unit (n=2) and the New Zealand Prison Services of the Corrections Department (n=5). Home-based services, when compared to hospital and prison institutional services, gave the participants many advantages. These included the convenience of being at home, reduced transport and travelling costs, spending more time with family and friends and in some cases participation in vocational and rehabilitation programmes. Samoan culture provided a useful framework for families to respond to the sensitive issues and obligations associated with palliative renal care, death, spirituality, gender arrangements, transplantation, cultural identity and restorative justice. Other unexpected and less favourable outcomes associated with home-dialysis were fuel poverty, lack of indoor storage, minimal spatial heating and issues of waste disposal. Samoan participants expected far more support at home from public authorities than they in fact received and many of them experienced stigmatisation and social isolation. These everyday experiences forced some dialysis patients to give up home-based services and return to hospital services, which are more expensive. For some home detainees, spousal violence and problems with other family members increased because they were confined at home. They also failed to gain access to vocational and rehabilitation programmes. Finally, while there was general agreement by participants that home-based services are a positive and effective way of increasing individuals' independence and freedom, greater improvement of home built environments as well as increased assistance from public authorities is needed so that families can better meet the formal requirements of home dialysis and home detention. The results, recommendations and the photographs produced by the participants were reported directly to the key governmental stakeholders supporting the study.

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