This research describes the experiences of elderly Pacific caregivers caring for young people with a chronic illness or disability, and what they need to support their health and well-being in their role as caregiver.
It is an exploratory, qualitative study, focusing on ‘informal caregivers’. Data was collected through focus groups and interviews with 24 elderly Pacific people across several ethnic groups. The children cared for varied in age from 12 months to 18 years and had conditions ranging from bronchitis and severe asthma, to autism, epilepsy and cerebral palsy.
The report discusses the following themes:
- The resiliency of elderly Pacific carers
- The contribution of poverty and poor housing to difficulties faced by the carers
- The impact of the caring role on the carer's own health Levels of carers' health knowledge
- Issues with access to information and services
- The role of traditional beliefs and treatment
- Emotional dissonance
- The role of spirituality
The National Health Committee would like to thank all of the participants in this study for their stories and the research team at Vaka Tautua (particularly Dr Siale Alo' Foliaki) for the excellent work carried out to make this such a valuable report for the Committee. This report is part of a wider project the National Health Committee is undertaking about how supports and services should be provided for informal carers.
The results of this qualitative study indicate that elderly Pacific caregivers are an extremely vulnerable group of people for many inter-related reasons. The level of vulnerability they experience poses risks both for the caregivers and for the vulnerable children they look after, and creates a moral imperative for urgent action. The problems are not insurmountable but require a co-ordinated response from both Crown agencies and the Pacific community. The major findings follow.
- Elderly Pacific caregivers demonstrate a high degree of resiliency, which is grounded in their spirituality and Christian faith, in the face of many difficult and challenging circumstances.
- Poverty is the single most difficult issue faced by elderly Pacific caregivers. Pacific peoples aged 65 and over have the lowest median income of any group in New Zealand. Yet elderly Pacific caregivers face significant additional costs as a result of caring for children or young people with a chronic illness or disability.
- Poor quality housing is a direct result of poverty. Unstable housing arrangements make a vulnerable segment of the population even more vulnerable as important relationships and networks are lost if they and the children they care for are forced to move. Elderly caregivers who live in homes provided by Housing New Zealand Corporation (HNZC) are often in a better situation than those who rent privately.
- Elderly Pacific caregivers experience significant health problems both physical and psychological. The conundrum they face is that resource limitations and cultural factors ensure that the health and wellbeing of the children takes precedence. In most cases the health of elderly Pacific caregivers involved in the study was being negatively compromised by taking on the role of providing care for sick or disabled children or young people.
- Elderly Pacific caregivers experience a high level of social isolation as a result of having to remain available to the child or young person in their care. Social isolation is a significant risk factor to both psychological and physical wellbeing. Traditionally held beliefs about illness causation in the wider Pacific community.
- The children and young people in the custody of elderly Pacific caregivers have complex medical problems. Important information, knowledge and understanding of the medical conditions by most of the elderly caregivers is very poor, jeopardising the long-term health outcomes for the children in their care.
- Elderly Pacific caregivers demonstrate a high level of confusion as to the specific roles of individual health and social service professionals and agencies.
- Elderly Pacific caregivers demonstrate access problems to health and social services and appear not to be aware of entitlements they may be eligible for.
- Elderly Pacific caregivers’ access to important health information is poor and they often adopt a literal approach to actioning whatever information they are given.
- Elderly Pacific caregivers experience a heightened degree of fear and anxiety as a result of lack of understanding, knowledge and professional support surrounding the complex medical problems experienced by the children and young people they are responsible for.
- Elderly Pacific caregivers have strong traditional beliefs that affect health choices which may impact on the care given to children or young people they are responsible for.