With more than 430,000 carers in Aotearoa New Zealand, many people find themselves in this position unexpectedly. Yet the experience of caring is not the same for everyone.
For younger carers (aged 15-24), very little is known about their experiences. Dr Ofa Dewes, Principal Investigator and research fellow at the University of Auckland, understood that Pacific people represent 7% of Aotearoa New Zealand’s carer population with a younger average age than the general carer population and was prompted to pursue this further.
In the Phase 1 project, Tāpinga ‘a Maama: Pacific Life and Death in Advanced Age, caring for older adults at end of life, the emergent theme that stood out was that of intergenerational family caring. From this, Ageing Well funded the Phase 2 study, Building connections as we age: from younger carers to societies, as an opportunity to better understand the needs of younger Pacific family carers, and how to make visible the valuable contributions of ‘invisible’ carers to society.
The following table presents the percentage of Pacific Peoples providing unpaid care to a household member with a disability or illness, as reported in the 2013 Census.
The Ministry for Social Development Carers’ Strategy Action Plan 2019-2023 identified an urgent need for information regarding younger Pacific carers’ experiences and the current provision of support and services for them. Such information is crucial to ensure that services and social supports meet the needs of the carers and their families.
The Building Connections study responds directly to the Action Plan to give voice and visibility to an invisible workforce in Pacific families and communities. It also seeks to deliver equitable health and wellbeing outcomes that impact education, employment, social support and health services, as well as culturally-centred Pacific approaches to support ageing well in place for younger family carers and the older adults they help to care for at home.
Ageing Well funded this study as an opportunity to better understand the needs of younger Pacific family carers, and how to make visible the valuable contributions of ‘invisible’ carers to society.
The research team believed that the significant health and wellbeing challenges among Pacific Peoples may be addressed by an improved understanding of how to enhance the communities’ strengths and resilience. For Pacific, the elements of ageing well in body, mind, and spirit are intricately woven to support strong healthy individuals, families, and communities.
Preliminary findings presented at the ‘Måür lelei: Health and Wellbeing Together’ Inaugural Pacific Peoples Fono in the Community, in 2021, highlighted a range of lived experiences among younger family who were caring for an older family member at home. Several were managing their caregiving responsibilties with school or tertiary studies and others were employed in either part-time or full-time work. Those who were caring full-time had to sacrifice employment or educational opportunities in order to perform their duties.
The challenges reported included struggles with the physical side of caring. Others experienced challenges with their own mental health. A lack of knowledge of available supports, issues of eligibility and a reluctance to ask for help sometimes compounded the impacts of the role. Lockdown restrictions as a result of COVID-19 had impacted many of the study’s participants and their families, with increased social isolation and restriction of services causing additional burdens.
Despite experiencing numerous challenges, younger carers engaged in a number of coping strategies such as spending time with friends and family, engaging with hobbies and outdoor activities, and generally looking after their wellbeing. Many had a strong belief in their duty to provide care which provided further support to their role, and in the case of a small number of carers, their spiritual beliefs played a role in helping them cope.
Recommendations from the participants in the study included the provision of benefits and recognition of their caring role, ongoing education and training, improving the delivery of information, and reviewing assistance eligibility criteria. In relation to healthcare, participants recommended that currently available services (such as home care) be augmented and improved, and that there be greater local community support and outreach to younger carers and their families.
They also ascertained the need for culturally-appropriate services to advocate for family carers and ensure their needs and that of the families they are caring for are met. A gap in the sharing of valuable knowledge in the experiences of family carers has led to the development of a new service initiative, in consultation with a participant in the Phase 1 project, and a community partner in the Phase 2 project, Tongan Health Society.
The service initiative, Tui moe Amanaki, was piloted for six months in 2021 and after considering the evaluation results, the Society endorsed the service as part of its work programme. The service has since expanded to include a carers network which was launched in February 2022. Tui moe Amanaki is focused on achieving better health and wellbeing outcomes for carers and their families, health equity, integrated health care and social support, and carer-centred approaches to support ageing in place.
The participants also ascertained the need for culturally-appropriate services to advocate for family carers and ensure their needs and that of the families they are caring for are met. A gap in the sharing of valuable knowledge in the experiences of family carers has led to the development of a new service initiative.
The Building Connections project tackles the challenging issues of ageing well by placing younger carers of older family members in the front and centre line to meet the challenges of a changing demographic. Successful health and wellbeing outcomes for younger carers can be achieved through the integration of education, employment, and social care alongside a fundamental change in our health systems and the political will at all levels to tackle the challenges of an ageing population.
Early indications of the project’s findings reveal that our ‘invisible’ carers are finally being seen and heard.