Who Cares About Us? The Hidden Population of Current and Former Aotearoa/New Zealand Young Carers Reflect on Their Experiences

Abstract

New Zealand [NZ] young carers are an invisible and disadvantaged population of children, youth, and young adults aged 25 years and under providing significant, ongoing care for a family member with a disability, illness, mental illness, substance misuse, or who is elderly. There are an estimated 40,000 NZ young carers aged 15-24 (Ministry of Social Development, 2019), however, this statistic does not include the many more possible young carers younger than these age parameters. In the United Kingdom and Australia, findings suggest that young carers are a hidden population facing adverse educational, vocational, and health outcomes (Becker & Sempik, 2019). The seven published studies in NZ recommend further research, policies, and services for young carers. This thesis addresses these gaps by examining the experiences and needs of NZ young carers, accessing their voices in order to contribute to our understandings of their roles and provide relevant information that could inform legislation. Due to the challenges of recruiting a hidden population, an innovative sampling method was used, in which I shared via social media a 5-minute video outlining my own experience as a young carer, and the aim of the research. Consequently, the thesis features the largest-known cohort of self-identified NZ current and former young carers (11 aged 25 and under, 17 aged <26). The research is framed by Bronfenbrenner’s (2005) Bioecological Systems Theory and employed a phenomenographic methodology to explore young carers’ conceptions of their roles. Young caring was found to be a natural and valued part of growing up in Aotearoa/NZ, embedded within a collective family/whānau/aiga effort to support a loved one’s holistic wellbeing. However, young carers’ unaddressed nonfinite loss, alongside shortcomings in societal, institutional, and political support for people with disabilities and illnesses, their informal carers, and their family/whānau/aiga, results in the nature of care becoming overwhelming, with young carers experiencing negative educational, social, vocational, and health outcomes. As such, the thesis argues that policies and services must be targeted towards the factors underlying the overwhelming nature of young caring roles, rather than simply addressing the existence of young caring itself. This exploratory thesis opens up the conversation about young caring in Aotearoa/NZ, and both offers and begins to address possible pathways to address identified persistent gaps in the policy and services landscape, based on young carers’ own expressed needs.