Young Carer Perception of Control: Results of a Phenomenology with a Mixed Sample of Young Carers Accessing Support and Unknown to Services

Abstract

Identification challenges have resulted in young carers research largely being conducted with those who access support. Positive and negative impacts have been evidenced but there remains little consideration of the wider population. This phenomenology defines young carers as a spectrum of children with different experiences and aims to study the larger group. Participants were recruited from schools and projects, resulting in a mixed sample of young carers who were accessing support but also those who were unknown to services. Participants attended three interviews that initially gathered data on their caring role and family circumstances, before focusing on their health and well-being in the context of change. All interviews were transcribed and analysed at a whole-text and in-depth level to identify shared understanding. A study of the wider spectrum enabled the emergence of perception of control over their caring responsibilities as key to routine development. Although high levels of control helped some participants manage their roles, threats to control were identified, including instability in the care receiver’s condition, excessive caring and medical tasks. The original findings demonstrate how researching the wider spectrum can aid understanding of problematic care, and highlights the importance of recruiting young carers as a hard-to-reach group.

Voices from the Margins: Aotearoa/New Zealand Young Carers Reflect on Their Experiences

“…. we all help each other in some way, and so if I wasn't having a role in helping [my brother], then I would feel I suppose more disconnected from him and the family' (carer age [15][16][17][18][19][20][21][22][23][24][25]. Conceptualising care as 'natural' was particularly common among Māori, Pacific, and Asian young carers who identified the cultural importance of enacting a collective model of care.…”

“…. That's why I nursed my dad' (carer age [13][14][15][16][17][18][19][20][21][22][23][24][25]. ["Whanaungatanga" refers to a sense of family connection through shared experiences and working together [42].…”

“…While all participants cited supervision or 'watching over' their care recipients as a key care task, supervision was a particularly significant role for young carers whose care recipients had a mental illness or substance misuse. Former young carer Melanie described 'the biggest aspect of caring' for her friend with a mental illness as 'always watching for self-harm or expressing that he wanted to hurt people' (carer age [19][20][21].…”

“…Motivations for young caring include a lack of services for individuals with disabilities and illnesses and their families [13], resistance to services due to disability-related stigma and financial barriers [20], cultural and familial preferences for within-whānau care [18], and young people's desires to undertake care [10]. The hidden or invisible nature of young caring means that identification poses a significant challenge in all parts of the world [7,21].…”

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project

“…Previous research has brought attention to the difficulty of unequivocally stating whether a young person is providing regular and/or substantial care (thus to be considered as a young carer) or not. In this respect, it is more appropriate to consider care activities provided by young individuals in the light of a continuum of care ranging from caring about the person to caring for the person, as opposed to a binary condition (i.e., being a young carer or not) [ 21 , 22 ].…”