Ask Me - I'm Here Too : A Research and Evaluation Project into the Lived Experiences of Young Carers Providing Care for Siblings with a Long-term Illness or Disability

Miller, Emma (2021) Ask Me - I'm Here Too : A Research and Evaluation Project into the Lived Experiences of Young Carers Providing Care for Siblings with a Long-term Illness or Disability. Edinburgh Young Carers, Edinburgh.

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Abstract

This short-term research and evaluation project (Oct 2020 – Mar 2021) was commissioned by Edinburgh Young Carers (EYC) and funded by The Listening Fund in Scotland to explore the lived experiences, specific support needs and outcomes of sibling young carers (SYCs). Recognising the growing number of referrals for young carers providing care for siblings and the limited research evidence on sibling young carers, EYC applied for and was granted funding for a two-year long pilot programme of support and research. This evaluation is intended to ensure the best support is available within EYC, whilst also informing other support agencies and contributing to the development of policy around sibling young carers. In a recent overview of possible future directions for young carers research, Joseph, et al., 2019 recommended more participatory and action-led research to provide greater insights into the lived experiences of young people, their needs and how these can be met. From project inception through to evaluation, this research involved active participation from the young carers and young adult carers, including them as experts in the project, shaping its direction. The methods are discussed in Appendix One. The evaluation project was undertaken during the second six-month period after COVID-19 emerged, which included a Scotland-wide lockdown. All respondents identified ways in which the pandemic affected them, which we consider in this report. Given the collective trauma presented by COVID-19 on top of existing significant issues faced by SYCs, one of the key recommendations of this project is the need to apply a trauma-informed lens to future service developments, as recovery for individuals, families and staff will continue to require care, responsiveness and kindness.