Navigating the social and healthcare sector: experiences and perspectives of ethnic minority family members

Acknowledgements

I’d like to acknowledge my parents who instilled an audacious desire to learn and achieve in me, their continued support throughout my journey has not and is not taken for granted.

Sib, it’ll always be turtle, fin, noggin, you’re my favourite brother.

Thank you Dr Adela Apetroaia, who has been patient, kind and understanding, answering my anxiety filled questions and providing me with the tools to find the right answers.

To the BPP Inclusion and Learning Support team, who gave me the ability to ask for help and to receive help when it was needed, your actions mean more than you could know.

Natosha and Brittany, this year has not been the easiest but your consistence, steadfastness, love, support, advice, compassion and empathy has been the fuel I’ve needed to continue. I am infinitely better for knowing you both.

To the Accountability Group, the jokes, the gifs, the jist, the laughs have been pockets of joy, joy that often I felt was not mine to experience but joy that you provided nonetheless.

DW, it has not and is not an easy journey, what comes next is not known but I will forever love you for the space you created for me to thrive and know that solitude is ok but it’s not a given nor is it a must. Thank you for all you have done, did and do, a partnership with you is one I did not expect but do not regret, strawberries.

And finally, Rob, Rebecca and Edith, thank you for your time, your honesty and your stories. It was the utmost of privileges to hear your words, to be invited to be witness to a sliver of your world.  Your existence makes their existence great, you are all awe-inspiring.

Below, you can find the abstract for the study, and a link to the full article here.

ABSTRACT

Objectives:

There is an abundance of literature on the experiences of individuals with developmental disorders while navigating the social and healthcare sector but there is little literature investigating the experiences of ethnic minority family members/caregivers while navigating the social and healthcare sector.

The aim of the present study was to investigate and understand the lived experiences of ethnic minority family members/caregivers whilst navigating the social and healthcare filling a gap in the research literature.

Methods:

Semi-structured Interviews were conducted with three ethnic minority family members/caregivers of individuals with developmental disorders. Interviews were analysed using Interpretive Phenomenological Analysis (IPA). Analysis revealed five master themes relating to their experiences: barriers to support, inadequate support, onus of care, equality and not equity, and collective culture of support.

Results:

Family members/caregivers reported that several factors impacted their experience of the social and healthcare sector including barriers to support, inadequate support, onus of care, and a principle of equality and not equity. However, a collective culture of support amongst family members/caregivers provided respite and support in their role as caregivers.

Conclusions:

The present study provided an insight into the lived experiences of ethnic minority family members/caregivers navigating the social and healthcare sector leaving room for the topic to be explored further.