Families supporting people with mental health challenges during the COVID-19 pandemic: learnings from a co-designed and co-delivered study

Authors:
Caroline Walters Monash University, Australia

Search for other papers by Caroline Walters in
Current site
Google Scholar
Close
,
Hayley Solich Mental Health Australia, Australia

Search for other papers by Hayley Solich in
Current site
Google Scholar
Close
,
Sharon Lawn Lived Experience Australia and Flinders University, Australia

Search for other papers by Sharon Lawn in
Current site
Google Scholar
Close
,
Eileen McDonald National Mental Health Consumer & Carer Forum, Australia

Search for other papers by Eileen McDonald in
Current site
Google Scholar
Close
, and
Melissa Petrakis Monash University, Australia

Search for other papers by Melissa Petrakis in
Current site
Google Scholar
Close
Restricted access
Get eTOC alerts
Rights and permissions Cite this article

The significant demand for and reduction in mental health services during the COVID-19 pandemic resulted in family carers providing higher levels and increased hours of support of increased complexity. Guided conversations within seven co-designed online focus groups with 73 family carers, representing diverse communities and ages, explored the experiences of and desired changes for mental health service provision. Six themes emerged: service users’ experiences; the effects of system failures and service provisions; the impact on carers’ health and well-being; unmet community needs; responsive innovations; and policy and practice recommendations. Co-producing research with families elevated family voices and supported carers in expressing their experiences, needs and rights.

  • Aass, L., Skundberg-Kletthagen, H., Schroder, A. and Moen, O. (2021) It’s not a race, it’s a marathon! Families living with a young adult suffering from mental illness, Issues in Mental Health Nursing, 42(1): 1523.

    • Search Google Scholar
    • Export Citation
  • Ali, D., O’Brien, S., Hull, L., Kenny, L. and Mandy, W. (2023) ‘The key to this is not so much the technology. It’s the individual who is using the technology’: perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic, Autism, 27(2): 55264. doi: 10.1177/13623613221108010

    • Search Google Scholar
    • Export Citation
  • Anderson, S., Parmar, J., L’Heureux, T., Dobbs, B., Charles, L. and Tian, P.G.J. (2022) Family caregiving during the COVID-19 pandemic in Canada: a mediation analysis, International Journal of Environmental Research and Public Health, 19(14): 8636. doi: 10.3390/ijerph19148636

    • Search Google Scholar
    • Export Citation
  • Askey, R., Holmshaw, J., Gamble, C. and Gray, R. (2009) What do carers of people with psychosis need from mental health services? Exploring the views of carers, service users and professionals, Journal of Family Therapy, 31(3): 31031. doi: 10.1111/j.1467-6427.2009.00470.x

    • Search Google Scholar
    • Export Citation
  • Australian Bureau of Statistics (2020) Psychosocial disability, www.abs.gov.au/articles/psychosocial-disability.

  • Bailey, C., Guo, P., MacArtney, J., Finucane, A., Swan, S., Meade, R. and Wagstaff, E. (2022) The experiences of informal carers during the COVID-19 pandemic: a qualitative systematic review, International Journal of Environmental Research and Public Health, 19(20): 13455. doi: 10.3390/ijerph192013455

    • Search Google Scholar
    • Export Citation
  • Bhome, R., Huntley, J., Dalton-Locke, C., San Juan, N.V., Oram, S., Foye, U. and Livingston, G. (2021) Impact of the COVID-19 pandemic on older adults mental health services: a mixed methods study, International Journal of Geriatric Psychiatry, 36(11): 174858. doi: 10.1002/gps.5596

    • Search Google Scholar
    • Export Citation
  • Braun, V. and Clarke, V. (2006) Using thematic analysis in psychology, Qualitative Research in Psychology, 3(2): 77101. doi: 10.1191/1478088706qp063oa

    • Search Google Scholar
    • Export Citation
  • Braun, V. and Clarke, V. (2022) Conceptual and design thinking for thematic analysis, Qualitative Psychology, 9(1): 326. doi: 10.1037/qup0000196

    • Search Google Scholar
    • Export Citation
  • Bu, F., Mak, H.W. and Fancourt, D. (2021) Rates and predictors of uptake of mental health support during the COVID-19 pandemic: an analysis of 26,720 adults in the UK in lockdown, Social Psychiatry and Psychiatric Epidemiology, 56(12): 228797. doi: 10.1007/s00127-021-02105-w

    • Search Google Scholar
    • Export Citation
  • Czeisler, M.E., Drane, A., Winnay, S.S., Capodilupo, E.R., Czeisler, C.A., Rajaratnam, S.M. and Howard, M.E. (2021) Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: relationships to age, race/ethnicity, employment, and caregiver intensity, Journal of Affective Disorders, 295: 125968. doi: 10.1016/j.jad.2021.08.130

    • Search Google Scholar
    • Export Citation
  • Devotta, K., Woodhall-Melnik, J., Pedersen, C., Wendaferew, A., Dowbor, T.P., Guilcher, S.J., Hamilton-Wright, S., Ferentzy, P., Hwang, S.W. and Matheson, F.I. (2016) Enriching qualitative research by engaging peer interviewers: a case study, Qualitative Research, 16(6): 66180. doi: 10.1177/1468794115626244

    • Search Google Scholar
    • Export Citation
  • Diminic, S., Hielscher, E., Lee, Y., Harris, M., Schess, J., Kealton, J. and Whiteford, H. (2016) The Economic Value of Informal Mental Health Caring in Australia: Summary Report, Brisbane: The University of Queensland.

    • Search Google Scholar
    • Export Citation
  • Eckardt, J.P. (2020) Caregivers of people with severe mental illness in the COVID-19 pandemic, The Lancet. Psychiatry, 7(8): e53. doi: 10.1016/S2215-0366(20)30252-2

    • Search Google Scholar
    • Export Citation
  • Embrace Multicultural Mental Health (2023) Home page, https://embracementalhealth.org.au/.

  • Fitzgerald, J. (2006) Lobbying in Australia: You Can’t Expect Anything to Change if You Don’t Speak Up!, Kenthurst: Rosenberg Publishing.

    • Search Google Scholar
    • Export Citation
  • Jagosh, J., Pluye, P., Macaulay, A.C., Salsberg, J., Henderson, J., Sirett, E., Bush, P.L., Seller, R., Wong, G. and Greenhalgh, T. (2011) Assessing the outcomes of participatory research: protocol for identifying, selecting, appraising and synthesizing the literature for realist review, Implementation Science, 6(1): 18. doi: 10.1186/1748-5908-6-1

    • Search Google Scholar
    • Export Citation
  • Lafferty, A., Phillips, D., Dowling-Hetherington, L., Fahy, M., Moloney, B., Duffy, C., Paul, G., Fealy, G. and Kroll, T. (2022) Colliding worlds: family carers’ experiences of balancing work and care in Ireland during the COVID-19 pandemic, Health and Social Care in Community, 30(3): 113342. doi: 10.1111/hsc.13365

    • Search Google Scholar
    • Export Citation
  • Maunder, K. and McNicholas, F. (2021) Exploring carer burden amongst those caring for a child or adolescent with an eating disorder during COVID-19, Journal of Eating Disorders, 9: 18. doi: 10.1186/s40337-020-00356-7

    • Search Google Scholar
    • Export Citation
  • Mental Health Commission of Canada (2023) Sharing your story safely, https://mentalhealthcommission.ca/resource/sharing-your-story-safely/.

  • Mork, E., Aminoff, S.R., Barrett, E.A., Simonsen, C., Hegelstad, W.V., Lagerberg, T.V., Melle, I. and Romm, K.L. (2022) COVID-19 lockdown – who cares? The first lockdown from the perspective of relatives of people with severe mental illness, BMC Public Health, 22(1): 112. doi: 10.1186/s12889-021-12274-7

    • Search Google Scholar
    • Export Citation
  • Morrison, P. and Stomski, N.J. (2019) Australian mental health caregiver burden: a smallest space analysis, BMJ Open, 9(6): e022419. doi: 10.1136/bmjopen-2018-022419

    • Search Google Scholar
    • Export Citation
  • Nakanishi, M., Richards, M., Stanyon, D., Yamasaki, S., Endo, K., Sakai, M., Yoshii, H. and Nishida, A. (2022) Adolescent carers’ psychological symptoms and mental well-being during the COVID-19 pandemic: longitudinal study using data from the UK Millennium Cohort Study, Journal of Adolescent Health, 70(6): 87784. doi: 10.1016/j.jadohealth.2022.01.228

    • Search Google Scholar
    • Export Citation
  • Naughton-Doe, R., Moran, N., Wakeman, E., Wilberforce, M., Bennett, L. and Webber, M. (2022) Interventions that support unpaid carers of adult mental health inpatients: a scoping review, Journal of Mental Health. doi: 10.1080/09638237.2022.2069702

    • Search Google Scholar
    • Export Citation
  • Onwumere, J., et al (2021) COVID-19 and UK family carers: policy implications, The Lancet. Psychiatry, 8(10): 92936. doi: 10.1016/S2215-0366(21)00206-6

    • Search Google Scholar
    • Export Citation
  • Petrakis, M. and Walters, C. (2022) Mental Health Family Carer Experiences of COVID-19 in Australia: Final Report for the National Mental Health Commission, Melbourne: SWITCH Research Group, Monash University.

    • Search Google Scholar
    • Export Citation
  • Samad, L., Teague, B., Moreira, K., Bagge, S., Khalifa, E. and Wilson, J. (2021) Remotely connected: patient and clinician video care experiences in secondary mental health services during COVID-19, including future preferences, British Journal of Psychiatry Open, 7(S1): S489.

    • Search Google Scholar
    • Export Citation
  • Sin, J., Elkes, J., Batchelor, R., Henderson, C., Gillard, S., Woodham, L., Chen, T., Aden, A. and Cornelius, V. (2021) Mental health and caregiving experiences of family carers supporting people with psychosis, Epidemiology and Psychiatric Sciences, 30: e3.

    • Search Google Scholar
    • Export Citation
  • Van Orden, K.A. (2023) Suicide risk in caregivers, International Psychogeriatrics, 35(12): 6957. doi: 10.1017/s1041610223000777

  • Walters, C. and Petrakis, M. (2022) A systematic mapping review of family perspectives about received mental health interventions, Research on Social Work Practice, 32(1): 6172. doi: 10.1177/10497315211010950

    • Search Google Scholar
    • Export Citation
  • Walters, C. and Petrakis, M. (2023) Mental health family carer experiences during COVID-19: a rapid scoping review of the international literature, The British Journal of Social Work, 53(3): 1483505. doi: 10.1093/bjsw/bcac242

    • Search Google Scholar
    • Export Citation
  • Walters, C., Lambert, C., Pankhurst, J., Irving, S., Alvarez, A. and Petrakis, M. (2023) Improving family social and mental wellbeing in the COVID-19 pandemic and beyond: the case for deep listening, Asia Pacific Journal of Social Work and Development. doi: 10.1080/02185385.2023.2175717

    • Search Google Scholar
    • Export Citation
  • Wyder, M., Barratt, J., Jonas, R. and Bland, R. (2022) Relational recovery for mental health carers and family: relationships, complexity and possibilities, The British Journal of Social Work, 52(3): 132540. doi: 10.1093/bjsw/bcab149

    • Search Google Scholar
    • Export Citation
Caroline Walters Monash University, Australia

Search for other papers by Caroline Walters in
Current site
Google Scholar
Close
,
Hayley Solich Mental Health Australia, Australia

Search for other papers by Hayley Solich in
Current site
Google Scholar
Close
,
Sharon Lawn Lived Experience Australia and Flinders University, Australia

Search for other papers by Sharon Lawn in
Current site
Google Scholar
Close
,
Eileen McDonald National Mental Health Consumer & Carer Forum, Australia

Search for other papers by Eileen McDonald in
Current site
Google Scholar
Close
, and
Melissa Petrakis Monash University, Australia

Search for other papers by Melissa Petrakis in
Current site
Google Scholar
Close

Content Metrics

May 2022 onwards Past Year Past 30 Days
Abstract Views 104 104 104
Full Text Views 26 26 26
PDF Downloads 19 19 19

Altmetrics

Dimensions