A report by Lived Experience Australia from a research project to better understand experiences of loneliness
for those with lived/living experience of mental ill-health and their carers, families, and whānau.
Background to our Study
Lived Experience Australia (LEA), in collaboration with the Royal Australian and New Zealand College of Psychiatrists (RANZCP) Community Collaboration Committee (CCC), commenced this research project to better understand loneliness and its effects, particularly in relation to mental health, physical health, families, and wellbeing. It was important to us to understand what supports people felt may help overcome their loneliness.
322 people from across Australia and New Zealand undertook our survey between 16 May and 27 June, 2022.
The responses we received to our questions about loneliness were profoundly generous, showed a depth of reflection, openness and vulnerability, and huge heart. People shared their most private and personal thoughts. Some spoke as though they were talking directly to us through their responses, while some seemed to want to offer messages of support and hope to others who may be experiencing similar things.
One of our fears in undertaking this survey was that while people were sharing openly about their experiences, we didn't want them to feel any more trauma.
We sincerely hope that this did not occur, and we are reassured by comments made by participants, like this one:
This survey is also a segment of a really important conversation.
It feels good to be real with you all right now (whoever that may be).
A word of gratitude
to our wonderful contributors
To honour the generosity of our respondents, we wanted to be able to include all of the comments we received. They were all worthy of being included. Unfortunately, due to the large volume, we were not able to do this.
If you undertook our survey and are reading our report and can't find your contribution, please know that you were heard. We read every single word of every response that was gifted to us. We hope we have done justice to your experiences of loneliness, and that others reading this report will gain insights, understanding, and inspiration from what you have shared with us.
We thank you, and will continue to advocate for you in any way we are able.
What Loneliness Means
The people who responded to this survey shared many thoughts about loneliness and what to do about it.
Overall, they emphasised that:
Loneliness is a deeply personal experience, within the person and how they see themselves, and as they look out to the world around them and view their place within it.
Loneliness is hard and hidden, yet common. It’s a social problem, not an individual one of being alone. It’s harmful and shares space with stigma, discrimination, and shame.
That it's not that I'm not interested in others or think about others.It's also not that I'm lazy or uninterested in life and events.
I want to do more, to be useful, it often just seems too overwhelming.
- Consumer -
Loneliness, physical health and mental health are very interconnected, more than is realised.
When I feel lonely, my mental health is poorer, and I am more likely to feel depressed, irritated, and want to withdraw further.
I don't feel like putting in effort and therefore eating well and exercising also devolves.
- Carer -
Loneliness can lead to family strain, conflict, silencing and withdrawal; family members can become closer or move further apart to cope.
Loneliness doesn't only affect the person, it means that everyone in the family struggles.
My family is divided between those who 'understand' and those who don't, about living as a single person with issues.
Those who don't have no idea of how hard I work to be the best I can.
- Consumer -
Loneliness is alleviated by striving to build self-care and self-worth, and by nurturing a sense of meaning and purpose. Routinely connecting with other ‘humans’, nature, and pets was emphasised.
What can be done to alleviate loneliness
By communities
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Build greater acceptance and inclusion in the community.
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Improve understanding and education about loneliness.
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Tackling stigma and discrimination about mental illness.
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Create more community spaces that promote meaningful connections with others.
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Nurture relationships that help people feel safety and trust and membership of the community.
By mental health professionals
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Listen, ask about loneliness, and validate the person’s experiences of loneliness. This builds the person’s sense of trust and hope and helps them to address self-stigma and low self-worth associated with loneliness.
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Recognise that talking about loneliness may be difficult.
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Help people to develop confidence and practical skills to overcome loneliness.
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Use more humanistic and holistic approaches to care.
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Be compassionate, non-judgmental, and instill hope.
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Consider lived experience peer support options.
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Understand what supports are available and provide tangible support to help people to connect with them.
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Be aware of professional privilege and address power imbalance in interactions and shared environments of care to ensure safety, trust, and trauma-informed contact.
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Don’t rely on medications alone to fix everything.
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Involve families, carers and whānau where possible and agreed by the person.
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Provide whole-of-family psychoeducation and support options, see the person in the context of their family, community and whānau.
Use this research in supporting those living with mental ill-health
Those living with or having lived with loneliness in their mental health experience are the ones we should be listening to when it comes to how we can support them - they are the experts in their own circumstances.
Here is the perfect way to tune in to the feedback provided by mental health consumers and carers living with loneliness, to consider the trauma, challenges, and even victories of those who participated in our study.
We asked them how communities and mental health professionals can make a difference. This is your opportunity to gain valuable insights into how you can reduce the impacts of loneliness.
Lived Experience Australia makes this report freely available to any and all who want to learn about and improve the lives of those with a lived or living experience of mental ill-health.
You can download your preferred version below.
Feedback from the early release of this report:
"Thanks for sharing! I have so much to do today and am struggling to stop reading it!! Congratulations – such an under studied and under addressed need."
Nicola Hancock | Associate Professor, Mental Health Stream Lead, Centre for Disability Research and Policy (CDRP), University of Sydney
Acknowledgement
We wish to acknowledge the many people with mental health lived experience as a consumer, family carer and whanau who participated in this project. We feel enormously privileged by the courage, trust and integrity you showed towards us in sharing your experiences of loneliness.
We also acknowledge the generous contributions of the members of the RANZCP Community Collaboration Committee (CCC) subcommittee who collaborated with us on the development of the loneliness survey reported here: De Backman-Hoyle, Simon Stafrace, Eileen Lavranos, Bronte Jeffries, Simon Byrne, and Sharon Lawn.
We also wish to note that reports like this that provide a lived experience perspective are rare and are often not funded. Lived Experience Australia was not directly funded to complete this research. This project was undertaken as part of our collaboration with the RANZCP which provides a small donation to support the activities of our lived experience systemic advocacy organisation.
This project was undertaken because of our determination to explore loneliness and mental health from a lived experience perspective, address gaps in existing understanding and evidence of loneliness, to use this information in our ongoing advocacy, and to inform and improve the RANZCP Education and Continuing Professional Development programs.
For Further Information
For media interviews, or to discuss how this report can be used in mental health or community settings, please contact the report authors:
Ms Christine Kaine