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Informality, advocacy and the sharing of lived experience in peer support work

Published online by Cambridge University Press:  02 March 2023

Philip John Archard*
Affiliation:
Child and Adolescent Mental Health Service, Leicestershire Partnership NHS Trust, Leicestershire, UK Honorary Associate Professor, University of Leicester, Leicester, UK
Michelle O’Reilly
Affiliation:
Associate Professor of Communication in Mental Health, University of Leicester, Leicester, UK Research Consultant, Leicestershire Partnership NHS Trust, Leicestershire, UK
Teresa Spilsbury
Affiliation:
Community Development Leader, Leicestershire Partnership NHS Trust, Leicestershire, UK
Alvina Ali
Affiliation:
Child and Adolescent Mental Health Service, Leicestershire Partnership NHS Trust, Leicestershire, UK
Leanne Kulik
Affiliation:
Child and Adolescent Mental Health Service, Leicestershire Partnership NHS Trust, Leicestershire, UK
Praful Solanki
Affiliation:
Child and Adolescent Mental Health Service, Leicestershire Partnership NHS Trust, Leicestershire, UK
*
*Address for correspondence: Dr Philip Archard, Westcotes House, Leicestershire Partnership NHS Trust, Westcotes Drive, Leicester, LE3 0QU England. Tel: +44 (0)116 295 2998. (Email: philip.archard@nhs.net)
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Abstract

Type
Letter to the Editor
Copyright
© The Author(s), 2023. Published by Cambridge University Press on behalf of The College of Psychiatrists of Ireland

The nature and value of the peer support work role in mental health care continues to be subject to debate and empirical enquiry. In these discussions, key concerns include measuring the value and effectiveness of peer support input, mechanisms underpinning beneficial support, and barriers to embedding peer support in mental health services (Vandewalle et al. Reference Vandewalle, Debyser, Beeckman, Vandecasteele, Van Hecke and Verhaeghe2016; Bellamy et al. Reference Bellamy, Schmutte and Davidson2017).

In a letter recently published in the journal, Norton (Reference Norton2022) represents the creation of informality as essential to peer support. Norton describes this as arising ‘within peer support relationships where hierarchical barriers are broken down to the point that the service user can clearly identify the PrSW [peer support worker] as an equal counter-part in recovery’. For Norton, informality is created via everyday assistance taking place in ordinary rather than institutional (i.e., hierarchical) environments and purposeful supportive relationships where lived experiences can be meaningfully shared.

Norton’s conceptualization of informality in peer support work is in the context of Irish adult mental health services, but his reflections are arguably translatable to other settings where this aspect of the work is also important. We were interested to read this perspective due to our own involvement in supporting the development of a peer support work role in a specialist child and adolescent mental health service (CAMHS) team in England, a care context where the uptake of peer support delivery and principles of co-production has tended to be slower (see, e.g., Lambert et al. Reference Lambert, Matharoo, Watson and Oldknow2014; Norton, Reference Norton2021).

The peer support worker role in the team was one of several amongst the first cadre of peer support workers introduced in the wider National Health Service Trust. Over time, different role responsibilities have been established to respond to the needs of the service user group, in this case, children and young people from specific populations vulnerable to a high level of mental health need. While there are shared responsibilities with other clinical and para-clinical roles, the peer support work role has a distinct emphasis on promoting children and young people’s participation.

Developing the role, our experience has been that the support can be viewed as involving the cultivation of spaces for informality, along the lines Norton sets out. However, also important is seeking means for advocacy and formal influence to help service provision become more user orientated. For example, informality and work towards young people having a more formal influence are combined in the way the peer support worker works with a local youth advisory board. The board brings together young people under the care of the CAMHS with representatives from the local youth council to help shape health and wellbeing services in the locality. The peer support worker’s function with the board is to engage these young people via informal means, i.e., by visiting and talking with them at home or in the community, then to help them to plan their involvement and become acquainted with the forum and the influence this involves. The peer support worker also works alongside other board members to ensure that the involvement of young people recruited via CAMHS is meaningful and that their voices are heard as part of the forum.

Another example of the combination of informality and work towards young people having a more formal influence has been the peer support worker’s involvement with an evaluation addressing stakeholders’ views of care delivery during the COVID-19 pandemic. For the evaluation, the informality of interviews with young people appeared to help in capturing more candid accounts of the experience of accessing CAMHS care and treatment at this time. However, commonalities in these accounts were then formally reported via presentations to commissioners and senior management, informing decision making about care pathway planning and service policy (see Archard et al. Reference Archard, Kulik, Fitzpatrick, Awhangansi, Moore, Giles, Morris and O’Reilly2022).

With respect to the provision of direct in-person support and the sharing of lived experience, the peer support worker’s assistance to children and young people is a flexible proposition, involving everyday activities away from the clinic. Compared to what others report (Dyble et al. Reference Dyble, Tickle and Collinson2014, Janoušková et al. Reference Janoušková, Vlčková, Harcuba, Klučková, Motlová and Bankovská Motlová2022), we have found that the disclosure of lived experience regarding mental health has not featured in this support that much (or at least as much as we initially anticipated it might). Developmental considerations have played a role in this, i.e., in terms of what is relevant to share with a child or young person according to their chronological age, best interests, and expressed wishes. All the same, the peer support worker introducing themselves as a peer at a different stage of their recovery journey has generally seemed to suffice without any need to reveal further personal information regarding their lived experience of mental ill health or accessing care. Stating this is not to deny that the peer support worker is a long way from an imagined ideal of the neutral mental health professional. The sharing of lived experience is a means of seeking common ground with service users and does not have to be limited to mental health; it can also include the disclosure of personal values and views, as Norton and others (e.g., Bailie Reference Bailie2015) acknowledge.

Financial support

The work reported received no specific grant from any funding agency, commercial, or not-for-profit sectors.

Conflicts of interest

The authors have no conflicts of interest to disclose.

Ethical standards

The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committee on human experimentation with the Helsinki Declaration of 1975, as revised in 2008.

References

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