Service user entrepreneurs and claims to authority – a case study in the mental health area

Näslund, Hilda; Sjöström, Stefan; Markström, Urban

doi:10.1080/13691457.2019.1580249

Cited by 8 publications

(11 citation statements)

References 26 publications

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“…Nevertheless, it needs to be told in a manner which shows that the narrator is in control of their story and emotions (Näslund et al . ). This was also advocated by our participants as they emphasised the importance of distancing themselves from the personal and constructing a clear, coherent account of their lived illness and caring experiences.…”

Section: Discussionmentioning

confidence: 97%

“…Indeed, Näslund et al . () has suggested that people with lived experiences need to learn how to tell stories that convey vulnerability and resonate with listeners on an emotional level. Nevertheless, it needs to be told in a manner which shows that the narrator is in control of their story and emotions (Näslund et al .…”

Section: Discussionmentioning

confidence: 99%

“…Näslund et al . () have suggested that experts by experience need to learn to express their experiences in a way that produces ‘affective intensity, while not spilling over into uncontrolled illness’ (Näslund et al . : 10).…”

Section: Introductionmentioning

confidence: 99%

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Personal perspectives on patient and public involvement – stories about becoming and being an expert by experience

Jones

Pietilä

2020

Sociology Health & Illness

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Patient and public involvement activities bring 'lay participants' and their accounts of lived experiences to the centre of health service development and delivery. For individuals, these accounts can provide an important resource, offering a sense of control and an opportunity to re-frame past events. Furthermore, as involvement activities and the use of personal accounts have become more prominent, it is timely to examine the involvement process from the perspective of the 'lay participants'. Hence, the aim of this study is to explore how people become involved and how they construct the accounts of their lived experience. We analyse the stories of people with lived mental illness or caring experiences, who have become experts by experience (n = 13). We argue that becoming an expert by experience can help to re-contextualise past experiences and support the rediscovery of skills and expertise, leading experts by experience to construct both professionalised and politicised identities. The process has the potential to enforce narratives that portray illness experiences as motivators for social action and change. Additionally, we claim that the stories experts by experience share with health services and the public are not 'lay accounts' or ad hoc tales, but accounts constructed to serve specific purposes.

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Section: Discussionmentioning

confidence: 97%

Section: Discussionmentioning

confidence: 99%

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Personal perspectives on patient and public involvement – stories about becoming and being an expert by experience

Jones

Pietilä

2020

Sociology Health & Illness

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“…MHSUOs are formal non-profit organisations that mobilise service users and family members, and these organisations were established during the late 1960s in the Swedish context of study (Engman 1992). SUEs is an emerging expression within the field (Näslund et al 2019b). Often active on social media, SUEs are individuals with lived experience of mental ill health who have established private businesses that organise their involvement in mental health issues.…”

Section: Introductionmentioning

confidence: 99%

“…Often active on social media, SUEs are individuals with lived experience of mental ill health who have established private businesses that organise their involvement in mental health issues. As social entrepreneurs, their businesses balance goals of moneymaking with strives for social change (Näslund et al 2019b). Experiential knowledge is a vital source of authority for SUEs as well as MHSUOs (Näslund et al 2019a, b).…”

Section: Introductionmentioning

confidence: 99%

Collective Deliberations and Hearts on Fire: Experiential Knowledge Among Entrepreneurs and Organisations in the Mental Health Service User Movement

Näslund

2020

Voluntas

Self Cite

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Previous research has shown that experiential knowledge plays an important role for service user movements and has also discussed ambiguities in the definition of this type of knowledge. This study contributes to clarifying how experiential knowledge is understood within the service user movement. Through semi-structured interviews, it explores how Swedish mental health service user organisations (MHSUOs) and service user entrepreneurs (SUEs) regard the role of experiential knowledge for their endeavours. The study shows that SUEs and MHSUOs view experiential knowledge as complementary to established medical and expert knowledge. Both groups further reflect on the functions of individual and collective dimensions of experiential knowledge. Emotions are important in conveying experiential knowledge, although emotional commitment can be short-lived. The study discusses challenges for SUEs and MHSUOs in developing strategies to manage risks tied to strategic essentialism, and also in maintaining a critical standpoint towards established service providers.

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Representing the ‘Voice’ of Patients: How Third Sector Organisations Conceptualise and Communicate Experiential Knowledge in Health Service Development

2020

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The growing prominence of patient and public involvement in health services has led to the increased use of experiential knowledge alongside medical and professional knowledge bases. Third sector organisations, which position themselves as representatives of collective patient groups, have established channels to communicate experiential knowledge to health services. However, organisations may interpret and communicate experiential knowledge in different ways, and due to a lack of inherent authority, it can be dismissed by health professionals. Thus, drawing on individual interviews with organisation representatives, we explore the definitions and uses of as well as the ‘filters’ placed upon experiential knowledge. The analysis suggests that whilst experiential knowledge is seen as all-encompassing, practical and transformative, the organisations need to engage in actions that can tame experiential knowledge and try to balance between ensuring that the critical and authentic elements of experiential knowledge were not lost whilst retaining a position as collaborators in health care development processes.

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Service user entrepreneurs and claims to authority – a case study in the mental health area

Cited by 8 publications

References 26 publications

Personal perspectives on patient and public involvement – stories about becoming and being an expert by experience

Personal perspectives on patient and public involvement – stories about becoming and being an expert by experience

Collective Deliberations and Hearts on Fire: Experiential Knowledge Among Entrepreneurs and Organisations in the Mental Health Service User Movement

Representing the ‘Voice’ of Patients: How Third Sector Organisations Conceptualise and Communicate Experiential Knowledge in Health Service Development

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