Ethical Dilemmas of Participation of Service Users with Serious Mental Illness: A Thematic Synthesis

Heerings, Marjolijn; Bovenkamp, Hester van de; Cardol, M.; Bal, Roland

doi:10.1080/01612840.2019.1667459

Cited by 6 publications

(13 citation statements)

References 45 publications

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“…For example, autonomy as a core value of social work is defined by some as fostering service user choice and minimising dependence (Furlong 2003;Munson 2020), while others see it as a relational concept and emphasise interdependence (Heidenreich et al 2018;Juhila et al 2021). These different conceptions of autonomy give rise to various, sometimes conflicting, practices (Heerings et al 2020). Moreover, organisational procedures also embed conceptions of autonomy which can conflict with professionals' perceptions of good care (Matscheck, Ljungberg, and Topor 2020;Davies and Gray 2015).…”

Section: Introductionmentioning

confidence: 99%

“…Tensions aggravate when professionals, clients and family members have different views on what is good care or hold different ontologies of clients (Heerings et al 2020;Jingree and Finlay 2012). Moreover, clients often receive care from a multitude of health and social services including supported living, sheltered work and leisure activities.…”

Section: Introductionmentioning

confidence: 99%

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Tinkering as Collective Practice: A Qualitative Study on Handling Ethical Tensions in Supporting People with Intellectual or Psychiatric Disabilities

Heerings

Bovenkamp

Cardol

et al. 2021

Ethics and Social Welfare

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The values of patient autonomy and community participation have become central in health care. However, care practices involve a plurality of possibly conflicting values. These values often transgress the borders of the individual professional-client relationship as they involve family members, other professionals and community organisations. Good care should acknowledge this relational complexity, which requires a collective handling of the tensions between values. To better understand this process, we draw on [Mol, A. 2008. The Logic of Care: Health and the Problem of Patient Choice. Routledge; Mol, A., I. Moser, and J. Pols. 2010a. Care in Practice: On Tinkering in Clinics, Homes and Farms. Transcript Verlag.) by developing the notion of collective tinkering. An ethnographic study was conducted in two teams in community housing services for people with Intellectual Disabilities and Severe Mental Illness. Collective tinkering is analysed (1) within teams;(2) between professionals, family members and professionals from different organisations providing care for the same client; and (3) in organising practices for a collective of clients. Collective tinkering involves assembling goods into a care practice, attentively experimenting with these care practices, and adjusting care accordingly within a collective of those involved in care for a particular client (group). When collective tinkering does not occur, the stakeholders excluded (e.g. clients or family members) may experience poor quality of care.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Tinkering as Collective Practice: A Qualitative Study on Handling Ethical Tensions in Supporting People with Intellectual or Psychiatric Disabilities

Heerings

Bovenkamp

Cardol

et al. 2021

Ethics and Social Welfare

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“…Second, autonomy has become an important value for community housing services, creating tension with other values. For instance, service users may enact their self-determination by not engaging in activities deemed important for living an independent lifestyle by professionals [15]. Our study develops a notion of tinkering as a collective practice.…”

mentioning

confidence: 97%

“…Clients for instance are involved in care planning [3][4][5][6], are supported to manage activities of daily living and participate in the community [7][8][9] and moved from institutional settings to supported independent living [10][11][12]. This focus on autonomy has made the care relationship more complex as professionals experience tensions with other values such as preventing harm [13][14][15][16][17].…”

mentioning

confidence: 99%

“…For instance, involving family members in long-term care is another important aspect of quality of care [18,19]. However, value tensions aggravate when professionals, clients and family members have different views on good care in the context of fostering autonomy, such as the support team and Jesse's mother in the vignette above [15,20]. Moreover, clients often receive care from a multitude of health and social services including supported living, sheltered work and leisure activities [21,22].…”

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confidence: 99%

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How Professionals Tinker With Ethical Tensions Collectively When Fostering Service User Autonomy: An Ethnographic Study In Long-term Care

Heerings¹,

Bovenkamp²,

Cardol³

et al. 2020

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Background: The value of patient autonomy has become central in healthcare. However, care practices involve a plurality of possibly conflicting values. These values often transgress the borders of the individual professional-client relationship as they involve family members, other professionals and community organizations. Good care should acknowledge this complexity, which requires a collective handling of the tensions between values. To better understand this process, we draw on Mol (2008, 2010) by developing the notion of collective tinkering. Methods: Through ethnographic study in two teams in community housing services for people with intellectual disability and serious mental illness, we analyze how professionals tinker collectively. This research design enables in-depth analysis of care practices as they unfold in their situated context. Data were gathered by means of participant observation, interviews and focus groups with professionals, service users, peer support workers and family members. Results: Collective tinkering is analyzed 1) within teams of professionals working together with family members; 2) between professionals from different organizations providing care for the same client; and 3) in organizing practices for a collective of clients. Collective tinkering involves assembling values into a care practice, attentively experimenting with these care practices and adjusting care accordingly within a collective of those involved in care for a particular client or collective of clients. When collective tinkering does not occur, the stakeholders excluded from the tinkering (e.g. clients or family members) may experience poor quality of care.Conclusion: Collective tinkering differs from ‘individual’ tinkering between professionals and clients in several ways. First, by including stakeholders involved with the client, collective tinkering adds values and ontologies important in dealing with the situation and aids the creative process of inventing and experimenting with the care practices that assemble these values. Second, collective tinkering needs organizational structures beyond direct professional-client contacts. Structures that provide the time and space for the wider collective involved in care to come together, reflect and co-design care practices. The results also show that collective tinkering runs the risk of excluding clients in negotiating value tensions. Including clients should be carefully considered when structuring collective tinkering.

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Burden of support: a counter narrative of service users’ experiences with community housing services

Heerings

Bovenkamp

Cardol

et al. 2022

Disability & Society

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Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users’ experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users ( n = 20), experts-by-experience ( n = 8), family members ( n = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden.

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Ethical Dilemmas of Participation of Service Users with Serious Mental Illness: A Thematic Synthesis

Cited by 6 publications

References 45 publications

Tinkering as Collective Practice: A Qualitative Study on Handling Ethical Tensions in Supporting People with Intellectual or Psychiatric Disabilities

Tinkering as Collective Practice: A Qualitative Study on Handling Ethical Tensions in Supporting People with Intellectual or Psychiatric Disabilities

How Professionals Tinker With Ethical Tensions Collectively When Fostering Service User Autonomy: An Ethnographic Study In Long-term Care

Burden of support: a counter narrative of service users’ experiences with community housing services

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