The Limits of Autonomy: Ideals in Care for People with Learning Disabilities

Pols, Jeannette; Althoff, Brigitte; Bransen, Els

doi:10.1080/01459740.2017.1367776

Cited by 33 publications

(32 citation statements)

References 22 publications

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“…First, after analyzing the complexity of the care relationship due to the increased attention for participation and its associated dilemmas, it is important to gain more knowledge on how professionals can deal with the dilemmas in practice. Several studies highlighting the importance of reflexively assembling different values in order to provide good care refer to this as 'tinkering' (Mol, 2008;Mol, Moser, & Pols, 2010;Pols et al, 2017). Given the complex situation of conflicting values, future studies could focus on 'tinkering' within the context of services aiming for enhanced user participation for people with SMI to increase our understanding of how good care can come about.…”

Section: Implications For Researchmentioning

confidence: 99%

“…Simultaneously, professionals have a responsibility for preventing or removing harm and promoting well-being. In some situations, preventing harm demands different actions of professionals than respecting patient autonomy, adding to the dilemmas professionals face (Beauchamp & Childress, 2013;Broer, Nieboer, & Bal, 2014;Cardol, Rijken, & van Schrojenstein Lantman-de Valk, 2012;Dwarswaard & van de Bovenkamp, 2015;Mol, Moser, & Pols, 2010;Pols, 2006;Pols, Althoff, & Bransen, 2017). The care relationship is complicated further by the fact that it involves several actors, including service users, professionals and family members who may all have other views on how to stimulate participation and deal with these dilemmas.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Heerings

Bovenkamp

Cardol

et al. 2020

Issues in Mental Health Nursing

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Mental health professionals are expected to stimulate the participation of service users with serious mental illness. This not only changes what is expected from service users and professionals, it also changes the values underlying their relationship. The value of autonomy becomes more important as a result. This raises potential ethical dilemmas. This paper reports the findings of a thematic synthesis of 28 papers on the views of service users, professionals and family members on the care relationship in inpatient, outpatient and community services for people with serious mental illness. It puts forward various perspectives on participation of service users, foregrounding differing values, which in turn can lead to ethical dilemmas for professionals. The key implications for mental health professionals and future research are discussed.

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Section: Implications For Researchmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Heerings

Bovenkamp

Cardol

et al. 2020

Issues in Mental Health Nursing

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show abstract

“…While tinkering is posed as a relational concept that can be used to understand complex care practices, including all relations important to providing care, it is mostly used to analyze the micro-relationships between professional and client. Despite some exceptions, there is little focus on the wider network of care relations, including teams of professionals, informal caregivers and other health/social care providers [17,23,24]Complexities and dynamics in such settings abound, as well as the need to handle tensions between different values and ontologies. As care is increasingly a collective effort, handling…”

Section: Tinkering Good Carementioning

confidence: 99%

“…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%

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

Preprint

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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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“…In deze benadering staat het idee centraal dat eenieder afhankelijk is van anderen en dit maakt begrijpelijk hoe ondersteuners en huismeesters, juist binnen de relatie en het "nabij zijn", bewoners kunnen ondersteunen, maar ook indien nodig hun gedrag kunnen structureren en begrenzen. Deze relationele opvatting is ook elders beschreven (Pols, Althoff & Bransen, 2017;Tronto, 1993) en heeft overeenkomsten met de presentie benadering (Baart & Carbo, 2013). Deze benadering sluit aan bij wat op de Boerderij "normalisering" wordt genoemd.…”

Section: A U T O N O O M B U R G E R S C H a P : T U S S E N K W E T unclassified

Gewoon wonen op een boerderij? Een innovatief woonproject voor een complexe doelgroep

Muusse¹,

Place²,

Rooijen

2018

JSI

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The article describes "de Boerderij" ("the Farm"), a residential project in Utrecht. This is an innovative housing facility for people with complex problems and needs. Its residents are people who -through a combination of addiction, psychiatric and behavioural problems -have faced repeated processes of exclusion. They had previously ended up on the street, in prison or in closed mental health wards. Existing housing facilities were inappropriate for the needs of this group, with many having caused considerable disruption and been suspended or evicted. The Boerderij facility

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The Limits of Autonomy: Ideals in Care for People with Learning Disabilities

Cited by 33 publications

References 22 publications

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

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

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

Gewoon wonen op een boerderij? Een innovatief woonproject voor een complexe doelgroep

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