Don't ask me what's the matter, ask me what matters: Acute mental health facility experiences of people living with autism spectrum conditions

Maloret, Paul; Scott, Tricia

doi:10.1111/jpm.12438

Cited by 24 publications

(31 citation statements)

References 18 publications

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“…The characteristics of the persons described in the studies were often of a diagnostic nature, such as suffering from emotional distress (Harris et al, 2016), intellectual disabilities (Lunsky & Gracey, 2009), affective and eating disorders (Johansson, Skärsäter, & Danielson, 2009), autism spectrum conditions (Maloret & Scott, 2018), schizophrenia (Niimura, Tanoue, & Nakanishi, 2016; Pitkänen, Hatonen, Kuosmanen, & Valimaki, 2008) or psychotic illness (Sebergsen, Norberg, & Talseth, 2016) as well as focused on visiting patterns such as frequency (Lunsky & Gracey, 2009; Schmidt, Ekstrand, & Bengtsson Tops, 2018; Vandyk, Young, MacPhee, & Gillis, 2018; Wise‐Harris et al, 2017). A limited number of studies focused on demographics such as women (Kennedy & Fortune, 2014; Lunsky & Gracey, 2009), or lesbian and gay adults (Robertson, Pote, Byrne, & Frasquilho, 2015).…”

Section: Resultsmentioning

confidence: 99%

“…Eales et al, 2006; Harris et al, 2016; Kennedy & Fortune, 2014; Schmidt et al, 2018), with only limited studies reporting a somewhat satisfactory setting experience (Alexius et al, 2000; Óladóttir & Pálmadóttir, 2017). The acute care settings were also associated with negative sensory experiences, such as smells, excessively bright lighting, lack of fresh air and chaotic noises (Harris et al, 2016; Johansson et al, 2009; Kennedy & Fortune, 2014; Maloret & Scott, 2018; Rose, Evans, Laker, & Wykes, 2015; Shattell et al, 2008) which triggered feelings of discomfort and fright. The environment was also experienced as unpredictable (Maloret & Scott, 2018) and prone to quick change from boring to chaotic and intense (Kennedy & Fortune, 2014; Shattell et al, 2008).…”

Section: Resultsmentioning

confidence: 99%

“…The acute care settings were also associated with negative sensory experiences, such as smells, excessively bright lighting, lack of fresh air and chaotic noises (Harris et al, 2016; Johansson et al, 2009; Kennedy & Fortune, 2014; Maloret & Scott, 2018; Rose, Evans, Laker, & Wykes, 2015; Shattell et al, 2008) which triggered feelings of discomfort and fright. The environment was also experienced as unpredictable (Maloret & Scott, 2018) and prone to quick change from boring to chaotic and intense (Kennedy & Fortune, 2014; Shattell et al, 2008). Needs associated with access to hygienic facilities (Clarke et al, 2007; Óladóttir & Pálmadóttir, 2017; Wood & Pistrang, 2004), to amenities such as family‐friendly rooms and private visiting rooms and to entertainment alternatives were usually not met and contributed to the negative experiences of the setting (Lunsky & Gracey, 2009; Walsh & Boyle, 2009).…”

Section: Resultsmentioning

confidence: 99%

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Experiences of acute care by persons with mental health problems: An integrative literature review

Schmidt

Umans

2020

Psychiatric Ment Health Nurs

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Accessible summary What is known on the subject? Understanding experiences of acute care by persons with mental health problems is vital for improving these experiences through the development of different parts of the care delivery and its facilities. Literature has extensively addressed experiences of persons with mental health problems in acute care settings. Yet, there is a paucity of studies that aggregate and organize these findings in presenting development‐oriented solutions for the improvements of these experiences. What the paper adds to existing knowledge? Acute care can be understood through patients’ experiences of structure (such as setting, staff and resources); process (such as communication and interpersonal relations); and outcome (such as satisfaction and post‐discharge well‐being and health) and suggests improvements in these domains. The paper illuminates that previous literature has mainly captured negative experiences of acute care by persons with mental health problems, and suggests diverting the focus to the best practices and to seek inspiration from other fields of research. What are the implications for practice? Attending to the improvement and development of different parts of the acute care might be an important step in improving experiences of persons with mental health problems. For example, improving resource allocation systems and facilities, emphasizing professionalism in encounters with these patients and systematically assessing patient satisfaction during and after visits are important areas that require attention. Abstract AimThe provision of acute care to persons with mental health problems is challenging due to difficulties in encountering this group and the vulnerability of these persons. Understanding this group's experiences with acute care is thus an important endeavour. The purpose of this review was to critically and systematically identify and assess previous research on experiences of acute care by persons with mental health problems, guided by Donabedian's structure–process–outcome framework (Prospero ID: CRD42019116652). Method and resultsAn integrative literature review was performed, resulting in the identification of 43 studies. The search was conducted using five electronic databases: Web of Science Core, PubMed, MEDLINE, CINAHL and PsycINFO. DiscussionThe review revealed that patients experienced structure components such as setting, staff and resources in a predominantly negative way. A predominately negative picture also emerged of the process components, where, for example, communication and interpersonal relations were represented by negative experiences, with limited positive experiences reported. The outcome components, related to patients’ satisfaction and their well‐being after discharge, were also predominantly experienced negatively. Implications for practiceUsing Donabedian's framework of structure, process and outcome allowed us to systematize the literature reviewed, to identify the research gaps and to suggest ways forward for the ...

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Experiences of acute care by persons with mental health problems: An integrative literature review

Schmidt

Umans

2020

Psychiatric Ment Health Nurs

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“…This "complicated entanglement" has been largely overlooked in the field of autism. Two studies here did address important intersections -between autism and gender (Tierney, Burns & Kilbey, 2016) and autism and acute mental health difficulties (Maloret & Scott, 2018). They give an…”

Section: Discussionmentioning

confidence: 99%

“…However, credibility checking with participants is not always appropriate to the research topic or participants' needs, not least because of the additional time commitment required from participants (Bourke, 2009). health facility (Maloret & Scott, 2018). The other eight papers had broadly the same focus which could be summarised as 'What does it mean to you to be autistic?'…”

Section: Attention To Power Relationsmentioning

confidence: 99%

Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review

MacLeod

2019

Research in Autism Spectrum Disorders

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Interpretative phenomenological analysis is distinctive in foregrounding participants' interpretations. As such, it is potentially useful for gaining an insight into the lived experience of autistic individuals and aligns well with participatory approaches. This paper provides the first systematic review of IPA studies that have employed a participatory approach and considers their contribution to Critical Autism Studies. Method Four electronic databases were searched to identify peer-reviewed empirical research articles which employed a participatory IPA approach to consult with autistic individuals. Thirteen studies from four countries, published 2008-2018, met the inclusion criteria. These were examined to identify details of the methodology, findings and recommendations in order to consider each in relation to the underpinning philosophies of IPA and participatory research respectively, and their relationship to the stated aims of Critical Autism Studies. Results A range of participatory approaches were employed and their use extended the depth and validity of findings. There was evidence of disruption to power relations in process and outcomes. Making sense of the autism diagnosis was a frequent point of discussion, even when this was not the focus of the study, and across studies, strong commonalities emerged, capturing a multidimensionality of 'autistic identities'. Conclusion Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review 3 This review provides evidence of the usefulness of IPA as a research approach to consult with autistic individuals. It lends itself to a range of participatory techniques and there is scope for these to be used with diverse autistic populations, in order to extend the opportunities for autistic individuals to be represented, and represent themselves, within autism research.

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Deliberate and Self-Conscious Adaptation of Eye-Contact by Autistic Adults

Garvey,

Ryan,

Murphy

2024

J Autism Dev Disord

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Eye gaze is widely recognised as an important element in managing social interactions, receiving information from others and communicating information about ourselves. Atypical eye gaze is one of the characteristic hallmarks of autism. Experimental research has contributed significantly to our knowledge of eye-gaze in autism, however, there is a lack of research exploring how autistic individuals describe and understand the phenomenological experience of eye-gaze and eye-contact. The current study explores the subjective experience of deliberate and self-conscious adaptation of eye-contact by autistic adults. Nine autistic adults were interviewed individually about their experiences of eye-contact. Audio recordings were transcribed, and analysed using Interpretative Phenomenological Analysis (IPA). Themes included gaining awareness of eye contact differences through feedback from others, the interaction of motivation to make eye-contact with a sense of autistic identity, difficulties listening when making eye contact, the importance of familiarity of conversational partners, and strategies to make eye-contact. This study makes an important and novel contribution to understanding the experience of eye-contact differences from the perspective of autistic adults themselves, highlighting the phenomenology of eye-contact as potentially aversive and the social pressure to engage in it, and exploring factors influencing effective eye-contact, with implications for psychological intervention.

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Don't ask me what's the matter, ask me what matters: Acute mental health facility experiences of people living with autism spectrum conditions

Cited by 24 publications

References 18 publications

Experiences of acute care by persons with mental health problems: An integrative literature review

Experiences of acute care by persons with mental health problems: An integrative literature review

Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review

Deliberate and Self-Conscious Adaptation of Eye-Contact by Autistic Adults

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