Sara Ryan
Datos Biográficos
| ID | 3583068 |
|---|---|
| NOMBRE | Sara Ryan |
| NOMBRES | Sara |
| APELLIDO | Ryan |
| FIRMA | RYAN S |
| AFILIACIONES | Manchester Metropolitan University |
| ORCID | 0000-0002-7406-1610 |
| VERIFICADO | Sí |
| TOTAL DE OBRAS | 30 |
| TOTAL DE CITAS | 167 |
| TOTAL COMO AUTOR | 30 |
| TOTAL COMO EDITOR | 0 |
| PRIMER AÑO DE PUBLICACIÓN | 2005 |
| AÑO MÁS RECIENTE DE PUBLICACIÓN | 2025 |
| ÍNDICE H | 8 |
Moving off Script
The article is about digital storytelling in the context of health and social care research with people with learning disabilities and family carers in the United Kingdom. It explains being drawn to decolonial thinking in the formulation of metodologia otra to think again about the processes and practices of (digital) storytelling in health and social care research. The article concludes by reflecting on what we learned about digital storytelling…
Tired of Spinning Plates
Family carers of adults with learning disabilities provide support that is not only valuable to the person they love and care for but is critical care labour for society in the UK. This care fills gaps in health and social care provision, is lifelong, and often entails longer hours of caring in comparison to other groups of carers. Despite this phenomenal and often invisible care work, how this group of carers experience their roles in relation t…
Kindness and curious kinships in the lives of family carers of adults with learning disabilities
This article engages with transcripts from 12 family carers to explore kindness in the lives of family carers and adults with learning disabilities. Knowing that kindness matters and understanding it to be linked to an expansive notion of kinship that transcends familial ties, we examine its presence and absence in interactions between family carers and health and social care professionals, services and systems. Our findings show how a lack of cu…
Iatrogenic injustice
The public has an important role to play in the regulation of health and social care, including raising concerns about harms caused by health and social care professionals to improve the safety and quality of services. There is little evidence about the experiences of members of the public who engage in regulatory processes and raise concerns with regulators. We conducted an institutional ethnography of the experiences of public witnesses (patien…
Between epistemic injustice and therapeutic jurisprudence
Understanding how and why someone dies unexpectedly is key to bereaved family members. The coronial process in England investigates instances where the cause of death is unknown, violent or unnatural and/or occurred in state detention. Families are held to be at the centre of this process and the coroner's role has extended to concern about therapeutic jurisprudence, that is, how legal processes can minimise negative consequences for participants…
‘They are one of us’
Health workers negative attitudes and stigma are often reported as one of the greatest barriers for disabled people to access healthcare. Interventions have been developed in response, and preliminary results often show promising effect on changing health workers' negative attitudes. However, this does not include longer-term, qualitative follow up to explore how health workers change their behaviour post-intervention. This qualitative study exam…
Should we even have questions?’ From survey to exhibition – co-producing research about ‘mental health’ with carers and adults with learning disabilities
Carers’ mental health is often the focus of policy and research in Global North contexts. Research exploring carers’ views often uses survey methods to collect information about their experiences and views of services and support. However, the experiences of adult carers of adults with learning disabilities have often been marginalised within these domains. Here, we report on how, working together with family carers, we disrupted survey methods a…
TreatmentResistantDepression
Whose uncertainty? Learning disability research in a time of Covid-19
UK government responses to COVID-19 have intensified experiences of uncertainty for people with learning disabilities. The pandemic has eroded the support people receive, previously weakened by austerity measures. In research, COVID-19 related uncertainty has led to some reworking of methods and intensive contingency planning. This was to fulfil funding requirements and was underpinned by research teams’ commitment to continuing research with peo…
Experiences and meaning of loneliness beyond age and group identity
Research into loneliness has focussed on subpopulations, and in particular those defined by age, identifying specific contextual factors contributing to their experiences. We suggest that the 'essence' of loneliness cannot be fully captured by examining a unitary group and argue for broader and diverse sampling to better understand how loneliness is experienced. Informed by a symbolic interactionist approach, this study aims to elucidate experien…
Scholar activism
In this chapter, we explore the concept of scholar activism. We draw on our experiences as mothers of disabled children, activists and academics, and include case study examples to illustrate the ways in which we make sense of, and attempt to enact, scholar activism. We argue that: The lines between what counts as “scholarship” and “activism” are inevitably blurred; It is important to recognise the activisms of marginalised and minoritised groups…
‘Language has been granted too much power’. 1,p.1 Challenging the power of words with time and flexibility in the precommencement stage of research involving those with cognitive impairment
Mad Mothering
The article brings together the fields of mad studies (LeFrancois et al.), matricentric feminism (O’Reilly, Matricentric Feminism) and critical disability studies (Goodley, “Dis/entangling Critical Disability Studies”). The aim is to expose and challenge “relations of ruling” (Smith 79) that both produce and discipline “mad mothers of disabled children.” The analysis begins by exploring the un/commonalities of the emerging histories of the three …
Face-to-Face Compared With Online Collected Accounts of Health and Illness Experiences
Advocates of online alternatives to face-to-face interviewing suggest online approaches save money and time, whereas others have raised concerns about the quality and content of the resulting data. These issues affect researchers designing and costing their studies and application reviewers and research funders. We conducted a scoping review of English language articles describing the range of online alternative approaches. Furthermore, we system…
Partial or total knee replacement? Identifying patients’ information needs on knee replacement surgery
Patients' experiences of surgical decision-making have much in common with the Necessity-Concerns Framework. Whilst originally developed to understand drug treatment decisions and adherence, it provides a useful lens to understand decision-making about surgery. The use of a decision aid could enhance decision-making on knee replacement surgery. Ultimately, patients' understanding of the risks and benefits of both surgical options could be improve…
Liminal still? Unmothering disabled children
In this article we reflect on our experiences as mothers, academics and activists over the last 10 years. We explore the (limited) successes in campaigns for disabled children and young people, and offer an analysis of why such campaigning seems to be stuck in a cycle of failure. We want to move away from traditional approaches to campaigning that rely on story-telling and awareness-raising. Instead, we offer a description of a form of campaignin…
NHS Inquiries and Investigations; an Exemplar in Peculiarity and Assumption
There is little research focussing on how bereaved families experience NHS inquiries and investigations. Despite this gap, there is a consistent assumption that these processes provide families with catharsis. Drawing on my personal experiences of NHS investigations over a five‐year period after the death of our son, Connor Sparrowhawk, I suggest the assumption of catharsis is misplaced and works to erase the considerable emotional ‘accountabilit…
Untimely illness
BACKGROUND: We explore the concept of "untimely diagnosis," where the onset of a long-term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been …
Honouring a life and narrative work
The importance of witnessing broken narratives and somehow writing or representing these is matched by the challenges associated with trying to do this within a context of normativity and expected academic practice. We have to be convincing in our work, both in terms of rigour and dependability but also in terms of the way we make sense of the stories we are told. In this essay, I examine the narrative of John, a 63-year-old British man diagnosed…
A licence to drive? Neurological illness, loss and disruption
The sense of freedom and independence that being able to drive generates may be taken for granted by many until it is threatened by illness. Drawing on the 'mobility turn' in social sciences that emphasises the social and emotional significance of the car (Sheller and Urry , ), this article presents secondary analysis of narratives of driving and its significance across four neurological conditions (epilepsy, Parkinson's disease, transient ischae…
Do we all agree what “good health care” looks like? Views from those who are “seldom heard” in health research, policy and service improvement
CONTEXT: The aim of this study was to ask whether there are shared ideas about what good health care looks like that apply across different populations and conditions. Do priorities among "seldom heard" groups differ from mainstream views and, if so, how might we understand these differences? DESIGN: Focus groups were recruited with the help of our study patient representatives. Participants discussed and prioritized a set of eight "core componen…
Care, Control, and the Electroconvulsive Therapy Ritual
Despite evidence of short-term effectiveness of ECT (electroconvulsive therapy), both positive and negative patient reports are common. However, research examining these polarized accounts has not adequately elucidated why such divergences occur. We thus sought to examine opposing patient narratives to better understand underlying meanings. Eighteen interviews were conducted with U.K.-based people who had experienced the treatment. Our analysis r…
I knew before I was told
On interviewing people with pets
There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in-depth interviews with people, or carers of people, with long-term conditions, we explore how pets feature in people's narrative accounts of the…
Children, young people and ‘disability’
This editorial puts forward a selection of papers which were first presented at the 2007 Annual International Conference of the Royal Geographical Society (with the Institute of British Geographers
Repositioning mothers
In this article we set out to review the ways in which mothers of disabled children have been portrayed within disability studies and the more broader academic literature. We argue that within disability studies mothers of disabled children occupy a liminal position because they are often not disabled and yet they can experience forms of disablism. Their experiences can differ markedly from the experiences of mothers of non‐disabled children and …
I knew before I was told
On interviewing people with pets
There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in-depth interviews with people, or carers of people, with long-term conditions, we explore how pets feature in people's narrative accounts of the…
Children, young people and ‘disability’
This editorial puts forward a selection of papers which were first presented at the 2007 Annual International Conference of the Royal Geographical Society (with the Institute of British Geographers
Liminal still? Unmothering disabled children
In this article we reflect on our experiences as mothers, academics and activists over the last 10 years. We explore the (limited) successes in campaigns for disabled children and young people, and offer an analysis of why such campaigning seems to be stuck in a cycle of failure. We want to move away from traditional approaches to campaigning that rely on story-telling and awareness-raising. Instead, we offer a description of a form of campaignin…
Meltdowns’, surveillance and managing emotions; going out with children with autism
The qualitative study from which the data reported here are taken, explored the experiences, support and information needs of parents of children diagnosed with autism spectrum disorders. 46 parents were interviewed either individually or in couples. Thematic analysis of the data revealed the complexity involved for the parents in taking their children out in public places. The emotion work parents conduct in public places both to make their chil…
Experiences and meaning of loneliness beyond age and group identity
Research into loneliness has focussed on subpopulations, and in particular those defined by age, identifying specific contextual factors contributing to their experiences. We suggest that the 'essence' of loneliness cannot be fully captured by examining a unitary group and argue for broader and diverse sampling to better understand how loneliness is experienced. Informed by a symbolic interactionist approach, this study aims to elucidate experien…
People don't do odd, do they?’ mothers making sense of the reactions of others towards their learning disabled children in public places
This paper will demonstrate how a focus upon the practices and interactions in and of the everyday lives of mothers of learning disabled children can provide rich insights into the position of a group of children who may not be able to conform to appropriate ways of behaving and using space. This focus will illustrate how the spatial practices and experiences of the mothers and their children are shaped by the reactions of others present and the …
NHS Inquiries and Investigations; an Exemplar in Peculiarity and Assumption
There is little research focussing on how bereaved families experience NHS inquiries and investigations. Despite this gap, there is a consistent assumption that these processes provide families with catharsis. Drawing on my personal experiences of NHS investigations over a five‐year period after the death of our son, Connor Sparrowhawk, I suggest the assumption of catharsis is misplaced and works to erase the considerable emotional ‘accountabilit…
Care, Control, and the Electroconvulsive Therapy Ritual
Despite evidence of short-term effectiveness of ECT (electroconvulsive therapy), both positive and negative patient reports are common. However, research examining these polarized accounts has not adequately elucidated why such divergences occur. We thus sought to examine opposing patient narratives to better understand underlying meanings. Eighteen interviews were conducted with U.K.-based people who had experienced the treatment. Our analysis r…
Between epistemic injustice and therapeutic jurisprudence
Understanding how and why someone dies unexpectedly is key to bereaved family members. The coronial process in England investigates instances where the cause of death is unknown, violent or unnatural and/or occurred in state detention. Families are held to be at the centre of this process and the coroner's role has extended to concern about therapeutic jurisprudence, that is, how legal processes can minimise negative consequences for participants…
A licence to drive? Neurological illness, loss and disruption
The sense of freedom and independence that being able to drive generates may be taken for granted by many until it is threatened by illness. Drawing on the 'mobility turn' in social sciences that emphasises the social and emotional significance of the car (Sheller and Urry , ), this article presents secondary analysis of narratives of driving and its significance across four neurological conditions (epilepsy, Parkinson's disease, transient ischae…
It takes two to tango … but what if one can’t dance and the other doesn’t want to
"It takes two to tango ... but what if one can’t dance and the other doesn’t want to: a response to van de Ven et al. ." Disability & Society, 21(1), pp. 91–92
People don't do odd, do they?’ mothers making sense of the reactions of others towards their learning disabled children in public places
This paper will demonstrate how a focus upon the practices and interactions in and of the everyday lives of mothers of learning disabled children can provide rich insights into the position of a group of children who may not be able to conform to appropriate ways of behaving and using space. This focus will illustrate how the spatial practices and experiences of the mothers and their children are shaped by the reactions of others present and the …
“I used to worry about what other people thought but now I just think … well I don’t care”
Repositioning mothers
In this article we set out to review the ways in which mothers of disabled children have been portrayed within disability studies and the more broader academic literature. We argue that within disability studies mothers of disabled children occupy a liminal position because they are often not disabled and yet they can experience forms of disablism. Their experiences can differ markedly from the experiences of mothers of non‐disabled children and …
Children, young people and ‘disability’
This editorial puts forward a selection of papers which were first presented at the 2007 Annual International Conference of the Royal Geographical Society (with the Institute of British Geographers
Meltdowns’, surveillance and managing emotions; going out with children with autism
The qualitative study from which the data reported here are taken, explored the experiences, support and information needs of parents of children diagnosed with autism spectrum disorders. 46 parents were interviewed either individually or in couples. Thematic analysis of the data revealed the complexity involved for the parents in taking their children out in public places. The emotion work parents conduct in public places both to make their chil…
On interviewing people with pets
There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in-depth interviews with people, or carers of people, with long-term conditions, we explore how pets feature in people's narrative accounts of the…
I knew before I was told
Do we all agree what “good health care” looks like? Views from those who are “seldom heard” in health research, policy and service improvement
CONTEXT: The aim of this study was to ask whether there are shared ideas about what good health care looks like that apply across different populations and conditions. Do priorities among "seldom heard" groups differ from mainstream views and, if so, how might we understand these differences? DESIGN: Focus groups were recruited with the help of our study patient representatives. Participants discussed and prioritized a set of eight "core componen…
Care, Control, and the Electroconvulsive Therapy Ritual
Despite evidence of short-term effectiveness of ECT (electroconvulsive therapy), both positive and negative patient reports are common. However, research examining these polarized accounts has not adequately elucidated why such divergences occur. We thus sought to examine opposing patient narratives to better understand underlying meanings. Eighteen interviews were conducted with U.K.-based people who had experienced the treatment. Our analysis r…
Untimely illness
BACKGROUND: We explore the concept of "untimely diagnosis," where the onset of a long-term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been …
Honouring a life and narrative work
The importance of witnessing broken narratives and somehow writing or representing these is matched by the challenges associated with trying to do this within a context of normativity and expected academic practice. We have to be convincing in our work, both in terms of rigour and dependability but also in terms of the way we make sense of the stories we are told. In this essay, I examine the narrative of John, a 63-year-old British man diagnosed…
A licence to drive? Neurological illness, loss and disruption
The sense of freedom and independence that being able to drive generates may be taken for granted by many until it is threatened by illness. Drawing on the 'mobility turn' in social sciences that emphasises the social and emotional significance of the car (Sheller and Urry , ), this article presents secondary analysis of narratives of driving and its significance across four neurological conditions (epilepsy, Parkinson's disease, transient ischae…
Partial or total knee replacement? Identifying patients’ information needs on knee replacement surgery
Patients' experiences of surgical decision-making have much in common with the Necessity-Concerns Framework. Whilst originally developed to understand drug treatment decisions and adherence, it provides a useful lens to understand decision-making about surgery. The use of a decision aid could enhance decision-making on knee replacement surgery. Ultimately, patients' understanding of the risks and benefits of both surgical options could be improve…
Liminal still? Unmothering disabled children
In this article we reflect on our experiences as mothers, academics and activists over the last 10 years. We explore the (limited) successes in campaigns for disabled children and young people, and offer an analysis of why such campaigning seems to be stuck in a cycle of failure. We want to move away from traditional approaches to campaigning that rely on story-telling and awareness-raising. Instead, we offer a description of a form of campaignin…
NHS Inquiries and Investigations; an Exemplar in Peculiarity and Assumption
There is little research focussing on how bereaved families experience NHS inquiries and investigations. Despite this gap, there is a consistent assumption that these processes provide families with catharsis. Drawing on my personal experiences of NHS investigations over a five‐year period after the death of our son, Connor Sparrowhawk, I suggest the assumption of catharsis is misplaced and works to erase the considerable emotional ‘accountabilit…
Face-to-Face Compared With Online Collected Accounts of Health and Illness Experiences
Advocates of online alternatives to face-to-face interviewing suggest online approaches save money and time, whereas others have raised concerns about the quality and content of the resulting data. These issues affect researchers designing and costing their studies and application reviewers and research funders. We conducted a scoping review of English language articles describing the range of online alternative approaches. Furthermore, we system…
Mad Mothering
The article brings together the fields of mad studies (LeFrancois et al.), matricentric feminism (O’Reilly, Matricentric Feminism) and critical disability studies (Goodley, “Dis/entangling Critical Disability Studies”). The aim is to expose and challenge “relations of ruling” (Smith 79) that both produce and discipline “mad mothers of disabled children.” The analysis begins by exploring the un/commonalities of the emerging histories of the three …
Scholar activism
In this chapter, we explore the concept of scholar activism. We draw on our experiences as mothers of disabled children, activists and academics, and include case study examples to illustrate the ways in which we make sense of, and attempt to enact, scholar activism. We argue that: The lines between what counts as “scholarship” and “activism” are inevitably blurred; It is important to recognise the activisms of marginalised and minoritised groups…
‘Language has been granted too much power’. 1,p.1 Challenging the power of words with time and flexibility in the precommencement stage of research involving those with cognitive impairment
TreatmentResistantDepression
Whose uncertainty? Learning disability research in a time of Covid-19
UK government responses to COVID-19 have intensified experiences of uncertainty for people with learning disabilities. The pandemic has eroded the support people receive, previously weakened by austerity measures. In research, COVID-19 related uncertainty has led to some reworking of methods and intensive contingency planning. This was to fulfil funding requirements and was underpinned by research teams’ commitment to continuing research with peo…
Experiences and meaning of loneliness beyond age and group identity
Research into loneliness has focussed on subpopulations, and in particular those defined by age, identifying specific contextual factors contributing to their experiences. We suggest that the 'essence' of loneliness cannot be fully captured by examining a unitary group and argue for broader and diverse sampling to better understand how loneliness is experienced. Informed by a symbolic interactionist approach, this study aims to elucidate experien…
‘They are one of us’
Health workers negative attitudes and stigma are often reported as one of the greatest barriers for disabled people to access healthcare. Interventions have been developed in response, and preliminary results often show promising effect on changing health workers' negative attitudes. However, this does not include longer-term, qualitative follow up to explore how health workers change their behaviour post-intervention. This qualitative study exam…
Should we even have questions?’ From survey to exhibition – co-producing research about ‘mental health’ with carers and adults with learning disabilities
Carers’ mental health is often the focus of policy and research in Global North contexts. Research exploring carers’ views often uses survey methods to collect information about their experiences and views of services and support. However, the experiences of adult carers of adults with learning disabilities have often been marginalised within these domains. Here, we report on how, working together with family carers, we disrupted survey methods a…
Psychology (23 obras) · Sociology (20 obras) · Social Psychology (15 obras) · Political science (13 obras) · Medicine (12 obras) · Disability Rights and Representation (11 obras) · Social Psychology (11 obras) · Developmental psychology (6 obras) · Learning disability (6 obras) · Narrative (6 obras)