Bernie Carter
Dados Biográficos
| ID | 3759647 |
|---|---|
| NOME | Bernie Carter |
| PRENOMES | Bernie |
| SOBRENOME | Carter |
| ASSINATURA | CARTER B |
| AFILIAÇÕES | Edge Hill University |
| ORCID | 0000-0001-5226-9878 |
| VERIFICADO | Sim |
| TOTAL DE OBRAS | 32 |
| TOTAL DE CITAÇÕES | 54 |
| TOTAL COMO AUTOR | 30 |
| TOTAL COMO EDITOR | 2 |
| PRIMEIRO ANO DE PUBLICAÇÃO | 2002 |
| ANO MAIS RECENTE DE PUBLICAÇÃO | 2026 |
| ÍNDICE H | 5 |
‘I Didn't Even Associate the Two Together at All’
Exploring the Views of Children With Cerebral Palsy, Their Parents and Physiotherapists on Participating in a Feasibility Randomised Controlled Trial Testing an Exergaming Device
BACKGROUND: This study aimed to understand the experiences and views of children with cerebral palsy, their parents and physiotherapists participating in the ACCEPT feasibility randomised controlled trial, which explored a 10-week physiotherapy intervention using an interactive gaming training device. DESIGN: Qualitative methods included semi-structured interviews, e-diary and photographs. Nine parent-child dyads and three physiotherapists partic…
Talking the Walk (Along)
BACKGROUND: Children with cerebral palsy (CP) regularly fall over, but causes of day-to-day falls are not well understood. Further insight may be revealed by engaging with children with CP and their families during patient and public involvement and engagement (PPIE) and adopting a participatory, child-centred perspective. PPIE involves designing, conducting and disseminating research with the public and has been used in health research with chil…
Establishing Consensus on the Breakthrough Pain Assessment Questionnaire-Self Report (BTPAQ-SR) for Typically Developing Children and Young People (8–25 yrs) with Life-Limiting and Life-Threatening Co…
The findings from this study support the clinical need for the BTPAQ-SR, confirm its conceptual foundation, and justify its continued development. Next steps include cognitive interviews with children and young people and introduction to clinical care to assess the psychometric properties of the BTPAQ-SR, including its clinical utility, reliability, and validity
Being Participatory: Researching with Children and Young People
This 2nd Ed. provides a framework for conducting participatory research with children and young people supported by international research
Definition and Assessment of Paediatric Breakthrough Pain
Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessme…
Grounding perceptions
Introduction In recent years, there has been an increasing use of otoendoscopy in middle ear surgery. There is also increasing evidence of its usefulness as a diagnostic tool for clinicians. However, there is limited evidence on whether understanding their ear condition is of benefit to patients. This novel study sought to explore the perceptions, perspectives, and satisfaction of parents, children, and young people regarding the use of otoendosc…
“A hard-won capability”
Introduction Parents of babies who required neonatal care are responsible for managing their medicines after they are discharged home. There is wide variation in the information and amount of preparation given to parents prior to assuming this challenging task. The aim of the Parent co-Designed Drug Information for parents and Guardians Taking Neonates home (PADDINGToN) study was to explore parents' experiences of managing their babies' medicines…
Health literacy among children living with a long-term condition
Background: Little is known about the health literacy of children living with long-term conditions. This study aimed to gain insight into the life of children with a long-term condition in the context of health literacy, specifically their understanding of their health and the barriers and facilitators to sharing information about their condition with others. Design: Child-centred qualitative arts-based approach with children aged 6–12 years. Set…
Zooming’ in on Consulting with Children and Parents Remotely to Co-Create Health Information Resources
The COVID-19 pandemic altered the way many people worked. Remote and creative ways were favoured and utilised for consultation activities. In this paper, we draw attention to how we have used creative methods over the teleconferencing platform 'ZOOM' to consult with children and their parents when we were unable to consult with them face-to-face. We document a clear timeline of how we have worked together to co-create an animation and information…
The Winter Strategy – a Multifaceted Integrated Care Intervention to Support People with Chronic and Complex Care Needs during the Australian Winter Period
Introduction: Health care demands increase over the winter period, especially for people with chronic diseases. Hospital avoidance programs have potential to address seasonal surges. Methods: An integrated care intervention was provided to patients at high risk of hospitalisation during the 2017 and 2018 winters in Northern New South Wales, Australia. Patients received increased support including general practice sick day action plans, automated …
Parents Reaching Out to Parents
Sixty-five stakeholders participated: parents (n = 43; mothers, n = 42), Parent Champions (n = 9), Children's Centre Managers (n = 8), Children's Centre Group Leaders (n = 11), and Core Team (n = 4). An overarching theme 'Parents reaching out to parents' was supported by five sub-themes (Raising awareness and sharing knowledge; Creating connection, trust, and confidence; Flourishing in their role as a Parent Champion; Rising to the challenges; an…
It doesn't feel like our house anymore’
The study aimed to identify how medical technology impacts upon the home and life at home. Inductive auto-driven photo-elicitation or semi-structured interviews were conducted with technology-dependent children/young people (n = 2) and their family members (n = 15) from 10 families. Thematic analysis generated three themes: Altered physicality and look of the home; Altered sounds in the home; and 'It's worth it! Technology enables us to stay as a…
I feel like my house was taken away from me’
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elici…
Children’s pictures of Covid-19 and measures to mitigate its spread
Objectives: To gain insight into children’s health-related knowledge and understanding of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV2) and COVID-19, and measures adopted to mitigate transmission. Design: A child-centred qualitative creative element embedded in an online mixed-methods survey of children aged 7–12 years. Setting: Children participated in the study in six countries – the UK, Australia, Sweden, Brazil, Spain and Canada…
Using methods across generations
In more recent years in geographical research there has been a trend towards ‘child-friendly’ or ‘young people-friendly’ research methods, often involving creativity and participation. Meanwhile, traditional methods such as interviews and focus groups continue to dominate research with adult participants. This paper draws and reflects on fieldnotes documented during a study which used participatory design workshops with activity-based methods to …
Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK
In this sample of 14-25-year-old patients with IBD, specifics about the disease (severity and pain) predicted poorer mental health, suggesting discussion of mental health should be part of the clinical dialogue between patient and consultant. In addition, embarrassment about their condition increased depression, anxiety, and loneliness, mediating the relationship between disease severity and well-being. Thus, it is important to consider how perce…
Working back to the future
Using data from participatory storytelling research with 65 young people, this article provides a co-created theoretical grounding for radical social work with children and young people. The problems and solutions social work should be seeking are explored in the light of resilience theories and the capability approach. The young people’s perspectives echo but extend existing resilience interventions and definitions of the capability approach, hi…
Not a nurse but more than a mother
This paper reports on the analysis of parent-recorded video diaries from a parent-driven campaign, #notanurse_but, supported by the charity WellChild. The campaign reveals the challenges that parents (predominantly mothers) face providing high level, ongoing clinical care for a son or daughter who has complex health care needs. A team of four researchers analysed 30 videos from the WellChild website, WellChild Facebook page, a dedicated #notanurs…
Stories as findings in collaborative research
Working in a participatory research project with young people who are disabled, care-experienced or otherwise disadvantaged, collaborative fiction writing was a core method of hearing and amplifying their voices. We discuss how meanings were made in this iterative process of capturing resonances in the different stages of the research, resulting in the creation of stories filtered through many different participants. Through individual and joint …
The absent-present researcher
In recent years, there has been a proliferation of sophisticated, user-friendly and accessible instruments of video data collection (e.g. mobile/cell phones and tablets) which facilitate video-based research and analysis. This paper reports on the opportunities and challenges of undertaking video analysis by reporting on the qualitative video analysis of a subset of 30 purposively selected videos from #notanurse_but, a parent-driven video campaig…
Coming ‘Home’
Being Participatory
Disfigurement, the body and dress
This article reviews literature on disfigurement, the body and dress in order to better understand the relationship between dress—including mainstream clothing (“fashion”), clinical clothing (such as pressure garments, prescribed glasses, and prescribed footwear), and accessories—and its social and symbolic status for individuals living with a visible difference. We assess the state of the field through an interdisciplinary lens, collating litera…
Motivational Interviewing Post-Stroke
Our earlier research demonstrated that participation in four sessions of motivational interviewing (MI) early post-stroke has a positive impact on stroke survivors' mood. However, the theoretical underpinnings of MI in supporting adjustment (rather than its traditional use in supporting behavior change) require clarification. This article describes a content analysis of MI transcripts for 10 participants in our previous study, to identify the foc…
I am closer to this place’—Space, place and notions of home in lived experiences of hospice day care
Stories as findings in collaborative research
Working in a participatory research project with young people who are disabled, care-experienced or otherwise disadvantaged, collaborative fiction writing was a core method of hearing and amplifying their voices. We discuss how meanings were made in this iterative process of capturing resonances in the different stages of the research, resulting in the creation of stories filtered through many different participants. Through individual and joint …
Support for Children’s Protagonism
With notable exceptions, there is a lack of critique in existing approaches to children’s rights based research. Where children’s rights research is also co-research with children, a critical approach requires that children are enabled to challenge assumptions about, and definitions of, rights, as well as to lead the process and to try to bring about change. This paper argues that creative methods and structured intergenerational dialogue can sup…
Just kids playing sport (in a chair)’
Children who use wheelchairs have few opportunities to play sport with their able-bodied peers and siblings. This appreciative, qualitative study explored the experiences of children, families and stakeholders at a wheelchair sports club. Participant observation, research activities, focus groups and interviews were used. Sixty-three people participated (37 children, 14 stakeholders, 10 parents, two older siblings). Thematic analysis identified o…
Using methods across generations
In more recent years in geographical research there has been a trend towards ‘child-friendly’ or ‘young people-friendly’ research methods, often involving creativity and participation. Meanwhile, traditional methods such as interviews and focus groups continue to dominate research with adult participants. This paper draws and reflects on fieldnotes documented during a study which used participatory design workshops with activity-based methods to …
Chronic Pain in Childhood and the Medical Encounter
This article is a report on the experiences of three children with chronic pain and their families. The children and families experienced numerous encounters with health professionals during their "quest for a diagnosis" for chronic pain. In a high proportion of these encounters, the children/families felt they were judged, disbelieved, and labeled as difficult or dysfunctional, and this compounded the stresses they were already dealing with. The…
Motivational Interviewing Post-Stroke
Our earlier research demonstrated that participation in four sessions of motivational interviewing (MI) early post-stroke has a positive impact on stroke survivors' mood. However, the theoretical underpinnings of MI in supporting adjustment (rather than its traditional use in supporting behavior change) require clarification. This article describes a content analysis of MI transcripts for 10 participants in our previous study, to identify the foc…
I feel like my house was taken away from me’
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elici…
The absent-present researcher
In recent years, there has been a proliferation of sophisticated, user-friendly and accessible instruments of video data collection (e.g. mobile/cell phones and tablets) which facilitate video-based research and analysis. This paper reports on the opportunities and challenges of undertaking video analysis by reporting on the qualitative video analysis of a subset of 30 purposively selected videos from #notanurse_but, a parent-driven video campaig…
Working back to the future
Using data from participatory storytelling research with 65 young people, this article provides a co-created theoretical grounding for radical social work with children and young people. The problems and solutions social work should be seeking are explored in the light of resilience theories and the capability approach. The young people’s perspectives echo but extend existing resilience interventions and definitions of the capability approach, hi…
Not a nurse but more than a mother
This paper reports on the analysis of parent-recorded video diaries from a parent-driven campaign, #notanurse_but, supported by the charity WellChild. The campaign reveals the challenges that parents (predominantly mothers) face providing high level, ongoing clinical care for a son or daughter who has complex health care needs. A team of four researchers analysed 30 videos from the WellChild website, WellChild Facebook page, a dedicated #notanurs…
Parallel-Serial Memoing
The mechanisms by which talking therapies exert their beneficial effects are largely unknown. In exploring the process of a talking therapy, motivational interviewing (MI), when used to treat and prevent low mood in stroke survivors, we developed, what we believe to be, a novel approach to analyzing transcripts. We illustrate the method using qualitative data from MI sessions with 10 stroke survivors. The approach, drawing on grounded theory, inc…
Chronic Pain in Childhood and the Medical Encounter
This article is a report on the experiences of three children with chronic pain and their families. The children and families experienced numerous encounters with health professionals during their "quest for a diagnosis" for chronic pain. In a high proportion of these encounters, the children/families felt they were judged, disbelieved, and labeled as difficult or dysfunctional, and this compounded the stresses they were already dealing with. The…
I am closer to this place’—Space, place and notions of home in lived experiences of hospice day care
Achieving primary care integration
This paper describes an initiative to incorporate Community Health Services into General Practice based care across the New South Wales North Coast Medicare Local (NCML) region which has arisen as a result of recognised weaknesses in primary health care integration in the region
Just kids playing sport (in a chair)’
Children who use wheelchairs have few opportunities to play sport with their able-bodied peers and siblings. This appreciative, qualitative study explored the experiences of children, families and stakeholders at a wheelchair sports club. Participant observation, research activities, focus groups and interviews were used. Sixty-three people participated (37 children, 14 stakeholders, 10 parents, two older siblings). Thematic analysis identified o…
Integration through co-location of allied health services into general practice
Integracin a travs de la co-localizacin de los servicios de salud aliados en la prctica general: un ensayo de demostracin en la costa norte de
Support for Children’s Protagonism
With notable exceptions, there is a lack of critique in existing approaches to children’s rights based research. Where children’s rights research is also co-research with children, a critical approach requires that children are enabled to challenge assumptions about, and definitions of, rights, as well as to lead the process and to try to bring about change. This paper argues that creative methods and structured intergenerational dialogue can sup…
Motivational Interviewing Post-Stroke
Our earlier research demonstrated that participation in four sessions of motivational interviewing (MI) early post-stroke has a positive impact on stroke survivors' mood. However, the theoretical underpinnings of MI in supporting adjustment (rather than its traditional use in supporting behavior change) require clarification. This article describes a content analysis of MI transcripts for 10 participants in our previous study, to identify the foc…
Parallel-Serial Memoing
The mechanisms by which talking therapies exert their beneficial effects are largely unknown. In exploring the process of a talking therapy, motivational interviewing (MI), when used to treat and prevent low mood in stroke survivors, we developed, what we believe to be, a novel approach to analyzing transcripts. We illustrate the method using qualitative data from MI sessions with 10 stroke survivors. The approach, drawing on grounded theory, inc…
Being Participatory
Disfigurement, the body and dress
This article reviews literature on disfigurement, the body and dress in order to better understand the relationship between dress—including mainstream clothing (“fashion”), clinical clothing (such as pressure garments, prescribed glasses, and prescribed footwear), and accessories—and its social and symbolic status for individuals living with a visible difference. We assess the state of the field through an interdisciplinary lens, collating litera…
The absent-present researcher
In recent years, there has been a proliferation of sophisticated, user-friendly and accessible instruments of video data collection (e.g. mobile/cell phones and tablets) which facilitate video-based research and analysis. This paper reports on the opportunities and challenges of undertaking video analysis by reporting on the qualitative video analysis of a subset of 30 purposively selected videos from #notanurse_but, a parent-driven video campaig…
Coming ‘Home’
Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK
In this sample of 14-25-year-old patients with IBD, specifics about the disease (severity and pain) predicted poorer mental health, suggesting discussion of mental health should be part of the clinical dialogue between patient and consultant. In addition, embarrassment about their condition increased depression, anxiety, and loneliness, mediating the relationship between disease severity and well-being. Thus, it is important to consider how perce…
Working back to the future
Using data from participatory storytelling research with 65 young people, this article provides a co-created theoretical grounding for radical social work with children and young people. The problems and solutions social work should be seeking are explored in the light of resilience theories and the capability approach. The young people’s perspectives echo but extend existing resilience interventions and definitions of the capability approach, hi…
Not a nurse but more than a mother
This paper reports on the analysis of parent-recorded video diaries from a parent-driven campaign, #notanurse_but, supported by the charity WellChild. The campaign reveals the challenges that parents (predominantly mothers) face providing high level, ongoing clinical care for a son or daughter who has complex health care needs. A team of four researchers analysed 30 videos from the WellChild website, WellChild Facebook page, a dedicated #notanurs…
Stories as findings in collaborative research
Working in a participatory research project with young people who are disabled, care-experienced or otherwise disadvantaged, collaborative fiction writing was a core method of hearing and amplifying their voices. We discuss how meanings were made in this iterative process of capturing resonances in the different stages of the research, resulting in the creation of stories filtered through many different participants. Through individual and joint …
Children’s pictures of Covid-19 and measures to mitigate its spread
Objectives: To gain insight into children’s health-related knowledge and understanding of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV2) and COVID-19, and measures adopted to mitigate transmission. Design: A child-centred qualitative creative element embedded in an online mixed-methods survey of children aged 7–12 years. Setting: Children participated in the study in six countries – the UK, Australia, Sweden, Brazil, Spain and Canada…
Using methods across generations
In more recent years in geographical research there has been a trend towards ‘child-friendly’ or ‘young people-friendly’ research methods, often involving creativity and participation. Meanwhile, traditional methods such as interviews and focus groups continue to dominate research with adult participants. This paper draws and reflects on fieldnotes documented during a study which used participatory design workshops with activity-based methods to …
Parents Reaching Out to Parents
Sixty-five stakeholders participated: parents (n = 43; mothers, n = 42), Parent Champions (n = 9), Children's Centre Managers (n = 8), Children's Centre Group Leaders (n = 11), and Core Team (n = 4). An overarching theme 'Parents reaching out to parents' was supported by five sub-themes (Raising awareness and sharing knowledge; Creating connection, trust, and confidence; Flourishing in their role as a Parent Champion; Rising to the challenges; an…
It doesn't feel like our house anymore’
The study aimed to identify how medical technology impacts upon the home and life at home. Inductive auto-driven photo-elicitation or semi-structured interviews were conducted with technology-dependent children/young people (n = 2) and their family members (n = 15) from 10 families. Thematic analysis generated three themes: Altered physicality and look of the home; Altered sounds in the home; and 'It's worth it! Technology enables us to stay as a…
I feel like my house was taken away from me’
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elici…
Grounding perceptions
Introduction In recent years, there has been an increasing use of otoendoscopy in middle ear surgery. There is also increasing evidence of its usefulness as a diagnostic tool for clinicians. However, there is limited evidence on whether understanding their ear condition is of benefit to patients. This novel study sought to explore the perceptions, perspectives, and satisfaction of parents, children, and young people regarding the use of otoendosc…
“A hard-won capability”
Introduction Parents of babies who required neonatal care are responsible for managing their medicines after they are discharged home. There is wide variation in the information and amount of preparation given to parents prior to assuming this challenging task. The aim of the Parent co-Designed Drug Information for parents and Guardians Taking Neonates home (PADDINGToN) study was to explore parents' experiences of managing their babies' medicines…
Health literacy among children living with a long-term condition
Background: Little is known about the health literacy of children living with long-term conditions. This study aimed to gain insight into the life of children with a long-term condition in the context of health literacy, specifically their understanding of their health and the barriers and facilitators to sharing information about their condition with others. Design: Child-centred qualitative arts-based approach with children aged 6–12 years. Set…
Zooming’ in on Consulting with Children and Parents Remotely to Co-Create Health Information Resources
The COVID-19 pandemic altered the way many people worked. Remote and creative ways were favoured and utilised for consultation activities. In this paper, we draw attention to how we have used creative methods over the teleconferencing platform 'ZOOM' to consult with children and their parents when we were unable to consult with them face-to-face. We document a clear timeline of how we have worked together to co-create an animation and information…
Psychology (22 obras) · Sociology (20 obras) · Medicine (19 obras) · Qualitative research (16 obras) · Political science (12 obras) · Nursing (9 obras) · Computer Science (8 obras) · Health care (8 obras) · Childhood Cancer Survivors' Quality of Life (7 obras) · Children's Rights and Participation (7 obras)