Patricia Sloper
Biographic Data
| ID | 1735322 |
|---|---|
| NAME | Patricia Sloper |
| GIVEN NAMES | Patricia |
| FAMILY NAME | Sloper |
| SIGNATURE | SLOPER P |
| AFFILIATIONS | University of York |
| VERIFIED | No |
| TOTAL WORKS | 30 |
| TOTAL CITATIONS | 74 |
| AUTHOR COUNT | 30 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 1984 |
| LATEST PUBLICATION YEAR | 2011 |
| H-INDEX | 5 |
Making choices in my life: Listening to the ideas and experiences of young people in the UK who communicate non-verbally
Every Child Matters outcomes: What Do They Mean for Disabled Children and Young People
To date, little attention has been paid to the appropriateness of the Every Child Matters (ECM) outcomes framework to disabled children. 1 This article reports findings from a research project which sought the views of disabled children and their parents about their desired outcomes. Twenty‐nine children and 90 parents were interviewed. The findings indicate that ECM outcomes are appropriate to disabled children but can have different meanings. I…
Supporting the Participation of Disabled Children and Young People in Decision‐making
Increasing children's and young people's participation in decisions, about their own care and about service development, is a policy priority. Although in general participation is increasing, disabled children are less likely to be involved than non‐disabled children and it is unclear to what extent children with complex needs or communication impairments are being included in participation activities. This article presents research exploring fac…
The Integrated Children's System and disabled children
The Integrated Children's System (ICS) is premised on a single approach to assessment/review, ideally providing a more coherent, comprehensive and efficient system of electronic information recording and sharing among different groups of practitioners. Despite its holistic aims for all children in need, questions have been raised about the use of ICS with certain groups of children, especially those who do not follow normative patterns, such as d…
Exploring health‐related experiences of children and young people with congenital heart disease
Objective To determine the health‐related experiences of children with congenital heart disease. Design Qualitative, semi‐structured interviews. Participants A purposive sample ( N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. Results The main themes identified included: physical limitations of their condition; restri…
Desired Outcomes for Children and Adolescents with Autistic Spectrum Disorders
Within children's services, frameworks for assessing outcomes have been developed in the absence of consultation with children with autistic spectrum disorders and their parents. The research reported here worked with parents, other key adults and children with autistic spectrum disorders to identify desired outcomes. It found similarities with non‐autistic children in terms of the broad types of outcomes desired. However, the presence of autism …
Key Worker Services for Disabled Children: The Views of Parents
This study reports the findings from 68 interviews with parents of disabled children who are users of seven key worker schemes in England and Wales. The interviews which lasted for one hour each, were tape‐recorded, transcribed and analysed according to both a priori and emerging themes. The findings from this study have implications for policy and practice, for example, the necessity of protected time for key workers, the necessity of conveying …
The Experiences of Sleep Disruption in Families of Technology‐dependent Children Living at Home
This paper examines the sleep disruption experienced by 36 families of technology‐dependent children living at home in the United Kingdom. The paper begins with an overview of the qualitative study in which parents' experiences of sleep disruption emerged as a major theme. We then describe the nature of and reasons for the sleep disruption, the help families received with care overnight, and the effects of sleep disruption on parents in particula…
Key worker services for disabled children: The views of staff
Provision of 'key workers' for disabled children and their families, working across health, education, and social services, has been recommended in the Children's National Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N=50), managers (N=7) and members of multi-agency steering groups (N=32) from seven key…
Doing research with children and young people who do not use speech for communication
Despite emphasis in policy on participation of disabled children,1 we still know relatively little about how to obtain the views of disabled children with significant communication impairment and their views are often overlooked in planning and service provision. This article describes how the views of children who do not use speech were accessed in research aiming to identify disabled children and young people's priorities regarding outcomes of …
Using a model of group psychotherapy to support social research on sensitive topics
This article describes the exploratory use of professional therapeutic support by social researchers working on a sensitive topic. Talking to recently bereaved parents about the financial implications of their child's death was expected to be demanding work, and the research design included access to an independent psychotherapeutic service. Using this kind of professional support is rare within the general social research community, and it is us…
Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication
Within recent policies and initiatives, there is a growing emphasis on outcomes-focused practice and user-defined outcomes to ensure that the children and families most at risk of social exclusion have every opportunity to build successful and independent lives. However, we still know little about what children and young people with disabilities consider constitutes a good quality of life. The present paper reports the findings of a qualitative r…
Families' experiences of caring for technology-dependent children: A temporal perspective
In the present study, families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological', 'social' and 'natural' rhythms and routines around which the families' lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding…
Listening and responding? Children's participation in health care within England
Listening and responding? Children's participation in health care within England ANITA FRANKLIN AND PATRICIA SLOPER Social Policy Research Unit, University of York Introduction This article examines recent health policy developments in England in relation to children's rights under Article 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). It draws on practice and research litera- ture to explore evidence regarding: ch…
Facilitators and barriers for co‐ordinated multi‐agency services
Background Greater collaboration between agencies and the need to improve interagency working is a key policy priority. The lack of co‐ordinated multi‐agency working in children's services has been highlighted in many research studies. Evidence on the facilitators of and barriers to such working and the outcomes for children and families of co‐ordinated services is important to inform local developments. Methods Literature on multi‐agency working…
Money matters and bereavement support
Participation of disabled children in individual decisions about their lives and in public decisions about service development
A literature review was carried out to establish what evidence exists about disabled children's participation in decision‐making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promot…
Having a say in health: Involving young people with a chronic illness or physical disability in local health services development
Increasing attention is being paid to involving users in local NHS service development, and to involving young people as users in their own right. However, we know little about the views and experiences of young participants, especially those with a chronic illness or physical disability, which could inform more effective approaches to their involvement. The paper reports on research investigating the views of young patients and staff who have ta…
Participation and partnerships in research: Listening to the ideas and experiences of a parent-carer
Recent health care policy directives advocate partnerships between researchers and service users in setting the research agenda and conducting research. This paper seeks to explore the meaning and reality of user participation from the perspective of a parent-carer and his experiences of being involved in three recent research projects. Important issues, such as the need for practical and emotional support and respect for user partners, are discu…
The Golden Freeway: A preliminary evaluation of a pilot study advancing information technology as a social intervention for boys with Duchenne muscular dystrophy and their families
Established information technology was used in an attempt to reduce social isolation by providing each family who had a child with Duchenne muscular dystrophy with a personal computer, and e-mail and Internet connectivity. Seventy-four of the 88 families in the north of England (i.e. Cumbria, Durham, Northumberland, Teesside, and Tyne and Wear) with a boy with Duchenne muscular dystrophy who was diagnosed before January 2000 had the equipment ins…
Information that informs rather than alienates families with disabled children: Developing a model of good practice
The importance to families with disabled children of relevant and accessible information about services has been illustrated in numerous studies and was re-emphasised by the Department of Health's 'quality protects' initiative. Indeed, the provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory pr…
When a Child Dies: Money Matters
The financial implications of a death are rarely discussed--indeed, in the case of a child's death, almost never. This article describes an exploratory study conducted in the United Kingdom in response to the belief of staff in a children's hospice that for many bereaved parents, the nature and extent of their financial problems were obstructing the effectiveness of support and help available to deal with emotional aspects of grief and loss. Find…
Supporting pupils with special health needs in mainstream schools: Policy and practice
Education policy favouring ‘inclusion’, together with medical advances, mean that a growing number of pupils in mainstream schools may have health‐related support needs in respect of a chronic illness or physical disability. Data from an empirical research study investigating these needs and carried out between 1996 and 1998 are used to reflect on the position of this group of pupils within policy guidance on special educational needs (SEN) and m…
Quality in services for disabled children and their families: What Can Theory, Policy and Research on Children's and Parents' Views Tell Us
Many discourses surround the concept of 'service quality', however, it continues to remain partial and ambiguous. This paper seeks to unpack 'quality' in services for disabled children and their families. Theoretical models are initially reviewed and then considered in relation to key policy guidelines, empirical data drawing upon parents' and children's experiences of 'quality' in services are presented. This paper demonstrates the many differen…
Experiences and support needs of siblings of children with cancer: Needs of siblings of children with cancer
The diagnosis and treatment of childhood cancer places considerable demands on family life. Siblings have been shown to be at risk for development of emotional and behavioural problems. However, most studies have relied on parents' reports, and less is known about siblings' own views of their experiences. This paper presents findings from interviews with 94 siblings of children with cancer, at 6 and 18 months after diagnosis of the illness. Resul…
Disputed diagnoses: The cases of RSI and childhood cancer
Families' experiences of caring for technology-dependent children: A temporal perspective
In the present study, families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological', 'social' and 'natural' rhythms and routines around which the families' lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding…
Quality in services for disabled children and their families: What Can Theory, Policy and Research on Children's and Parents' Views Tell Us
Many discourses surround the concept of 'service quality', however, it continues to remain partial and ambiguous. This paper seeks to unpack 'quality' in services for disabled children and their families. Theoretical models are initially reviewed and then considered in relation to key policy guidelines, empirical data drawing upon parents' and children's experiences of 'quality' in services are presented. This paper demonstrates the many differen…
Using a model of group psychotherapy to support social research on sensitive topics
This article describes the exploratory use of professional therapeutic support by social researchers working on a sensitive topic. Talking to recently bereaved parents about the financial implications of their child's death was expected to be demanding work, and the research design included access to an independent psychotherapeutic service. Using this kind of professional support is rare within the general social research community, and it is us…
Listening and responding? Children's participation in health care within England
Listening and responding? Children's participation in health care within England ANITA FRANKLIN AND PATRICIA SLOPER Social Policy Research Unit, University of York Introduction This article examines recent health policy developments in England in relation to children's rights under Article 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). It draws on practice and research litera- ture to explore evidence regarding: ch…
The Integrated Children's System and disabled children
The Integrated Children's System (ICS) is premised on a single approach to assessment/review, ideally providing a more coherent, comprehensive and efficient system of electronic information recording and sharing among different groups of practitioners. Despite its holistic aims for all children in need, questions have been raised about the use of ICS with certain groups of children, especially those who do not follow normative patterns, such as d…
Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication
Within recent policies and initiatives, there is a growing emphasis on outcomes-focused practice and user-defined outcomes to ensure that the children and families most at risk of social exclusion have every opportunity to build successful and independent lives. However, we still know little about what children and young people with disabilities consider constitutes a good quality of life. The present paper reports the findings of a qualitative r…
Information that informs rather than alienates families with disabled children: Developing a model of good practice
The importance to families with disabled children of relevant and accessible information about services has been illustrated in numerous studies and was re-emphasised by the Department of Health's 'quality protects' initiative. Indeed, the provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory pr…
Carers’ experiences of hospital discharge and continuing care in the community
This paper presents the findings of a study of carers' perspectives on discharge procedures and continuing care arrangements for adults aged 18-65 with physical and complex disabilities. Interviews were conducted with carers of people discharged from younger disabled units (YDUs) and hospital settings. The emphasis carers place on the need to be informed and involved in the discharge planning process is described, and the adequacy of continuing c…
Participation and partnerships in research: Listening to the ideas and experiences of a parent-carer
Recent health care policy directives advocate partnerships between researchers and service users in setting the research agenda and conducting research. This paper seeks to explore the meaning and reality of user participation from the perspective of a parent-carer and his experiences of being involved in three recent research projects. Important issues, such as the need for practical and emotional support and respect for user partners, are discu…
Making choices in my life: Listening to the ideas and experiences of young people in the UK who communicate non-verbally
Key worker services for disabled children: The views of staff
Provision of 'key workers' for disabled children and their families, working across health, education, and social services, has been recommended in the Children's National Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N=50), managers (N=7) and members of multi-agency steering groups (N=32) from seven key…
Experiences and support needs of siblings of children with cancer: Needs of siblings of children with cancer
The diagnosis and treatment of childhood cancer places considerable demands on family life. Siblings have been shown to be at risk for development of emotional and behavioural problems. However, most studies have relied on parents' reports, and less is known about siblings' own views of their experiences. This paper presents findings from interviews with 94 siblings of children with cancer, at 6 and 18 months after diagnosis of the illness. Resul…
The Relationship Between Maternal Ratings of First Word Vocabulary and Reynell Language Scores
S ummary . Forty‐four mothers of children with Down's syndrome (CA mean 61.5 months, range 37.90; MA mean 36.4 months, range 11.63) checked off the words used by their children from a list of 108 ‘topic words’ taken from the First Word Language Programme (Gillham, 1979). Significant correlations were found with Reynell Expressive Language Age ( r = 0.87) and Verbal Comprehension Age ( r = 0.76). The importance of formal methods of integrating par…
Factors Related to the Academic Attainments of Children With Down's Syndrome
S ummary . The attainments in reading, number and writing skills, of 117 children with Down's syndrome, aged 6 to 14 years, were assessed using checklists completed by teachers. In a study of child and family functioning a wide range of variables was measured and the relationships of these to academic attainments were investigated using multivariable analysis. The children's mental age scores were most strongly related to academic attainments sco…
Is Health Locus of Control Related to Health Education Activity
Analysis of responses of 1922 teachers indicated that Multidimensional Health Locus of Control scale was a suitable instrument for assessing their health beliefs. The results suggest that health belief is not linked to whether teachers teach about cancer and, by implication, health generally
Carers’ experiences of hospital discharge and continuing care in the community
This paper presents the findings of a study of carers' perspectives on discharge procedures and continuing care arrangements for adults aged 18-65 with physical and complex disabilities. Interviews were conducted with carers of people discharged from younger disabled units (YDUs) and hospital settings. The emphasis carers place on the need to be informed and involved in the discharge planning process is described, and the adequacy of continuing c…
Disputed diagnoses: The cases of RSI and childhood cancer
Experiences and support needs of siblings of children with cancer: Needs of siblings of children with cancer
The diagnosis and treatment of childhood cancer places considerable demands on family life. Siblings have been shown to be at risk for development of emotional and behavioural problems. However, most studies have relied on parents' reports, and less is known about siblings' own views of their experiences. This paper presents findings from interviews with 94 siblings of children with cancer, at 6 and 18 months after diagnosis of the illness. Resul…
Supporting pupils with special health needs in mainstream schools: Policy and practice
Education policy favouring ‘inclusion’, together with medical advances, mean that a growing number of pupils in mainstream schools may have health‐related support needs in respect of a chronic illness or physical disability. Data from an empirical research study investigating these needs and carried out between 1996 and 1998 are used to reflect on the position of this group of pupils within policy guidance on special educational needs (SEN) and m…
Quality in services for disabled children and their families: What Can Theory, Policy and Research on Children's and Parents' Views Tell Us
Many discourses surround the concept of 'service quality', however, it continues to remain partial and ambiguous. This paper seeks to unpack 'quality' in services for disabled children and their families. Theoretical models are initially reviewed and then considered in relation to key policy guidelines, empirical data drawing upon parents' and children's experiences of 'quality' in services are presented. This paper demonstrates the many differen…
Information that informs rather than alienates families with disabled children: Developing a model of good practice
The importance to families with disabled children of relevant and accessible information about services has been illustrated in numerous studies and was re-emphasised by the Department of Health's 'quality protects' initiative. Indeed, the provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory pr…
When a Child Dies: Money Matters
The financial implications of a death are rarely discussed--indeed, in the case of a child's death, almost never. This article describes an exploratory study conducted in the United Kingdom in response to the belief of staff in a children's hospice that for many bereaved parents, the nature and extent of their financial problems were obstructing the effectiveness of support and help available to deal with emotional aspects of grief and loss. Find…
Having a say in health: Involving young people with a chronic illness or physical disability in local health services development
Increasing attention is being paid to involving users in local NHS service development, and to involving young people as users in their own right. However, we know little about the views and experiences of young participants, especially those with a chronic illness or physical disability, which could inform more effective approaches to their involvement. The paper reports on research investigating the views of young patients and staff who have ta…
Participation and partnerships in research: Listening to the ideas and experiences of a parent-carer
Recent health care policy directives advocate partnerships between researchers and service users in setting the research agenda and conducting research. This paper seeks to explore the meaning and reality of user participation from the perspective of a parent-carer and his experiences of being involved in three recent research projects. Important issues, such as the need for practical and emotional support and respect for user partners, are discu…
The Golden Freeway: A preliminary evaluation of a pilot study advancing information technology as a social intervention for boys with Duchenne muscular dystrophy and their families
Established information technology was used in an attempt to reduce social isolation by providing each family who had a child with Duchenne muscular dystrophy with a personal computer, and e-mail and Internet connectivity. Seventy-four of the 88 families in the north of England (i.e. Cumbria, Durham, Northumberland, Teesside, and Tyne and Wear) with a boy with Duchenne muscular dystrophy who was diagnosed before January 2000 had the equipment ins…
Facilitators and barriers for co‐ordinated multi‐agency services
Background Greater collaboration between agencies and the need to improve interagency working is a key policy priority. The lack of co‐ordinated multi‐agency working in children's services has been highlighted in many research studies. Evidence on the facilitators of and barriers to such working and the outcomes for children and families of co‐ordinated services is important to inform local developments. Methods Literature on multi‐agency working…
Money matters and bereavement support
Participation of disabled children in individual decisions about their lives and in public decisions about service development
A literature review was carried out to establish what evidence exists about disabled children's participation in decision‐making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promot…
Doing research with children and young people who do not use speech for communication
Despite emphasis in policy on participation of disabled children,1 we still know relatively little about how to obtain the views of disabled children with significant communication impairment and their views are often overlooked in planning and service provision. This article describes how the views of children who do not use speech were accessed in research aiming to identify disabled children and young people's priorities regarding outcomes of …
Using a model of group psychotherapy to support social research on sensitive topics
This article describes the exploratory use of professional therapeutic support by social researchers working on a sensitive topic. Talking to recently bereaved parents about the financial implications of their child's death was expected to be demanding work, and the research design included access to an independent psychotherapeutic service. Using this kind of professional support is rare within the general social research community, and it is us…
Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication
Within recent policies and initiatives, there is a growing emphasis on outcomes-focused practice and user-defined outcomes to ensure that the children and families most at risk of social exclusion have every opportunity to build successful and independent lives. However, we still know little about what children and young people with disabilities consider constitutes a good quality of life. The present paper reports the findings of a qualitative r…
Families' experiences of caring for technology-dependent children: A temporal perspective
In the present study, families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological', 'social' and 'natural' rhythms and routines around which the families' lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding…
Listening and responding? Children's participation in health care within England
Listening and responding? Children's participation in health care within England ANITA FRANKLIN AND PATRICIA SLOPER Social Policy Research Unit, University of York Introduction This article examines recent health policy developments in England in relation to children's rights under Article 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). It draws on practice and research litera- ture to explore evidence regarding: ch…
The Experiences of Sleep Disruption in Families of Technology‐dependent Children Living at Home
This paper examines the sleep disruption experienced by 36 families of technology‐dependent children living at home in the United Kingdom. The paper begins with an overview of the qualitative study in which parents' experiences of sleep disruption emerged as a major theme. We then describe the nature of and reasons for the sleep disruption, the help families received with care overnight, and the effects of sleep disruption on parents in particula…
Key worker services for disabled children: The views of staff
Provision of 'key workers' for disabled children and their families, working across health, education, and social services, has been recommended in the Children's National Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N=50), managers (N=7) and members of multi-agency steering groups (N=32) from seven key…
Exploring health‐related experiences of children and young people with congenital heart disease
Objective To determine the health‐related experiences of children with congenital heart disease. Design Qualitative, semi‐structured interviews. Participants A purposive sample ( N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. Results The main themes identified included: physical limitations of their condition; restri…
Desired Outcomes for Children and Adolescents with Autistic Spectrum Disorders
Within children's services, frameworks for assessing outcomes have been developed in the absence of consultation with children with autistic spectrum disorders and their parents. The research reported here worked with parents, other key adults and children with autistic spectrum disorders to identify desired outcomes. It found similarities with non‐autistic children in terms of the broad types of outcomes desired. However, the presence of autism …
Psychology (28 works) · Medicine (16 works) · Family and Disability Support Research (15 works) · Developmental psychology (14 works) · Political science (13 works) · Nursing (11 works) · Sociology (10 works) · Healthcare innovation and challenges (9 works) · Public relations (9 works) · Business (7 works)