The financial impact of a death in the family appears to have received little attention in literature and research on bereavement support. Reports on a recent study of the financial implications of the death of their child which shows that links between money and death represent an area of considerable importance for policy and practice. Some bereaved parents would have liked more help
The financial impact of a death in the family appears to have received little attention in literature and research on bereavement support. Reports on a recent study of the financial implications of the death of their child which shows that links between money and death represent an area of considerable importance for policy and practice. Some bereaved parents would have liked more help in thinking about money matters and dealing with financial problems.
Subject terms:
income, parents, social care provision, bereavement, death;
Children and Society, 15(4), September 2001, pp.237-252.
Publisher:
Wiley
This article seeks to define '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. Demonstrates the many different levels within the concept of 'quality' and highlights the importance of recognising and respecting that children and parents frequently value different aspects of 'quality'.
This article seeks to define '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. Demonstrates the many different levels within the concept of 'quality' and highlights the importance of recognising and respecting that children and parents frequently value different aspects of 'quality'.
Subject terms:
parents, physical disabilities, quality assurance, user views, children;
This is a summary of a rapid review that was undertaken to examine the effectiveness of behavioural interventions for sleep problems in young disabled children (up to age eight years), specifically interventions that can be carried out by parents in the home. Nineteen studies were identified, four were RCTs and 15 were before and after studies, most of which had less than 10 participants. Three
This is a summary of a rapid review that was undertaken to examine the effectiveness of behavioural interventions for sleep problems in young disabled children (up to age eight years), specifically interventions that can be carried out by parents in the home. Nineteen studies were identified, four were RCTs and 15 were before and after studies, most of which had less than 10 participants. Three of the four RCTs had been conducted in a UK setting. The majority of participants had learning disabilities ranging from mild to severe and had serious sleep problems of long-standing duration. The studies are grouped by type of intervention in the following categories: non-specific behavioural interventions (ie those not focusing on a single behavioural intervention; extinction; sleep restriction; and faded bedtime with response cost. Appendices include details of the search strategy used, details of excluded papers and quality assessment of randomised controlled trials. The review was funded by the Centre for Excellence and Outcomes in Children and Young People's Services.
... development may be compromised in one or more areas by their impairment, have long been recognised. For example, how do we view the assessment of self care skills for a child with a degenerative condition, or the health record of a child with a life limiting illness? In addition, the LAC system does not address the issue of outcomes for parents/carers. Research has shown that parents with disabled children provide extra care, over and above that of ‘the reasonable parent’, and that parents with disabled children are particularly vulnerable to stress, which is often produced by trying to meet the extra demands of caring for the child without the necessary resources and support. Parental stress in turn impinges upon children’s development. Thus, in looking at outcomes of services for disabled children it is necessary to consider outcomes for both parents and child, identifying where these concur and where they differ. This study built on the LAC framework, and on work carried out here in SPRU on outcomes for disabled adults and their carers, to investigate the views of disabled children and young people and their parents on their desired outcomes from social care services. The results will inform
The Looked after Children (LAC) system provides an initial framework within which to investigate such outcomes: defining the seven dimensions on which progress should be assessed (health, education, identity, family and social relationships, social presentation, emotional and behavioural development, and self care skills). However, problems of its applicability to disabled children, whose development may be compromised in one or more areas by their impairment, have long been recognised. For example, how do we view the assessment of self care skills for a child with a degenerative condition, or the health record of a child with a life limiting illness? In addition, the LAC system does not address the issue of outcomes for parents/carers. Research has shown that parents with disabled children provide extra care, over and above that of ‘the reasonable parent’, and that parents with disabled children are particularly vulnerable to stress, which is often produced by trying to meet the extra demands of caring for the child without the necessary resources and support. Parental stress in turn impinges upon children’s development. Thus, in looking at outcomes of services for disabled children it is necessary to consider outcomes for both parents and child, identifying where these concur and where they differ. This study built on the LAC framework, and on work carried out here in SPRU on outcomes for disabled adults and their carers, to investigate the views of disabled children and young people and their parents on their desired outcomes from social care services. The results will inform the development of systems of outcome assessment applicable to disabled children and their families.
Subject terms:
looked after children, outcomes, parents, young people, access to services, children, disabilities;
... development may be compromised in one or more areas by their impairment, have long been recognised. For example, how do we view the assessment of self care skills for a child with a degenerative condition, or the health record of a child with a life limiting illness? In addition, the LAC system does not address the issue of outcomes for parents/carers. Research has shown that parents with disabled children provide extra care, over and above that of ‘the reasonable parent’, and that parents with disabled children are particularly vulnerable to stress, which is often produced by trying to meet the extra demands of caring for the child without the necessary resources and support. Parental stress in turn impinges upon children’s development. Thus, in looking at outcomes of services for disabled children it is necessary to consider outcomes for both parents and child, identifying where these concur and where they differ. This study built on the LAC framework, and on work carried out here in SPRU on outcomes for disabled adults and their carers, to investigate the views of disabled children and young people and their parents on their desired outcomes from social care services. The results will inform
The Looked after Children (LAC) system provides an initial framework within which to investigate such outcomes: defining the seven dimensions on which progress should be assessed (health, education, identity, family and social relationships, social presentation, emotional and behavioural development, and self care skills). However, problems of its applicability to disabled children, whose development may be compromised in one or more areas by their impairment, have long been recognised. For example, how do we view the assessment of self care skills for a child with a degenerative condition, or the health record of a child with a life limiting illness? In addition, the LAC system does not address the issue of outcomes for parents/carers. Research has shown that parents with disabled children provide extra care, over and above that of ‘the reasonable parent’, and that parents with disabled children are particularly vulnerable to stress, which is often produced by trying to meet the extra demands of caring for the child without the necessary resources and support. Parental stress in turn impinges upon children’s development. Thus, in looking at outcomes of services for disabled children it is necessary to consider outcomes for both parents and child, identifying where these concur and where they differ. This study built on the LAC framework, and on work carried out here in SPRU on outcomes for disabled adults and their carers, to investigate the views of disabled children and young people and their parents on their desired outcomes from social care services. The results will inform the development of systems of outcome assessment applicable to disabled children and their families.
Subject terms:
looked after children, outcomes, parents, young people, access to services, children, disabilities;
Inflammatory bowel disease (IBD) is a chronic illness which has two main forms, Crohn’s disease and ulcerative colitis. The condition can have wide ranging effects on everyday life, and is likely to pose problems for parents bringing up children. However, it is striking that there has been no previous research on the experiences of parents who have IBD nor on the effects on their children. This study, funded by a NACC Social and Psychological Research Award, set out to investigate these topics in interviews and focus groups with parents who have IBD. The key findings were: When parents were experiencing symptoms of diarrhoea or incontinence, caring for young children was difficult, social activities and holidays were restricted, and taking children to and from school or attending school events was problematic. Pain and tiredness made parents more likely to be irritable with their children and to lack the energy needed to look after younger children.Having to spend time in hospital caused problems for parents of young children. Parents noticed both positive and negative effects on their children. On the one hand children seemed to be more caring and understanding of illness. On the other, they were anxious when the parent was ill or in hospital, and reacted with frustration or anger to restrictions imposed on their own activities by the parent’s illness. When they were unwell, most parents turned to family and friends for support, but they received very little support from health and social services. They wanted these services to provide more practical support, such as a crisis
Inflammatory bowel disease (IBD) is a chronic illness which has two main forms, Crohn’s disease and ulcerative colitis. The condition can have wide ranging effects on everyday life, and is likely to pose problems for parents bringing up children. However, it is striking that there has been no previous research on the experiences of parents who have IBD nor on the effects on their children. This study, funded by a NACC Social and Psychological Research Award, set out to investigate these topics in interviews and focus groups with parents who have IBD. The key findings were: When parents were experiencing symptoms of diarrhoea or incontinence, caring for young children was difficult, social activities and holidays were restricted, and taking children to and from school or attending school events was problematic. Pain and tiredness made parents more likely to be irritable with their children and to lack the energy needed to look after younger children.Having to spend time in hospital caused problems for parents of young children. Parents noticed both positive and negative effects on their children. On the one hand children seemed to be more caring and understanding of illness. On the other, they were anxious when the parent was ill or in hospital, and reacted with frustration or anger to restrictions imposed on their own activities by the parent’s illness. When they were unwell, most parents turned to family and friends for support, but they received very little support from health and social services. They wanted these services to provide more practical support, such as a crisis support service; more information about the effects of IBD on family life; more opportunities for children and partners to meet others in their situation; and to take family circumstances into account, especially when arranging treatment.
Subject terms:
incontinence, pain, parents, social care provision, children, diseases;
This study conducted two quantitative surveys of parents with Inflammatory bowel disease (IBD) and their children. The study aimed to: describe parents' difficulties with parenting tasks, psychological distress and the support they received in relation to parenting; to describe children's responsibilities within the home, social activities with peers, and relationship with parents; to identify parents' and children's met and unmet support needs; and to investigate factors associated with any psychological distress experienced by parents with IBD and any emotional and behavioural difficulties experienced by their children. A summary of the key findings is presented.
This study conducted two quantitative surveys of parents with Inflammatory bowel disease (IBD) and their children. The study aimed to: describe parents' difficulties with parenting tasks, psychological distress and the support they received in relation to parenting; to describe children's responsibilities within the home, social activities with peers, and relationship with parents; to identify parents' and children's met and unmet support needs; and to investigate factors associated with any psychological distress experienced by parents with IBD and any emotional and behavioural difficulties experienced by their children. A summary of the key findings is presented.
Subject terms:
long term conditions, mental health, needs, parental role, parent-child relations, parenting, parents, unmet need, behaviour;
Health and Social Care in the Community, 13(5), September 2005, pp.478-487.
Publisher:
Wiley
The article reports the findings of a qualitative research project that aimed to identify the desires and aspirations of children and young people with complex health care needs (CHNs), as well as those who do not use speech for communication (NS) and their parents. Fifty families participated in this study; 26 families had a child with CHNs and 24 had a child with NS. Semistructured interviews were carried out with 50 parents, 18 children and 17 other informants (teachers and other non-parent carers who knew the child well). A range of visual or non-verbal techniques were used to facilitate interviews with children. The research found that, while children and their parents aspired to the same sort of outcomes as those of non-disabled children, such as to have friends, interests and future
The article reports the findings of a qualitative research project that aimed to identify the desires and aspirations of children and young people with complex health care needs (CHNs), as well as those who do not use speech for communication (NS) and their parents. Fifty families participated in this study; 26 families had a child with CHNs and 24 had a child with NS. Semistructured interviews were carried out with 50 parents, 18 children and 17 other informants (teachers and other non-parent carers who knew the child well). A range of visual or non-verbal techniques were used to facilitate interviews with children. The research found that, while children and their parents aspired to the same sort of outcomes as those of non-disabled children, such as to have friends, interests and future independence, the specific meaning they attached to certain outcomes and the way they prioritised aspirations differed. These findings have implications for the ways in which outcomes are defined and measured, and the role of services in achieving these outcomes.
Subject terms:
long term conditions, non-verbal communication, outcomes, parents, user views, young people, communication disorders, children;
Journal of Integrated Care, 11(1), February 2003, pp.9-15.
Publisher:
Emerald
The authors describe the rationale for key workers services for disabled children, factors to consider in developing such services, the role of key workers, how a key worker service is operating in Leeds and the impact it has had for families who received it.
The authors describe the rationale for key workers services for disabled children, factors to consider in developing such services, the role of key workers, how a key worker service is operating in Leeds and the impact it has had for families who received it.
Subject terms:
interagency cooperation, keyworkers, multidisciplinary services, parents, physical disabilities, social care provision, children, families;
Report of project based in York intended to improve communication between health and education staff about children with a chronic illness and physical disability. Health and education staff, parents and children were surveyed and an action plan for creating better systems for communication drawn up.
Report of project based in York intended to improve communication between health and education staff about children with a chronic illness and physical disability. Health and education staff, parents and children were surveyed and an action plan for creating better systems for communication drawn up.
Subject terms:
long term conditions, parents, physical disabilities, teachers, children, communication, education, health care, health professionals;