Journal of Applied Research in Intellectual Disabilities, 20(5), September 2007, pp.475-482.
Publisher:
Wiley
Although treatment acceptability scales in intellectual and developmental disabilities research have been used in large- and small-scale applications, large-scale application has been limited to analogue (i.e. contrived) investigations. This study extended the application of treatment acceptability by assessing a large sample of care givers’ perceptions of treatment for children with cerebral palsy (CP) in a real-world setting and tested if responses differed across child characteristics, type of medical service or respondent demographics. One hundred and fifty four care givers’ for children with CP rated the acceptability of treatments and related medical services by clinicians working in a multi-disciplinary children's specialty setting in the United States using Kazdin's (Journal of Applied Behavior Analysis, 13, 1980, 259) Treatment Evaluation Inventory. There were significant differences between male and female respondents’ ratings of treatment acceptability. There were no other significant differences for caregiver ratings in relation to child characteristics, type of appointment, severity of CP or other respondent demographic characteristics. Mothers and fathers of children with developmental disabilities may differ in their perceptions of the acceptability of medical treatment services for children with developmental disabilities. Future studies addressing treatment acceptability should expand the scope of demographic information assessed and include items specific to the roles respondents have in providing and coordinating therapeutic regimens for their children's medical needs.
Although treatment acceptability scales in intellectual and developmental disabilities research have been used in large- and small-scale applications, large-scale application has been limited to analogue (i.e. contrived) investigations. This study extended the application of treatment acceptability by assessing a large sample of care givers’ perceptions of treatment for children with cerebral palsy (CP) in a real-world setting and tested if responses differed across child characteristics, type of medical service or respondent demographics. One hundred and fifty four care givers’ for children with CP rated the acceptability of treatments and related medical services by clinicians working in a multi-disciplinary children's specialty setting in the United States using Kazdin's (Journal of Applied Behavior Analysis, 13, 1980, 259) Treatment Evaluation Inventory. There were significant differences between male and female respondents’ ratings of treatment acceptability. There were no other significant differences for caregiver ratings in relation to child characteristics, type of appointment, severity of CP or other respondent demographic characteristics. Mothers and fathers of children with developmental disabilities may differ in their perceptions of the acceptability of medical treatment services for children with developmental disabilities. Future studies addressing treatment acceptability should expand the scope of demographic information assessed and include items specific to the roles respondents have in providing and coordinating therapeutic regimens for their children's medical needs.
Subject terms:
parents, user views, cerebral palsy, children, health care;
Child: Care, Health and Development, 39(1), 2013, pp.69-80.
Publisher:
Wiley
Background Several studies have investigated preferences and experiences of adolescents with different chronic conditions and their parents. Some have included the provider's perspective. Studies comparing the three perspectives on satisfaction with (transitional) care for different chronic conditions, however, are lacking. The main aim of this paper was to explore differences and similarities in perspectives between adolescents with chronic conditions, their parents and providers on transitional care. A secondary aim was to explore the extent to which such perspectives are disease-specific.
Methods: This quantitative study included 127 adolescents with juvenile rheumatoid arthritis (JRA), neuromuscular disorder with chronic ventilation (NMD), or diabetes Type I; 166 parents; and 19 care providers. To assess the experiences and perceptions of adolescents and parents on transitional care, we used the ‘Mind the Gap’ instrument. The survey for providers included a checklist of shortcomings in transitional care.
Results: Adolescents rate current care significantly worse than parents on opportunities to make their own decisions and be seen without parents present. Adolescents also rated providers' current social skills lower than parents. Adolescents are more satisfied than their parents about transitional care process aspects such as co-ordination and communication between providers, but both groups indicated that the care process offers most room for improvement. Providers reported other aspects such as adolescents' lack of responsibility with regard to self-care and parents' difficulties with ceding control to their children. When looking at the three disease groups – JRA, NMD, diabetes, we found only small differences. According to providers, shortcomings in the care process with respect to guidelines, protocols and co-ordination are most prevalent.
Conclusion: Adolescents, parents and providers all report that there is room for improvement with regard to aspects of the care delivery
(Publisher abstract)
Background Several studies have investigated preferences and experiences of adolescents with different chronic conditions and their parents. Some have included the provider's perspective. Studies comparing the three perspectives on satisfaction with (transitional) care for different chronic conditions, however, are lacking. The main aim of this paper was to explore differences and similarities in perspectives between adolescents with chronic conditions, their parents and providers on transitional care. A secondary aim was to explore the extent to which such perspectives are disease-specific.
Methods: This quantitative study included 127 adolescents with juvenile rheumatoid arthritis (JRA), neuromuscular disorder with chronic ventilation (NMD), or diabetes Type I; 166 parents; and 19 care providers. To assess the experiences and perceptions of adolescents and parents on transitional care, we used the ‘Mind the Gap’ instrument. The survey for providers included a checklist of shortcomings in transitional care.
Results: Adolescents rate current care significantly worse than parents on opportunities to make their own decisions and be seen without parents present. Adolescents also rated providers' current social skills lower than parents. Adolescents are more satisfied than their parents about transitional care process aspects such as co-ordination and communication between providers, but both groups indicated that the care process offers most room for improvement. Providers reported other aspects such as adolescents' lack of responsibility with regard to self-care and parents' difficulties with ceding control to their children. When looking at the three disease groups – JRA, NMD, diabetes, we found only small differences. According to providers, shortcomings in the care process with respect to guidelines, protocols and co-ordination are most prevalent.
Conclusion: Adolescents, parents and providers all report that there is room for improvement with regard to aspects of the care delivery process in transitional care. With respect to disease-specific issues we only found small differences.
(Publisher abstract)
Subject terms:
young people, service transitions, long term conditions, parents, user views, carers, health care;
Parenting a child with complex health/palliative care needs is wide ranging. Family-centred practices place parents at the heart of the ongoing care of these children, and therefore it makes sense that their views and experiences should be central to research within the field. Despite this assertion, little guidance exists as to how best to involve parents in research and how to address the subsequent complexities that can emerge following involvement. This paper draws on the experiences of two children's nurses who have carried out qualitative doctoral research studies in child healthcare. Each study involved data collection using in-depth interviews with parents who were caring, or had cared, for their child. One study involved caring for a child with complex needs and the other bereaved parents who had cared for their child at the end of life. Based on the experiences of completing these studies, some of the practical and ethical issues inherent in carrying out research with parents is discussed. Suggestions on how these issues may be managed by novice researchers are outlined and pre-emptive strategies reported. Issues that can emerge by researchers when accessing the field (A), being
(Publisher abstract)
Parenting a child with complex health/palliative care needs is wide ranging. Family-centred practices place parents at the heart of the ongoing care of these children, and therefore it makes sense that their views and experiences should be central to research within the field. Despite this assertion, little guidance exists as to how best to involve parents in research and how to address the subsequent complexities that can emerge following involvement. This paper draws on the experiences of two children's nurses who have carried out qualitative doctoral research studies in child healthcare. Each study involved data collection using in-depth interviews with parents who were caring, or had cared, for their child. One study involved caring for a child with complex needs and the other bereaved parents who had cared for their child at the end of life. Based on the experiences of completing these studies, some of the practical and ethical issues inherent in carrying out research with parents is discussed. Suggestions on how these issues may be managed by novice researchers are outlined and pre-emptive strategies reported. Issues that can emerge by researchers when accessing the field (A), being in the field (B), closing the relationship (C) and during data analysis and debriefing (D) are discussed.
(Publisher abstract)
Subject terms:
parents, research methods, interviewing, user views, ethics, health care, children;
Journal of Social Service Research, 39(1), 2013, pp.16-37.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
Lesbian patients and their families may be exposed to discriminatory practices in the health care system. This qualitative study of 57 Midwestern lesbian parents used open- and closed-ended questions to examine the experiences the respondents had with their primary and secondary health care providers. Four themes emerged from the data: systemic barriers to health care, coming out to providers,
(Publisher abstract)
Lesbian patients and their families may be exposed to discriminatory practices in the health care system. This qualitative study of 57 Midwestern lesbian parents used open- and closed-ended questions to examine the experiences the respondents had with their primary and secondary health care providers. Four themes emerged from the data: systemic barriers to health care, coming out to providers, seeking lesbian, gay, bisexual, and transgender-friendly health care providers, and concern about mistreatment and prejudice within the health care system. Implications for service delivery, health care education, and directions in policy and research are explored.
(Publisher abstract)
Subject terms:
discrimination, health care, lesbians, patients, parents, stereotyped attitudes;
Parent and family support is central to government policy on ensuring the well-being of children. Whilst much is known about the difficulties and challenges parents with a disabled child face, and what parents want for their children, very little is known about how parents want their own lives to be. This report presents findings from research with parents of disabled children about the outcomes between their caring and parenting roles. In addition to individual outcomes, parents described family-level outcomes including maintaining family life and ensuring the positive adjustment of siblings. Also, parents wanted sufficient practical and financial resources to meet the needs of their disabled child and the rest of their family.
Parent and family support is central to government policy on ensuring the well-being of children. Whilst much is known about the difficulties and challenges parents with a disabled child face, and what parents want for their children, very little is known about how parents want their own lives to be. This report presents findings from research with parents of disabled children about the outcomes they desire for themselves, and their views on the role services can play in helping them achieve those outcomes. Ninety mothers and eighteen fathers across three local authorities participated. Parents’ desired outcomes focused on maintaining or enhancing their personal identity, their physical and emotional well-being, and their skill and knowledge base. They also expressed a desire for a better balance between their caring and parenting roles. In addition to individual outcomes, parents described family-level outcomes including maintaining family life and ensuring the positive adjustment of siblings. Also, parents wanted sufficient practical and financial resources to meet the needs of their disabled child and the rest of their family.
Subject terms:
parents, social care provision, user views, children, disabilities, families, health care;
Journal of HIV/AIDS and Social Services, 11(3), July 2012, pp.271-290.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
As HIV/AIDS mortality rates improve, more HIV-infected parent are bearing HIV-negative children. This study seeks to investigate the health care resource expenditures of 136 American HIV-negative children residing in homes with HIV-positive parents. Using national medical cost data covering a six year period, the authors compared the health care expenditures (prescription and non-prescription)
As HIV/AIDS mortality rates improve, more HIV-infected parent are bearing HIV-negative children. This study seeks to investigate the health care resource expenditures of 136 American HIV-negative children residing in homes with HIV-positive parents. Using national medical cost data covering a six year period, the authors compared the health care expenditures (prescription and non-prescription) of HIV-affected and non-HIV-affected children, with a special focus on the impact of mental health conditions on expenditures. Surprisingly, post matching, multivariate analysis showed the HIV-affected children's total prescription expenditures were significantly lower than those of non-HIV-affected children. However, HIV-affected children with mental health conditions incurred greater: total health care expenditures (4.0 times), non-prescription health care expenditures (3.1 times), and prescription expenditures (8.7 times) compared to the respective expenditures of other children in the study. The authors suggest that further work should focus on the emotional, social and behavioural outcomes for children living in HIV-infected families.
Subject terms:
HIV AIDS, mental health problems, parents, children, costs, health care;
BIE Eveliene Dera de, JANSEN Maria, GERVER Willem Jan
Journal article citation:
Child Care in Practice, 18(3), July 2012, pp.193-206.
Publisher:
Taylor and Francis
... conclusions were drawn from the interviews. The results suggested that child healthcare practitioners were insufficiently aware that a child's first year is an important period to prevent overweight, and that they found it difficult to discuss the topic with parents. Also, the findings suggest that the current local overweight prevention protocols in the Netherlands are not well implemented. This study indicates opportunities to improve the performance of child healthcare practitioners with respect to the early identification of infants at risk for overweight, as well as the communication of this risk to parents and the implementation of overweight-prevention protocols. Implications for practice are discussed.
This study investigated inhibiting factors in the prevention of overweight infants younger than one year, among practitioners working for municipal child healthcare organisations in the Netherlands. In total, 12 in-depth interviews with child healthcare physicians and nurses were conducted. All interviews were tape-recorded, after which the transcripts were thematically analysed. General conclusions were drawn from the interviews. The results suggested that child healthcare practitioners were insufficiently aware that a child's first year is an important period to prevent overweight, and that they found it difficult to discuss the topic with parents. Also, the findings suggest that the current local overweight prevention protocols in the Netherlands are not well implemented. This study indicates opportunities to improve the performance of child healthcare practitioners with respect to the early identification of infants at risk for overweight, as well as the communication of this risk to parents and the implementation of overweight-prevention protocols. Implications for practice are discussed.
Subject terms:
obesity, parental responsibility, parents, prevention, babies, health care;
Health and Social Care in the Community, 20(4), July 2012, pp.388-399.
Publisher:
Wiley
... children’s hospices in England, who were interviewed over a two and a half-year period. Findings revealed that clarity of the desired outcome for the young person supported effective decision-making and led parents to feel confident that the best possible choice was being made. Evidence of desired outcomes being attained were used by parents to trade off any potentially negative consequences of a choice.
Satisfaction with service-related choices has received little attention beyond medical/health-related decisions. This study examined parents’ accounts of making service-related choices with, or on behalf of, a disabled son or daughter with a degenerative condition, focusing on factors and processes which contributed to parents’ satisfaction. Fourteen participants were recruited through two children’s hospices in England, who were interviewed over a two and a half-year period. Findings revealed that clarity of the desired outcome for the young person supported effective decision-making and led parents to feel confident that the best possible choice was being made. Evidence of desired outcomes being attained were used by parents to trade off any potentially negative consequences of a choice. These included the demands placed on parents’ personal, financial and practical resources, and the emotional impact incurred by significant changes such as the loss of the carer role. The authors concluded that practitioners had an important role in practical and emotional support for parents’ choice-making for, or with, their disabled son/daughter.
Subject terms:
parents, user views, young people, decision making, disabilities, health care;
Child: Care, Health and Development, 36(1), January 2010, pp.101-109.
Publisher:
Wiley
A multidisciplinary follow-up programme for parents and children with major anatomical congenital anomalies has been conducted in the authors’ hospital since 1999. This paper evaluates the services of this team from a parental perspective. Parents completed a questionnaire including open and closed questions about satisfaction with the various professional disciplines involved in the follow-up, statements on usefulness of the follow-up services and suggestions for improvement. Of the 469 questionnaires sent out, 71% were returned. Non-responding parents included significantly more parents of non-Dutch origin and parents who never responded to invitations for follow-up examinations. Parental satisfaction differed for the various disciplines. Eighty per cent of the parents were (very) satisfied with the social worker, compared with 92% with nurses. More than half of the parents agreed that follow-up services give peace of mind, although almost 25% of parents considered these as redundant. Their children had significantly shorter intensive care unit stay, were older at the time of the questionnaire, of higher socio-economic status and less likely to be of non-Dutch origin. The 24-hour helpline had been used by 61% of parents, 90% of them were satisfied with the intensive care unit, almost 80% with the general ward. Overall, parents were satisfied with the services of the follow-up team, although some believed communication, recognisability of the team and planning and organisation could be better.
A multidisciplinary follow-up programme for parents and children with major anatomical congenital anomalies has been conducted in the authors’ hospital since 1999. This paper evaluates the services of this team from a parental perspective. Parents completed a questionnaire including open and closed questions about satisfaction with the various professional disciplines involved in the follow-up, statements on usefulness of the follow-up services and suggestions for improvement. Of the 469 questionnaires sent out, 71% were returned. Non-responding parents included significantly more parents of non-Dutch origin and parents who never responded to invitations for follow-up examinations. Parental satisfaction differed for the various disciplines. Eighty per cent of the parents were (very) satisfied with the social worker, compared with 92% with nurses. More than half of the parents agreed that follow-up services give peace of mind, although almost 25% of parents considered these as redundant. Their children had significantly shorter intensive care unit stay, were older at the time of the questionnaire, of higher socio-economic status and less likely to be of non-Dutch origin. The 24-hour helpline had been used by 61% of parents, 90% of them were satisfied with the intensive care unit, almost 80% with the general ward. Overall, parents were satisfied with the services of the follow-up team, although some believed communication, recognisability of the team and planning and organisation could be better.
Subject terms:
medical treatment, multiple disabilities, parents, quality of life, user views, children, health care;