Search results for ‘Subject term:"learning disabilities"’ Sort:
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Prader-Willi syndrome: clinical picture, psychosocial support and current management
- Authors:
- WIGREN M., HANSEN S.
- Journal article citation:
- Child: Care, Health and Development, 29(6), November 2003, pp.449-456.
- Publisher:
- Wiley
Maps the need for psychosocial support and current management of children and adolescents with Prader–Willi syndrome (PWS), a rare, genetically based disorder occurring in about 1 in 15,000 live-born children whose cardinal symptoms include low muscle tone at birth, overeating, motor and speech impairments, delayed pubertal development, cognitive dysfunctions and psychiatric symptoms. To raise a child with PWS is challenging for parents and requires support from multiprofessional habilitation services. Parents of 58 children with PWS aged 5–18 who received their diagnosis at a mean age of 2.5 completed questionnaires covering clinical, diagnostic and psychosocial issues. Growth hormone treatment was given to 72% and 63% were not overweight. Early neuropsychiatric symptoms were common, some related to obesity. Most parents wanted information on availability of external resources and future child needs. Few needed family-directed support. The overall impression is that the disorder is managed relatively well. Even so, PWS symptoms typically exacerbate over time and consequently parents need continuous support throughout childhood and adolescence. Greater attention should be paid to idiosyncrasies in cognitive functioning and to clinical markers of neuropsychiatric problems.
Effect of the COVID‐19 pandemic on the mental health of carers of people with intellectual disabilities
- Authors:
- WILLNER Paul, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(6), 2020, pp.1523-1533.
- Publisher:
- Wiley
Introduction: The measures implemented to manage the COVID‐19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. Method: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. Results: Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2–3 times greater than reported in earlier pre‐pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. Conclusions: The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings. (Edited publisher abstract)
Speaking up for families
- Author:
- EVANS Reiz
- Journal article citation:
- Disability, Pregnancy and Parenthood International, 71, Winter 2010, pp.8-9.
- Publisher:
- National Centre for Disabled Parents
The advocacy services provided by Advocacy Partners Speaking Up to parents with learning disabilities and mental health needs are discussed. A short case study describes how the service helped a mother with learning disabilities and mental health needs whose child had been placed on a child protection plan.
Mental health problems in young people with intellectual disabilities: the impact on parents
- Authors:
- FAUST Hannah, SCIOR Katrina
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 21(5), September 2008, pp.414-424.
- Publisher:
- Wiley
Young people with intellectual disabilities seem to be at increased risk of developing mental health problems. The present study set out to examine the impact such difficulties can have on parents. Semi-structured in-depth interviews were carried out with 13 parents and one adult sibling of 11 young people with intellectual disabilities and additional mental health problems in an area of East London. Parents described far reaching negative consequences of the young person's mental health problems. In many parents these re-evoked intense past feelings of grief and triggered feelings of helplessness and despair. Parents' experiences appear to be characterized by confusion, loss and hardship. Services do not seem to be attuned to the high level of emotional and practical needs of these parents.
Detection of child mental health disorders by general practitioners
- Authors:
- SAYAL Kapil, TAYLOR Eric
- Journal article citation:
- British Journal of General Practice, 54(502), May 2004, pp.348-352.
- Publisher:
- Royal College of General Practitioners
This study compares GP recognition of disorders with child mental health data and examines factors affecting recognition, in particular whether recognition is enhanced if the parent expresses concern during the consultation. The study involved a two-phase design involving an initial community survey of children between the ages of 5 and 11 years. In the second phase, primary care attenders who were regarded by their GP as having a mental health disorder were compared with those who were not. For 186 children attending primary care, GP recognition was compared with the results of a child mental health questionnaire completed by parents. Accuracy and predictors of GP recognition were examined. Seventy four percent of children meeting criteria for caseness were not recognised by GP's as having a mental health disorder. The expression of parental concern in the consultation about a mental health problem increased the sensitivity of recognition from 26% to 88%. Expression of concern also increased GP recognition of non-cases; this reflected GP identification of other mental health and learning problems. Only a third of parents who had concerns expressed these during the consultation.
Associations between behaviours that challenge in adults with intellectual disability, parental perceptions and parental mental health
- Authors:
- WAITE Jane, et al
- Journal article citation:
- British Journal of Clinical Psychology, 56(4), 2017, pp.408-430.
- Publisher:
- Wiley
Objectives: This study examined parental perceptions of behaviours that challenge (CB) in their adult children with intellectual disability (ID), and explored whether perceptions mediated associations between CB and parental psychological distress. Design: A within-group correlational design was employed. Methods: Sixty-five parents reported on individuals with genetic syndromes and ID who had chronic CB. Parents completed the Illness Perception Questionnaire-Revised (IPQ-R) adapted to measure perceptions of self-injury, aggression or property destruction, alongside assessments of parental locus of control, attributions about behaviour, parental psychological distress, and CB. Results: A high proportion of parents evidenced anxiety and depression at clinically significant levels (56.9% and 30.8%, respectively). Contrary to predictions, psychological distress was not significantly associated with CB. The perception that the adult with ID exerted control over the parent's life mediated the association between CB and parental psychological distress. Few parents endorsed operant reinforcement as a cause of CB (< 10%). Conclusions: The high levels of psychological distress in parents is notable and of concern. Further research should consider the reasons why parents have causal attributions that might be inconsistent with contemporary interventions. Practitioner points: 1) Parents experience high levels of psychological distress while supporting adults with ID who engage in chronic behaviours that challenge; 2) A stronger belief that the adult with ID exerts control over the parent's life may mediate an association between CB exhibited by the individual with ID and parental psychological distress; 3) Few parents endorsed operant reinforcement as a cause of behaviours that challenge. (Publisher abstract)
Getting it right in time: parents who lack litigation capacity in care proceedings
- Authors:
- WELBOURNE Penelope, MacDONALD Paula, BATES Philip
- Publishers:
- Nuffield Foundation, Plymouth University
- Publication year:
- 2017
- Pagination:
- 96
- Place of publication:
- London
This study looks at the characteristics of parents lacking litigation capacity in care proceedings and identifies key aspects of provision that could help them to get fair representation in court and participate in hearings. The study examined how many parents are found to lack litigation in care proceedings, their key characteristics - such as age, gender, the issues that led to them lacking litigation capacity, and the number of children involved in proceedings where a parent lacks litigation capacity. It also explores the courts and Office of the Official Solicitor respond to the Public Sector Equality Duty under the Equality Act 2010 in cases involving parents who lack litigation capacity. The study found that lack of litigation capacity may be due to mental health problems, intellectual disability, or a combination of factors. Capacity is also issue specific, so some people may have capacity to make some decisions, but not others. It can also fluctuate, especially in the case of a mental health problem. It also found that very few parents ended proceedings with the care of their children. Based on the findings, the report makes recommendations to support parents who lack litigation capacity. These include: for courts to provide the technology and space to enable parents who have specialist communication and participation needs to observe, understand and participate in hearings; and in cases that require an interpreter the support of an intermediary to help any interpreter communicate with a parent who lacks litigation capacity. (Edited publisher abstract)
Increased risk for mental illness, injuries, and violence in children born to mothers with intellectual disability: a register study in Sweden during 1999–2012
- Authors:
- WICKSTROM Maria, et al
- Journal article citation:
- Child Abuse and Neglect, 65, 2017, p.124–131.
- Publisher:
- Elsevier
Several studies have demonstrated that mothers with intellectual disability (ID) have a higher prevalence of mental health illness, lower socio-economic status, and a higher risk of alcohol and drug use compared to mothers without ID. The children of mothers with ID are over-represented in child protection and legal proceedings but are generally a less studied group than the mothers. The aim of this study was to investigate if children born to mothers with ID had an increased risk of being diagnosed with mental illness, injuries, and violence compared with children of mothers without ID. The study comprised a population-based cohort of children born in Sweden between 1999 and 2005. Data were collected from the Medical Birth Register and linked with two other national registers; ICD-10 codes were used for medical diagnoses, including ID. The children were followed from birth to seven years of age. In total, 478,577 children were included, of whom 2749 were born to mothers with ID. Children of mothers with ID were at a greater risk of having mental health problems (adjusted odds ratio (OR) = 2.02; 95% confidence interval (CI) = 1.74–2.35) and ID (OR = 4.14; CI = 2.95–5.82) in early childhood. They had an increased risk for injuries due to falls (OR = 1.15; Cl 1.04–1.27). The largest risk related to trauma was violence and child abuse (OR = 3.11; CI = 1.89–5.12). In conclusion, children of mothers with ID had an increased risk for injuries, violence, and child abuse. The authors suggest that parents with ID should receive evidence based support so that their children receive the best care and protection. (Edited publisher abstract)
Impact of mid-life symptoms of alcoholism on the health and wellbeing of aging parents of adults with disabilities
- Authors:
- GHOSHA Subharati, et al
- Journal article citation:
- Journal of Gerontological Social Work, 59(1), 2016, pp.56-72.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
The study examined the effect of adult children’s disability on parents’ physical health in later life and the extent to which parents’ symptoms of alcoholism in mid-life moderates the link between children’s disability and later life parental health. Analyses are based on data from the Wisconsin Longitudinal Study. The analytic sample included parents of children with developmental disabilities (n = 145) or mental health problems (n = 200) and 2,432 parents of unaffected children. The results showed that the negative health consequences in later life of having a child with a developmental disability were greater for those who showed more symptoms of alcoholism in mid-life. However, symptoms of alcoholism in mid-life did not significantly moderate the impact of an adult child’s mental health problems on parents’ later life physical health. The findings suggest a potential area where gerontological social workers could intervene, given the negative impact of symptoms of alcoholism on the health of ageing parents of children with a disability who may be significantly more susceptible to the negative health impacts of alcohol compared to their younger counterparts. (Edited publisher abstract)
Supporting disabled parents: a family or a fragmented approach?
- Author:
- COMMISSION FOR SOCIAL CARE INSPECTION
- Publisher:
- Commission for Social Care Inspection
- Publication year:
- 2009
- Pagination:
- 55p.
- Place of publication:
- London
This CSCI report seeks to examine the experiences of disabled parents and their families and to see how far council policies, services and practice are providing appropriate support. The findings in this report are taken from a national survey of 50 councils; of the 70 interviews, 36 were conducted with representatives of adults’ services and 32 of children’s services, and two were conducted with a representative from each service jointly. To supplement the national picture, in-depth study workshops of services were conducted in four council areas. The report finds that many councils do not fully support disabled parents and their children.