This study aims to understand the experiences of professional paid carers providing community support to people with intellectual disability “at risk of admission”. This study explores factors that were helpful or lacking in terms of the support the carers received from NHS health services during this time. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
A particular challenge facing parents of children with intellectual disabilities occurs when their adult children with intellectual disabilities has an interest in pursuing couple relationships. This study explores parents' perceptions regarding the nature of couple relationships, the right of their adult children with intellectual disabilities to pursue such relationships, the difficulties their children encounter and their own role in providing support.. To read the full article, log in using your MPFT NHS OpenAthens details.
Adults with intellectual disabilities and their families receiving services have plans for their care, education and social support.
This occurs through meetings and results in a “care plan” or “plan of support.”
There are differences in nursing, educational and social care plans.
At present, adults with intellectual disability have little involvement in nursing care planning.
Involving adults with intellectual disability in nursing care planning is important, and there is a need to share and publish this involvement. . To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Feeling alone and not connected to other people where you live affects many people and especially people with a learning disability. The government and the newspapers are talking a lot about this, they want to understand who is affected and what can be done.
Our group did a research project to find out some of the things that stop us getting involved in local places with local people where we can make and keep friends. The people in the research project mainly lived independently and did not use learning disability services, so needed to use local community organisations. . To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Open access. Challenging behaviour is a common problem among people with ID and in services for people with ID. This paper aims to provide an overview of the views and preferences of people with ID on challenging behaviour.
People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
There are a significant number of adults with a learning disability who live with and are cared for by their parents. There is a pressing need for interventions to support older parent carers with their role and to plan for a time when they can no longer continue caring. This article reports on the experiences of older parent carers who have been in receipt of an intervention to support future planning, in a rural part of England, delivered to older carers of their adult children with learning disabilities.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Identifying what parents describe to be positive about parenting their child who has intellectual disabilities is important for professional practice and how parents can be supported over a lifespan.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
The ageing of people with intellectual disabilities, involving consequences like dementia, creates a need for methods to support care staff. One promising method is Dementia Care Mapping (DCM). This study examined the effect of DCM on job satisfaction and care skills of ID‐care staff. . To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Given decreased formal supports for adults with intellectual and developmental disabilities (IDDs) in many industrialised countries, we need to know more about informal, or natural, supports.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Caring for a child with intellectual disability (ID) has been associated with increased social and psychological burdens. Diagnostic and prognostic uncertainty may enhance emotional stress in families.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Siblings of adults with intellectual and developmental disabilities (IDD) often support their brothers and sisters through caregiving and guardianship.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Open access. Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long‐term care planning.
Open access. The move to community support for all people with intellectual disabilities is an aspiration with international significance. In this article, we draw on rich accounts from women with intellectual disabilities detained under the Mental Health Act (E&W) 1983 and staff at an National Health Service secure setting in England to explore how “moving on” is defined and perceived.
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This study examined mothers' representation of their children's inner world – maternal insightfulness – and its link to sensitive maternal behaviour. We aimed to understand some of the parental processes that underlie parenting children with intellectual disability (ID).. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
The subtle communicative behaviour of individuals with visual and severe/profound intellectual disabilities hinders the success of their interaction with professional caregivers. The bioresponse system, a tool to raise caregivers' awareness of the client's communicative behaviour, may improve the client's joint attention behaviour and the dyad's affective mutuality.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Parents with intellectual disability live normal lives and have children, but many of them lose custody of their children. However, little is known about the support, if any, that these children receive. Here, the present authors review the literature on the help and support given to children of parents with intellectual disability.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Considering the growing body of studies investigating the effects of mindfulness‐based interventions on caregivers supporting people with developmental disabilities, the current study aimed to explore the role that the cognitive processes of mindfulness, coping style and resilience played in predicting caregiver retention and burnout among a sample of direct support professionals working with aggressive adults with developmental disabilities.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Free access. Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers’ experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision.
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Communicating the diagnosis of Down syndrome (DS) to parents in a kind and sensitive manner is essential. The aim of our study was to evaluate parental experience of this discussion at the birth of their baby. This was a cross-sectional study of all parents of a child born with DS during the last 20 years and linked with Early Interventions Services in Galway, Ireland. Parents were first contacted via telephone to discuss the study, and with their consent a postal survey was sent to them to complete anonymously. We were successful in contacting 84 of 106 eligible families (79%) via telephone. We received 50 complete surveys back, giving a response rate of 60%.. To read the full article, log in using your NHS OpenAthens details.
Supporting people with intellectual disabilities to live well in communities they choose is deinstitutionalisation's central aim and endorsed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006). This study focused on the experiences of people with intellectual disabilities in Ireland when moving home using an inclusive research approach.. To read the full article, log in using your MPFT NHS OpenAthens details.
Clinicians recommend including carers or others in a supporting role in the therapy as an important adaptation of psychological therapies for people with intellectual disabilities. This nested qualitative study from a larger trial explored supporters’ experiences of supporting people with intellectual disabilities receiving behavioural activation or guided self‐help therapies for depression.. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
The aim of the current study was to identify functional predictors of perceived impact of childhood disability among families of children with neurodevelopmental disorders and disabilities. We first examined the relationship between sub‐domains of adaptive and problematic behaviour and perceived family impact. Second, we examined whether the same sub‐domains would emerge as significant after controlling for the impact of child diagnosis, including autism spectrum disorder, cerebral palsy and intellectual disability.. To read the full article, log in using your MPFT NHS OpenAthens details.
Open access. Due to incompatibilities in communication, it is key that family members and support staff can take the perspective of people with moderate to profound intellectual disabilities (ID) whilst putting aside their own perspectives.
To gain insight into the experiences of family carers participating in a weight management program via mHealth tools for overweight children and adolescents with intellectual disabilities.. To read the full article, log in using your MPFT NHS OpenAthens details.
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Open access. There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people.
Aims- To develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables.
Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families.. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Carer mental health literacy and help seeking are areas that are not well researched in the intellectual disability field. This study aimed to explore the above including service utilization experiences of Australian parents with an offspring with an intellectual disability and a comorbid psychiatric disorder.. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
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The literature emphasizes that friendships are essential to youths’ successful transition to and adjustment in adulthood. Few studies have explored the friendships of transition‐aged youths with intellectual and developmental disabilities (IDD), and even fewer include youths’ own perspectives. This qualitative study explored the perspectives of transition‐aged youths with IDD regarding their own experiences of friendship.. To read the full article, log in using your NHS OpenAthens details.
The psychological status of caregivers of individuals with intellectual disability and psychiatric illness (PI) is important for effective management. The aim of this study was to examine the psychological status and its relationship with coping styles among these caregivers.. To read the full article, log in using your NHS OpenAthens details.
There is a growing evidence base about the effectiveness of positive behavioural support (PBS) in relation to behaviours that challenge (CB). There is, however, limited research from the perspective of individuals receiving this support. The objective of this qualitative study was to obtain the views of participants with an intellectual disability about what was important to them in relation to receiving PBS.. To read the full article, log in using your MPFT NHS OpenAthens details. SSOTP (legacy account) - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Learning disability services must include the people who use them (individuals and their families/carers) in service commissioning, planning and delivery (Department of Health 2012. Transforming care: A national response to Winterbourne View Hospital. Department of Health review: Final report). One group of important stakeholders in learning disability services are the family members and carers of people with a learning disability. The aim of this study was to explore how family members experienced their involvement with one Assessment and Treatment Unit, with a view to shaping future service developments.. To read the full article, log in using your MPFT NHS OpenAthens details. SSOTP (legacy account) - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
This paper details a case study which explains how a woman with a mild learning disability was helped to confront overwhelming anxiety which she referred to as “the gremlin.” The client described how “the gremlin” was having an influence over her ability to manage in stressful situations and cope with change. A narrative approach was utilised which focussed on reducing the influence of “the gremlin.” . To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
There is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication.. To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Parenting can be challenging for people with intellectual disabilities. The nature of the parents' intellectual disability as well as past experiences of institutionalisation, insensitive care and inadequate support can interfere with parents' capacity to provide responsive and appropriate parenting to their own children. This can result in parents with intellectual disabilities being investigated under child protection procedures. There is little evidence for parenting interventions to improve attachment in parents with intellectual disability.. To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
The application of telehealth technology to conduct functional analysis (FA) and functional communication training (FCT) is emerging for children with developmental disabilities and behaviour support needs. The current study was designed to extend FA + FCT for self-injurious behaviour by using telehealth in home with parents as interventionists receiving real-time remote coaching. . To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Parenting an individual with intellectual and developmental disabilities (IDD) can be challenging, particularly during adulthood. It is important to better understand ways of supporting families as individuals with IDD age. Self-compassion is a potential internal coping resource for parents, and is strongly linked to positive mental health outcomes, though research has yet to examine it in parents of adults with IDD. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
This exploratory study aimed to increase understanding of the experiences of families of people with intellectual disabilities when noticing and raising concerns in services. A qualitative design was employed. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
There is little research that specifically relates to fathers of adults with a learning disability despite the social expectation that fathers will provide a supportive role over the lifespan. To read the full article, log in using your SSSFT NHS OpenAthens details.
22q11.2 deletion syndrome (22q11.2DS) is the most common microdeletion syndrome. However, there is little research examining the effect of this multisystem disorder on the family, particularly siblings. The current study was a phenomenological exploration of sense-making in siblings of a person with 22q11.2DS. To read the full article, log in using your SSSFT NHS OpenAthens details.
At age 21, access to specialised services for youth with profound intellectual disability is reduced. Few studies have focused on parents' views concerning potential solutions to ease the transition to adulthood, and most existing solutions target young adults with less severe intellectual disability. The aim of this study is to propose realistic solutions to meet the needs of young adults with profound intellectual disability and their families during and after the transition to adulthood. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Parents have found the transition to adulthood for their sons or daughters with intellectual and/or developmental disabilities (IDD) particularly challenging. The literature has not examined how parents work together and with others in face of this transition nor has it highlighted parental goals in this process. This study used a perspective based on joint, goal-direct action to describe the projects that Canadian parents engaged in together and with others relative to this transition. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
The efficacy of mindfulness-based interventions (MBIs) for stress and psychological distress in professional caregivers supporting individuals with intellectual or developmental disabilities (IDDs) is reviewed. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Following scandals such as Winterbourne view, Department of Health, (A national response to Winterbourne View Hospital, 2012) seeks changes in challenging behaviour services. A key part of this change is ensuring people with learning disabilities who use challenging behaviour services have more personalised support and their voices are heard. To read the full article, log in using your SSSFT NHS OpenAthens details.
Journal of Nursing Scholarship; Indianapolis49.4 (Jul 2017): 421-428.
There are growing numbers of older parents providing ongoing care for adults with disabilities. A parent's aging calls for a redefinition of parental care practices and roles in light of his or her own changing needs. The current study aims to highlight the ways in which aging parents perceive and construct their parental role to adult children with disabilities at this point in their lives. An interpretive phenomenological analysis perspective was used. Data collection was performed through in-depth, semistructured interviews with 20 aging parents of children with developmental disabilities, followed by a content analysis. To read the full article, log in using your NHS OpenAthens details.
Systemic approaches can be useful in working with people with learning disabilities and their network. The evidence base for these approaches within the field of learning disabilities, however, is currently limited.
This article presents part of a service evaluation of systemic consultations in a Community Learning Disability Service (CLDS). Login using your SSSFT NHS OpenAthens details for full text.
The inter-rater reliability (IRR) of the measure of life events in adults with intellectual disabilities was investigated. To read the full article, log in using your NHS OpenAthens details.
We’ve just heard that SSOTP will not be renewing their agreement with SSSFT LKS for library services for this financial year. Because of this we will be reviewing our Be Aware bulletins. Sadly we won’t be accepting any new sign-ups from SSOTP staff and will be withdrawing some of the physical healthcare bulletins that we…
In summary, they found that people wanted a workforce who held positive attitudes and considered the people they supported or cared for as equals. They also wanted a workforce who could support them across both a Health and Care setting, with a range of physical and mental health needs, and who could also help them develop skills to become more independent. [Link to full report]
The Sheffield Learning Disabilities Outcome Measure (SLDOM) is routinely used across clinical services in the UK, despite not yet showing evidence of psychometric reliability or validity. However, it is reported that the SLDOM demonstrates good face validity, and represents a valuable tool for providing useful information around the parent-child relationship in the context of having a child with a Learning Disability (LD). Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Parents' positive and negative feelings about their young children influence both parenting behaviour and child problem behaviour. Research has not previously examined factors that contribute to positive and negative feelings in parents of young children with developmental delay (DD). Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
To explore the information needs of parents of infants with an intellectual disability in the first year of life. Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Our Specialist Learning Disabilities Service carers group meets informally every six weeks over coffee and cake. Carers can discuss topics of interest to them in a relaxed atmosphere. We have guest speakers and there is information on subjects relevant to learning disability care.
Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well-being. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Mothers with intellectual disability face socioeconomic disadvantage and social isolation, which is associated with poorer child outcomes. Social services feature prominently in the lives of mothers with intellectual disability especially those without informal support; however, the role of formal support in the lives of their children has not been explored. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
A paucity of information is available on direct care workers’ (DCWs’) experiences with loss when their clients (people with intellectual and developmental disabilities [I/DD]) die. This study explored DCWs’ grief experiences, their coping methods and their needs for support. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19–32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10). Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Carers of children with intellectual disability show high rates of parent-related stress and are at an increased risk for deleterious physical and mental health. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
This research is about people who have intellectual disabilities and live in a secure hospital. It is about a group of people who meet at a support group. The support group is for people who are lesbian, gay, bisexual or transgender. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Siblings often play important roles in the lives of people with intellectual disabilities.
This study suggests that young adults who have siblings in residential care can feel isolated in their experience.
Adolescence appears to be a turning point and a time when siblings become aware of future caretaking responsibilities.
There is a need for support for siblings of children and adults with intellectual disabilities who live in residential care. Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Come and visit our first pop-up library at Severn Fields, Shrewsbury 19th July 11.00am-3.00pm. Join the library, borrow and return books, get help finding information and evidence, set up an Athens account, find out what the library can do for you and your team.
Intensive interaction (II) is a communication approach useful for working with people with severe intellectual disabilities. Health and social care providers offer II training courses to paid carers working in local services with the goal of improving social communication for their clients. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
To understand issues around carer roles that affect carer involvement for people with intellectual disabilities in acute hospitals. Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
This qualitative study is based on participant observations of a group for parents with with intellectual disabilities. Data were categorized and interpreted in the framework of social capital and symbolic interactionism. Please contact the library to receive a copy of this article - http://bit.ly/1Xyazai
People with a learning disability are being asked to contribute to new tests which will help improve NHS services ranging from dentistry to acute care, NHS England has announced today.
The NHS Quality Checkers programme sees people with a learning disability employed to inspect local NHS services critically, to provide advice on how they can better meet their needs and those of other patients.
NHS England has today announced a £1.75m investment in an innovative family-based initiative to help more people to be cared for in a home, not a hospital.
The Shared Lives model will support people who have needs which make it hard for them to live on their own, by carefully matching them with a carer to share their family and lives, giving care and support in the community.
People using the scheme may have learning disabilities, dementia, mental health problems or other needs which require long or short term support. It will offer them the opportunity to either live with their matched and approved Shared Lives carer, or visit them regularly for day support or overnight breaks.
Given that carers of individuals with intellectual disability (ID) and carers of individuals with psychiatric disorders experience elevated levels of stress and psychological distress, carers of individuals with both ID and a comorbid psychiatric disorder are potentially at even greater risk for psychological difficulties. The aim of the present study was to investigate the psychological well-being of carers of adults with a dual diagnosis compared with carers of adults with intellectual disability alone. Login using your SSSFT NHS OpenAthens for full text. SSOTP - request a copy of the article from the library - http://bit.ly/1Xyazai
The purpose of this study was to assess the construct validity of the Aberrant Behaviour Checklist-utility index (ABC-UI) by examining the relationship between healthcare resource utilisation by patients with fragile X syndrome (FXS) as well as burden experienced by their caregivers. Login using your SSSFT NHS OpenAthens for full text. SSOTP - request a copy of the article from the library - www.sssft.nhs.uk/library
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