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Training a family in physical interventions as part of a positive behaviour support intervention for challenging behaviour
- Authors:
- HEWITT Olivia, KEELING Natalie
- Journal article citation:
- British Journal of Learning Disabilities, 44(2), 2016, p.159–166.
- Publisher:
- Wiley
Between 10% and 15% of people with a learning disability have behaviour that challenges others, and half of these people live within the family home (Emerson et al., Research in Developmental Disabilities, 2001; 22, 77). Current best practice in managing challenging behaviour combines person-centred planning, functional analysis, and proactive and reactive strategies, and teaching alternative skills to manage behaviour in a way that keeps both service user and carers safe (positive behaviour support). This study considers the case study of a young man who lives with his parents in their family home. Reactive strategies including physical interventions have been taught to the family which has allowed them to manage their son's behaviour effectively and allowed him to remain living with his family. Frequency and intensity of challenging behaviour reduced, and family confidence in managing challenging behaviour was increased. (Publisher abstract)
The characteristics of local support systems, and the roles of professionals, in supporting families where a mother has an intellectual disability
- Authors:
- WEIBER Ingrid, EKLUND Mona, TENGLAND Per-Anders
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(3), 2016, p.197–210.
- Publisher:
- Wiley
Background: There might be a need for support for families where the mother has an intellectual disability, in order to counteract the effects of potential parental inadequacy and other detrimental aspects of the family situation. The purpose of this study was to describe how professionals characterised such support and the collaboration required. Materials and methods: Focus group interviews involving 29 professionals were conducted and analysed using content analysis. Results: Five themes were identified: The roles and activities of the professionals involved; ways in which needs of support are identified; problems in identifying mothers with an intellectual disability; how professionals coordinate their support and work together; and the dilemma concerning legislative actions. Conclusions: By identifying both fruitful and problematic aspects of professional support, the findings may be used to enhance future support. More efficient chains of information and improved inter-sector collaboration between professions may further enhance the support practices. (Edited publisher abstract)
Support to parents with cognitive limitations: parental abilities and social participation
- Authors:
- MILOT Elise, TURCOTTE Daniel, TETREAULT Sylvie
- Journal article citation:
- British Journal of Learning Disabilities, 44(1), 2016, pp.71-77.
- Publisher:
- Wiley
In several countries, a growing number of adults with cognitive limitations decide to become parents. However, exercising this right requires the implementation of measures and services that foster their ability to assume parental responsibilities. This study presents results collected in an exploratory study documenting the type of support parents with cognitive limitations may need to play their parental role efficiently and be active members of their community. Data come from semi-structured interviews conducted with 27 professionals and 9 parents with cognitive limitations. Nine types of support were identified from the data collected. Some issues associated with the delivery of such supports are discussed. (Publisher abstract)
Informal support and burden among parents of adults with intellectual and/or developmental disabilities
- Authors:
- ROBINSON Suzanne, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(4), 2016, p.356–365.
- Publisher:
- Wiley
Background: Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. Methods: The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored. Results: Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. Conclusions: Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated. (Publisher abstract)
Parental perceptions and satisfaction with family services in families of children with autism spectrum disorder and other developmental disabilities
- Authors:
- ZUNA Nina I., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(3), 2016, pp.233-242.
- Publisher:
- Taylor and Francis
Background: This paper reports results from a study examining disability-related services at the family level. Method: The authors used descriptive statistics to examine (a) the types of disability-related family services families used, (b) how well family services met their needs, (c) the types of family services needed but not received, and (d) families’ perceptions of their knowledge of disability-related family services. Results: Families were mostly satisfied with the services they received; however, about 25% of the sample indicated that a few family services, such as respite, sibling support groups, and parent support groups, were needed but not received. Families were also slightly less satisfied with their knowledge of family services as compared to their ability to request services. Conclusions: Families identified specific services to meet the needs of all of their family members; however, their family support needs are not always being adequately addressed by current programmes. Initial assessments should be used to match family services to family needs, and follow-up consultations would help to ensure that the services received result in improved family quality of life. (Edited publisher abstract)
Adult siblings consider the future: emergent themes
- Authors:
- DAVYS Deborah, MITCHELL Duncan, HAIGH Carol
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(3), 2016, p.220–230.
- Publisher:
- Wiley
Background: This study aimed to explore the perceptions of adult siblings regarding a future care role and compare with perceived parental wishes as family often provide a key support role in the lives of people who have an intellectual disability. Materials and Method: Semi-structured interviews were undertaken with 15 adult siblings and an approach aligned to IPA was used to analyse the results. Results: Emergent themes demonstrated that intellectual disability has an impact upon sibling lives yet the degree and range of impact varies. Most participants were concerned about the future, service issues were raised as was futures planning, siblings' needs, the positive impact of intellectual disability and influence of life stage upon care giving. Conclusion: The findings highlight that whilst the impact of intellectual disability upon adult siblings is variable, siblings are concerned about the future, and that life stage and circumstance appear to influence care giving. (Publisher abstract)
An interprofessional exploration of nursing and social work roles when working jointly with families
- Authors:
- BENNETT Elaine, et al
- Journal article citation:
- Journal of Interprofessional Care, 30(2), 2016, pp.232-237.
- Publisher:
- Taylor and Francis
Ngala, an early parenting not-for-profit organisation in Western Australia, has provided services to families with young children since 1890. Child health nurses and mothercraft nurses were the primary workforce until the 1980s when a social worker was employed and a new era of interprofessional collaboration began. Evidence to date has focused on nursing workforce, interprofessional education, and interprofessional teams. Little is known about the roles of nursing and social work when working jointly with families. A new service commenced in 2012 for families with children with developmental delays. Social workers and child health nurses were employed for this service model. The study's aim was to explore the perceptions of how nurses and social workers work together with a family providing psychosocial support across a new service. The study was conducted alongside implementation of this new service. An exploratory case study approach was adopted to generate an in-depth understanding of the roles of nurses and social workers. In total, 22 semi-structured interviews and one focus group across the first year of implementing the new service were undertaken. Analysis of these data revealed four major themes. Findings presented in this article will inform further reflection and consideration into the future interprofessional workforce priorities and requirements for Early Parenting Services. (Edited publisher abstract)
Restrictive practices on refugees in Australia with intellectual disability and challenging behaviours: a family’s story
- Authors:
- KING Julie, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 10(4), 2016, pp.222-232.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to explore the experiences of a refugee family navigating complex disability and restrictive practice service systems. Living with disability, or caring for someone with disability can compound the disadvantage and marginalisation already experienced by refugees. The nexus between disability and refugee status, particularly intellectual disability and restrictive practices, has received little scholarly attention and almost nothing is known of people’s experiences in this situation. Design/methodology/approach: Thematic analysis of a case study is used to illustrate the experiences of a refugee family in this situation. The case study presented was part of a larger ethnographic study exploring the experiences of people of refugee background living with disability. Findings: There were numerous barriers to accessing appropriate services. The family experienced high levels of stress simultaneously navigating the resettlement process and the disability service system. They were poorly informed and disempowered regarding the care of their loved one and the use of restrictive practices. Experiences in the country of origin, employment responsibilities, and unfamiliarity with the service system were key factors in this family’s difficulty in safeguarding the rights of their family member with disability. Originality/value: This case study examines the complexity experienced when disability intersects with refugee background. Areas for additional research and significant gaps in service provision are identified. The case study clearly demonstrates the importance of understanding people’s pre- and post-settlement experiences to inform policy and service provision. (Publisher abstract)
Family caregiving of aging adults with Down syndrome
- Authors:
- HODAPP Robert M., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.181–189.
- Publisher:
- Wiley
Although persons with Down syndrome now live to approximately 60 years, the implications of increased longevity on family caregiving have received inadequate attention. Even compared with adults with other types of intellectual disabilities, by their late 40s and 50s adults with Down syndrome often show multiple health problems, cognitive-adaptive declines, and changes in daily work and activities. If alive, their parents are more often elderly, as mothers give birth to newborns with Down syndrome at a median age of 32 years (with high percentages age 40 and older). In addition, higher percentages of adults with (vs. without) Down syndrome live in their family homes and greater percentages may ultimately reside with siblings. Compared with caring for other adults with intellectual disabilities, ageing adults with Down syndrome may present earlier—and possibly more severe and more health-related—caregiving challenges to their parents and siblings. As a field and as a society, the authors note that there is a need to promote revisions of family support policies and interventions; recognise the inter-relations of aeging-related changes and their effects; and anticipate how aeging-related changes in the brother–sister with Down syndrome and the parent(s) might affect sibling caregivers. (Edited publisher abstract)
The Right Help at the Right Time for Children with Disabilities in Newport: findings from an evaluation of the Children with Additional Needs Service
- Author:
- OXFORD BROOKES UNIVERSITY. Institute of Public Care
- Publisher:
- Oxford Brookes University. Institute of Public Care
- Publication year:
- 2016
- Pagination:
- 6
- Place of publication:
- Oxford
Families of children with disabilities in the UK, in particular children with Autistic Spectrum Disorders (ASD), often find it hard to access sufficiently specific parenting or family support before problems reach a crisis stage. This paper reports on an innovative service provided in partnership between Newport City Council and Barnardo’s which aims to provide a holistic and evidence based response to the needs of children with a cognitive or physical impairment and their families just below traditional thresholds for a statutory Social Worker-led planKey features of the service include: holistic preventative service including Team around the Family (TAF) element delivered by family support workers; focussing on maximising child potential and assisting with effective parenting; and support for families individually in their own homes and via specialist group-based programmes. The paper provides a brief overview of the services and outlines the key strengths of the CANs intervention. It also provides key findings of an evaluation of the service which found that CANS is working effectively with children and families with a range of needs from providing early help through to support for complex needs. (Edited publisher abstract)