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One social network, two perspectives: social networks of people with Down syndrome based on self‐reports and proxy reports
- Authors:
- ROLL Anne E., KOEHLY Laura M.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(6), 2020, pp.1188-1198.
- Publisher:
- Wiley
Background: For people with intellectual disabilities (ID), social networks play a key role in facilitating social inclusion, health, and quality of life. This study shows that a multi‐informant approach to collecting social network data improves our understanding of the social worlds of people with Down Syndrome (DS). Method: A mixed methods egocentric network approach was employed to investigate 27 dyads comprised of people with DS and their family members as proxy reporters to examine variability in network characteristics across self‐ and proxy reports. Results: The self‐reported total network size of people with DS was significantly smaller than the network size based on proxy reports. Significant differences were found between self‐ and proxy‐reported networks with respect to most relationship groups. Proxy informants reported more “paid staff”. Conclusion: Our study showed that multiple perspectives on the social networks of people with DS are advantageous for researchers, policy makers, and practitioners. (Edited publisher abstract)
Lucy's treatment
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2011
- Place of publication:
- London
This film is a drama set in an accident and emergency department. Lucy is a woman with Down’s syndrome who is resisting treatment for a dog bite. She is with her mother when the nurse comes to assess her. The nurse does not communicate well with Lucy. She is doing a pressurised job, but this cannot excuse her behaviour towards Lucy. The nurse also makes a common mistake of believing she can’t provide treatment which goes against her patient’s wishes. It is Lucy’s mother who explains that where a person lacks capacity to make a decision about treatment, the decision must be made in the person’s best interests. Lucy is given a tetanus injection using a limited amount of restraint. NB This film is no longer available to view.
Dignity in care: communication
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2014
- Pagination:
- 16 minutes 7 seconds
- Place of publication:
- London
Good communication can help people to maintain their dignity. It is vital that staff develop other ways of communicating with people who have a cognitive impairment or limited speech. This film provides an example of communicating with Matthew, a young man with Down's Syndrome Matthew is encouraged to use a diary so that he knows what he's going to be doing on any particular week. It's a good way for staff to find out what's been happening in Matthew's life. The film also shows how, for older people, past memories of being at the beach can be used as a useful communication tool. Communication in practice can mean asking people how they prefer to be addressed and to respect their wishes; giving people information about the service in advance and in a suitable format; and not assuming that you know what people want because of their culture, ability or any other factor. (Edited publisher abstract)
Must we remove Mary from her home?
- Author:
- -
- Journal article citation:
- Community Care, 6.10.11, 2011, pp.26-27.
- Publisher:
- Reed Business Information
Experts offer advice on supporting a learning disabled women who is overweight whose health is at risk because she will not leave her mother.
What kind of a future?: supporting young people with Down's syndrome to lead full lives after they leave school
- Author:
- MORGAN Hazel
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2007
- Pagination:
- 42p.
- Place of publication:
- London
This booklet was produced by the Foundation for People with Learning Difficulties. It is for young people and their families, friends and supporters to read and talk about together. The booklet tells the stories of young people with Down's syndrome and how they come to lead full lives after they leave school. It is written in plain English and there is an easy read summary. At the end of each section there are ideas for young people and information about some easy read websites and booklets. There is a final section on useful addresses and information for families.
Dementia Screening Questionnaire for Individuals with Intellectual Disabilities
- Authors:
- DEB Shoumitro, et al
- Journal article citation:
- British Journal of Psychiatry, 190(5), May 2007, pp.440-444.
- Publisher:
- Cambridge University Press
Many adults with Down's syndrome develop Alzheimer's dementia relatively early in their lives, but accurate clinical diagnosis remains difficult. The aim was to develop a user-friendly observer-rated dementia screening questionnaire with strong psychometric properties for adults with intellectual disabilities. The authors used qualitative methods to gather information from carers of people with Down's syndrome about the symptoms of dementia. This provided the items for the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID), which was then tested for its psychometric properties. The DSQIID was administered to carers of 193 adults with Down's syndrome, 117 of whom were examined by clinicians who confirmed a diagnosis of dementia for 49 according to modified ICD-10 criteria. It was established that a total score of 20 provides maximum sensitivity (0.92) and optimum specificity (0.97) for screening. The DSQIID has sound internal consistency (=0.91) for all its 53 items, and good test-retest and interrater reliability. The authors established a good construct validity by dividing the items into four factors. The DSQIID is a valid, reliable and user-friendly observer-rated questionnaire for screening for dementia among adults with Down's syndrome.
Ageing and learning disability
- Author:
- HOLLAND A.J.
- Journal article citation:
- British Journal of Psychiatry, 176, January 2000, pp.26-31.
- Publisher:
- Cambridge University Press
This study aims to identify some key biological, psychological and social issues relevant to how ageing might particularly effect people with learning disabilities. Presents a selected review which considers the extent to which there are similarities and differences relative to people without learning disabilities. Findings suggest that there is a convergence, in later life, between people with a learning disability and those without. There is a lack of a concerted response to ensure that the best possible health social care is provided for people with learning disabilities in later life.
Being a dad to a child with Down’s syndrome: Overcoming the challenges to adjustment
- Authors:
- RIDDING Anna, WILLIAMS James
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(3), 2019, pp.678-690.
- Publisher:
- Wiley
Background: 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. Method: Semi‐structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT). Results: Fathers’ adjustment appeared to be on a fluid trajectory with three key categories influencing this: “Accommodating the Child,” “Adapting the Parental/Spousal Role” and “Adapting Society.” Conclusions: The accounts uncovered fathers’ adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed. (Edited publisher abstract)
Evaluating health visitors' existing knowledge of Down Syndrome and the effect of a training workshop
- Authors:
- MENGONI Silvana E., REDMAN Sandra
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 16(1), 2019, pp.30-36.
- Publisher:
- Wiley
Children with Down syndrome are at an increased risk of health and development issues in early childhood, therefore monitoring their development and identifying health conditions as early as possible is critical. Health professionals may not always have the training and knowledge to effectively support families of children with disabilities, including Down syndrome. In the UK, health visitors conduct health and development reviews for children under 5 years, therefore they have a key role to play in monitoring and identifying health issues in young children with Down syndrome. However there has been no research on health visitors' knowledge and training needs regarding Down syndrome. This study aimed to assess health visitors' existing knowledge of Down syndrome and evaluate a pilot Down syndrome training session for health visitors. Twenty‐six health visitors from two NHS Trusts in England participated in 1 of 5 group training workshops. Pretraining and posttraining questionnaires assessed knowledge about Down syndrome, and feedback on the training session. Knowledge about Down syndrome was low prior to the training and increased significantly following the training session. Health visitors rated the training workshop very highly and would recommend it to a colleague. Health visitors identified a need for training to enable them to increase their knowledge about Down syndrome and better support families. In summary, a pilot training session about Down syndrome received positive feedback from health visitors, and led to improvements in knowledge and understanding about Down syndrome. This has the potential to improve health outcomes for children with Down syndrome. (Edited publisher abstract)
A serious case review: James
- Authors:
- FLYNN Margaret, ELEY Ruth
- Publisher:
- Suffolk Safeguarding Adults Board
- Publication year:
- 2015
- Pagination:
- 53
- Place of publication:
- Ipswich
Serous case review of Richard Handley, referred to as ‘James’, a 33 year old adult with Down’s syndrome and a moderate learning disability who was also diagnosed with a mental illness and hypothyroidism. He had lifelong problems with constipation. He lived in a Supported Living scheme, Goshawk Close, run by United Response. On 14 November 2012 he was admitted to Ipswich Hospital and following a surgical procedure under anaesthetic to remove impacted faeces, he died in hospital on 17 November 2012. Failings identified in the review include: poor monitoring of physical health needs; a lack of understanding about the use of the Mental Capacity Act; no specific arrangements for the supported living scheme to obtain support from specialist learning disabilities services; and lack of a multi-disciplinary approach to supporting physical and mental health needs. Recommendations include: named care coordinators for adults with learning disabilities and complex support needs; an annual review of health and social care needs; and ensuring services providing care to people with complex support needs have explicit access arrangements with NHS providers such as Community Learning Disability Teams. (Original abstract)