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The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and/or mental health issues: what do carers say?
- Author:
- JAMES Neil
- Journal article citation:
- Journal of Intellectual Disabilities, 17(1), 2013, pp.6-23.
- Publisher:
- Sage
- Place of publication:
- London
Legislation, policy and strategies encourage services and professionals to work with carers in ways that complement and enhance their roles in order to maximize their capacity to care for their relative. Family carers therefore are recognized as a valuable resource. This article reports the findings of a review of research that explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from recent research studies, about their own support. Carers commonly reported that the support they want from services and professionals is the provision of clear, understandable information about their relative’s condition and treatment. Also, they want help to develop skills that enable them to manage in difficult situations, the provision of psychological support for themselves and a break from their caring role. They desire well-coordinated services as well as skilled and knowledgeable professionals. Recommendations made for the development of future research and practice.
A general practice-based prevalence study of epilepsy among adults with intellectual disabilities and of its association with psychiatric disorder, behaviour disturbance and carer stress
- Authors:
- MATTHEWS T., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 52(2), February 2008, pp.163-173.
- Publisher:
- Wiley
The aims of this study were to determine the prevalence and features of epilepsy in a community-based population of adults with ID, and to explore whether the presence of epilepsy was associated with greater psychopathology or carer strain. Data were collected on the age, gender, place of residence, adaptive and challenging behaviour, social abilities and psychiatric status of 318 adults from 40 general practices in South and Mid Wales, together with the degree of malaise and strain of family carers. For participants with epilepsy, a nurse collected information on seizures, investigations, treatment and carer concerns by interview. Association between epilepsy and psychiatric morbidity, challenging behaviour and caregiver malaise or strain, was explored by comparing those with epilepsy with a comparison group matched on adaptive behaviour. Fifty-eight participants (18%) had epilepsy: 26% were seizure free, but 34% had extremely poorly controlled seizures. Earlier onset and seizure frequency were associated with adaptive behaviour. Carer concerns were related to seizure frequency and a history of injury. There were no significant differences in psychopathology, carer malaise or caregiver strain between the matched epilepsy and non-epilepsy groups. This study supports the high occurrence and chronicity of epilepsy among people with ID. While psychopathology and carer strain is common within this population, underlying disability-related factors appear to be more important than the presence of epilepsy per se.
Dementia
- Authors:
- AMES David, BURNS Alistair, O'BRIEN John
- Publisher:
- Hodder Arnold
- Publication year:
- 2010
- Pagination:
- 828p.
- Place of publication:
- London
- Edition:
- 4th ed.
The new edition of this definitive work on dementia and related disorders has been fully updated and revised to reflect recent advances in this fast-moving field. The editors have brought together a team of the world's leading international experts and key opinion leaders on all aspects of the condition, from history, epidemiology and social aspects to the latest neurobiological research and advanced therapeutic strategies, to provide a broad perspective on this multifaceted problem. The new edition includes: the latest neurobiological research made relevant to everyday practice; a thorough review of all treatment strategies from drug and stem cell therapies through to psychosocial interventions; and a comprehensive review of carer support strategies, community care, long term care facilities, and behavioural management techniques. The book is expected to be of value to a wide audience including; specialists in old age psychiatry, neurology and care of the elderly, and all clinicians working with patients affected by dementia, including psychologists, occupational therapists, social workers and specialist nursing staff. (Winner of the BMA 2011 book awards: psychiatry category.)
Transition for adolescents and young adults with learning disabilities and mental health problems/challenging behaviours: the parent carers' views
- Authors:
- UNWIN Gemma, et al
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 2(1), March 2008, pp.22-28.
- Publisher:
- Emerald
The aim of this research was to scope issues of concern at transition for young people with learning disabilities and mental health problems/challenging behaviour from the perspective of parent carers, using a focus group interview consisting of ten participants, including on facilitator and administrative support. The interview was tape-recorded, transcribed and thematically coded using Microsoft Word and NVivo. Two case vignettes were used to simulate the discussion. Several themes emerged from analysis of the transcripts: access to information about rights and the services available for their sun or daughter, and conflicts between carers and professionals. The experience of parent carers of people with learning disabilities is still not well understood. By understanding the views and experiences of parent carers, transition can be facilitated and concerned parties can work together to achieve better results.
Expressed emotion: a cross-culturally valid concept?
- Author:
- CHENG Andrew T.A.
- Journal article citation:
- British Journal of Psychiatry, 181(12), December 2002, pp.466-467.
- Publisher:
- Cambridge University Press
Since the introduction of the concept of expressed emotion (EE), that is emotion expressed by close relatives towards a family member with schizophrenia, there have been several studies focusing on its influence on the course of schizophrenia and other disorders. The original concept of EE includes a set of positive and negative emotions, among which three major negative components - criticism, hostility and emotional over-involvement - have become the focus of research in both Western and non-Western countries. It has been pointed out, however, that what counts as criticism, hostility and emotional overinvolvement is a matter of cultural definition.
Service satisfaction and helpfulness ratings, mental health literacy and help seeking barriers of carers of individuals with dual disabilities
- Authors:
- MAN Joyce, KANGAS Maria
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(1), 2019, pp.184-193.
- Publisher:
- Wiley
Background: 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. Method: Forty‐one parents took part in an online survey assessing satisfaction and helpfulness ratings of received services. Twenty‐six parents also completed items to assess mental health literacy and attitudinal barriers to help seeking. Results: Parents showed good mental health literacy with depression and with challenging behaviour associated with autism and poorer literacy with mixed presentations. Few attitudinal barriers to help seeking were reported. Parents reported varied helpfulness and satisfaction ratings with disability and mental health services. Conclusions: Parents are capable of recognizing the need to seek professional help for their offspring. Implications for service coordination, provision and carer involvement are discussed. (Edited publisher abstract)
Findings from an online survey of family carer experience of the management of challenging behaviour in people with intellectual disabilities, with a focus on the use of psychotropic medication
- Authors:
- SHEEHAN Rory, et al
- Journal article citation:
- British Journal of Learning Disabilities, 46(2), 2018, pp.82-91.
- Publisher:
- Wiley
Background: 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. Materials and methods: An online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments. Findings: Ninety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed. Conclusions: Psychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice. (Edited publisher abstract)
Autism in adults: diagnosis and management
- Author:
- NATIONAL COLLABORATING CENTRE FOR MENTAL HEALTH
- Publisher:
- National Institute for Health and Clinical Excellence
- Publication year:
- 2012
- Place of publication:
- London
Clinical guideline which provides best practice advice on the care of adults with autism. The guidance covers the following key areas: general principles of care; identification and assessment; and interventions for autism, challenging behaviour, coexisting mental disorders. Assessment and interventions for families, partners and carers and organisation and delivery of care are also covered. Recommendations for future research include the need for more evidence on the clinical and cost effectiveness of: self-help for anxiety and depression, cognitive behavioural therapy for anxiety disorders and pharmacological treatments for depression in adults with autism. The full guideline, 'Autism: the NICE guideline on recognition, referral, diagnosis and management of adults on the autism spectrum' contains details of the methods and evidence used to develop the guideline.
Predictors of comprehensive stimulation program efficacy in patients with cognitive impairment. Clinical practice recommendations
- Authors:
- BINETTI Giuliano, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 28(1), 2013, pp.26-33.
- Publisher:
- Wiley
This longitudinal study examined which factors best predict response to a comprehensive stimulation programme offered to patients with dementia and mild cognitive impairment (MCI) and their caregivers. A total of 145 Italian patients (55 with MCI and 90 with dementia), participating to a cognitive motor rehabilitation program, and their 131 caregivers, attending informational/psychoeducational interventions were followed for six months. Three alternative cognitive stimulation interventions were used: Reality Orientation Therapy, Global Reactivation Therapy, and Memory Training. Mini mental state examination, Alzheimer’s Disease Assessment Scale-Cognition, and Clinician’s Interview-Based Impression of Change-plus were the primary outcome measures. Sixty-eight (46.9%) of the 145 subjects were classified as clinical responders. At baseline, responders had a significantly less insight into impairment, greater functional capacity as well as fewer delusions, euphoria, and aberrant motor behaviours than the non-responder. After 6 months, along with an improvement in cognition, responders also showed decreased behavioural disturbances and severity of disturbances. During the analysis the caregiver's burden of distress remained stable; however after 6 months the burden of the caregivers of MCI responders was reduced. The authors conclude that a high level of insight, preserved functional abilities as well as the lack of severe delusions, euphoria, and aberrant motor behaviours are significant predictors of responsiveness to stimulation programmes.
Autism: recognition, referral, diagnosis and management of adults on the autism spectrum
- Author:
- NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE
- Publisher:
- National Institute for Clinical Excellence
- Publication year:
- 2012
- Pagination:
- 57p.
- Place of publication:
- Manchester
This NICE Guideline offers best practice advice on the care of adults with autism. It covers the care provided by primary, community, secondary, tertiary and other health and social care professionals who have direct contact with, and make decisions concerning the care of, adults with autism. The term autism is used generically to cover all autism spectrum conditions. With an emphasis on person-centred care, the guidance covers: identification and assessment; correct interventions and monitoring their use, interventions for challenging behaviour, managing coexisting mental disorders, assessment and interventions for families, partners and carers; and the organisation and delivery of care. Research recommendations are also discussed.