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Emotional and tangible reciprocity in middle- and older-aged carers of adults with intellectual disabilities
- Authors:
- PERKINS Elizabeth A., HALEY William E.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 10(4), 2014, pp.334-344.
- Publisher:
- Wiley
This study investigates whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving. (Edited publisher abstract)
The 'double-bind of dependency': early relationships in men with learning disabilities in secure settings
- Authors:
- RAYNER Kelly, WOOD Harry, BEAIL Nigel
- Journal article citation:
- British Journal of Learning Disabilities, 43(3), 2015, pp.186-193.
- Publisher:
- Wiley
Although the development of secure attachments has been shown to be more problematic for people with learning disabilities, there is a shortage of research into the attachment experience of people with learning disabilities who have broken the law. The present study used thematic analysis to explore the attachment experiences of 10 men with learning disabilities in secure settings. Attention was paid to formative relationship experiences in early life, along with an exploration of current relationships, with the content and direction of interviews being guided by participants. Two superordinate themes emerged from the analysis: ‘disempowerment’ and ‘ineffective care’. Results suggest that participants experienced a ‘double-bind of dependency’ in which they felt a strong need for others, but had experienced unhelpful or harmful relationships. The clinical and practical implications for this are discussed. (Publisher abstract)
The role of the learning disability worker
- Authors:
- BARCHAM Lesley, POUNTNEY Jackie
- Publisher:
- Learning Matters; British Institute of Learning Disabilities
- Publication year:
- 2011
- Pagination:
- 43p.
- Place of publication:
- Exeter
This practical textbook is aimed at social care staff working with people with learning disabilities to help them the role of the learning disability worker. This includes personal assistants, volunteers, managers supporting services, or personal budget users planning to train a personal assistant. Chapters cover: understanding working relationships when supporting people with a learning disability; working in ways that are agreed with your employer and following policies and procedures; and working in partnership with families, carers and advocates. Each chapter contains clear learning objectives, thinking points to aid reflective practice, examples of good practice, and activities. The contents also links to the Common Induction Standards and the module on the role of the health and social care worker from level 2 and 3 diplomas in health and social care
Majority and minority ethnic family carers of adults with intellectual disabilities: perceptions of challenging behaviour and family impact
- Authors:
- HATTON Chris, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(1), January 2010, pp.63-74.
- Publisher:
- Wiley
A health service in an English city was concerned about its support to families with adults with intellectual disabilities and challenging behaviour. Semi-structured interviews were conducted with seven minority ethnic and seven majority ethnic family members to explore perceptions of challenging behaviour, support and the impact of the person on the family. These were analysed using interpretative phenomenological analysis. Four themes emerged: (i) A broad range of difficulties with the adult with intellectual disabilities. (ii) Varied relationships with local communities in acceptance and support. (iii) Varied but largely negative relationships with services. (iv) Varied relationships with the person with intellectual disabilities, from highly dependent relationships with negative consequences to more fulfilling relationships. Families from minority ethnic communities were more likely to report negative experiences. 'Challenging behaviour' services need to be considered within a much broader social and community context.
First contact: charting inner space; thoughts about establishing contact with people who have significant developmental disabilities
- Author:
- HINGSBURGER Dave
- Publisher:
- Diverse City Press
- Publication year:
- 2000
- Pagination:
- 36p.
- Place of publication:
- Eastman, QC
This book is written for those who work directly with individuals who have significant developmental disabilities. The book begins by challenging the reader to reflect on how they “see” a person with a significant disability. Moving past pity and on to personhood, the author suggests that the most important aspect of serving those with significant disabilities is to actively “meet” the person behind the disability. The author gives the reader ideas and suggestions for establishing contact, rapport and relationship with individuals within their care. This book suggests that those with significant disabilities can be “self advocates” for change in their lives.
A Space to listen: meeting the spiritual needs of people with learning disabilities
- Author:
- SWINTON John
- Publisher:
- Mental Health Foundation
- Publication year:
- 2001
- Pagination:
- 24p.bibliog.
- Place of publication:
- London
Spirituality is an important but neglected area in the lives of people with learning disabilities. Spirituality is defined as encompassing, what gives meaning to people's lives, the sense of transcendence, and the importance of relationships and connections. Consultations with people from different faiths or none, people with learning disabilities, family carers and service providers all suggested the importance of the value of friendship and finding meaning to life.
Positive approaches to challenging behaviour: supporting relationships - families, carers and friends; workbook 6; supporting the "certificates in working with people who have learning disabilities"
- Authors:
- HARRIS John, HEWETT Dave, HOGG James
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2001
- Pagination:
- 50p.
- Place of publication:
- Kidderminster
- Edition:
- 2nd
Part six of a set of six interactive workbooks aimed at new and more experiences staff, managers who supervise staff, and training managers in services for people with learning difficulties. This book focuses on supporting relationships.
More than one wavelength: identifying, understanding and resolving conflicts of interest between people with intellectual disabilities and their family carers
- Authors:
- WILLIAMS V., ROBINSON C.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 14(1), 2001, pp.30-46.
- Publisher:
- Wiley
This article describes conflicts of interest in families which include someone with intellectual disabilities. Data were taken from a study concerned with the 1995 Carers Act. The research examined the experiences and views of 51 families who had some kind of assessment by a social services department. Cases were analysed where it was found that carers, the people for whom they cared and the assessors did not agree about such conflicts. Argues that assessors sometimes stereotyped families and spoke of conflicts of interest when the situation was more complex. In particular, the real conflict was often between the whole family and an inadequate service system that did not offer enough support or choices to the individual. Conflicts were related to three major motives driving carers: the need for a break from caring; the need to speak for their disabled relative; and their concern for standards of behaviour. The present authors report on how these situations were handled by assessors and conclude with some recommendations for good carer assessments which will help to resolve conflicts of interest. Concludes that a greater degree of informed choice for individuals with intellectual disabilities will in itself resolve many potential conflicts of interest. -------------------------------------------------------------------------------- Paper accepted September 2000
Working with families, friends and carers: a framework for adult social care employers
- Authors:
- SKILLS FOR CARE, AVENUES
- Publisher:
- Skills for Care
- Publication year:
- 2019
- Pagination:
- 26
- Place of publication:
- Leeds
This framework, developed in partnership with the Avenues Group, sets out good practice guidelines about the skills and knowledge adult social care staff need to work effectively with the families and carers of people who need care and support. The framework covers four areas: establishing positive relationships with families, friends and carers; recognising the importance of family relationships and your role in this; maintaining appropriate communication with families; and offering support to people who need care and support to maintain and manage family relationships. The framework can be used to help organisations design or commissioning training. It can also be used to review how services and staff are working with families and carers and identify what needs to improve. It is based on research carried out by Avenues Group with people who need care and support and their families. Links to a sample training session designed by the Avenues Group is included. (Edited publisher abstract)
The right to a relationship: addressing the barriers that people with learning disabilities face in developing and sustaining intimate and sexual relationships
- Author:
- NATIONAL DEVELOPMENT TEAM FOR INCLUSION
- Publisher:
- National Development Team for Inclusion
- Publication year:
- 2019
- Pagination:
- 45
- Place of publication:
- London
This research, co-produced with My Life My Choice, explores the barriers people with learning disabilities experience in developing and sustaining intimate relationships. It also looks at the commissioning and support practices that can help people with learning disabilities to develop and sustain intimate relationships and the policy and practice changes needed to address these barriers. Using a mixed-methods approach, the research collected data through focus groups and interviews with people with learning disabilities, responses to a survey and interviews with service providers. Approximately 115 people participated in the project throughout the various stages and direct quotations from participants are included throughout. The research found that people with learning disabilities experience many barriers in developing and sustaining intimate relationships. These included: limited opportunities to meet potential partners, staff and family members preventing people from being in a relationship, limited knowledge about sexuality and keeping safe, and lack of money and transport. Things that could help people be in an intimate relationship, included being recognised and respected as adults with rights, having supportive social and community networks, and having knowledge about relationships and sexuality. Based on the findings, the report provides recommendations for providers and areas for future research (Edited publisher abstract)