Ethics and Social Welfare, 2(1), April 2008, pp.50-66.
Publisher:
Taylor and Francis
Place of publication:
Abingdon
This article explores the ethical questions that were central to a qualitative study of the parenting experiences of parents with an intellectual disability. The study was located in three cities in New Zealand and involved 19 parents who have an intellectual disability. It considers three aspects of the research process, all of which involve significant ethical matters that need to be addressed throughout the research process. The first concerns issues around the construction of knowledge. Here fundamental issues such as who controls knowledge and knowledge production are explored. Building on the first issue, the second focuses on the significance of relationships in research and explores the factors that contribute to effective research relationships. The final theme explores social change in research and the role of the participant and researcher in this change process. The article provides a critical reflection on research practice by foregrounding common ethical concerns and poses some of the possible responses to these concerns so that research remains authentic and protects the interests of all participants. These involve seeking clarity around research aims and processes from the participants and others who have an interest in the research and its potential outcomes.
This article explores the ethical questions that were central to a qualitative study of the parenting experiences of parents with an intellectual disability. The study was located in three cities in New Zealand and involved 19 parents who have an intellectual disability. It considers three aspects of the research process, all of which involve significant ethical matters that need to be addressed throughout the research process. The first concerns issues around the construction of knowledge. Here fundamental issues such as who controls knowledge and knowledge production are explored. Building on the first issue, the second focuses on the significance of relationships in research and explores the factors that contribute to effective research relationships. The final theme explores social change in research and the role of the participant and researcher in this change process. The article provides a critical reflection on research practice by foregrounding common ethical concerns and poses some of the possible responses to these concerns so that research remains authentic and protects the interests of all participants. These involve seeking clarity around research aims and processes from the participants and others who have an interest in the research and its potential outcomes.
Subject terms:
parents with learning disabilities, research ethics, research methods, user participation;
NATIONAL FORUM OF PEOPLE WITH LEARNING DIFFICULTIES
Publisher:
National Forum of People with Learning Difficulties
Publication year:
2011
Pagination:
40p.
Place of publication:
Shoreham-by-Sea
Self advocacy groups are led by people with learning disabilities. They work to ensure that people with learning disabilities are treated fairly. This easy read guide aims to help self advocacy groups adapt and change their ways of working, and to ensure they have a plan for their future. It is based on a survey of self-advocacy groups from all over England and provides an overview of how groups are run, what they do and advice on how to plan to stay strong as government funding is reduced. The report includes information on five groups including a group of people with complex needs, an Asian women’s group and a parents’ group.
Self advocacy groups are led by people with learning disabilities. They work to ensure that people with learning disabilities are treated fairly. This easy read guide aims to help self advocacy groups adapt and change their ways of working, and to ensure they have a plan for their future. It is based on a survey of self-advocacy groups from all over England and provides an overview of how groups are run, what they do and advice on how to plan to stay strong as government funding is reduced. The report includes information on five groups including a group of people with complex needs, an Asian women’s group and a parents’ group.
Subject terms:
learning disabilities, non-verbal communication, parents with learning disabilities, self-advocacy, South Asian people, user participation, women;
Disability, Pregnancy and Parenthood International, 71, Winter 2010, pp.10-11.
Publisher:
National Centre for Disabled Parents
As part of the Strengthening Families, Strengthening Communities parent programme, resources were developed to meet the needs of parents with learning disabilities. An overview of the project is provided, with information on developing the accessible manual, recommendations to consider when working with parents with learning disabilities and feedback from the parents themselves. The project was developed by the Race Equality Foundation in partnership with learning disability organisation CHANGE.
As part of the Strengthening Families, Strengthening Communities parent programme, resources were developed to meet the needs of parents with learning disabilities. An overview of the project is provided, with information on developing the accessible manual, recommendations to consider when working with parents with learning disabilities and feedback from the parents themselves. The project was developed by the Race Equality Foundation in partnership with learning disability organisation CHANGE.
Subject terms:
information needs, learning disabilities, parents, parents with learning disabilities, user participation, access to information;
British Journal of Learning Disabilities, 37(2), June 2009, pp.145-150.
Publisher:
Wiley
Christine lives with her three children, Elizabeth, George and Louise. Following the unexpected death of her husband in December 2001, she has been offered practical support into the home, so that she can continue to look after her children. It has been a long struggle, getting the right support package into the home. This article tells Christine's story. Christine's story identifies how communication is vital, particularly when so many organisations are involved. She has been able to express her needs through the help of her advocate and her extended family. Looking back on the service, difficulties have occurred at times when there is communication breakdown. In order to foster good communication within the home, the immediate support group works best with as few people as possible. Everyone's roles and responsibilities need to be clear, and as members of the group change, group members and their managers need to be reminded of these. As Christine has felt that she is more valued, so her skills have grown and improved. This story ends with a list of what seem to have been the vital ingredients of this support package. The authors hope that this information will be helpful to other families and service providers.
Christine lives with her three children, Elizabeth, George and Louise. Following the unexpected death of her husband in December 2001, she has been offered practical support into the home, so that she can continue to look after her children. It has been a long struggle, getting the right support package into the home. This article tells Christine's story. Christine's story identifies how communication is vital, particularly when so many organisations are involved. She has been able to express her needs through the help of her advocate and her extended family. Looking back on the service, difficulties have occurred at times when there is communication breakdown. In order to foster good communication within the home, the immediate support group works best with as few people as possible. Everyone's roles and responsibilities need to be clear, and as members of the group change, group members and their managers need to be reminded of these. As Christine has felt that she is more valued, so her skills have grown and improved. This story ends with a list of what seem to have been the vital ingredients of this support package. The authors hope that this information will be helpful to other families and service providers.
Subject terms:
learning disabilities, parental skills training, parents with learning disabilities, user participation, vulnerable adults, vulnerable children, advocacy, challenging behaviour, children, family support;
Despite the Children Act, there is often no partnership with parents with learning difficulties, they find they are not been given support or counselling and may even risk losing their children. Looks at this concern.
Despite the Children Act, there is often no partnership with parents with learning difficulties, they find they are not been given support or counselling and may even risk losing their children. Looks at this concern.
Subject terms:
learning disabilities, parents, parents with learning disabilities, rights, service users, social services, social care provision, user participation;
A Task Force on Supporting Disabled Adults in their Parenting Role received evidence that people with physical impairments, sensory impairments, learning difficulties, mental health difficulties, long-term illness or HIV/AIDS experience common barriers to receiving appropriate support in their parenting role. The Task Force consisted of representatives from government, social services, voluntary organisations and disabled parents' organisations. It took evidence from parents, professionals and researchers.
A Task Force on Supporting Disabled Adults in their Parenting Role received evidence that people with physical impairments, sensory impairments, learning difficulties, mental health difficulties, long-term illness or HIV/AIDS experience common barriers to receiving appropriate support in their parenting role. The Task Force consisted of representatives from government, social services, voluntary organisations and disabled parents' organisations. It took evidence from parents, professionals and researchers.
Subject terms:
HIV AIDS, interpersonal relationships, learning disabilities, parent-child relations, parents, parents with learning disabilities, physical disabilities, social care provision, user participation, visual impairment, families, parental mental health;
Includes chapters on: supporting families of children and adults with learning difficulties; achieving supported housing; supported employment and real jobs; continuing education for adults with learning difficulties; institutional trends in services; developing better relationships between health and social services; assessment and care management; making contracts work for people with learning difficulties; user participation in services; complaints procedures; developing better services for people from black and minority ethnic communities; gender issues; older people with learning difficulties; self advocacy; challenging behaviour; sexuality; parents with learning difficulties; poverty; and media images of people with learning difficulties. Also contains sections on services provision in the United States and Canada.
Includes chapters on: supporting families of children and adults with learning difficulties; achieving supported housing; supported employment and real jobs; continuing education for adults with learning difficulties; institutional trends in services; developing better relationships between health and social services; assessment and care management; making contracts work for people with learning difficulties; user participation in services; complaints procedures; developing better services for people from black and minority ethnic communities; gender issues; older people with learning difficulties; self advocacy; challenging behaviour; sexuality; parents with learning difficulties; poverty; and media images of people with learning difficulties. Also contains sections on services provision in the United States and Canada.
Subject terms:
independence, learning disabilities, mass media, multidisciplinary services, older people, parents, parents with learning disabilities, poverty, quality assurance, residential care, sexuality, sheltered employment, social care provision, supported housing, user participation, women, assessment, care management, complaints, contract procedures, contracts, education, families, employment, equal opportunities, health care;