SCIE research briefing 13 Helping parents with a physical or sensory impairment in their role as parents

Reference list

Click here for a full alphabetical list of the references.

(1) Pawson R., Boaz A., Grayson L., Long A., Barnes C. (2003). Types and Quality of Knowledge in Social Care. Knowledge Review 3. Social Care Institute for Excellence (SCIE).

This document analyses and defines the different types of knowledge and information which may inform social care research and practice.

(2) SCIE Research briefing 14 (2005). Helping Parents with Learning Disabilities in their Parenting Role. Social Care Institute for Excellence.

This is a research and policy briefing describing methods for helping parents with learning disabilities to perform their parenting role as well as possible.

(3) SCIE Research briefing 6 (2004). Parenting Capacity and Substance Misuse. Social Care Institute for Excellence.

This is a research and policy briefing describing methods for helping parents who have problems with drug and alcohol addiction.

(4) Barker L.T., Maralani V. (1997).Challenges and Strategies of Disabled Parents: Findings from a National Survey of Parents with Disabilities. Oakland (CA), Berkeley Planning Associates.

This is a US survey of parents with disability.

(5) Katz P.P., Pasch L.A., Wong B. (2003). Development of an instrument to measure disability in parenting activity among women with rheumatoid arthritis. Arthritis & Rheumatism, 48 (4), 935-943.

This study aims to develop a method of assessing and summarising parenting function and disability, and to use that method to describe parenting disability among a group of women with rheumatoid arthritis.

(6) Alexander C.J., Hwang K., Sipski M.L. (2002). Mothers with spinal cord injuries: impact on marital, family, and children's adjustment. Archives of Physical Medicine and Rehabilitation, 83 (1), 24-30.

This US study aims to evaluate how mothers with spinal cord injury (SCI) adjust to parenting, their marriages, and their families, and how their children adjust to their mothers' disability.
Abstract available

(7) Wates M. (2004). Righting the Picture: Disability and Family Life. In: Swain J., French S., Barnes C., Thomas C. (eds). Disabling Barriers - Enabling Environments. London, Sage, 135-141.

This article summarizes some of the key issues relating to disabled parents.

(8) Kelley S.D.-M., Sikka A., Venkatesan S. (1997). A review of research on parental disability: Implications for research and counseling practice. Rehabilitation Counseling Bulletin, 41 (2), 105-121.

This US article reviews the research evidence on the influence of physical, cognitive and sensory disabilities on parenting.
A Critical Appraisal of this article is available

(9) SCIE Research briefing 11 (2005). The Health and Well-Being of Young Carers. Social Care Institute for Excellence.

This is a research and policy briefing describing how young carers may be affected by their role and what interventions they find helpful.

(10) Stickland H. ( 2003).Disabled Parents and Employment. London, Department of Work and Pensions.

This paper considers the link between disabled families, social exclusion and poverty.

(11) Woodhouse A. (1997). Parents with learning disabilities: does everyone have the right to have children? Journal of Learning Disabilities for Nursing, Health, Social Care, 1141-146.

This is a review of literature on the topic of parenting by parents with learning disabilities.

(12) Gordon D., Townsend P., Levitas R., Pantazis C., Payne S., Patsios D. et al. ( 2000).Poverty and Social Exclusion in Britain. York, Joseph Rowntree Foundation.

This is a national survey examining poverty and social exlcusion in Britain.

(13) Department for Work and Pensions (2003). Opportunity for All. Department for Work and Pensions.

This is the fifth annual report of the DWP.

(14) Grue L., Laerum K.T. (2002). 'Doing motherhood': some experiences of mothers with physical disabilities. Disability and Society, 17 (6), 671-683.

This Norwegian study interviews thirty mothers with physical disabilities about their experiences as a parent.
A Critical Appraisal of this article is available

(15) Conley-Jung C., Olkin R. (2001). Mothers with visual impairments who are raising young children. Journal of Visual Impairment and Blindness, 95 (1), 14-29.

This US study explores the views of mothers with visual impairment. The mothers' key concerns are reported to be their children's safety; the extra time needed to accommodate the impairment; transportation; and handling the reactions of others.
A Critical Appraisal of this article is available

(16) Preston G. (2005).Family Values: Disabled Parents, Extra Costs and the Benefits System. London, Disability Alliance.

This is a report on the additional costs of parenting faced by parents with a disability.

(17) Grant M. (2001). Mothers with arthritis: child care and occupational therapy: insight through case studies. British Journal of Occupational Therapy, 64 (7), 322-329.

This is a small-scale qualitative study examining the physical problems experienced by parents with arthritis.
A Critical Appraisal of this article is available

(18) Farber R.S. (2000). Mothers with disabilities: in their own voice. American Journal of Occupational Therapy, 54 (3), 260-268.

This US qualitative study seeks to gain an understanding of the personal experience of women with disabilities as mothers and in relation to their social and family environment.
Abstract available
A Critical Appraisal of this article is available

(19) Smith S.R., Soliday E. (2001). The effects of parental chronic kidney disease on the family. Family Relations: Interdisciplinary Journal of Applied Family Studies, 50 (2), 171-177.

This is a US qualitative study on the effects of a parent's chronic kidney disease on their family.
A Critical Appraisal of this article is available

(20) Morris J. (2003). The Right Support: Report of the Task Force on Supporting Disabled Adults in their Parenting Role. Joseph Rowntree Foundation.

This document reports on the findings of a Task Force on Supporting Disabled Adults in their Parenting Role. This Task Force received evidence that people with physical disabilities, sensory impairments, learning disabilities, mental health difficulties, long-term illness and HIV/AIDS experience common barriers to receiving appropriate support in their parenting role.

(21) Wates M. (2003). It shouldn't be down to luck. Disabled Parents Network.

This report gives the results of a consultation with disabled parents.

(22) Olsen R., Wates M. (2003). Disabled Parents. Examining Research Assumptions. Research In Practice.

The aim of this review is to bring together the research literature on disabled parents and to place it within the context of policy and practice.

(23) Wates M. (2002). Supporting disabled adults in their parenting role. Joseph Rowntree Foundation.

This document reports on a survey to find out whether social services departments have policies/protocols for providing services to parents with physical and sensory impairments and/or learning disabilities and, if so, to see how effective these are likely to be in meeting the needs of families.

(24) Goodinge S. (2000). A Jigsaw of Services: Inspection of services to support disabled adults in their parenting role. Department of Health.

This is the national strategy document for supporting disabled parents.

(25) Becker S., Dearden C., Aldridge J. (2001). Young Carers in the UK: research, policy and practice. Research, Policy and Planning.

This article reviews the main research studies on young carers in the UK, examines the services available to support young carers, and identifies the implications for future policy and practice, particularly in social care.

(26) Bond H. (2000). Learning how to cope. Community Care.

This article reports on a South London project to help parents with learning disabilities

(27) Wade M.I., Foster N.E., Cullen L.A., Barlow J.H. (1999). Advising mothers with arthritis. Breast and bottle feeding for mothers with arthritis and other physical disabilities. Professional Care of Mother and Child, 9 (2), 35-38.

This article makes recommendations on how health professionals can support new mothers with arthritis.

(28) Harris J., Bamford C. (2001). The uphill struggle: services for deaf and hard of hearing people - issues of equality, participation and access. Disability and Society, 16 (7), 969-979.

This article focuses on the social exclusion experienced by deaf adults, including their role as parents.
A Critical Appraisal of this article is available

(29) Tracey B.L. ( 2002).Silent Partners? The problem for deaf parents in accessing appropriate information and support from Health, Education and Social Services for themselves and their (predominantly) hearing children. University of Bristol, School for Policy Studies.

This is an M.Phil thesis (Unpublished).

(30) Jones E.G. (1995). Deaf and hearing parents' perceptions of family functioning. Nursing Research, 44 (2), 102-105.

This US study compares the perceptions of deaf and hearing parents about their family life.
Abstract available
A Critical Appraisal of this article is available

(31) Barlow J.H., Cullen L.A., Foster N.E., Harrison K., Wade M. (1999). Does arthritis influence perceived ability to fulfil a parenting role? Perceptions of mothers, fathers and grandparents. Patient Education and Counseling, 37 (2), 141-151.

This study aims to examine the realities of parenting from the perspective of mothers and fathers with arthritis. The consensus of the study group is that pain, fatigue and restricted physical functioning combine to interfere with their parenting role.
Abstract available
A Critical Appraisal of this article is available

(32) Foster N.E., Wade M.I., Harrison K., Barlow J.H. (1998). Being a parent with arthritis: the therapists viewpoint. Journal of Interprofessional Care, 12 (4), 437-440.

This study explores the views of therapists involved in supporting parents with arthritis and reports their recommendations to help these adults in their parenting role.
A Critical Appraisal of this article is available

(33) Foster N.E., Wade M.I., Harrison K., Barlow J.H. (1999). Focusing on arthritis and parenting. British Journal of Therapy and Rehabilitation, 6 (7), 347-353.

This is a small-scale study designed to gain understanding of the experience of parents who have arthritis, from the perspectives of the occupational therapists and physiotherapists involved in their care.
A Critical Appraisal of this article is available

(34) Mens-Verhulst J., Radtke H.L., Spence C.D. (2004). The private struggle of mothers with asthma: a gender perspective on illness management. Patient Education & Counseling, 54 (1), 79-86.

This joint Canadian-Dutch qualitative study conducts interviews with a small sample of mothers with asthma to explore their experiences of parenting.
A Critical Appraisal of this article is available

(35) McKeever P., Angus J., Lee-Miller K., Reid D. (2003). "It's more of a production": accomplishing mothering using a mobility device. Disability and Society, 18 (2), 179-197.

This is a qualitative study conducted by Canadian researchers examining the experiences of mothers who use wheelchairs and its impact on their parenting role.
A Critical Appraisal of this article is available

(36) Tuleja C., DeMoss A. (1999). Baby care assistive technology. Technology and Disability, 11 (1, 2), 71-78.

This is a US study examining the value of equipment to help disabled mothers in their parenting of very young children.

(37) Reid D., Angus J., McKeever P., Miller K.L. (2003). Home is where their wheels are: experiences of women wheelchair users. American Journal of Occupational Therapy, 57 (2), 186-195.

This US paper examines the experiences of mothers who are wheelchair users in their roles of homemaking and parenting.
A Critical Appraisal of this article is available

(38) Banks P., Cogan N., Deeley S., Hill M., Riddell S., Tisdall K. (2001). Seeing the invisible children and young people affected by disability. Disability and Society, 16 (6), 797-814.

This paper reports on two studies examining the role performed by young carers and its impact on their lives.
A Critical Appraisal of this article is available

(39) Newman T. (2002). 'Young carers' and disabled parents: Time for a change of direction? Disability and Society, 17 (6), 613-625.

This paper reviews and critically examines research on young carers.

(40) Kirshbaum M. (2000). A disability culture perspective on early intervention with parents with physical or cognitive disabilities and their infants. Infants and Young Children, 13 (2), 9-20.

This US article considers the views of disabled parents regarding interventions to help them in their parenting of very young children.

(41) Woodhouse A., Green G., Davies S. (2001). Parents with learning disabilities: service audit and development. British Journal of Learning Disabilities, 29 (4), 128-132.

This paper reports on an audit and service model for delivering parenting support to parents with learning disabilities.

(42) Dearden C., Becker S. (2000). Growing Up Caring: Vulnerability and Transition to Adulthood - Young Carers' Experience. Joseph Rowntree Foundation.

This study examines the extent to which caring can influence young people's decisions and activities in relation to education, training and employment, leaving home and becoming an adult. It also looks at the impact of community care policies and services on these young people.

(43) Dearden C., Becker S. (1998).Young Carers in the United Kingdom: A Profile. London, Carers' National Association.

This is an extensive survey of young carers.

(44) Centre for Child and Family Research. (2002).Children caring for parents with severe and enduring mental illness. Loughborough, Loughborough University.

This is a report of a 2-year study looking at the experiences and needs of children who care for a parent with mental illness.

(45) Keith L., Morris J. (1995). Easy targets: a disability rights perspective on the "children as carers" debate. Critical Social Policy, 44/45, 36-57.

This paper challenges the construction of the concept of 'young carers' employed by researchers and policy-makers.

(46) Olsen R. (1996). Young carers: challenging the facts and politics of research into children and caring. Disability and Society, 11 (1), 41-54.

This paper reviews and critically examines research on young carers.

(47) Booth T., Booth W. (1999). Parents together: action research and advocacy support for parents with learning difficulties. Health and Social Care in the Community, 7 (6), 464-474.

This paper summarises the findings of the research project reported in the book "Advocacy for Parents with Learning Difficulties: Developing Advocacy Support", by the same authors.
Abstract available

(48) Kirshbaum M., Olkin R. (2002). Parents with physical, systemic, or visual disabilities. Sexuality and Disability, 20 (1), 65-80.

This US article reviews the problems experienced by parents with physical disabilities and impairments.

(49) Jones A., Jeyasingham D., Rajasooriya S. (2004). Invisible Families: the Strengths and Needs of Black Families in which Young People have Caring Responsibilities. Joseph Rowntree Foundation.

This study investigates the experiences and needs of young black people caring for disabled or ill family members and their access to services.