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A phenomenological investigation into the impact of parenthood: Giving a voice to mothers with visual impairment in the United Kingdom
- Author:
- MOLDEN Helen
- Journal article citation:
- British Journal of Visual Impairment, 32(2), 2014, pp.136-147.
- Publisher:
- Sage
Despite psychological support for parents increasing in prominence in recent UK public policy, there has been a minimal focus on parenting with a disability and specifically scant information on the experiences of what it is like to be a parent with visual impairment. Nine UK mothers, aged 32–47 years, each with a child under 10, were interviewed by telephone to examine how the experience of becoming a parent impacted them. Interview transcripts were examined using interpretative phenomenological analysis (IPA). This article focuses on two meta-themes in the findings: (1) ‘struggles around independence’ and (2) ‘visibility and the impact of the other’s gaze’. They raise issues around both theory and practice of interest to those working in psychological services for people with visual impairment, including (1) the possibility of a new integrative model to conceptualise the experience of parenting with a disability and (2) the mothers’ daily experience of stigmatisation and marginalisation in interaction with the other. (Publisher abstract)
Let's stick together
- Author:
- REID Tricia
- Journal article citation:
- Learning Disability Today, December 2008, pp.26-27.
- Publisher:
- Pavilion
- Place of publication:
- Hove
Briefly reports on the new leadership training course for disabled adults and parents of disabled children which is run by Partners in Policymaking. The course covers issues including health and education, person-centred planning and individual budgets. It also provides information and skills training so that people with disabilities and family members can speak for themselves.
PARC life
- Journal article citation:
- Community Care, 11.9.08, 2008, pp.22-23.
- Publisher:
- Reed Business Information
Frustrated by a lack of play opportunities for disabled children, a group of parents in Essex has spent more than 10 years providing centres and after-school clubs themselves. Discusses their experiences of setting up the Play and Adventure Resource Centre (PARC) which is used both by children with autism and those with physical disabilities.
Occupational therapy guidelines
- Author:
- AYRES Darren
- Journal article citation:
- Disability, Pregnancy and Parenthood International, 60, Winter 2007, pp.12-13.
- Publisher:
- National Centre for Disabled Parents
The author discusses the role of occupational therapy in empowering disabled parents, and explains how his team developed a model to assess and then provide support to disabled parents.
From child to adult: an exploration of shifting family roles and responsibilities in managing physiotherapy for cystic fibrosis
- Authors:
- WILLIAMS Brian, et al
- Journal article citation:
- Social Science and Medicine, 65(10), November 2007, pp.2135-2146.
- Publisher:
- Elsevier
Although chest physiotherapy is central to the management of cystic fibrosis many report problems with adherence. Research in other long-term conditions suggests that non-adherence may be exacerbated as the child grows older and self-care responsibilities are transferred to the young person. The authors explored the nature and variation in roles of family members, how responsibility was transferred from the parent/family to the child, and what factors aided or hindered this process The authors conducted in-depth interviews with 32 children with a diagnosis of cystic fibrosis aged 7–17 years, and with 31 parents attending cystic fibrosis clinics in two Scottish regions. Family responsibilities were primarily focused on mothers. The level and nature of involvement varied along a continuum that separated into six parental and five child roles and changed over time. However, this movement was frequently reversed during periods of illness or mistrust. The day to day experience of such a transfer was not straightforward, linear or unproblematic for any of the family members. Three factors were identified as assisting the transfer of responsibility: parents’ perceptions of the benefits of transferring responsibility, children's perceptions of the benefits, and the available physical, social and psychological resources to support such a transfer. The principles and lessons from “concordance” (a therapeutic alliance based on a negotiation between equals and which may lead to agreement on management or agreement to differ) may provide a foundation for newly developing relationships between parents and their children emerging into adulthood. Further research is required to develop more specifically the content and structure of required support, its effectiveness in achieving more concordant relationships, and the resulting impact on adherence, perceived health and well-being from the perspective of the young person and parent.
The need for short breaks and how to run them
- Author:
- -
- Journal article citation:
- Community Care, 27.09.07, 2007, p.24, 26.
- Publisher:
- Reed Business Information
This article analyses research findings and highlights the importance of short break and respite care for disabled children and their carers.
Supporting disabled parents
- Author:
- -
- Journal article citation:
- Community Care, 5.7.07, 2007, pp.26-27.
- Publisher:
- Reed Business Information
This article looks at the research evidence behind parents with disabilities and highlights messages for practice.
The subjective well-being of parents of children with developmental disabilities: the role of hope as predictor and fosterer of well-Being
- Author:
- GOLAN-SHENAAR Vered
- Journal article citation:
- Journal of Social Work in Disability and Rehabilitation, 15(2), 2016, pp.77-95.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
The purpose of this study was to identify factors that can improve the subjective well-being (SWB) of parents of children with a developmental disability, expand the knowledge relating to the role of hope in their lives, and improve the extent to which parent appraisals of the influence of the disability (on the couple's relationship, family functioning, and personal development) moderate this association. Participants were a convenience sample of 114 Jewish Israeli parents of children with DD living in their parents’ home. The children ranged in age from 6 to 21. All the children were formally recognised by the State of Israel's Department of Welfare as being diagnosed with autism spectrum disorder (ASD), intellectual disabilities (ID), or physical disabilities (PD). The results revealed that parental SWB was below the societal average; however, it differed significantly across levels of parent appraisals of their child's disability. Findings from this study point to the importance of hope to improve parental SWB. (Edited publisher abstract)
MS: challenges and strategies
- Authors:
- EVERINGTON Shanta, BLOOMFIELD Jo
- Journal article citation:
- Disability, Pregnancy and Parenthood International, 67, Winter 2009, pp.4-5.
- Publisher:
- National Centre for Disabled Parents
Jo Bloomfield, a mother with MS, from Bedford, UK talks about some of the challenges of parenting with multiple sclerosis (MS) and about her experiences of accessing her sons’ school as a disabled parent.
Short breaks tracking: interim report April 2009
- Author:
- EVERY DISABLED CHILD MATTERS
- Publisher:
- Every Disabled Child Matters
- Publication year:
- 2009
- Pagination:
- 20p.
- Place of publication:
- London
An interim report on a research project evaluating the impact of the Aiming High for Disabled Children short breaks programme on the lives of disabled children and their families. It covers: aims of the project; state of short breaks services in 2008; short breaks tracking 2008-9; information and transparency; assessment; participation and feedback. Findings indicate that evidence of good practice is emerging but there is still a long way to go before a consistent, sustainable service is available for all disabled children.