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Family carers of people with intellectual disabilities in Ireland: changes over 10 years
- Authors:
- KELLY Caraíosa, McCONKEY Roy, CRAIG Sarah
- Journal article citation:
- Journal of Intellectual Disabilities, 25(2), 2021, pp.183-191.
- Publisher:
- Sage
- Place of publication:
- London
Data were obtained on nearly 20,000 Irish children and adults living in various family care arrangements in 2007, 2012, and 2017. Over 10 years, the percentage increase in adult persons living with family carers was three times higher than the rise in the general population, with people aged 50 years and over having the highest proportional increase. Also a greater number of persons aged 40–49 group continued to live with both parents in 2017 (47%) compared to 2007 (33%). However, there was marked variation across the nine Community Health Organization areas in the proportions of adults living with family carers (from 49% to 62%). In the coming decades, increased provision will be required in both the quantum and type of supports provided to families so as to sustain their caring role but ensuring equity of provision nationally will be a major challenge. (Edited publisher abstract)
Supporting family carers of children and adults with intellectual disability
- Authors:
- KELLY Caraíosa, CRAIG Sarah, McCONKEY Roy
- Journal article citation:
- Journal of Social Work, 20(5), 2020, pp.639-656.
- Publisher:
- Sage
Summary: The extra strains experienced by families who care for a relative with intellectual disabilities are well documented. The provision of overnight (respite) breaks or supports in the home are common ways of supporting family carers. Often demand exceeds supply. Using data from a national register in Ireland, child and adults who received overnight breaks and in-home support were identified along with the characteristics that distinguished them from families that did not have these services. Moreover, changes in provision over a 10-year period were monitored and variations in provision across the country were ascertained. Findings: Overnight breaks were the dominant form of family support in Ireland. However, they were available to fewer persons in 2017 compared to 2007, whereas the provision of home supports remained constant. Persons with severe and profound disabilities were those most likely to receive home supports or overnight breaks as were persons aged 30 years and over. There were persistent marked differences across the country in the provision of home supports, although the variation in the usage of overnight breaks had contracted somewhat in 2017. Applications: Additional investment is needed to provide supports for families, given the increasing numbers of persons with intellectual disabilities living at home. A wider range of support options would provide greater choice and arguably improve the cost-effectiveness of current resources. Frontline professionals, such as social workers, need to be to the fore in persuading service commissioners of these needs based on empirical data as well as their personal experiences. (Edited publisher abstract)
The social cost and rewards of caring
- Author:
- CLIFFORD Dermott
- Publisher:
- Avebury
- Publication year:
- 1990
- Pagination:
- 267p.,tables,bibliogs.
- Place of publication:
- Aldershot
A study of social services in relation to carers in Ireland, focusing on the Kerry area. Includes a literature review and an outline of study methods, and goes on to look more closely at carers of elderly people and mentally handicapped people. Explores the motivations of carers, and asks what positive experiences might be associated with long-term caring. Compares the Irish setting with similar studies in Britain, and the plight of female carers with male carers. Based on 76 case studies, outlined in an appendix.
Person‐centred respite supports: the perspectives of adults with intellectual disabilities in Ireland
- Author:
- GADD Teresa
- Journal article citation:
- British Journal of Learning Disabilities, 48(4), 2020, pp.281-290.
- Publisher:
- Wiley
Background: Respite supports are highly valued by persons with disabilities and their families/carers. In Ireland, there has been regular commentary in relation to a lack of respite services, with users and other stakeholders reporting limited access, inequity of provision, and long waiting lists for support. Materials and Methods: Much of the research on respite focuses on the views of carers, with little account of the experiences of persons with disabilities. This study examines the perspectives of twenty‐eight adults with intellectual disabilities; most are regular users of traditional and/or alternative respite services. Information was gathered through individual interviews and focus groups. Findings: Participants identified nine key elements of a person‐centred respite service; fun, time and space, choice, independence, friendships, compatible groupings, positive relationships with staff, flexible supports, and user involvement in service design and delivery. Conclusions: Person‐centred supports should enable individuals to achieve maximum well‐being and flourish in all aspects of their lives. This study found that at a personal level, respite services and the interactions that occur within them are person‐centred in that they support the individual to do the things they want to do, make everyday choices, try new activities, develop positive relationships, and have a good quality of life. However, at the level of service planning and decision‐making, there is less evidence of a person‐centred approach. Participants reported having little involvement in the design and delivery of respite services at local or national level. The development of a respite policy in Ireland, that considers the views of respite service users, would be welcome. (Edited publisher abstract)
An exploration of care‐burden experienced by older caregivers of adults with intellectual disabilities in Ireland
- Authors:
- EGAN Caroline, DALTON Caroline Teresa
- Journal article citation:
- British Journal of Learning Disabilities, 47(3), 2019, pp.188-194.
- Publisher:
- Wiley
Background: People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden. Materials and Methods: Thirty caregivers completed a survey questionnaire. Data were collected based upon participants’ self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24. Results: Over 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers. Conclusions: This study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings. (Edited publisher abstract)
'Special mothers' in Ireland: gender, identity and rhe social construction of caring for a relative with an intellectual disability
- Author:
- CRONIN Mary J.
- Journal article citation:
- International Journal of Care and Caring, 2(4), 2018, pp.575-580.
- Publisher:
- Policy Press
Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating to intellectual disability. Using the platforms of mothering and disability to examine the literature, this article sheds light on the cultural norms and societal discourses that influence 'who cares' for children and adults with disabilities. It highlights that 'who cares' is often a socially constructed ideology that results in a reconstructed identity for women. The impact on identity is discussed and suggestions are made regarding how discourse, policy and advocacy can support this cohort of carers. (Publisher abstract)
“What's going to happen when we're gone?” Family caregiving capacity for older people with an intellectual disability in Ireland
- Authors:
- BRENNAN Damien, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(2), 2018, pp.226-235.
- Publisher:
- Wiley
Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, institutionalisation and policy prioritisation of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing. Result: The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out-of-family home care. Conclusion: To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families’, to facilitate the early formation of long-term care plans. (Edited publisher abstract)
Family voices: life for family carers of people with intellectual disabilities in Ireland
- Authors:
- CHADWICK Darren D., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(2), 2013, pp.119-132.
- Publisher:
- Wiley
Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. The qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support. Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions. (Edited publisher abstract)
Chronic pain in people with an intellectual disability: under-recognised and under-treated?
- Authors:
- MCGUIRE B. E., DALY P., SMYTH F.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(3), March 2010, pp.240-245.
- Publisher:
- Wiley
This paper examines the nature, prevalence and impact of chronic pain in adults with an intellectual disability based on their primary carer’s reports. Questionnaires were sent to 250 care-givers, of which 157 responses were received (63%). Chronic pain was reported in 13% of the sample, 6.3% had pain in two sites and 2% had pain in three or more sites. Of those with chronic pain, 19 experienced mild chronic pain, while severe pain was reported for two service users. Pain problems were more prevalent in those with a mild intellectual disability than in those with more severe disability, possibly reflecting the ability of the mild group to communicate their pain. The most common form of treatment was non-prescription medication, and there was a notable absence of involvement of specialist pain services. The authors concluded that, given their increased risk for chronic pain, pain in the intellectual disability population may be under-recognised and under-treated, especially in those with impaired capacity to communicate about their pain.
'A Right to Know'. Facilitating a relationship and sexuality programme for adults with intellectual disabilities in Donegal
- Authors:
- GARDINER Tina, BRADDON Eileen
- Journal article citation:
- British Journal of Learning Disabilities, 37(4), December 2009, pp.327-329.
- Publisher:
- Wiley
This paper outlines the experiences of facilitators of a relationship and sexuality education pilot programme with adults with intellectual disabilities at 2 training centres in North West Ireland. Describing the context and development of the programme taking place in socially isolated communities, where religion still holds a large influence, this paper outlines the challenges faced, and the feedback it received. The programme, where each session lasted about 2.5 hours, addressed the problems intellectually disabled people faced when discussing sexuality, allowing them to talk to care workers even though it was a difficult and embarrassing subject. The programme also gave parents and carers training to support people with intellectual disabilities, and to inform them of the rights of those with disabilities. Feedback from both groups was positive.