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A survey of complex trauma in families who have children and adults who have a learning disability and/or autism
- Authors:
- BAKER Peter, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 15(5), 2021, pp.222-239.
- Publisher:
- Emerald
Purpose: There is an established literature supporting the idea that families who have children and adults who have a learning disability and/or autism have a greater vulnerability to mental health problems or poor psychological health. There are shortcomings in this literature in that there is a little consideration of the impact the families interaction with services has on their well-being. It is argued that complex post-traumatic stress disorder (CPTSD), with its focus on prolonged chronic exposure to trauma experiences and the recognition that this can occur in adulthood, may well be an appropriate framework to enable a better understanding of the experiences of families. Design/methodology/approach: A total of 214 family members completed a co-produced online survey in relation to potential traumatic events, impacts and support. Findings: The experiences of family carers of children and adults with a learning disability and/or who are autistic would appear to be multi-layered and complex, with many experiencing a wide range of traumatic events with the associated emotional and personal sequela. The reported responses are consistent with CPTSD with 10% of having received a diagnosis of PTSD. Their experience was that the system failed not only to provide support but also created additional trauma. Practical implications: A trauma-informed approach needs to be adopted by agencies and professionals that serve families to ensure they understand their potential contribution to the trauma families experience. Originality/value: To the best of the authors’ knowledge, this is the first study that has attempted to examine the experience of families using the framework of CPTSD. (Edited publisher abstract)
Family experiences of personalised accommodation and support for people with intellectual disability
- Authors:
- GARCIA-IRIARTE Edurne, McCONKEY Roy, VILDA Dovile
- Journal article citation:
- Journal of Intellectual Disabilities, 25(4), 2021, pp.476-489.
- Publisher:
- Sage
- Place of publication:
- London
Previous studies suggest that family members of people with intellectual disabilities prefer them to move to supervised living arrangements such as group homes. In Ireland, personalised arrangements are emerging, but families have had little exposure to this option. In this qualitative study, we explored the perspectives of family members following their relative’s move to personalised support options, mostly from group homes. Semi-structured interviews were conducted in 2011 with a family member of 17 people who had previously moved, with follow-up interviews held with 12 of them up to 18 months later. Thematic analysis on interview transcripts was conducted by three researchers. The family members spoke favourably of the new arrangements. A core theme of enabled independence emerged with subthemes of greater self-reliance in personal care, increased confidence, more social inclusion and gains for relatives. Reservations focussed on the need for more support hours, managing risk and loneliness. (Edited publisher abstract)
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)
Factors influencing access to early intervention for families of children with developmental disabilities: a narrative review
- Authors:
- SAPIETS Suzi J., TOTSIKA Vasiliki, HASTINGS Richard P.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(3), 2021, pp.695-711.
- Publisher:
- Wiley
Background: Early intervention (EI) can improve a range of outcomes for families of children with developmental disabilities. However, research indicates the level of access does not always match the level of need. To address disparities, it is essential to identify factors influencing access. Method: We propose a framework where access to EI is conceptualised as a process that includes three main phases. A narrative review examined potential barriers, facilitators and modifiers of access for each phase. Results: The process of access to EI includes the following: 1) recognition of need, 2) identification or diagnosis and 3) EI provision or receipt. Several factors affecting access to EI for each phase were identified, related to the family, services, the intersection between family and services, and the context. Conclusion: A broad range of factors appear to influence the process of access to EI for this population. Our framework can be used in future research investigating access. Broad implications for policy, practice and future research to improve access to EI are discussed. (Edited publisher abstract)
Family network typologies of adults with intellectual disability: associations with psychological outcomes
- Authors:
- TOURNIER Tess, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(1), 2021, pp.65-76.
- Publisher:
- Wiley
Background: Based on self‐reported social capital, different typologies of family networks of people with intellectual disabilities were examined. Associations between behavioural and emotional problems or well‐being and typologies were investigated. Method:137 participants with mild intellectual disability were interviewed using the Family Network Method‐Intellectual Disability to assess their emotionally supportive family relationships. Data on participants’ well‐being and behavioural and emotional problems were also gathered. Latent class analysis was used to identify family typologies based on social network measures. Results: Four distinguishable typologies were identified, two supportive and two less supportive. A small association was found with behavioural and emotional problems and one of the supportive typologies. Associations with constructs of well‐being were found for both supportive and less supportive typologies. Conclusions: A variety of family types were found, with implications for sensitive professional support. (Edited publisher abstract)
Approaches to and outcomes of future planning for family carers of adults with an intellectual disability: a systematic review
- Authors:
- BRENNAN Damien, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(6), 2020, pp.1221-1233.
- Publisher:
- Wiley
Background: People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities. Method: This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning for adults with intellectual disability by family carers. Results: This systematic review identified a scarcity of systematic approaches to future care planning for adults with intellectual disabilities and their family carers. However, evidence from the review suggests positive outcomes for families once they engage in a future planning process. Conclusions: Contemporary social policy orientation, which emphasizes reliance on families to provide care, along with an ageing population of people with intellectual disabilities, and diminishing caring capacity within family networks, suggests an urgent need for a more expansive research base that evaluates approaches to supporting adults with intellectual disabilities and their family carers to plan for their futures. (Edited publisher abstract)
The relation between family quality of life and the family‐centered approach in families with children with an intellectual disability
- Authors:
- VANDERKERKEN Lien, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 16(4), 2019, pp.296-311.
- Publisher:
- Wiley
Although family quality of life (FQOL) and the family‐centered approach (FCA) are often conceptually linked, empirical research on their relation is scarce. This study investigated the relation between the FCA and FQOL in families with a child (0–18 years) with an intellectual disability receiving home‐based support (HBS) in Flanders. The impact of the parental work situation and the child's support needs on FQOL (domains) were studied too. Through the Helpgiving Practices Scale (HPS) and the Enabling Practices Scale (EPS), parents of participating families (n = 58) reported about the FCA in their families' HBS. Using the Beach Center FQOL Scale, mainly mothers reported about their families' quality of life. The relation between the realization of the FCA, parental employment, and the child's support needs on the one hand, and FQOL on the other hand was studied via multiple regression analyses. Additionally, the best predicting model was determined for FQOL (domains). Globally, a positive relation between FQOL and the FCA was found. Dependent on the FQOL domain, a different relation was identified with the family‐centered components. Components of the EPS (i.e., comfort and parental autonomy) were better predictors than those of the HPS. The parental work situation was a significant predictor for satisfaction regarding total FQOL (with and without disability‐related support), family interactions, and parenting. The child's support needs were a significant predictor for emotional well‐being. As the first of its kind, this study investigated the relation between FQOL and the FCA in detail. More, in depth, and especially long‐term research is, however needed to fully understand the relation between FQOL and its contributors. (Edited publisher abstract)
Families’ views on their relatives with intellectual disability moving from a long-stay psychiatric institution to a community-based intellectual disability service: an Irish context
- Author:
- DOODY Owen
- Journal article citation:
- British Journal of Learning Disabilities, 40(1), March 2012, pp.46-54.
- Publisher:
- Wiley
In Ireland in recent years there has been a shift regarding the care of people with intellectual disability from a psychiatric hospital to residential homes within both community- and campus-based accommodation. This study aimed to explore families’ views regarding the movement of people with intellectual disability from a long-stay psychiatric institution to campus-based accommodation within a local intellectual disability service. The client group involved in the transfer consisted of 36 individuals who moved to 6 campus-based bungalows. Interviews were conducted with 11 family members and the data transcribed. Two key themes were identified: the positive transition resulting from the move; and the enlightened thinking that has developed as a consequence of the move. Overall the families expressed positive thoughts about the move to community houses, believing that life was better for their family members in the community compared to the institution. The study indicates the importance of care and care delivery from the family’s perspective, and the interaction of staff with families.
Family fall-outs and how to avoid them
- Author:
- SCOWN Steve
- Journal article citation:
- Learning Disability Today, April 2010, pp.26-27.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The families of people with learning disabilities and autism often complain of feeling unimportant and left out when service providers get involved. Their impression can be that important decisions are made without their involvement, and that all their years of love and intimate knowledge go unnoticed and unheard. Professionals have as their priority the well-being of the person at the centre, not their family, and may even see the parents and families as meddlers. This article argues that most family members are just trying to do the best for their relative, and that most people with learning disabilities will benefit from having their family actively involved in their lives and forming an integral part of their support team. The article discusses the challenges of how to develop a family-friendly approach which involves a cultural shift in services and different ways of working with families, and also the need to adapt to the changing social market that personalised support has introduced and proactively engage with families. It describes a family reference group, Forward with Families, set up by the support provider Dimensions, in order to assist in developing and implementing a whole organisational approach.
Quality of life: Its application to persons with intellectual disabilities and their families -introduction and overview
- Authors:
- BROWN Roy I., SCHALOCK Robert L., BROWN Ivan
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(1), March 2009, pp.2-6.
- Publisher:
- Wiley
The authors provide an overview of quality of life (QoL) conceptualization in the field of intellectual disabilities (ID), provide background information, and set an organizing framework for presenting concepts and concrete ideas for applying QoL. This framework is useful for three broad categories of application in the field of ID that form the application of QoL to individuals, groups of individuals, and to families. QoL thus can be used as a sensitizing notion that gives a sense of reference and guidance from the individual's perspective, focusing on the person and the individual's environment and provides a framework for conceptualizing, measuring, and applying the QoL construct. The applications also frame evaluation strategies for QoL research. The authors conclude that there is a need to identify relevant QoL evidence from the literature in a proactive way, and to ensure that it is methodologically sound, provides both quantitative and qualitative data, represents inter- and intra-individual variability, and illustrates changes over both the lifespan and across cultural settings.