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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)
Eliciting proto-imperatives and proto-declaratives in children with intellectual disabilities
- Authors:
- VANDEREET Joke, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(2), March 2010, pp.154-166.
- Publisher:
- Wiley
Whilst structured elicitation tasks are known to be efficient means to sample communication in children with intellectual disabilities, their validity and reliability require evaluation. The aims of this study were: to evaluate the eliciting potential; to examine the utterance forms of proto-imperative and proto-declarative intentions; and to evaluate the reliability of two high-structured elicitation tasks. Twenty-eight children with intellectual disabilities (all having severe problems acquiring symbolic language skills) participated in a standard assessment battery, consisting of a formal language assessment, a parent questionnaire, and elicitation tasks for both proto-imperatives proto-declaratives. These tasks elicited significantly more proto-imperatives than proto-declaratives, with proto-imperatives being predominantly expressed with gestures and proto-declaratives predominantly with vocalisations. Medium to large correlations were found between the elicitation tasks and the other communication and language instruments. The authors concluded that while several factors need to be considered to account for the observed differences in frequency and utterance forms of the elicited proto-imperatives versus proto-declaratives, nevertheless, the overall results suggest that the elicitation tasks for proto-imperatives and proto-declaratives can be reliably used in children with intellectual disabilities.
Place in Europe
- Author:
- HOPKINS Graham
- Journal article citation:
- Community Care, 27.01.05, 2005, pp.46-47.
- Publisher:
- Reed Business Information
Phil Madden, Director of service development at the Home Farm Trust, describes the organisations involvement in a one year project 'Families In' funded by the European Commission. The project involved partners from Sweden, Finland, Spain, Belgium and Hungary. He describes the challenges and rewards of the project.
A visual report on what is of value for people with intellectual disabilities in a Flemish care organisation
- Authors:
- BENOOT Toon, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 46(4), 2021, pp.375-387.
- Publisher:
- Taylor and Francis
Background: This paper presents the findings from a qualitative research project that explored what ten people with intellectual disabilities who receive care and support in a residential care facility deem valuable for living a good life and what the opportunity to manage resources for care and support themselves means to them. Method: With the use of photovoice, the 10 participants documented their care and support, and by extension, their own lives. We describe how the project was carried out and the facilitating and obstructing factors we encountered. Results: The collected images and related personal stories teach us about the central importance of significant others to the lives of the participants and their vital role as “necessary others” who nurture a multitude of possibilities. Conclusions: The increasing policy focus on independence and self-sufficiency is opposed to the vital role of relationships in the participants' view of a good life. (Edited publisher abstract)
Family-centered practices in home-based support for families with children with an intellectual disability: judgments of parents and professionals
- Authors:
- VANDERKERKEN Lien, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 25(3), 2021, pp.331-347.
- Publisher:
- Sage
- Place of publication:
- London
Background: The realization of the family-centered approach (FCA) in home-based support (HBS) for families with children with an intellectual disability (ID) in Flanders was investigated, and parents’ and family workers’ perspectives were compared. The relation between parents’ educational level, the family worker’s education, and his/her experience in HBS; and parents’ and family workers’ judgments on the realization of the FCA was considered. Method: Parents (N = 58 families) and family workers (N = 46) completed the helpgiving practices scale and the enabling practices scale. Results:The FCA was largely present, parents rated its realization higher than family workers. Considering family workers’ answers, parents’ educational level appeared an important factor for parental autonomy. Conclusions: The study confirms recent research on the realization of the FCA. Including different perspectives, a nuanced view on the realization of the FCA was obtained. Further research on the concrete meaning, interpretation, and elaboration of the FCA is needed. (Edited publisher abstract)
Decision-making after prenatal diagnosis of a syndrome predisposing to intellectual disability: what prospective parents need to know and the importance of non-medical information
- Author:
- HUYARD Caroline
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 37(4), December 2012, pp.315-323.
- Publisher:
- Taylor and Francis
A study conducted in France, Belgium and Germany investigated what type of information prospective parents need for decision-making about continuing or terminating a pregnancy in the case of a condition predisposing to intellectual disability. 33 parents whose young or adult children had an intellectual disability were recruited through self-help groups, and took part in semi-structured interviews covering discovery of the syndrome, parenting practices, moral feelings regarding the child's behaviour, and personal dimensions of the experience of having such a child. Data analysis focusing on decision-making highlighted the importance of 3 types of information: the foetus as a future child and individual person, the couple as future parents, and the social environment of the future child and his or her parents and its capacity to support them. The article discusses these categories of information in relation to the decisions the interviewees retrospectively considered they would have made had they known about their child's syndrome at a prenatal stage. It includes quotations from participants. The authors conclude that their findings demonstrate that prospective parents' essential information needs are not limited to medical information.
'I need help on Mondays, it's not my day. The other days, I'm OK'. Perspectives of disabled children on inclusive education
- Authors:
- de SCHAUWER Elisabeth, et al
- Journal article citation:
- Children and Society, 23(2), March 2009, pp.99-111.
- Publisher:
- Wiley
This article examines the experience of inclusive education from the perspective of disabled children. The study uses observations of, and interviews with, 15 children, aged 5–17 who go to a mainstream school. The study is set in the context of a 3-year research project exploring the practice of inclusive education in Flanders. The authors report on the key findings from the children's accounts, focusing on what they had to say about themselves, what they think about school, friends, support and their future prospects.
Program development of reminiscence group work for ageing people with intellectual disabilities
- Authors:
- VAN PUYENBROECK Joris, MEAS Bea
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 31(3), September 2006, pp.139-147.
- Publisher:
- Taylor and Francis
The goal of this study was to adapt a narrative reminiscence program for the special needs of ageing people with mild/moderate intellectual disabilities. Research has shown that stimulating reminiscence in the elderly can be a meaningful activity, and holds promise for positive effects on well-being. In the first stage (10 weeks), the program was developed with 1 group. Evaluation and adjustments to the program were made based on video recordings, the researcher's log, and feedback from participants and support workers. Formative evaluation was performed by means of a within group analysis. In the second stage (3 weeks), the program was introduced to 6 other groups. Interviews with professional support workers were subjected to a cross-case analysis. The final program consists of 13 sessions covering different reminiscence themes. The success of reminiscence group work relies on (a) well-prepared and structured sessions, (b) adequate use of visual triggers, and (c) facilitating, coaching and moderating. The program was perceived as a valuable and meaningful activity by all participants. Although reminiscence group work is not therapeutic in nature, it may have therapeutic use for ageing people with intellectual disabilities, and in this sense is worth evaluating.
Partnership working between university researchers and self-advocacy organizations; 'a way forward for inclusion?’ in England and ‘Fine feathers make a fine bird’ in Flanders
- Authors:
- SCHOETERS Ludo, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 9(4), December 2005, pp.345-357.
- Publisher:
- Sage
- Place of publication:
- London
This article gives accounts of differing experiences of self-advocate partnerships in research with universities in England and Flanders. In England the partnership grew up within a local People First group built upon a personal working relationship with one support person. It is focused almost exclusively on empirical research and, because it is aimed at influencing policy and practice, questions of funding and control are to the fore. In Flanders the partnership is closely linked with the development of a national movement of self-advocates in which the university was a close ally. Research is important in both contexts but in Flanders the university is more clearly identified with the wider movement. Partnerships have their ups and downs but in both countries researchers with the label ‘learning difficulties’ wish to set their own agendas and place great importance on trust in their work with their support worker (England) or ally (Flanders).
Modern times: an ethnographic study on the quality of life of people with a high support need in a Flemish residential facility
- Authors:
- de WAELE Isabel, Van HOVE Geert
- Journal article citation:
- Disability and Society, 20(6), October 2005, pp.625-639.
- Publisher:
- Taylor and Francis
This ethnographic study shows the impact of the care system on clients’ and staff’s life experiences, with the clear distance between these two groups as one of the core issues. Together with a dominant care approach and a well established but subtile system of control, it makes them function in systems that are characterized by an oppressing care culture. Learned helplessness prevents both groups of acting upon quality of life outcomes. The idea of supporting a life of good quality through merely improving these traditional care systems should therefore be considered with caution, and real alternatives should be considered to open this barrier of the oppressing care culture.