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Parental experiences with behavioural problems in Smith-Magenis syndrome: the need for syndrome-specific competence
- Authors:
- NAG Heidi Elisabeth, HOXMARK Lise Beate, NAERLAND Terje
- Journal article citation:
- Journal of Intellectual Disabilities, 23(3), 2019, pp.359-372.
- Publisher:
- Sage
- Place of publication:
- London
The experience of having a rare disorder was summarised in a large study as ‘falling outside the vast field of knowledge of the professionals’. Parents (31 mothers and 17 fathers) of 32 persons with Smith–Magenis syndrome (SMS) participated in this study. A phenomenological approach was used to analyse the data into topics and themes. Four themes emerged: behavioural challenges displayed, parents’ strategies for meeting the challenging behaviours, parents’ experiences of their own competence and parents’ experiences of professionals’ competence and understanding regarding children with SMS and their behaviour challenges. This study found that parents of children with SMS experience that they are exposed to severe challenging behaviours from their child. The parents believe that they experience more misunderstandings with professionals and that the challenging behaviours increase because there are some specific characteristics of SMS that professionals are not aware of or do not consider in their support services. (Edited publisher abstract)
Communication and challenging behaviour
- Authors:
- CHALLENGING BEHAVIOUR FOUNDATION, (Producer)
- Publisher:
- Challenging Behaviour Foundation
- Publication year:
- 2007
- Pagination:
- (45 mins.), DVD
- Place of publication:
- Chatham
Using interviews with two parent carers, and with specialist input from Peter McGill (Senior Lecturer in Learning Disability at the University of Kent at Canterbury Tizard Centre), this 40 minute video gives a basic introduction to challenging behaviour associated with severe learning disabilities. The video has been produced for parents and carers of individuals with severe learning disabilities and challenging behaviour, or anyone wanting to understand what it can be like for the families involved.
Experiences of parents who support a family member with intellectual disability and challenging behaviour: “This is what I deal with every single day”
- Authors:
- DREYFUS Shoshana, DOWSE Leanne
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(1), 2020, pp.12-22.
- Publisher:
- Taylor and Francis
Background: Research into parents’ experiences of living with a family member with intellectual disability and challenging behaviour does not specifically address what parents say about themselves and their lives. This paper explores “I-statements” parents made about their day-to-day actions in life with their family member. Methods: Semi-structured interviews were conducted with 26 parents, of which 91% were mothers. “I-statements” were analysed using process analysis from systemic functional linguistics and thematic analysis. Results: “I-statements” showed that parents enacted a range of complex and sometimes extreme activities across a variety of life domains. Parents spoke about: managing relationships with services; educating themselves and others; seeking support; resisting poor service delivery; assisting others; and making both small and significant changes. Conclusion: The paper provided insights into the complex lives of these families and offered observations on the implications of the potential misalignment between the supports the data suggests are needed and those that, in reality, are available to them. (Edited publisher abstract)
Using interactive web training to teach parents to select function-based interventions for challenging behaviour: a preliminary study
- Authors:
- MARLEAU Brigitte, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 44(4), 2019, pp.492-496.
- Publisher:
- Taylor and Francis
Background: Children with a developmental disability often engage in challenging behaviour, which may require that parents implement behavioural assessments and interventions. The purpose of the pilot study was to examine the effects of an interactive web training (IWT) to teach behavioural function identification and intervention selection to parents. Method: Twenty-six parents of children with a developmental disability responded to function identification and intervention selection tasks on clinical vignettes before and following IWT. the researchers also measured social validity and the duration of training. Results: The results show that parents were more accurate in the identification of behavioural function and selected more adequate interventions following IWT. On average, parents spent less than 2.5 h to complete IWT and rated it positively. Conclusions: The IWT appears to be a viable tool to teach parents about function-based intervention, but additional research is needed to examine whether it translates to changes in parental practices and child behaviour. (Edited publisher abstract)
Learning from the experts: a thematic analysis of parent's experiences of attending a therapeutic group for parents of children with learning disabilities and challenging behaviour
- Authors:
- THOMPSON-JANES Emily, et al
- Journal article citation:
- British Journal of Learning Disabilities, 44(2), 2016, pp.95-102.
- Publisher:
- Wiley
The Confident Parenting group is a therapeutic group for parents of children with learning disabilities and challenging behaviour, which is informed by the principles of behavioural theory and acceptance and commitment therapy. Parent's experiences of the group were elicited through participation in a large focus group which followed a semistructured interview format with questions and discussion guided by the lead researcher. This aimed to elicit information about parent's overall experiences of attending the group and its perceived effectiveness. Thematic analysis was used to draw themes from parent's rich narratives. Four main themes were identified: (i) parent's pre-group narratives, (ii) barriers and solutions, (iii) positive aspects of Confident Parenting and (iv) positive outcomes of Confident Parenting. The themes highlighted how beneficial parents found Confident Parenting as well as raised helpful ideas about how to engage families where there are practical and personal barriers to attending. (Publisher abstract)
New ways of seeing and being: evaluating an acceptance and mindfulness group for parents of young people with intellectual disabilities who display challenging behaviour
- Authors:
- REID Caroline, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 20(1), 2016, pp.5-17.
- Publisher:
- Sage
- Place of publication:
- London
The current study presents findings from an acceptance and commitment therapy-based intervention for family carers of children who have an intellectual/developmental disability and display high levels of challenging behaviour. The parent well-being workshops consist of two workshops incorporating acceptance and mindfulness-based exercises and discussions. Semi-structured interviews were conducted with five family carers following attendance of the workshops. Participants found the workshops useful and reported that they were better able to cope with stress. They also described how they had incorporated mindfulness into their daily lives and how their practice had had positive effects on their own well-being and on those around them (e.g. their child). Implications of the findings are discussed with emphasis on how the workshops can be included within a positive behaviour support framework. Future directions include a more robust quantitative evaluation, inclusion of follow-up sessions and the application of the workshops with other client groups and in other delivery formats. (Publisher abstract)
Parental perceptions of the use of coercive measures on children with developmental disabilities
- Authors:
- SALOVIITA Timo, PRITTIMAA Raija, KONTU Elina
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(1), 2016, pp.11-20.
- Publisher:
- Wiley
Background: Children with developmental disabilities who exhibit challenging behaviour are potentially subject to the use of coercive interventions. The aim of the study was to investigate the prevalence of the use of coercive measures by authorities, according to parents’ reports. Materials and Methods: A postal survey was distributed, as a total population study, to 946 Finnish parents of children with developmental disabilities, between the ages of 5 and 15, and who were entitled to the highest disability allowance. Results: Of the respondents, 54 (22%) answered ‘yes’ when asked whether their child had been subjected to coercive procedures by authorities. The parents had seldom approved the use of coercive means and often believed that such means had negative effects on their child. Conclusions: To protect the children's rights, the use of coercive measures should be regulated more strictly, and positive intervention strategies should be taught to teachers and nurses. (Publisher abstract)
Father participation with mothers in the Signposts program: an initial investigation
- Authors:
- MAY Fiona S., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 38(1), 2013, pp.39-47.
- Publisher:
- Taylor and Francis
The Signposts program is an evidence-based intervention system for parents of children with intellectual disability and problem behaviours. This study provided an initial investigation of the outcomes for mothers associated with father participation in Signposts, using data collected from the Signposts Statewide project, conducted in Victoria, Australia. Data from Signposts Statewide were analysed, with the effect size Cohen's d and 95% confidence interval around d calculated for pre- to post-program changes for 134 mothers who participated in Signposts with fathers and 483 mothers who participated without fathers. Although mothers in both groups benefitted from the program, as evidenced by pre- to post-program improvements across all measures, the mean effect size was notably larger for mothers who participated in Signposts with fathers. These results highlight possible further program benefits for mothers who participate in Signposts with fathers, and are of particular significance in light of research describing the increased stress experienced by mothers of children with a disability. (Publisher abstract)
Parents' use of physical interventions in the management of their children's severe challenging behaviour
- Authors:
- ALLEN David, COOPER Viv
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 19(4), December 2006, pp.356-363.
- Publisher:
- Wiley
Although training staff supporting people with challenging behaviour in physical interventions has become accepted practice, parents are often left to fend for themselves while managing equivalent behaviours. The study explores parents' experience of managing severe challenging behaviours, their use of physical interventions and access to training in reactive strategies. A postal survey methodology was employed that utilized a novel 20-item questionnaire. The questionnaire yielded both quantitative and qualitative data concerning the types of challenging behaviour displayed by the children, frequency of use and nature of physical interventions, types of training received and any difficulties experienced in obtaining training. The sample was drawn from the membership of the Challenging Behaviour Foundation, a UK charitable organization, and comprised of 72 respondents. The majority of respondents had experienced major episodes of challenging behaviour. The emotional impact of living with such behaviours was apparent. Although the vast majority of respondents had employed restrictive physical interventions, few had received any formal training in such strategies. There was evidence that a number of high-risk physical interventions were sometimes being employed. Accessing training appeared more problematic for parents when compared with paid care staff. In this specific sample, parental use of physical intervention was high while parent training in physical intervention was uncommon. Impediments to parent training in physical intervention are discussed, as are wider issues concerning parental support.
The use of disciplinary and escapism methods for coping with the behavioural problems of a child suffering from Tourette syndrome
- Author:
- DAVIS L.
- Journal article citation:
- Social Work Maatskaplike Werk, 35(1), March 1999, pp.1-10.
Describes methods for dealing with problem behaviours of children with Tourette syndrome.