List of Titles

The need to know : the information needs of parents of infants with an intellectual disability-a qualitative study

- Douglas, Tracy, Redley, Bernice, Ottmann, Goetz

Authors: Douglas, Tracy , Redley, Bernice , Ottmann, Goetz
Date: 2017
Type: Text , Journal article
Relation: Journal of Advanced Nursing Vol. 73, no. 11 (Nov 2017), p. 2600-2608
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Description: Aim: The aim of this study was to explore the information needs of parents of infants with an intellectual disability in the first year of life. Background: Parents whose infant has an intellectual disability need access to information if they are to facilitate optimal care for their child. A lack of timely, accurate information provision by health professionals, particularly nurses and midwives, can increase parental stress and hinder access to the supports they and their infant require. Design: A qualitative descriptive methodology was used for the study. Methods: Qualitative interviews were undertaken with parents of 11 children with intellectual disabilities in Victoria, Australia in 2014. Data were analysed using descriptive thematic analysis. Findings: Parents experienced challenges accessing quality information during the first year of their child's life. Parents required incremental information provision to build a strong knowledge base to facilitate optimal care for their infants. Three types of knowledge were identified as crucial for parents: knowledge about (1) the infant's condition; (2) the infant's specific needs and (3) available supports and services. Health professionals were the key resource to access this information. Conclusion: Health professionals’ responsibilities include providing relevant, timely information to parents of infants with intellectual disabilities. This study conceptualises three types of information parents need to develop a strong knowledge base to guide their infant's care and provides guidance concerning the optimal timing for the delivery of information. © 2017 John Wiley & Sons Ltd

‘I walk from trouble’ : exploring safeguards with adults with intellectual disabilities – an Australian qualitative study

- Ottmann, Goetz, McVilly, Keith, Maragoudaki, Margarita

Authors: Ottmann, Goetz , McVilly, Keith , Maragoudaki, Margarita
Date: 2016
Type: Text , Journal article
Relation: Disability and Society Vol. 31, no. 1 (2016), p. 47-63
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Description: People living with intellectual disabilities have a right to be safe from abuse and neglect and have a right to be included in the decision-making process determining safeguards that will affect them. However, the research evidence that could underpin good professional practice in terms of co-producing safeguards against abuse and neglect directly involving people with intellectual disabilities is largely missing. This article, based on qualitative research involving semi-structured interviews conducted during the first half of 2014, seeks to strengthen this evidence base. It reports on the prevention strategies identified by 12 adults with intellectual disabilities about how to stay safe and compares these with the findings of similar research. The article suggests that a comprehensive safeguarding approach comprises both life course-focused safety training and access to assisted decision-making. The article argues that given the plethora of risk situations encountered by people living with intellectual disability, assisted decision-making should take the form of a co-creation process that is situation specific and grounded in everyday life. © 2016 Taylor & Francis.

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Peer educators in the facilitation of sexuality and respectful relationship education for people with an intellectual disability : a scoping review and narrative synthesis

- James, Michelle, Porter, Joanne, Kattel, Sumitra, Prokopiv, Valerie, Hopwood, Peter

Authors: James, Michelle , Porter, Joanne , Kattel, Sumitra , Prokopiv, Valerie , Hopwood, Peter
Date: 2022
Type: Text , Journal article
Relation: Sexuality and Disability Vol. 40, no. 3 (2022), p. 487-502
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Description: A scoping review was conducted to identify how peer-education models are being used in sexuality and respectful relationship education for people with a disability. The search was conducted in August 2021 using the Joanna Briggs framework to scope and map the literature and research activity. Using strict criteria, 7 online databases, grey literature and reference lists were searched for resources written or published in the last 15 years (2006–2021). Relevant sources were shortlisted and assessed by the two authors. Six sources met the criteria for inclusion in this review. In total, four educational programs are described and discussed. The results identify four sexuality and respectful relationship programs that met screening criteria: (1) “Telling it like it is!”, (2) “Sexual Lives and Respectful Relationships”, (3) “Talking about sex and relationships: the views of young people with learning disabilities”, and (4) “Health, Safety & Sexuality Training for You & Me”. Peer-educators experienced increased confidence and feelings of empowerment, while people without an intellectual disability reported a greater understanding of the challenges and experiences of people with a disability. The use of peer educators to deliver sexuality and respectful relationship education for people with intellectual disability is a promising education model with multiple potential benefits for participants. However, more research is needed to understand the consequences and limitations of such programs. © 2022, Crown.

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