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There is a growing recognition of the need to provide sex education to people with learning disabilities, as well as their right to achieve such education. Despite a desire to help with this, social workers and other health professionals can lack the confidence and tools to deliver sex education to this population. In an effort to accumulate evidence of best practice thus far, a narrative review of the literature will be conducted to answer the following question: What interventions are available within social work practice for the delivery of sexuality education to people with learning disabilities? By identifying the key consistencies and inconsistencies across effective interventions, feasible interventions can be established and further research identify.
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Background and Rationale
In the past, people with learning disabilities were excluded from sexual education or help with issues around their sexuality. Fortunately, in modern day society this exclusion is beginning to change, which is in part due to a shift from institutionalised care to supported living. This has resulted in an increase in independent living as well as a greater acknowledgement of the needs of people with learning disabilities. Furthermore, the myth that people with learning disabilities are ‘eternal children’ (McCarthy, 1999) no longer holds sway and it is acknowledged that people with learning disabilities are not asexual; they have the same needs as people without a learning disability, including needs regarding sexuality.
The Sex and Relationships research project, set up in 2007, was particularly influential in challenging the previously faulty beliefs and myths that maintained the exclusion of people with learning disabilities. This was a 3-year research programme conducted by CHANGE (2009), a national organisation that fights for the rights of people with learning disabilities. As part of this project it was found that people with learning disabilities, aged 16-25 years old, shared that they were not told about sex and relationships when they were younger. Furthermore, they also said that if they had been given better sex education, they might have made different choices as adults. This highlights a clear unmet need experienced by people with learning disabilities, as well as indicates that these unmet needs discriminate individuals via reduced choice in adulthood.
Professionals working within the field of learning disabilities, including social workers, remain reluctant to become involved in sexuality education due to lack of confidence and lack of availability of educational materials designed for this population (Howard-Barr et al., 2005). They want to support people with learning disabilities, but do not have the information or skills to do so (Garbutt, 2008). Thus, there is a need to establish effective interventions designed to equip social workers and other healthcare professionals with the personal and professional tools necessary to deliver sex education to people with learning disabilities. This provides the rationale for a narrative review of the literature.
The research question posed from the background literature is:
What interventions are available within social work practice for the delivery of sexuality education to people with learning disabilities?
What effective interventions are already available?
What are the key concepts and theories relevant to effective interventions?
How has efficacy of interventions been assessed?
What are the key consistencies and inconsistencies across studies?
What answers remain?
Research Design and Methods
A narrative review of the literature will be conducted in order to identify interventions available within social work practice for the delivery of sexuality education to people with learning disabilities. A narrative review has been selected due to its recommended use with comprehensive topics (Collins and Fauser, 2005), and the benefits that derive from being able to include subjective interpretations based on personal experience of social work practice. Social work is a person-centred and holistic discipline that warrants this phenomenological approach. Furthermore, a narrative review can be used to synthesise evidence from both quantitative and qualitative studies, thus benefiting from the strengths of both approaches, the former of which offers scientific rigour and the latter of which offers subjectivity and depth.
The relevant literature will be synthesised through the use of data extraction forms (appendix 1), the identification of key themes and controversies between studies, and the development of a considered narrative for each key theme.
By identifying established knowledge within this area, as well as where gaps in knowledge remain, conclusions will be made on the efficacy of different interventions or techniques that social workers could utilise in the delivery of sexuality education to people with learning disabilities.
Inclusion and Exclusion Criteria
Inclusion in this review will be confined to primary research meeting the following additional inclusion criteria:
Randomised control trials (RCTs); control trials; prospective pre- and post-test cohort studies; qualitative studies.
The study needs to be testing or exploring an intervention for the delivery of sexuality education to people with learning disabilities.
Population: social workers or other healthcare professionals working with people who have learning disabilities.
Studies conducted over the last 5 years (2006-2011).
In addition, the following exclusion criteria apply:
Studies conducted before 2006.
Studies that do not meet the pre-defined inclusion criteria.
A search of the literature will be undertaken using Boolean logic, which will allow for a more sensitive search of the title and abstracts of the following databases: the Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline, Embase, PsychINFO and The Cochrane Library of clinical trials. Keywords to be searched include “learning disabilities” OR learning dis*AND sex* AND educ* OR train* OR interv* OR intervention studies. The truncation symbol (*) will be applied to search for words that might have various endings (e.g. sex* will find sex, sexuality, sexual).
The reference list of all articles that are obtained in full will also be hand-searched for relevant studies. In addition, two key social work journals will be hand-searched from 2010 to 2011 to identify the most up to date research in this area: British Journal of Social Work and Journal of Social Work.
The title and abstracts of all literature identified by the search strategy will be scanned for relevance, with irrelevant or duplicate articles being excluded. All records meeting the pre-defined inclusion criteria will be obtained in full for data extraction. A data extraction form recommended by the National Institute of Clinical Excellence (NICE, 2010) will be used to elicit key details from each of the studies obtained (appendix 1), including: study design; intervention; and, main findings.
Synthesis of Findings
Thematic content analysis will be used to identify key themes across studies, followed by the identification of convergent and divergent findings within these key themes (Aveyard, 2010). Narratives will be created for the most prominent themes. A critical analysis of how social work practice could be informed, developed and improved with respect to the evidence obtained from this review will be included, with a specific emphasis on the importance of evidence-based practice.
Study Resources, Risks and Timetable
Internet databases that provide access to academic peer reviewed journals will be the primary source utilised for searching the literature. The university library will also be a valuable resource for locating learning disability and social work journals that can be hand-searched, as well as providing access to a librarian who can be asked for advice on suitable web-based subject gateways. In addition, the reference lists of reviewed articles are a source of access to further relevant research.
Ethical approval will not be required for this review.
A timetable for completing this review is presented in Table 1, with the deadline for submitting the reviewing being February 2012.
Table 1: Timetable for Review
Choose research question based on scoping of the literature and consideration of relevant policy.
Beginning of March 2011
Conduct a preliminary literature search to gather information on the background and rationale for review.
Develop a review proposal and timetable, including search strategy and inclusion criteria, etc.
End of March 2011
Conduct first search of the literature, utilising selected web-based databases, excluding irrelevant or duplicate records and obtaining the full text of remaining records. Complete data extraction forms for each study.
April and May 2011
Hand-search selected journals, obtaining the full text of relevant records and completing data extraction forms for each study.
Hand-search the reference lists of all articles included from the database and journal searches, obtaining the abstract of potential articles of relevance. Exclude those that become irrelevant on closer inspection and obtain the full text of remaining references. Complete data extraction forms for each study.
Identify the key themes and controversies between studies. Write a narrative for each key theme, including objective discussion of studies and subjective interpretations in relation to experience, knowledge, and social work policy.
August and September 2011
First draft of introduction and rationale chapter.
First draft of methods and results.
First draft of discussion chapter.
First full draft of review – make necessary adjustments and finalise.
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