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Support Workers' Understanding of Their Role Supporting the Sexuality of People with Learning Disabilities

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Title: Support Workers' Understanding of Their Role Supporting the Sexuality of People with Learning Disabilities
Language: English
Authors: Maguire, Karla (ORCID 0000-0003-3059-0403), Gleeson, Kate, Holmes, Nan
Source: British Journal of Learning Disabilities. Mar 2019 47(1):59-65.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
Peer Reviewed: Y
Page Count: 7
Publication Date: 2019
Document Type: Journal Articles
Reports - Research
Descriptors: Learning Disabilities, Sexuality, Positive Attitudes, Adults, Social Services, Counselor Role, Negative Attitudes, Reflection, Counselor Training
DOI: 10.1111/bld.12256
ISSN: 1354-4187
Abstract: Background: Despite positive attitudes amongst support staff towards sexuality, adults with learning disabilities report being dissatisfied with the support they receive. This research aimed to explore support workers' understanding of their role supporting the sexuality of adults with learning disabilities. Method: Six support workers from supported living services were interviewed about their role. Data were analysed using interpretative phenomenological analysis. Results: Three themes emerged which were understood as suggesting that support workers held conflicting beliefs and emotions about their role supporting sexuality. This was interpreted as creating an ambivalence that could result in support workers distancing themselves from an active role in supporting sexuality. Conclusion: This study concluded that support workers may inadvertently express an understanding of their role that may be consistent with negative and limiting discourses about the sexuality of adults with learning disabilities. The findings suggest a continuing need for sexuality training with a focus on reflective practice.
Abstractor: As Provided
Entry Date: 2019
Accession Number: EJ1204992
Database: ERIC
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  Value: <anid>AN0134553298;f0401mar.19;2019Feb08.04:42;v2.2.500</anid> <title id="AN0134553298-1">Support workers' understanding of their role supporting the sexuality of people with learning disabilities </title> <p>Accessible Summary: We asked support workers what they thought about their role supporting sexuality.They said they want to try to support sexuality and relationships but also have to keep people safe.They said they have lots of things to consider which makes it difficult.We think support workers need more training and advice to help them talk about some of their worries and difficulties supporting sexuality. Background: Despite positive attitudes amongst support staff towards sexuality, adults with learning disabilities report being dissatisfied with the support they receive. This research aimed to explore support workers' understanding of their role supporting the sexuality of adults with learning disabilities. Method: Six support workers from supported living services were interviewed about their role. Data were analysed using interpretative phenomenological analysis. Results: Three themes emerged which were understood as suggesting that support workers held conflicting beliefs and emotions about their role supporting sexuality. This was interpreted as creating an ambivalence that could result in support workers distancing themselves from an active role in supporting sexuality. Conclusion: This study concluded that support workers may inadvertently express an understanding of their role that may be consistent with negative and limiting discourses about the sexuality of adults with learning disabilities. The findings suggest a continuing need for sexuality training with a focus on reflective practice.</p> <p>Keywords: intellectual disability; learning disability; responsibility; role; sexuality; support worker</p> <p>Sexuality encompasses a wide range of experiences that contribute to our self‐identity. The complex and abstract nature of sexuality makes it difficult to define. The World Health Organization (WHO) conceptualise sexuality as a multidimensional construct including sex, gender and intimacy that can be expressed via attitudes, behaviours, roles and relationships throughout the lifespan (WHO, [<reflink idref="bib25" id="ref1">25</reflink>]). During the 20th century, negative discourses, attitudes and practices (Craft & Craft, [<reflink idref="bib7" id="ref2">7</reflink>]; Mitchell, Doctor, & Butler, [<reflink idref="bib14" id="ref3">14</reflink>]) towards the sexuality of people with learning disabilities dominated societal belief systems and resulted in people with learning disabilities being denied the opportunity to express their sexuality. Recent research has indicated that support staff now hold more positive attitudes towards the sexuality of adults with learning disabilities (Bazzo, Nota, Soresi, Ferrari, & Minnes, [<reflink idref="bib3" id="ref4">3</reflink>]; Cuskelly & Bryde, [<reflink idref="bib8" id="ref5">8</reflink>]). However, people with learning disabilities have reported being dissatisfied with the support and opportunities they have access to regarding their sexuality. They have described how the help they receive can be restrictive, limit their sexual expression (Azzopardi‐Lane & Callus, [<reflink idref="bib1" id="ref6">1</reflink>]; Bernert, [<reflink idref="bib4" id="ref7">4</reflink>]) and discourage open discussions around sex and relationships (Fitzgerald & Withers, [<reflink idref="bib10" id="ref8">10</reflink>]). This suggests that positive attitudes may not necessarily translate into helpful support experiences for people with learning disabilities.</p> <p>It may be that support workers feel underprepared to support the sexuality of people with learning disabilities. A training deficit in sexuality and learning disabilities has consistently been noted (Futcher, [<reflink idref="bib11" id="ref9">11</reflink>]) despite recommendations for more education (Christian, Stinson, & Dotson, [<reflink idref="bib6" id="ref10">6</reflink>]; Yool, Langdon, & Garner, [<reflink idref="bib27" id="ref11">27</reflink>]). To further explore some of the reasons why this disconnect may exist, Rushbrooke, Murray, and Townsend ([<reflink idref="bib17" id="ref12">17</reflink>]) conducted a meta‐synthesis of qualitative research that explored caregivers' experiences of supporting the sexual needs of people with learning disabilities. They identified five themes which portrayed how supporting sexuality was difficult for caregivers. Caregivers reported a tension between wanting to reduce risk and increase independence. Rushbrooke et al. ([<reflink idref="bib17" id="ref13">17</reflink>]) stated that although it was acknowledged that sexuality was "natural" for all, the appraised studies conveyed that a person having a learning disability added to the complexity of supporting sexuality. Most importantly, Rushbrooke et al. ([<reflink idref="bib17" id="ref14">17</reflink>]) theme <emph>fear and uncertainty</emph> highlighted the lack of confidence caregivers experienced about dealing with sexuality issues. Studies reported caregivers felt their competence and emotions were a barrier to offering support for sexuality. Again, Rushbrooke et al. ([<reflink idref="bib17" id="ref15">17</reflink>]) highlighted the lack of training and policy available to guide those supporting sexuality issues and recommended the need to both develop and evaluate training packages.</p> <p>Though research has captured some of the difficulties which pose a barrier to supporting sexuality, there is a lack of research focussing on the way support workers conceptualise and understand their role supporting sexuality. Windley and Chapman ([<reflink idref="bib24" id="ref16">24</reflink>]) found that support workers conceptualised their generic role as maximising individual's quality of life. However, the authors acknowledged that the support offered by staff may be guided by their own prejudices and priorities regarding "quality of life" rather than those of the person they support. Similarly, with regard to sexuality, the attitudes and behaviours of support workers have been a determining factor in the opportunities that people with learning disabilities have access to (Brown & Pirtle, [<reflink idref="bib5" id="ref17">5</reflink>]) including their sex education and experience (Bazzo et al., [<reflink idref="bib3" id="ref18">3</reflink>]; Swango‐Wilson, [<reflink idref="bib20" id="ref19">20</reflink>]). Therefore, the ways in which support workers conceptualise their role are likely to influence their interactions and the support they offer. The current study aimed to explore support workers' understanding of their role supporting the sexuality of adults with learning disabilities. It was hoped gaining this knowledge would assist with the structure and approaches of future training materials.</p> <hd id="AN0134553298-2">METHOD</hd> <p></p> <hd id="AN0134553298-3">Design</hd> <p>A qualitative methodology, namely interpretative phenomenological analysis (IPA), was chosen (Smith, Flowers, & Larkin, [<reflink idref="bib19" id="ref20">19</reflink>]) as this enabled the researchers to examine and interpret support workers' personal understanding of their role supporting people with learning disabilities.</p> <p>A semi‐structured interview schedule was developed. It began with six open questions aimed at gaining information about how the participants understood their role supporting the sexuality of adults with learning disabilities. Following this, four vignettes explored how participants would respond to certain scenarios and asked them what they believed their role to be in each situation.</p> <p>Example Question: Can you tell me about your role in supporting the sexuality of people with learning disabilities?</p> <p></p> <ulist> <item> Vignette 1 A female asking if their boyfriend can stay over for the night</item> <p></p> <item> Vignette 2 A male asking for support to access Internet pornography</item> <p></p> <item> Vignette 3 A male asking for support to book a weekend away with their boyfriend</item> <p></p> <item> Vignette 4 A male asking for support to buy women's clothing on a shopping trip</item> </ulist> <p>Vignettes were included as they have been found to be an effective method for generating discussions about sexuality issues within healthcare professions (Shankar, [<reflink idref="bib18" id="ref21">18</reflink>]), providing a less threatening way to explore sensitive topics (Barter & Renold, [<reflink idref="bib2" id="ref22">2</reflink>]). Vignettes enabled participants to think about and discuss realistic scenarios and how they would offer support. Vignettes were developed in collaboration with psychologists and a support worker working within learning disability services to reflect real‐life experiences.</p> <p>In order to promote a collaborative approach, the interview schedule was shared with participants prior to the interview. This enabled them to consider issues beforehand and also supported the procedure of informed consent given the sensitive nature of the topic. Interviews were conducted in a private location at the participant's place of work and were audio‐recorded, transcribed verbatim and anonymised.</p> <hd id="AN0134553298-4">Participants</hd> <p>Prior to recruitment, ethical approval was gained from the University of Surrey. Managers of third sector care providers for people with learning disabilities were contacted about participating in the research. Recruitment meetings were arranged between the researcher and support staff where staff were given an information pack including a consent form and researcher details.</p> <p>Six support workers from three different service providers in the South of England agreed to participate. A small sample was used in keeping with the context of qualitative IPA studies and following the guidance of Smith et al. ([<reflink idref="bib19" id="ref23">19</reflink>]) for doctoral research. Participants met the following inclusion criteria: fluency in English; being over 18 years of age; holding a support worker role with ten or more hours of 1:1 contact per week with adults with mild/moderate learning disabilities in residential/supported living services; and having at least 6 months' experience. Their ages ranged from 24 to 54 years; five were female; three had between 6 and 10 years' experience and three had 5 years or less. Five participants identified as White British and one as Black Caribbean.</p> <hd id="AN0134553298-5">Analysis</hd> <p>Data analysis followed the guidance outlined in Smith et al. ([<reflink idref="bib19" id="ref24">19</reflink>]). Firstly, audio recordings and transcripts were re‐visited to enable the researcher to become familiar with data. Secondly, initial coding was completed to comprehensively record descriptive content and language use of interest. Further coding then added suggestions and interpretations of each participant's meaning. This resulted in a list of emergent themes for each transcript. Finally, patterns and connections across transcripts were analysed to develop themes.</p> <hd id="AN0134553298-6">FINDINGS</hd> <p>Three themes emerged from the analysis. Support workers expressed having to to manage the competing roles of facilitator and protector. The conflicting values associated with these roles resulted in support workers viewing their role as <emph>A Juggling Act</emph>. Support workers reported drawing on a range of influences that guided them in understanding their role. These influences were interpreted as changeable as they varied between individuals, and the precedence of each influence could change dependent on the situation and context. This was understood as support workers conveying <emph>There is No Rulebook</emph> that defines their role supporting sexuality. The analysis suggested that supporting sexuality was a very minor part of their role. It suggested that sexuality was an issue that rarely came up, and when it did, it may be minimised or not considered as an adult experience. This was encapsulated in the theme <emph>Keeping Sexuality at Arm's Length</emph>. These themes are presented in detail below.</p> <hd id="AN0134553298-7">A Juggling Act</hd> <p>All participants described understanding their role as both a facilitator of the individual's goals and aspirations and as a protector of their welfare. They reported wanting to offer support and to help people with issues related to their sexuality while making it clear that they also needed to protect people and manage risk and vulnerability. Their negotiation of these tasks was captured in the theme <emph>A Juggling Act</emph>. Participant 1 was able to reflect directly on this juggling act, explaining their aim to offer support to the individual while also considering safety and protection. Discussing supporting access to pornography they commented:I would... say you know 'it sounds like this is something you're interested in [watching pornography], it's something you'd like to be doing. It is an adult thing to be doing and looking at and you are an adult now. It's about exploring how to do that in a safe and protected way. (Participant 1)</p> <p>Others were not always explicitly aware of "juggling" but reflected this theme over the course of their interview by fluctuating between expressing facilitative and protective values. Participant 4 expressed strong values related to being a proactive facilitator of sexuality.You see that person not the disability, and you support them to lead the life that they want. (Participant 4)</p> <p>Then later in the interview, noted the importance of safety as paramount.At the end of the day as long as she's safe um, that's all that matters. (Participant 4)</p> <p>This was common across interviews and was interpreted as support workers often needing to hold both roles in mind and having to vary the significance placed on each role dependent on individual service user's needs and the context. This was interpreted as <emph>A Juggling Act</emph> as it expressed the requirement to manage several things at once, be flexible and quickly adaptable.</p> <hd id="AN0134553298-8">There is No Rulebook</hd> <p>Participants commented on a range of factors that influenced their perception of their role. The influences and the ways in which support workers drew on these influences were dependent on the situation and context. This communicated a lack of certainty about their role and was interpreted as support workers conveying <emph>There is No Rulebook</emph> for understanding their role. In practice, this meant they were unable to adopt any routine responses and needed to complete an ongoing evaluation of each individual situation and its influencing factors making sexuality a difficult area to support.</p> <p>Participants commented on personal factors that influenced their perception of their role such as personal beliefs, religion and their work experience.That one would be a hard decision for me because I myself am not, I find pornography bad. (Participant 2)</p> <p>Alongside this, they made reference to individual client factors such as age and disability that influenced their thoughts about their role.He's still only young [to watch pornography, age 18]. (Participant 3)My last two placements the learning disabilities were um, more severe than here so, that [sex and relationships] wasn't something I ever thought about. (Participant 5)</p> <p>At an organisational level, training and induction were noted as important. Participant 4 described how the team dynamics and service values could influence the ways in which support workers conceptualised their roles.It's all about the organisation... how you are inducted into the team...sometimes it's quite good to work with younger people that have never, had any experience in care, because you can show them... cos it's quite hard sometimes to change the way the older generation think, and especially when they've been working in these other places. (Participant 4)</p> <p>Participants frequently spoke about feeling unsure of their role in response to the different circumstances outlined in the vignettes. They often stated that they had not experienced these particular situations before. The uncertainty of Participants 3 and 5 was reflected in their hesitance in answering questions and in their comments about having no view about this aspect of their role.Um, I don't know really, I've never, never really thought about it. (Participant 5)</p> <p>Participant 1 appeared to show an acceptance of uncertainty being inherent in the role.When you're working with learning disabilities you have got to expect the unexpected to some degree. (Participant 1)</p> <p>Personal, client and service factors contributed to the sense that <emph>There is No Rulebook</emph> that could be applied to supporting sexuality. Support workers expressed that their role could be defined and redefined by their personal beliefs, client factors or the ethos promoted by the service and team.</p> <hd id="AN0134553298-9">Keeping Sexuality at Arm's Length</hd> <p>Though participants understood themselves as having a role as a facilitator and protector, this final theme suggested they distanced themselves from responsibility for supporting sexuality, suggesting that the need for support was minimal and was rarely raised by clients.</p> <p>Support workers often indicated they did not take a proactive stance but worked reactively with sexuality issues, only engaging in sexuality topics when they arose or were requested.We don't go into detail unless (giggles) they're actually asking for [it], if they wanted to know something. (Participant 4)I can probably count the times on one hand where I have had to deal with behaviour or a conversation of a sexual nature (Participant 1)</p> <p>There was a sense that they avoided sexuality by not "dealing" with it or thinking about it.I've never, never really thought about it... not really anything that I would think about I suppose (Participant 5)</p> <p>There were a range of comments which were interpreted as minimising the importance of sexuality issues and suggesting that support workers looked upon the relationships of people with learning disabilities as not being "adult" or "complete."They might peck each other on the lips but no more than that. (Participant 4)they just meet up at their local disco, sit and chat, hold hands have a dance then we go home [laughs] nothing really, yeah that's about it. (Participant 3)</p> <p>In response to a vignette about a young adult male interested in wearing female clothes, Participant 6 replied <emph>"ah that's cute isn't it</emph>." "Cute" is a child‐like term that could be interpreted to suggest it was not taken seriously as an adult choice.</p> <p>Support workers appeared to see their role as quite limited. They did not feel able to make decisions independently and often said they would have to check risk assessments or seek advice and permission from managers. It is possible that this was in response to advice or training they have received from their organisation. Despite being the person with the most direct contact with the person with a learning disability, they did not hold any sense of being a decision maker with regard to supporting sexuality issues and routinely deferred responsibility to others.Whoever's on shift I'll go to that person, the senior, the management, shift leader.... whoever's leading the shift that's how I'd deal with it. (Participant 6)If I'd had a concern then I think I'd want (manager) to do it. (Participant 5)I'd take it higher [to a manager], that's the way it goes. (Participant 6)</p> <p>Participants expressed boundaries to their role believing some aspects of support were outside their skill set such as physical, emotional and psychological needs.It's a situation here where a man wants to buy a dress, a psychologist will be the best person to tell why this person wants a dress, I think he or she has to be involved. (Participant 2)</p> <p>Being reactive, minimising the importance of sexuality and seeing it as beyond their remit were understood as support workers holding a position where they were unable to exercise an active role in supporting sexuality. It was interpreted that this may have been an unconscious process which participants did not directly articulate in the research but which became visible through the interpretative analysis. It could be considered that <emph>Keeping Sexuality at Arm's Length</emph> may be protective for support workers given the difficulties supporting sexuality entailed for them. Alternatively, it could be a reflection of the stigma around people with learning disabilities being sexual beings.</p> <hd id="AN0134553298-10">DISCUSSION</hd> <p>This study is the first of its kind to explore support workers' understanding of their role in supporting sexuality and offers important insight that may be used to inform training and support needs. The themes identified suggested facilitating sexuality involved a complex <emph>Juggling Act</emph> for which <emph>There is No Rulebook</emph> or clear and easily available guidance to follow. Interpretative analysis suggests that support workers engaged in <emph>Keeping Sexuality at Arm's Length</emph> by adopting a stance within which sexuality issues did not occur or were not their responsibility. If sexuality needs were acknowledged, they could be minimised or considered immature expressions of sexuality.</p> <p>The theme "<emph>A Juggling Act"</emph> is consistent with previous research where the roles of facilitator and protector have been found in relation to generic support needs (Windley & Chapman, [<reflink idref="bib24" id="ref25">24</reflink>]) in addition to sexuality‐specific support needs (Rushbrooke et al., [<reflink idref="bib17" id="ref26">17</reflink>]).</p> <p> <emph>There is No Rulebook</emph> further expressed the difficulties support workers experienced in understanding their role. It is well established that there is a lack of training and policy to guide support workers (Rushbrooke et al., [<reflink idref="bib17" id="ref27">17</reflink>]). It is likely that the absence of this contributed to participants communicating that they felt uncertain and more heavily reliant on their personal beliefs and values pertaining to sexuality.</p> <p>It was evident across the themes that support workers held a number of positive and negative associations with their role in supporting sexuality. On one hand, they appeared to hold strong positive associations as they articulated wanting to embrace the values and practices of the normalisation discourse, offer support and advocate for the rights of people with learning disabilities. On the other hand, they voiced negative associations conveying it was difficult, caused uncertainty, could place people at risk and caused their own personal moral beliefs to be compromised. These contrasting positions may have produced an experience of ambivalence in relation to the role of supporting sexuality.</p> <p>Ambivalence can be described as the simultaneous existence of strong positive and negative evaluations about the same attitude object (Thompson, Zanna, & Griffn, [<reflink idref="bib21" id="ref28">21</reflink>]). In lay terms, ambivalence can be thought of as holding two opposing views that result in a person "sitting on the fence." When put into a position where a decision or action is required, these conflicting associations are activated and can cause psychological discomfort, termed "felt ambivalence" (van Harreveld, van der Pligt, & de Liver, [<reflink idref="bib22" id="ref29">22</reflink>]; de Liver, van der Pligt, & Wigboldus, [<reflink idref="bib9" id="ref30">9</reflink>]). This is characterised by guilt and uncertainty as a person endeavours to reconcile their conflicting associations in order to make the "best" decision. For support workers, "felt ambivalence" may occur when they have to exercise their role and make decisions or offer support regarding sexuality. In many circumstances relating to sexuality, support workers may feel immense pressure, doubt and guilt about making the "right decision." This makes supporting sexuality a stressful and complex task which may leave support workers with a desire to avoid it.</p> <p>The theme "<emph>Keeping Sexuality at Arm's Length"</emph> represented that support workers had difficulty acknowledging they held a significant role in supporting sexuality, possibly as a result of their ambivalence. Support for this interpretation was gained from the observation that most participants indicated that sexuality issues rarely occurred. Sexuality is a wide multidimensional concept that can include gender roles, body image and social relationships (Murphy & Elias, [<reflink idref="bib15" id="ref31">15</reflink>]; World Health Organization, [<reflink idref="bib25" id="ref32">25</reflink>]) and is therefore expressed in a variety of ways. The absence of "seeing" sexuality, alongside the frequent use of minimising language, implied a denial of sexuality being present or important and thus rejection of a role in supporting it.</p> <hd id="AN0134553298-11">Implications</hd> <p></p> <hd id="AN0134553298-12">For people with learning disabilities</hd> <p>It is recognised that people with learning disabilities experience difficulties with constructing their identity due to holding a position of little power and can become constrained by the definitions of more powerful others (Wilberforce, [<reflink idref="bib23" id="ref33">23</reflink>]). Arguing from a social constructionist perspective, Gangon ([<reflink idref="bib12" id="ref34">12</reflink>]) suggested sexuality is created and learnt from the social environment. From the actions and reactions of others, humans develop an understanding of the social and emotional components of sexuality (e.g., what is attractive to others, appropriateness of behaviour). In practice, this means support workers, as a more powerful other, not only have a role in facilitating access to opportunities and experiences related to sexuality, but can also hold a defining role in the development of the person's understanding of their sexual identity.</p> <p>The themes identified in this research suggest that support workers find it difficult to embrace the power embedded within their role. Support workers holding an understanding that sexuality plays an insignificant part in their role is likely to perpetuate the limited opportunities people with learning disabilities have to express their sexuality (Oliver, Anthony, Leimkuhl, & Skillman, [<reflink idref="bib16" id="ref35">16</reflink>]). The unintentional consequence of this may be the censorship of sexuality for people with a learning disability. If support workers believe they do not have an important role in sexuality and distance themselves from it, then people with learning disabilities will get the impression that sexuality is not for them. This is an impression and understanding people with learning disabilities have conveyed in the literature (Fitzgerald & Withers, [<reflink idref="bib10" id="ref36">10</reflink>]). This could lead to a self‐fulfilling prophecy where they internalise this belief and subsequently restrict their expressions of their sexuality. Importantly, this could perpetuate the historical beliefs whereby people with learning disabilities are regarded as asexual eternal children (Craft & Craft [<reflink idref="bib7" id="ref37">7</reflink>]). Such belief systems have denied people with learning disabilities the opportunities to express aspects of sexuality.</p> <hd id="AN0134553298-13">For staff and services</hd> <p>This study has highlighted the complexity of supporting sexuality and thus concurs with previous recommendations for more training (Christian et al., [<reflink idref="bib6" id="ref38">6</reflink>]; Yool et al., [<reflink idref="bib27" id="ref39">27</reflink>]). Hudson and Jacot ([<reflink idref="bib13" id="ref40">13</reflink>]) questioned whether sexuality is a useful construct as it encompasses too many concepts making it difficult to understand. Training that deconstructed sexuality into smaller component parts might improve its accessibility and the practice of supporting sexuality. However, training may need to engage with the ambiguities facing support workers in their work. This research highlights an understanding that <emph>There Is No Rulebook</emph> for supporting sexuality. This and the complexity of supporting sexuality suggest traditional training formats focussing on "how to support" may be both unachievable and less helpful. Support workers seem to want to engage with sexuality, expressing positive attitudes and values. However, this research suggests they may have difficulty embracing an active role having a lack of awareness as to some of the ways their language and actions may minimise the importance of sexuality. Reflective practice sessions may be a way of giving support workers time and space to explore their ambivalent attitudes and the power and influence they hold in their role as well as to discuss the challenges in understanding and supporting sexuality. The goal of reflective practice would be more to alleviate the fears, anxieties and taboos about the topic. In stretched services, finding the time and budget for this type of training and development may be difficult therefore it would be important for service provider's management to understand the rationale for providing training in this format. Similarly, it is important to consider the high turnover of staff within the care sector meaning this training would be needed to be provided on a regular basis.</p> <hd id="AN0134553298-14">For future research</hd> <p>This is small‐scale study representing the views of one small group and further research with a wider sample would be required to draw firmer conclusions. Accessing managers' understanding of how sexuality needs are being supported would be of interest. Despite research literature suggesting that support workers have a significant role in supporting sexuality (Brown & Pirtle, [<reflink idref="bib5" id="ref41">5</reflink>]; Swango‐Wilson, [<reflink idref="bib20" id="ref42">20</reflink>]), support workers in this study expressed the view that they lacked autonomy deferring responsibility for initiating and delivering support and decisions around sexuality issues to service managers. This could be considered support workers' ambivalence driving them to avoid confronting sexuality issues. For training purposes, it would be important to understand how management perceive both support workers role and their role to explore whether "<emph>Keeping Sexuality At Arm's Length"</emph> is reflected across all structures of the organisation.</p> <hd id="AN0134553298-15">Evaluation</hd> <p>Though IPA research does not endeavour to be representative or to offer generalisable findings, it is important to note that this was a small self‐selected sample. This resulted in a female gender bias. Recruitment criteria were relaxed in order to obtain a sufficient number of participants. As participants were volunteers, it could be considered that those who participated were reasonably comfortable and willing to engage in discussions about sexuality.</p> <p>As vignettes were used to help generate discussion, it is important to consider that this may have influenced participant's responses. These vignettes covered various sexuality issues for both males and females. Some participants responded that they had not experienced these situations. Alternative vignette scenarios with which support workers felt more experienced may have resulted in different findings.</p> <p>Quality and validity issues were addressed using the criteria outlined in Yardley ([<reflink idref="bib26" id="ref43">26</reflink>]) and guidance by Smith et al. ([<reflink idref="bib19" id="ref44">19</reflink>]) for IPA research. For example, coding and themes were discussed and reviewed with fellow researchers and a reflective research log was kept to enable reflections on personal interpretations and influences.</p> <hd id="AN0134553298-16">CONCLUSION</hd> <p>This study explored how support workers understood their role supporting the sexuality needs of people with learning disabilities. Primarily, support workers viewed their role as <emph>A Juggling Act</emph> between facilitation and protection. They recognised <emph>There is No Rulebook</emph> making them view their role as both complex and uncertain. They appeared to experience ambivalence about their role supporting sexuality issues which resulted in them <emph>Keeping Sexuality at Arm's Length,</emph> distancing themselves from supporting sexuality by ascribing to an understanding that they had a limited or insignificant role in this. Conceptualising their role in this framework protected them from the practical and emotional difficulties such as uncertainty and guilt that having an active role may encounter. However, the impact of this was considered to inadvertently reinforce the negative stigma and limiting discourses people with learning disabilities receive about their sexuality. This study reiterated the need for support workers to have access to sexuality training and reflective practice that explores ambivalent attitudes and aims to make the concept of sexuality more accessible, removing some of the associated fear and anxiety.</p> <ref id="AN0134553298-17"> <title> REFERENCES </title> <blist> <bibl id="bib1" idref="ref6" type="bt">1</bibl> <bibtext> Azzopardi‐Lane, C., & Callus, A. (2014). Constructing sexual identities: People with intellectual disability talking about sexuality. British Journal of Learning Disabilities, 43, 32 – 33. https://doi.org/10.1111/bld.12083</bibtext> </blist> <blist> <bibl id="bib2" idref="ref22" type="bt">2</bibl> <bibtext> Barter, C., & Renold, E. (1999). The use of vignettes in qualitative research. Social Research Update, 25, 1 – 6.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref4" type="bt">3</bibl> <bibtext> Bazzo, G., Nota, L., Soresi, S., Ferrari, L., & Minnes, P. (2007). Attitudes of social service providers towards the sexuality of individuals with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 20 (2), 110 – 115. https://doi.org/10.1111/j.1468-3148.2006.00308.x</bibtext> </blist> <blist> <bibl id="bib4" idref="ref7" type="bt">4</bibl> <bibtext> Bernert, D. J. (2011). Sexuality and disability in the lives of women with intellectual disabilities. Sexuality and Disability, 29, 129 – 141. https://doi.org/10.1007/s11195-010-9190-4</bibtext> </blist> <blist> <bibl id="bib5" idref="ref17" type="bt">5</bibl> <bibtext> Brown, R. D., & Pirtle, T. (2008). Beliefs of professional and family caregivers about the sexuality of individuals with intellectual disabilities: Examining beliefs using a Q‐methodology approach. Sex Education, 8 (1), 59 – 75. https://doi.org/10.1080/14681810701811829</bibtext> </blist> <blist> <bibl id="bib6" idref="ref10" type="bt">6</bibl> <bibtext> Christian, L., Stinson, J., & Dotson, L. A. (2001). Staff values regarding the sexual expression of women with developmental disabilities. Sexuality and Disability, 19 (4), 283 – 291. https://doi.org/10.1023/A:1017957409670</bibtext> </blist> <blist> <bibl id="bib7" idref="ref2" type="bt">7</bibl> <bibtext> Craft, A., & Craft, M. J. (1981). Sexuality and mental handicap: A review. The British Journal of Psychiatry, 139, 494 – 505. https://doi.org/10.1192/bjp.139.6.494</bibtext> </blist> <blist> <bibl id="bib8" idref="ref5" type="bt">8</bibl> <bibtext> Cuskelly, M., & Bryde, R. (2004). Attitudes towards the sexuality of adults with an intellectual disability: Parents, support staff, and a community sample. Journal of Intellectual and Developmental Disability, 29 (3), 255 – 264. https://doi.org/10.1080/13668250412331285136</bibtext> </blist> <blist> <bibl id="bib9" idref="ref30" type="bt">9</bibl> <bibtext> de Liver, Y., van der Pligt, J., & Wigboldus, D. H. J. (2007). Positive and negative associations underlying ambivalent attitudes. Journal of Experimental Social Psychology, 43, 319 – 326. https://doi.org/10.1016/j.jesp.2006.02.012</bibtext> </blist> <blist> <bibtext> Fitzgerald, C., & Withers, P. (2013). 'I don't know what a proper woman means': What women with intellectual disabilities think about sex, sexuality and themselves. British Journal of Learning Disabilities, 41, 5 – 12. https://doi.org/10.1111/j.1468-3156.2011.00715.x</bibtext> </blist> <blist> <bibtext> Futcher, S. (2011). Attitudes to sexuality of patients with learning disabilities: A review. British Journal of Nursing, 20 (1), 8 – 14. https://doi.org/10.12968/bjon.2011.20.1.8</bibtext> </blist> <blist> <bibtext> Gangon, J. (1977). Human sexualities. Glenview, IL : Scott, Foresman & Co.</bibtext> </blist> <blist> <bibtext> Hudson, L., & Jacot, B. (1991). The Way Men Think: Intellect, intimacy and the erotic imagination. New Haven : Yale University Press.</bibtext> </blist> <blist> <bibtext> Mitchell, L., Doctor, R., & Butler, D. (1978). Attitudes of caretakers towards the sexual behaviour of mentally retarded persons. American Journal of Mental Deficiency, 83, 280 – 296.</bibtext> </blist> <blist> <bibtext> Murphy, N. A., & Elias, E. R. (2006). Sexuality of children and adolescents with developmental disabilities. Paediatrics, 118 (1), 398 – 403. https://doi.org/10.1542/peds.2006-1115</bibtext> </blist> <blist> <bibtext> Oliver, M. N., Anthony, A., Leimkuhl, T. T., & Skillman, G. D. (2002). Attitudes toward acceptable socio‐sexual behaviors for persons with mental retardation: Implications for normalization and community integration. Education and Training in Mental Retardation and Developmental Disabilities, 37, 193 – 201.</bibtext> </blist> <blist> <bibtext> Rushbrooke, E., Murray, C. D., & Townsend, S. (2014). What difficulties are experienced by caregivers in relation to the sexuality of people with intellectual disabilities? A qualitative meta synthesis. Research in Developmental Disabilities, 35, 871 – 886. https://doi.org/10.1016/j.ridd.2014.01.012</bibtext> </blist> <blist> <bibtext> Shankar, P. R. (2008). Using case scenarios and role plays to explore issues of human sexuality. Education for Health, 21, 108.</bibtext> </blist> <blist> <bibtext> Smith J., Flowers P., Larkin M. (2009). Interpretive phenomenological analysis. Theory, method and research. London, UK : Sage.</bibtext> </blist> <blist> <bibtext> Swango‐Wilson, A. (2010). Systems theory and the development of sexual identity for individuals with intellectual/developmental disability. Sexuality and Disability, 28 (3), 157 – 164. https://doi.org/10.1007/s11195-010-9167-3</bibtext> </blist> <blist> <bibtext> Thompson, M. M., Zanna, M. P., & Griffn, D. W. (1995). Let's not be indifferent about (attitudinal) ambivalence. In R. E. Petty, & J. A. Krosnick (Eds.), Attitude strength: Antecedents and consequences (361 – 386). Mahwah, NJ : Lawrence Erlbaum.</bibtext> </blist> <blist> <bibtext> van Harreveld, F., van der Pligt, J., & de Liver, Y. N. (2009). The agony of ambivalence and ways to resolve it: Introducing the MAID model. Personality and Social Psychology Review, 13, 45 – 61. https://doi.org/10.1177/1088868308324518</bibtext> </blist> <blist> <bibtext> Wilberforce, D. (2013). The problems of caring and being cared for (or how to get your shoelaces tied for you). In J. Lloyd, & P. Clayton (Eds.), Cognitive analytic therapy for people with intellectual disabilities and their carers (109 – 122). London, UK : Jessica Kingsley Publishers.</bibtext> </blist> <blist> <bibtext> Windley, D., & Chapman, M. (2010). Support workers within learning/intellectual disability services perception of their role, training and support needs. British Journal of Learning Disabilities, 38, 310 – 318. https://doi.org/10.1111/j.1468-3156.2010.00610.x</bibtext> </blist> <blist> <bibtext> World Health Organization (2006). Defining sexual health. Report of a technical consultation on sexual health, 28–31 January 2002.</bibtext> </blist> <blist> <bibtext> Yardley, L. (2000). Dilemmas in qualitative health research. Psychology and Health, 15, 215 – 228. https://doi.org/10.1080/08870440008400302</bibtext> </blist> <blist> <bibtext> Yool, L., Langdon, P. E., & Garner, K. (2003). The attitudes of medium‐secure unit staff toward the sexuality of adults with learning disabilities. Sexuality and Disability, 21 (2), 137 – 150. https://doi.org/10.1023/A:1025499417787</bibtext> </blist> </ref> <aug> <p>By Karla Maguire; Kate Gleeson and Nan Holmes</p> <p>Reported by Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib25" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib14" firstref="ref3"></nolink> <nolink nlid="nl3" bibid="bib10" firstref="ref8"></nolink> <nolink nlid="nl4" bibid="bib11" firstref="ref9"></nolink> <nolink nlid="nl5" bibid="bib27" firstref="ref11"></nolink> <nolink nlid="nl6" bibid="bib17" firstref="ref12"></nolink> <nolink nlid="nl7" bibid="bib24" firstref="ref16"></nolink> <nolink nlid="nl8" bibid="bib20" firstref="ref19"></nolink> <nolink nlid="nl9" bibid="bib19" firstref="ref20"></nolink> <nolink nlid="nl10" bibid="bib18" firstref="ref21"></nolink> <nolink nlid="nl11" bibid="bib21" firstref="ref28"></nolink> <nolink nlid="nl12" bibid="bib22" firstref="ref29"></nolink> <nolink nlid="nl13" bibid="bib15" firstref="ref31"></nolink> <nolink nlid="nl14" bibid="bib23" firstref="ref33"></nolink> <nolink nlid="nl15" bibid="bib12" firstref="ref34"></nolink> <nolink nlid="nl16" bibid="bib16" firstref="ref35"></nolink> <nolink nlid="nl17" bibid="bib13" firstref="ref40"></nolink> <nolink nlid="nl18" bibid="bib26" firstref="ref43"></nolink>
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  Data: Support Workers' Understanding of Their Role Supporting the Sexuality of People with Learning Disabilities
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  Data: <searchLink fieldCode="AR" term="%22Maguire%2C+Karla%22">Maguire, Karla</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0003-3059-0403">0000-0003-3059-0403</externalLink>)<br /><searchLink fieldCode="AR" term="%22Gleeson%2C+Kate%22">Gleeson, Kate</searchLink><br /><searchLink fieldCode="AR" term="%22Holmes%2C+Nan%22">Holmes, Nan</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. Mar 2019 47(1):59-65.
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  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
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  Data: 7
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  Data: 2019
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Learning+Disabilities%22">Learning Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Sexuality%22">Sexuality</searchLink><br /><searchLink fieldCode="DE" term="%22Positive+Attitudes%22">Positive Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Services%22">Social Services</searchLink><br /><searchLink fieldCode="DE" term="%22Counselor+Role%22">Counselor Role</searchLink><br /><searchLink fieldCode="DE" term="%22Negative+Attitudes%22">Negative Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Reflection%22">Reflection</searchLink><br /><searchLink fieldCode="DE" term="%22Counselor+Training%22">Counselor Training</searchLink>
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  Data: 10.1111/bld.12256
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  Data: 1354-4187
– Name: Abstract
  Label: Abstract
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  Data: Background: Despite positive attitudes amongst support staff towards sexuality, adults with learning disabilities report being dissatisfied with the support they receive. This research aimed to explore support workers' understanding of their role supporting the sexuality of adults with learning disabilities. Method: Six support workers from supported living services were interviewed about their role. Data were analysed using interpretative phenomenological analysis. Results: Three themes emerged which were understood as suggesting that support workers held conflicting beliefs and emotions about their role supporting sexuality. This was interpreted as creating an ambivalence that could result in support workers distancing themselves from an active role in supporting sexuality. Conclusion: This study concluded that support workers may inadvertently express an understanding of their role that may be consistent with negative and limiting discourses about the sexuality of adults with learning disabilities. The findings suggest a continuing need for sexuality training with a focus on reflective practice.
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  Data: 2019
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        StartPage: 59
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      – SubjectFull: Learning Disabilities
        Type: general
      – SubjectFull: Sexuality
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      – SubjectFull: Positive Attitudes
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      – SubjectFull: Counselor Training
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      – TitleFull: Support Workers' Understanding of Their Role Supporting the Sexuality of People with Learning Disabilities
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