Research in Developmental Disabilities 35 (2014) 871–886

Contents lists available at ScienceDirect

Research in Developmental Disabilities

Review article

What difficulties are experienced by caregivers in relation to the sexuality of people with intellectual disabilities? A qualitative meta-synthesis Elizabeth Rushbrooke a, Craig D. Murray a,*, Samantha Townsend b a b

School of Health and Medicine, Lancaster University, Lancaster, United Kingdom The Walton Centre, Liverpool, United Kingdom

A R T I C L E I N F O

A B S T R A C T

Article history: Received 7 October 2013 Received in revised form 9 January 2014 Accepted 9 January 2014 Available online 7 February 2014

The aim of the meta-synthesis was to determine any difficulties experienced by caregivers relating to the sexuality of people with intellectual disabilities and how they address those difficulties. A qualitative meta-synthesis was used to integrate the findings from 17 papers about these topics. The synthesis produced five concepts: ‘Fear and Uncertainty’, ‘Impact of Perceptions of Sexuality’, ‘The Same and Different’, ‘Balancing the Roles of Protector and Facilitator’ and ‘Conditional Sexuality: Conditional Support’. The findings suggest key issues for caregivers in relation to addressing the sexual needs of people with intellectual disabilities and highlight the possible implications of caregivers own views on their practice. These issues are discussed and in conclusion the review offers explanations about what the difficulties for caregivers are and how they might be addressed, as well as recommendations for future research. ß 2014 Elsevier Ltd. All rights reserved.

Keywords: Caregivers Intellectual disability Sexuality Meta-synthesis

Contents 1. 2.

3.

4. 5.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Research questions . . . . . . . . . . . . . . . . . . . . . . . 2.1. Searching for the studies . . . . . . . . . . . . . . . . . . 2.2. Selecting the studies . . . . . . . . . . . . . . . . . . . . . 2.3. Characteristics of the selected studies. . . . . . . . 2.4. Analysis and synthesis of the selected studies . 2.5. Synthesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1. Fear and uncertainty . . . . . . . . . . . . . . . . . . . . . Impact of perceptions of sexuality . . . . . . . . . . 3.2. The same and different . . . . . . . . . . . . . . . . . . . 3.3. Balancing the roles of protector and facilitator 3.4. Conditional sexuality: conditional support . . . . 3.5. Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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* Corresponding author. Tel.: +44 1524592730. E-mail address: [email protected] (C.D. Murray). 0891-4222/$ – see front matter ß 2014 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ridd.2014.01.012

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1. Introduction The principles of rights, independence, choice and inclusion have been on the political agenda for people with intellectual disabilities since the introduction of normalisation principles 40 years ago (Wolfensburger, 1972). Within the UK, policy such as ‘Valuing People’ (DoH, 2001) puts these concepts at the foundation of service provision for people with intellectual disabilities. There has been some debate in the literature about translating these principles into practice in a meaningful way (Beamer & Brookes, 2001; Edge, 2001; Harris, 2003; Jenkinson, 1993; Kinsella, 2000; Thompson, 2003). Putting policy into practice has implications for people with intellectual disabilities, and for their caregivers. Difficult decisions, moral pressures and judgements arise from attempting to implement these principles (Clegg, Murphy, Almack, & Harvey, 2008). For example, parents report social inclusion to be desirable for their child and that morally they should try to enable the child to achieve social inclusion (e.g., in attending mainstream school). However, achieving this is often not possible for their child, which has resulted in parents ‘feeling negatively judged by peers and professionals’ (Clegg et al., 2008, p. 92). Consequently, attempts to integrate people with intellectual disabilities into ‘mainstream’ communities have seen varied levels of success, with negative aspects including reduced quality of life for informal caregivers (Cummins, 2001) and increased likelihood for negative social experiences for people with intellectual disabilities (Cummins & Lau, 2003). The introduction of person-centred planning and direct payments were supposed to enable people with intellectual disabilities to have more choices (Concannon, 2006). However, concerns remain about when caregivers should direct people with intellectual disabilities in making a different choice, and when this begins to infringe upon the right to free choice (Smyth & Bell, 2006). These issues can leave caregivers in a difficult position when faced with situations where rights, independence, choice and inclusion may be important. When considering relationships, the importance of rights is further emphasised within the Human Rights Act (1998), particularly regarding respect for private and family life (article 8) and the right to marry (article 12). In a review of the literature on sexuality, relationships and sexual needs, McGuire and Bayley (2011) found the continued existence of restrictive practices and barriers to sexual expression, despite attempts to change this at a policy and service level. Within the review, the ability of people with intellectual disabilities to make decisions about sexual matters was described as a ‘fluid process’ (McGuire & Bayley, 2011, p. 399) whereby the capacity of an individual to consent to a sexual relationship could change over time. They identified a need for further research into caregiver experiences of issues relating to sexuality and relationships when supporting people with intellectual disabilities. In light of this recent recommendation, it is timely to determine what is already known about caregiver experiences of supporting people with intellectual disabilities with their sexual needs. Quantitative research in this area (Cuskelly & Bryde, 2004; Grieve & McLaren, 2008; McCabe, 1999) identifies factors that may influence caregiver attitudes towards relationships for people with intellectual disabilities (age, formal or informal caregiver, community or residential setting). This research is limited because it does not give an in depth account of caregiver experiences. It is difficult to ascertain what could be done to change things practically because the research does not explore the reasons behind the attitudes that caregivers report. In contrast, qualitative research captures in depth the whole range of the experience of the phenomenon it sets out to investigate, and the meaning of that phenomenon for participants (Patton, 2002). Therefore, it is possible to understand the experience that caregivers have, and consequently how those experiences might be changed. Despite the value of qualitative research, until relatively recently there was not a recognised analogous method to the quantitative systematic review for synthesising findings from multiple qualitative studies. The development of metasynthesis has emerged as the principle approach to achieving this (Noblit & Hare, 1988). Therefore the decision was made to conduct a qualitative meta-synthesis to explore how caregivers managed these complex issues by asking what are the difficulties experienced by caregivers relating to the sexuality of people with intellectual disabilities and how they address these difficulties? The present review is a systematic synthesis of empirical qualitative literature relating to the difficulties caregivers face in relation to sexual interest in people with intellectual disabilities and how they address these difficulties. This review is needed because there have been no reviews of the qualitative literature within this area and a review will allow readers to gain an overview of the understandings of this area so far, illuminate possible directions for future research and hopefully have a positive impact upon social policy and practice, improving the experiences of people with intellectual disabilities. 2. Method 2.1. Research questions The review aimed to identify what caregivers’ experiences and perceptions regarding sexual needs of people with intellectual disabilities are. The main research question asks what are the difficulties experienced by caregivers relating to the sexuality of people with intellectual disabilities and how do they address them? These questions will hopefully illuminate examples of good practice and possible barriers to achieving good practice, as well as suggestions for improving services.

E. Rushbrooke et al. / Research in Developmental Disabilities 35 (2014) 871–886

873

2.2. Searching for the studies In order to identify relevant studies to be included in the review, literature searches (see Fig. 1) were conducted in January 2012. A list of search terms was generated by hand comprising of four general areas; sexuality; caregivers; experiences; and intellectual disabilities. The thesauruses on the databases were used to find terms that may have similar meanings that had been overlooked in the hand generated list. The searches identified a large number (>1000) of papers that could potentially be included within the review. The search results were then filtered down to a final list of articles to be reviewed. This process involved the application of the following inclusion criteria: papers must (a) be published in English; (b) be published in a peer reviewed journal; (c) use qualitative methods; (d) be focussed on issues relating to sexuality, relationships or sexual health and the carer perspective on these

>1000 papers were found using the search terms from searching the following databases: • PSYCHINFO • CINAHL • Social Sciences Citation Index • MEDLINE • Web of Science • AMED This number includes replications and was reviewed in light of the inclusion criteria.

375 papers were excluded because they were not peer reviewed or were not in English.

699 papers were excluded because the focus did not match with the literature review.

18 papers excluded because they did not have a major component of the results/at least one theme on the focus outlined.

21 papers excluded because they used quantitative methods.

4 papers excluded because the participants were not caregivers to people with intellectual disabilities.

The references of the remaining 20 papers were reviewed by hand, 0 more suitable papers were identified.

3 papers were excluded due to CASP quality score of 10 or less.

Final number included in the review; 17 papers. Fig. 1. Search process flow chart.

874

Table 1 Table showing included and excluded (*) articles according to CASP score. CASP criteria

Total score

Garbutt Hamilton Carnaby (2008)* (2009) and Cambridge (2002)

1

2

1

2

1

2

2

1

2

2

2

2

1

2

2

2

2

2

1

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

2

1

1

2

1

2

2

2

1

1

2

2

2

2

1

2

2

2

1

2

2

1

0

2

2

2

2

2

1

1

2

2

2

1

1

2

2

2

2

2

2

1

1

2

2

2

1

2

1

1

2

2

2

1

1

2

2

1

2

2

2

1

0

2

1

1

0

0

1

2

2

2

2

1

0

1

1

1

1

0

0

1

0

0

1

0

2

1

0

0

2

2

2

1

1

2

2

2

1

1

2

1

1

1

1

2

1

2

0

1

1

1

2

1

1

2

2

1

2

2

2

2

1

1

1

2

1

2

1

1

1

2

2

2

0

2

1

2

2

1

1

2

1

1

2

2

1

2

1

1

1

1

2

2

1

1

1

2

2

2

16

14

8

15

14

17

14

16

10

12

17

18

19

15

10

18

17

17

16

16

CASP criteria 1. Clear statement of aims 2. Qualitative methodology appropriate 3. Appropriate research design 4. Appropriate recruitment strategy 5. Consideration of data collection 6. Consideration of research relationships 7. Ethical issues considered 8. Rigourous data analysis 9. Findings clearly stated 10. Value of the research Total score

Rohleder Pownall Swain Swango- Taggart Willis Wilson Wilson Yool LofgrenLofgrenHeyman Hubert La Grutta Lockheart Lofgrenet al. et al. et al. et al. et al. (1996) Wilson and Martenson Martenson Martenson (2010) et al. (2010) et al. and (2009)* (2010) (2010) (2009) (2011) (2003) Jahoda (2008) (2009) (2004)* (2009) (2009) Huckle (2011) (1995)

Wilson et al. (2009)

Wilson et al. (2011)

Yool et al. (2003)

2 2 2 2 1 1 2 1 2 2

1 2 1 2 2 1 1 2 2 2

2 2 2 2 2 0 1 2 1 2

17

16

16

E. Rushbrooke et al. / Research in Developmental Disabilities 35 (2014) 871–886

1. Clear statement of aims 2. Qualitative methodology appropriate 3. Appropriate research design 4. Appropriate recruitment strategy 5. Consideration of data collection 6. Consideration of research relationships 7. Ethical issues considered 8. Rigourous data analysis 9. Findings clearly stated 10. Value of the research

Abbott and Howarth (2007)

5. Hubert. ‘My Heart is Always Where he is.’ perspectives of mothers of young people with severe intellectual disabilities and challenging behaviour living at home (2010) 6. La Grutta. People with DS: adolescence and the journey towards adulthood (2009) 7. Lockheart. Defining ‘Sexualised Challenging Behaviour’ in adults with intellectual disabilities (2009)

Thematic survey

Conceptual/ thematic description

Thematic survey

Thematic survey

Critical realist

Critical realist

Critical realist

Get to know families well enough to describe their lives as far as possible through their own eyes Discover what factors influenced the decision to place a young adult in permanent residential care away from home

Monitor and explore the theme of sexuality in a group of adolescents with Down’s Syndrome, together with their mothers

To empirically define the term ‘sexualised challenging behaviour’ as it is experienced in Irish ID services

Interpretive explanation?

Describe the study as exploratory Thematic survey

Conceptual/ thematic description

Typology

Critical realist

To explore the meaning of sexuality for a sample of adults with learning difficulties in the context of formal and informal carer perspectives

Constructionist

Want to consider the social/medical context of PWID and intimate care Critical realist

How do support staff define intimate and personal care? Are there differences in how they perceive different tasks within the intimate and personal care domain? Is there evidence that personal experience or other influences affect these perceptions? Are there differences between how different members of staff approach the intimate and personal care needs of the same individual? What might lie within the attitude/assistance gap?

3. Hamilton. ‘Now I’d Like to Sleep with Rachel’ researching sexuality support in a service agency group home (2009) 4. Heyman. Sexuality as a perceived hazard in the lives of adults with learning difficulties (1995)

Not explicitly stated but do state that the context of human rights, UK law and LGBT applied to PWID was a starting point. Critical realist

To find out how, or if, staff and services were supporting PWID to think about their relationships in general, including intimate and sexual relationships

1. Abbott. Still off-limits? Staff views on supporting gay, lesbian and bisexual people with intellectual disabilities to develop sexual and intimate relationships (2007) 2. Carnaby. Getting Personal: an exploratory study of intimate and personal care provision for people with profound and multiple intellectual disabilities (2002)

Epistemology

Aims/research questions

1st Author, title and year

Table 2 Summary information of the papers included in the meta-synthesis.

Semi-structured interviews

Semi-structured interviews (and drawings from the PWDS)

‘Intensive’ unstructured interviews

Semi-structured interviews

Semi-structured interviews

Two semi-structured interviews, one on attitudes, the other on the way that care was provided to an individual

Semi-structured interviews with different topic guides for different staff groups (managers, direct support staff)

Method

Qualitative, content/thematic analysis

Qualitative analysis, type not specified

Ethnographic, Grounded theory

Qualitative, no further detail specified

Discourse analysis

Qualitative – not specified

Grounded theory

Analysis

Reaction to having child with DS Reaction to puberty and oncoming adolescence Expectation for the future Defining sexualised challenging behaviour Differentiating between Special challenges

6 formal caregivers

Transition to adulthood

Adult sexuality as a danger Adult sexuality as a risk Ramifications of informal carer perspectives Formal carer perspectives

Being knowledgeable judgment call Couple doing normal Lack of proactive support Reaction to incidents of a sexual nature

Views on policy and practice links Experience with intimate and personal care (no quotes very brief) Training (quite brief, no quotes) General feelings and attitudes about the work Attitudes and preferences about specific tasks Views of others Training needs

Intrusive or inappropriate to bring up relationships and sexuality Lack of confidence/willingness to engage with sexuality Policies Training Concerns about the reactions of others

Key findings/themes relevant to the review

25 informal caregivers (mothers, 25 PWID)

8 formal caregivers 20 (at least) informal caregivers (20 PWID) 20 Informal caregivers (mainly mothers)

13 formal caregivers

15 formal caregivers

71 formal caregivers

No./type of pts

16

14

17

14

15

14

16

CASP score (out of 20)

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12. Swain. ‘Just When You Think You Got it All Sorted. . .’ Parental dilemmas in relation to the developing sexuality of young profoundly disabled people (1996)

10. Pownall. Sexual understanding and development of young people with intellectual disabilities: mothers’ perspectives of within family context (2011) 11. Rohleder. Educators’ Ambivalence and managing anxiety in providing sex education for people with learning disabilities (2010) Social constructionist

Critical realist

To explore the challenges of understanding and responding to the developing sexuality of young profoundly disabled people

Critical realist

Symbolic interactionism/social construction

Interactionist perspective. Sexual script theory and social context considered

Epistemology

What anxieties are expressed by caregivers about HIV, sexuality and disability?

Do the new forms of communication on the Internet influence PWID? How do young adults with ID present themselves on the net? What are their experiences of entering cyberspace? What are staff members’ experiences and opinions on the usage of the internet by young people with ID? Identify, describe and understand the opportunities and hindrances for young PWID in expressing a variety of sexual expressions such as homosexuality and bisexuality What are the experiences and attitudes of staff and parents concerning homosexuality and bisexuality in young PWID? What aspects can be of importance when it comes to expressing alternative sexualities among young PWID? Compare experiences of addressing the sexuality of offspring with and without intellectual disabilities to develop a better understanding of the unique challenges and support needs of mothers of PWID

8. Lofgren-Martenson. Love in cyberspace: Swedish young people with ID and the Internet (2008)

9. Lofgren-Martenson. The invisibility of young homosexual men and women with ID (2009)

Aims/research questions

1st Author, title and year

Table 2 (Continued )

Conceptual/ thematic description

Interpretive explanation

Interpretive explanation

Thematic survey

Conceptual/ thematic description

Typology

Semi-structured interviews and focus groups

Semi-structured interviews and focus groups

Semi-structured interviews

Interviews

Semi-structured interviews

Method

Qualitative, further detail not specified

Discourse analysis, then a psychosocial analysis

Interpretative phenomenological analysis

Qualitative, no further detail specified

Qualitative and ethnographic

Analysis

7 informal caregivers 60 formal caregivers

7 formal caregivers

8 informal caregivers (mothers)

13 formal caregivers 11 informal caregivers (13 PWID)

12 formal caregivers (11 PWID)

No./type of pts

Organisational and individual: commitment to providing sex-education but ambivalence about what is acceptable and what is problematic with regard to sexuality Perceived resistance and perceptions of other parties Resistance to need for policy Sex education as potentially dangerous Anxiety about sex education, sexuality and LD Managing moral/socially acceptableness issues Risk ‘Like normal’ (so also not normal) Education as a sanction to sexual promiscuity Sexuality in this context Pressure to deny developing sexuality Pressure to think about the young people as sexual beings Personal experiences Experiences of parents of profoundly disabled young people Addressing the sexual needs of young people and their parents

Independence and control (2 sub-themes) Supporting their children’s emerging sexuality (5 sub-themes) Discussing sexual matters with their children (3 sub-themes)

Presumed heterosexuality or asexuality Homosexual acts interpreted as nonsexual or as sexual experimentation Difficulty in sexual expression due to vulnerability/lack of understanding Not overtly negative to homosexuality

You can easily see the bad part of it Unsuitable way to meet people (the net) Social advantages/normal as possible

Key findings/themes relevant to the review

15

18

19

12

17

CASP score (out of 20)

876 E. Rushbrooke et al. / Research in Developmental Disabilities 35 (2014) 871–886

17. Yool. The attitudes of medium-secure unit staff towards the sexuality of adults with learning disabilities (2003)

14. Willis. Carer knowledge and experiences with menopause in women with intellectual disabilities (2010) 15. Wilson. Penile hygiene: puberty, paraphimosis and personal care for men and boys with an intellectual disability (2009) 16. Wilson. Conditionally sexual: men and teenage boys with moderate to profound intellectual disability (2011)

13. Taggart. Staffs’ knowledge and perceptions of working with women with intellectual disabilities and mental health problems (2010)

Gain knowledge of attitudes held by a cross-section of staff from different occupations Highlight any training needs of staff with respect to the sexuality of adults with learning disabilities placed in a medium secure unit

What factors affect men and teenage boys with ID’s sexuality?

Explore staff perceptions of possible risk factors and of resilient/protective factors to women with ID developing a mental health problem Investigate staff perceptions of barriers in accessing health services Explore caregivers’ knowledge and understanding of the menopause Gather experiences of supporting women through the menopause Identify what additional help might assist caregivers to provide better support What are the practices, views and context that care staff play in the lives of men with an ID? To investigate the sexual health needs of men and boys with and ID

Critical realist

Conceptual/ thematic description

Conceptual/ thematic description.

Thematic survey

Constructionsist Male-specific research agenda

Constructionist

Interpretive explanation

Thematic survey

Critical realist

Critical realist

Phenomenological method

Grounded theory

Semi-structured interview

Semi-structured interview

Grounded theory

Thematic analysis

Thematic content analysis

Semi-structured interview

Semi-structured interview

Focus groups

4 formal caregivers

18 formal caregivers

18 formal caregivers

69 formal caregivers

32 formal caregivers

Overarching theme: conditionally sexual Themes: Self-discovery Hormonal influence Pleasure Insight Staff belief system Duty of care Staff as interactional gatekeeper Sexuality is a common shared need for all people Factors that restrict the expression of sexuality Expression of sexuality in PWLD is different due to social impairment Clients involvement in decisions about their own sexuality is dependent on their level of ability Individuals with LD understand their own sexuality in the same way as non-LD individuals Masturbation should be permitted as an aspect of sexuality and space provided to do this Uncertainty re-encouragement of homosexual relationships and lack of repression of this type of relationship in the service Female pts aware of separating mother role from professional role when working with sexuality issues in sex offenders Non-clinical staff unsure if should attend training on sexuality Topics that In service staff training should focus on

Training Adequate penile hygiene Health promotion Touch

Universality Entanglement Resilience Ignorance is bliss

Challenges of having ID and being female Unmet individual and societal expectations Unstable relationships and loss of children Being proactive in life Participating in your local community

16

16

17

17

18

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issues, but not sexual abuse or sexual offending or sex education as the sole focus. Fig. 1 summarises the application of the inclusion criteria to the papers found. The search process identified a final number of 20 potential papers to be included for the next part of the process. The reference sections of these potential papers were searched by hand using the same inclusion criteria to select the final papers to be reviewed. No further papers were identified in the hand search. 2.3. Selecting the studies To select the final studies, the data was reviewed. In practice this involved reading, and re-reading of the identified potential texts. Each article was examined in terms of quality appraisals and methodology. The Critical Appraisal Skills Programme (CASP) (Public Health Resource Unit, 2006) was used to appraise the quality of each potential paper (see Table 1). The CASP consists of questions designed to enable the evaluation of qualitative research papers. Similar to the method described by Duggleby et al. (2010) in their meta-synthesis, each CASP question was scored zero, one or two, which made it possible to score the overall quality of the potential papers out of a maximum 20 points. A score of zero was assigned if the article gave little or no information, a score of one was given if there was a moderate amount of information, but more detail or explanation would have improved it, a score of two was attributed if the article fully addressed the information required by the question. Articles scoring ten or less were excluded from the review. It was decided to exclude based upon quality appraisal because a large enough number of potential papers were identified to allow some of ‘poorer quality’ to be removed. Three articles were excluded based upon CASP score (Garbutt, 2008; Lofgren-Martenson, 2004; Swango-Wilson, 2009) (as shown in Table 1). Therefore, 17 papers were included in the review; details of these papers are represented in Table 2. 2.4. Characteristics of the selected studies The selected studies had sample sizes ranging from four to 71 caregivers. Twelve of the selected studies used semistructured interviews, one study used ‘intensive unstructured interviews’, one used an unspecified type of interview, two studies used a combination of semi structured interviews and focus groups, and one study used just focus groups as the data collection method. Six of the selected studies used unspecified qualitative analysis methods, four used grounded theory, three used thematic analysis, two used discourse analysis and two used phenomenological analysis. Some debate exists regarding combining findings from studies using different methodologies (Zimmer, 2006). In this review, the decision was made to include studies from a variety of methodological approaches and epistemologies in order to expand the understanding of the subject under review. Sandelowski (2004) suggests that this approach produces more ‘usable’ findings because it offers a ‘much richer, more flexible and dynamic approach’ (Downe, 2008, p. 7) to generating the evidence and limiting uncertainty in drawing conclusions from the findings. This is the stance taken by the current authors. In addition the reviewer approached the review with the view that each included paper in a meta-synthesis can be seen in the same way that each individual voice is seen in a single qualitative study, having its own history, social context and experience (Zimmer, 2006). 2.5. Analysis and synthesis of the selected studies The method used to guide the synthesis was that of meta-ethnography, described by Noblit and Hare (1988). Data extraction took place in the following ways. Initially all themes or theme components relevant to the research question were identified from the results sections of each paper. Following this, any sentences, phrases or quotes relevant to the research question of the metasynthesis were drawn out and compiled for each paper. After this process, these theme components were grouped according to discrete concepts which were identifiable through a method of constant comparison between themes, both within and between each study. These concepts were then examined with a focus on how well they captured the original themes within each study.

3. Synthesis Five concepts were identified across the studies: ‘Fear and Uncertainty’, ‘Impact of Perceptions of Sexuality’, ‘The Same and Different’, ‘Balancing the Roles of Protector and Facilitator’ and ‘Conditional Sexuality: Conditional Support’. The participants are referred to as ‘caregivers’ and occasionally the distinction will be made between paid caregivers; referred to as ‘formal caregivers’; and unpaid caregivers (usually family members), referred to as ‘informal caregivers.’ The contribution each paper made to each theme is provided in Table 3. 3.1. Fear and uncertainty Caregivers commonly experienced fear, uncertainty and anxiety, and felt they lacked the necessary competency when dealing with issues relating to sexuality. This could result in reluctance to make decisions or get involved in supporting sexual needs;

Concept

Abbott and Howarth (2007)

Carnaby and Cambridge (2002)

Feeling uncertain Impact of perceptions of sexuality The same but different Balancing the roles of protector and facilitator Conditional sexuality: conditional support

 

 

Hamilton (2009)

Heyman and Huckle (1995)

 



Hubert (2010)





 

Rohleder (2010)

Pownall and Jahoda (2011)

Swain (1996)



 

 

 























La Grutta et al. (2009)

Lockheart et al. (2009)

LofgrenMartenson (2009)

LofgrenMartenson (2008)

 

 



 





Taggart et al. (2010)

Willis et al. (2010)

Wilson et al. (2011)

Wilson et al. (2009)

Yool et al. (2003)





 

 



 











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Table 3 Concepts and contributing papers.

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‘It would be hard if he says ‘‘I want this’’. Sounds horrible but I don’t think I’d want to, you know. I’d just get the unit manager involved and if something did go completely wrong it’s on his shoulders isn’t it?’ (Abbott & Howarth, 2007, p. 120) Caregivers felt uncertain about who should initiate conversations about sexual matters. Often this was left to the person with intellectual disabilities because caregivers perceived barriers to discussing sexuality. These barriers included lack of confidence, fear of accountability, being unwilling or embarrassed to engage with issues of sexuality, or feeling that it would be intrusive or inappropriate for the person with intellectual disabilities. The fears of discussing sexuality and relationships seemed to lead to a lack of proactive support; ‘If they asked anything then I would try as best I can, I probably wouldn’t broach the subject’ (Pownall & Jahoda, 2011, p. 214). In addition to fear, embarrassment was a barrier to caregivers feeling competent and willing to provide support; ‘It embarrasses me to talk about sex. It’s a subject that we never touch’ (La Grutta et al., 2009, p. 310). Formal caregivers identified training as key in enabling them to feel more confident to deal with issues of sexuality and relationships and less fearful of the consequences of making decisions relating to sexual matters; ‘Training should cover the rules and regulations we need to abide by. . .should get across the fact that sexuality is a common need and nobody should be excluded from it. Training is important for teaching staff how to help clients express their sexuality appropriately.’ (Yool, Langdon, & Garner, 2003, p. 147) Lack of adequate training on these issues was identified in several studies (Abbott & Howarth, 2007; Carnaby & Cambridge, 2002; Lockheart, Guerin, Shanahan, & Coyle, 2009; Wilson, Cumella, Parmenter, Stancliffe, & Shuttleworth, 2009; Yool et al., 2003). ‘Like none of us have training on how to deal with it really and truly – you know, proper training. . . You know, there is no proper training for the client with sexual behaviour problems.’ (Lockheart et al., 2009, p. 297). Training was often not available at all, or was only offered to selected staff members and it was not seen as a priority in light of time and budget constraints. Similarly, informal caregivers indicated that they would find it helpful to receive input from formal caregivers on how to support their family member (La Grutta et al., 2009; Pownall & Jahoda, 2011; Swain, 1996). It was seen by formal caregivers as important to support families; ‘Awareness training for parents seems to be the way forward, considering fears, grief. . ., but autonomy for an individual must be the ticket, to move away from the shadow of their parents.’ (Swain, 1996, p. 62). This kind of support was not offered to informal caregivers within the reviewed studies. Related to training, policy was also identified as important, and a lack of guidance relating to sexuality, relationships and intimate care was identified by the formal caregivers (Abbott and Howarth, 2007; Carnaby & Cambridge, 2002; Wilson et al., 2009; Yool et al., 2003). They created ways of working in the absence of policy which were passed on by word of mouth and became a sort of ‘unwritten policy’; ‘One [member of staff] teaches the other one. You can’t do your own thing; you have to follow everyone else’ (Carnaby & Cambridge, 2002, p. 123). A resistance to developing policy related to sexuality was described; ‘When we first draw up our sexuality policy we had the input of – first it was just the management and then we gave it through to all the other staff members and asked for input and then we got a lot of input and some of them – you know – a total no-no, actually not suppose to sit next to each other in front of TV almost.’ (Rohleder, 2010, p. 173) This seemed to be related to the anxiety that caregivers felt about allowing sexual expression in the context of the people with intellectual disabilities that they supported. Another use of policy was to support the decision of formal caregivers in facilitating relationships in cases where the family disagreed: ‘[Parents have] got their own opinion but these are our policies and we can’t change them. We showed them the policy and said ‘‘This is how we’re going to work it. . .they’re both consenting and we can’t stop it’’’ (Abbott & Howarth, 2007, p. 121). In this case, policy was used as a tool to reduce the uncertainty that formal caregivers experienced in the face of parental opposition in upholding the rights of two people with intellectual disabilities to have a consensual intimate relationship, also reducing their own fears around accountability. This theme demonstrated how uncertain caregivers felt about identifying and addressing sexual needs of people with intellectual disabilities. These uncertainties varied between caregivers depending upon their level of experience, gender and their relationship with the person. The way to address this uncertainty was through training and policy. For formal caregivers this meant providing adequate training on how to identify and address sexual and relationship issues in people with intellectual disabilities and to have policy that clearly translated into practice to back up their actions and decisions. For informal caregivers this meant having access to support in how to manage sexual needs in their family member. 3.2. Impact of perceptions of sexuality Caregivers’ perceptions of the sexuality of people with intellectual disabilities varied and some formal caregivers stated that personal values about sexuality should not affect their caring; ‘As a staff member, one can’t just come in with ones own values and say ‘‘You can’t do that’’.’ (Lofgren-Martenson, 2009, p. 24). Caregivers spoke about the difficulty in distinguishing between behaviours that were due to sexuality and sexual needs from behaviours caused by other things;

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‘. . . it’s difficult to tell because she can be quite fiery and quite moody you know but you’d come in . . . she came in banging about and you’d look and think and then you’d notice a hot flush and you’d think maybe the mood is to do with the hot flush rather than her behaviour.’ (Willis, Wishart, & Muir, 2010, p. 45) Untangling the cause of behaviour was problematic for caregivers because it was harder to meet people’s needs if the caregivers did not know why the behaviour was happening. Caregivers attributed ‘sexualised behaviour’ to be serving a number of possible functions. These included pleasure; ‘if it feels good. . .let him do it.’ (Wilson, Parmenter, Stancliffe, & Shuttleworth, 2011, p. 281) and self-discovery; ‘it’s not a dirty thing. . .more exploratory. . .’ (Wilson et al., 2011, p. 279). Some caregivers presumed that people with intellectual disabilities were asexual; ‘There are no people here with the usual sexuality. . .that means there can’t be any homosexuals, right?’ (Lofgren-Martenson, 2009, p. 23). The perceived asexuality or infantalisation of people with intellectual disabilities was not a pervasive view, but it was certainly present. However, caregivers in all of these papers more often expressed views that people with intellectual disabilities did have a sexual identity (Abbott & Howarth, 2007; Heyman & Huckle, 1995; La Grutta et al., 2009; Lofgren-Martenson, 2009; Pownall & Jahoda, 2011; Swain, 1996; Wilson et al., 2011). Some caregivers presumed sexual identity to be heterosexual, interpreting homosexual acts as non-sexual or as sexual experimentation, not as expressing a homosexual or bisexual identity (Abbott & Howarth, 2007). Caregivers were not overtly negative towards homosexuality, stating that; ‘. . . if somebody likes this lady. . .whatever. . .even if it was the same sex. . .we should give the same support’ (Abbott & Howarth, 2007, p. 119). Some caregivers thought that support should be offered to people with intellectual disabilities with their relationships and sexuality regardless of their sexual identity or orientation; ‘. . .don’t clump them all together because they are all individuals’ (Hamilton, 2009, p. 308). Caregivers’ personal experiences influenced their perceptions of sexuality, for example, some female formal caregivers spoke about negative personal experiences with men and their reluctance to work with male people with intellectual disabilities who displayed sexual behaviours (Lockheart et al., 2009). Others spoke of their personal opinions on using the internet as a way to meet people; ‘I think you can see the bad part of it. . .with broken hearts and everything. . .And that they get addicted to the internet. . .No, I have a rather negative approach to the Net’ (Lofgren-Martenson, 2008, p. 134). Formal caregivers who were also mothers spoke about the need to separate their ‘mother’ role from their ‘professional’ role when working with sexuality issues with sex offenders (Yool et al., 2003). In some cases formal caregivers believed that they were able to keep their personal opinions and perceptions separate from their work (Lofgren-Martenson, 2009), but in others acknowledged that personal perceptions did have an effect on their ability to perform their role of supporting people with sexual matters; ‘It’s that our own values are our own comfort zone with sexuality. Because I would have had. . .staff that aren’t comfortable with it, staff that have worked brilliantly with me for years. . .came into the challenging behaviour unit, but cannot at the report read the word penis. You know, there is a comfort zone.’(Lockheart et al., 2009, p. 297) Some caregivers saw sexuality in general as a private matter, which may explain in part why they found it difficult to support people with issues relating to sexuality and intimate care; ‘Some staff do this, some staff don’t. . .female staff might get embarrassed-young female staff who don’t want to see that and they are quite within their rights to say no but it does not help (the male client)’ (Wilson et al., 2009, p. 111). Formal caregivers’ experienced embarrassment when asked to perform intimate care tasks relating to sexual health and hygiene. Some caregivers refused to perform the task, which was attributed to the embarrassment they felt in relation to that task. Formal caregivers spoke of their experience of delivering intimate care as being quite an intrusive act; ‘Intimate care is about hands-on work which invades accepted personal and social space’ (Carnaby & Cambridge, 2002, p. 126). Fears of what might happen if caregivers addressed sexuality and sexual needs with people with intellectual disabilities were expressed; ‘I still feel anxious at times when doing work on masturbation. . .I have very explicit pictures or introducing condoms in a packet. . ..I still have feelings of anxiety. Is this going to be okay? I always fear, is someone going to go off and prove the. . .fear that I think is around sexuality education, that that means that they are going to go off and act out what we have been teaching them.’ (Rohleder, 2010, p. 176) These kinds of beliefs and fears about the potential consequences of providing sex education may contribute to a reluctance to work with people with intellectual disabilities who need support with sexual matters, leaving them unsupported. Caregivers perceived that people with intellectual disabilities would have limited opportunities to meet an intimate partner and they also felt that for some people other matters would take priority over sexuality. One informal caregiver compares her child with a sibling who does not have an intellectual disability, and comments upon the limited opportunity her child has to form intimate relationships; ‘The only thing she goes to a drama group on a Tuesday and that’s for young adults . . . I have heard that on occasion she can cuddle people, and that’s been a big issue. . . so its really school, and this club where there are males. . . that’s the only places she would have chance to meet (anyone).’ (Pownall & Jahoda, 2011, p. 211)

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This observation of limited opportunity is valid, but it is important to consider why the opportunities to form social networks and access the community are so limited, and to consider the impact this may have on the chances and choices to form intimate relationships. Caregivers’ perceptions and views about sexual matters relating to people with intellectual disabilities occupied a broad spectrum which was affected by the wider context (e.g., social norms, policy). 3.3. The same and different Caregivers’ views were that sexuality was simultaneously the same as for people without intellectual disabilities, but also different. For example, caregivers expressed the view that sexuality and the need for relationships is a universal; ‘No group should be excluded from sexuality whatever their degree of disability’ (Yool et al., 2003, p. 143). They viewed sexuality as a common shared need for all people and believed that individuals with an intellectual disability understand their sexuality in the same way as others; ‘I have many women on my caseload who are not married, not in a relationship and who do not have children, yet want to be in a relationship which can cause issues’ (Taggart, McMillan, & Lawson, 2010, p. 94). Conversely, caregivers thought that the expression of sexuality in people with intellectual disabilities was different because of social impairments. For example; ‘establishing relationships is difficult for people with learning disabilities and they need alternative means to express their sexuality’ (Yool et al., 2003, p. 144). This demonstrates the complexity involved in supporting the sexual needs of people with intellectual disabilities. Some caregivers, particularly informal caregivers, experienced difficulties around the onset of puberty and adolescence for the people in their care and felt they were under opposing pressures to deny developing sexuality, but also to think about the individual as a sexual being and recognise and support their desire for intimate relationships; ‘It’s never happened, and I hope it never does, how could I tell her that she can never have this kind of relationship with any boy?’ (La Grutta et al., 2009, p. 311). Informal caregivers felt uncomfortable with the developing sexuality of people with intellectual disabilities; ‘I get very worked up over that [son’s masturbation], very worked up. I don’t know why, but I do’ (Hubert, 2010, p. 220). This implied that the caregiver thought that they had no good reason to feel uncomfortable about the sexual development of their son, but that because of his intellectual disability they found it difficult to accept. Conversely, a minority of informal caregivers were more able to accept the possibility of developing sexuality being expressed; ‘I’m happy if my son falls in love, he is the same as any other adolescent. . .’ (La Grutta et al., 2009, p. 311). In addition, some caregivers wanted to support people with intellectual disabilities but support with sexual expression was seen as more problematic than support in other areas of their lives; ‘I suppose really the idea of giving young people more choices in their lives, despite their handicap, is opening a can of worms really in terms of sexuality because I don’t know how you act as an advocate for that.’ (Swain, 1996, p. 60) The expression of sexuality and experience of transitions related to sexual maturation are expected to happen as they do for other people, but the reaction of caregivers to the developing sexuality of people with intellectual disabilities is different; ‘I think it [menopause] is not a term I would use with the women. . . we would try and simplify things you know, and try to explain in the best way we could really’ (Willis et al., 2010, p. 45). Caregivers felt that there was something very difficult in supporting the expression of sexuality and the reason for this was because of the intellectual disability. Another way this difference was noticed was regarding the moral and social acceptability of people with intellectual disabilities having sexual lives; ‘[L]ots of people are never sexual in their lives and I have to say that in our sector in the world, people with intellectual disability, I have seen people, oh oh my goodness, are, I mean would sleep with anyone and everyone. It’s like they are just people like normal people. Those who are very active and those who are absolutely non-active.’ (Rohleder, 2010, p. 176) When people with intellectual disabilities expressed themselves in a variety of ways on the continuum of ‘normal sexuality’, they were nonetheless still perceived as different from ‘normal.’ Caregivers felt that it was beneficial to support the person to be ‘as normal as possible’ and they saw this as being socially advantageous (Lofgren-Martenson, 2008). One example demonstrated that caregivers were able to support people with intellectual disabilities in having a sexual relationship; ‘He’d go in, have dinner at her home and they’d go into her room and they were having a sexual relationship. . .we had to give them privacy, you know, it’s their place as well. . .It was his first relationship and he loved it.’ (Hamilton, 2009, p. 308) This example was very much in the minority and showed the caregiver commenting upon the normality of the situation and the pleasure it brought to those they were supporting. However, the quotation also demonstrates the difference within normality, regarding privacy, in that the caregivers were aware at all of such an intimate situation. The theme of ‘same and different’ demonstrates how caregivers see sexual needs and development as natural and common to all people, with ‘normality’ seen as desirable. However, having an intellectual disability, and the degree of that intellectual disability, made these processes different, usually experienced as problematic, from a caregiver perspective.

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3.4. Balancing the roles of protector and facilitator Caregivers needed to try to balance the competing demands they faced in supporting people with sexual needs; ‘You can’t wrap them in cotton wool. But at the same time you don’t want to throw them into the lion’s den, you know? So it’s getting a balance.’ (Pownall & Jahoda, 2011, p. 210). Caregivers felt they had to allow, and advocate for, people with intellectual disabilities to take risks, while at the same time protecting and safeguarding them from risk. This could become contradictory if the person wanted to take a risk which caregivers felt they had a duty to protect them from taking. It was further complicated by the personal feelings the caregivers may have about people with intellectual disabilities and intimate relationships; ‘At one time we had to stop them cuddling. . .Because after all, if they start kissing, where does this lead to?’ (Heyman & Huckle, 1995, p. 146). Sexuality and relationships appeared to be an area that put caregivers in the position of trying to advocate for something which they then had to stop people from doing in order to safeguard or risk manage. Caregivers viewed one of their roles as that of protector and risk manager. They perceived people with intellectual disabilities to be vulnerable to risks relating to sexuality and they attempted to protect them from those risks; ‘Their options are limited because we can’t have people having ultimate relations because of all the difficulties it would cause with respect to consent. We also can’t have people who have offended sexually attacking vulnerable people’ (Yool et al., 2003, p. 143). In this example people with intellectual disabilities were living in a secure residential setting and caregivers had to consider an additional layer within risk management because some of the residents had a history of committing sexual offences. The issue of informed consent is also raised and can be so contentious that it may seem a better option for caregivers to ban ‘ultimate relations’ (Yool et al., 2003, p. 143) rather than try to manage the risks. At the same time caregivers saw themselves as having a role to play in supporting and facilitating sexual expression and pursuit of relationships. There was a tension in striking a balance between these roles. Formal caregivers felt they had a duty of care to protect and safeguard (Wilson et al., 2011); they also felt that they had to promote health, including sexual health and intimate personal hygiene (Wilson et al., 2009). Caregivers identified factors that could restrict the expression of sexuality; ‘time restraints, convenience. . .you can’t leave him unsupervised [due to risk] so they [male clients] don’t have personal time to do it [masturbate]’ (Wilson et al., 2011, p. 284). In addition to practical factors, concerns about the reactions of others, and formal caregivers’ gate keeping the interactions of people with intellectual disabilities were restrictive; ‘the local day centre found a couple having sex in the shed and guess what the day centre did to deal with the problem? They took down the shed. I think that says it all, doesn’t it?’ (Abbott & Howarth, 2007, p. 119). The reactions of others could be very difficult for caregivers to manage, both in their role of facilitator and of risk manager. In this situation the day centre had stopped the opportunity for sex education (and therefore, potentially, a reduction in risk) as well as sexual expression. Individual factors that caregivers identified as increasing the level of risk included vulnerability, lack of understanding, unmet individual and societal expectations and gender; ‘I think women with ID are a lot more vulnerable than women without ID. Both together there is a lot more apparent exploitation and sexual vulnerability’ (Taggart et al., 2010, p. 93). Caregivers felt that risk management was needed because people with intellectual disabilities were more vulnerable to sexual abuse and exploitation, more likely to have unstable relationships and lose children to social services and more likely to have negative life experiences. One informal caregiver commented; ‘And I can’t watch anything about abuse, it terrifies me. I am absolutely terrified.’ (Swain, 1996, p. 61). These apparently polarised roles arguably make the task of caring for people with intellectual disabilities in relation to sexuality more difficult to manage and the tension between reducing risk and increasing independence in sexuality and relationships is a salient issue for caregivers and must be given careful consideration. 3.5. Conditional sexuality: conditional support The theme was about support with sexuality, and sexuality itself being conditional on a number of factors. As demonstrated by the following quotation, caregivers placed conditions upon the expression of sexuality for people who were in their care; ‘. . .it’s got to be a really natural thing, and I think it should be only for people that are actually in a relationship. And in an obvious relationship. . .in the appropriate place, like your own room with the door closed. That’s ok.’ (Hamilton, 2009, p. 308) Caregivers seemed to see sexuality as acceptable in people with intellectual disabilities up to a point. This point could be different for different caregivers. It could also be different for the different people with intellectual disabilities. Many caregivers in the reviewed studies seemed to believe that masturbation was an appropriate form of sexual expression (Pownall & Jahoda, 2011; Swain, 1996; Wilson et al., 2011; Yool et al., 2003); ‘Yes, not over the dinner table, but of course they must be allowed to masturbate’ (Yool et al., 2003, p. 145). However, the conditions placed upon masturbation as a form of sexual expression were that the people with intellectual disabilities were able to discover and perform this act independently, and that a suitable private space should be provided to engage in this form of sexual expression;

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‘If it can be experienced in this way, by masturbation, well it’s really, for someone with difficulties like Colin, going to be the only outlet, the only way of expressing sexuality that you are ever going to experience, and yes, I think that’s particularly important.’ (Swain, 1996, p. 60) When people had severe, profound or multiple disabilities, including physical disabilities, caregivers acknowledged difficulties in facilitation of masturbation. For example, should caregivers help the people with intellectual disabilities to engage in masturbation? (Swain, 1996). For people who were more ‘able’ different questions arose; ‘providing illicit [pornographic] material. . . I think I would not want to go down that kind of path’ (Wilson et al., 2011). These ethical and moral dilemmas were raised by caregivers and a fear of being exploitative was acknowledged. These questions are clearly difficult to answer and raise an important point regarding how rights to sexual expression can be upheld for all people, regardless of level of disability. One caregiver reflected upon this issue; ‘I suppose they do [have sexual needs]. . . I’ve often wondered. . .but, I find it hard to comprehend in someone that’s as intellectually disabled as him’ (Wilson et al., 2011, p. 282). This comment demonstrates how much the level of disability increases the conditions placed upon sexuality and support, in this case to the extent that the caregiver could not understand how (or if) the person had sexual needs. One informal caregiver explained why they had not thought about addressing sexuality needs; ‘Part of me, to be honest, thinks she’ll never reach that stage, and I think that’s another reason I don’t think about this’ (Swain, 1996, p. 60). Perhaps this also demonstrates denial of developing sexuality by caregivers. Caregivers felt that they should support the people with intellectual disabilities in their independence and emerging sexuality but they also felt that they should step into a position of control if they felt that the person would not be able to manage their sexuality in a certain context. Caregivers felt they were in the position where they had to make a judgement call about if the people with intellectual disabilities were resilient enough, knowledgeable enough, and had a sufficient level of ability to make decisions about their own sexuality.

4. Discussion The synthesis highlighted key issues for caregivers in relation to addressing the sexual needs of people with intellectual disabilities. Caregiver perceptions occupied a broad spectrum and operated within a wider context which then impacted on the support that people with intellectual disabilities received in relation to sexual matters. Caregivers felt that people with intellectual disabilities had the same sexual needs and development as others but that their intellectual disability made this different and complicated for caregivers. This may result in people with intellectual disabilities receiving contradictory messages about sexuality and the ‘appropriateness’ of their behaviour (Sigman, 1985). The roles caregivers played in the lives of people with intellectual disabilities seemed to make the task of caring for people in relation to sexuality more difficult to manage. Psaila and Crowley (2005) found that there were common reciprocal roles between people with intellectual disabilities and caregivers. Roles included idealised care on one hand, and abuse on the other. Caregivers may have felt they faced a dilemma to either care and protect (and perhaps infringe upon human rights), or leave people vulnerable to abuse (which they may have felt amounted to being abusive themselves). Caregivers felt a responsibility towards those they supported and identified a tension between reducing risk and increasing independence in sexuality and relationships. Unsurprisingly, assessing capacity and achieving a balance between empowerment and protection are not clear cut and can have legal, as well as clinical implications (Lyden, 2007). These issues are difficult for informal caregivers as well, as they are often involved in such decisions (for a full debate of the relevant issues of mothering, normalisation and sexuality see Rogers, 2010). Recommendations for practice which emerged from the review include improved support for all caregivers who might need to address sexual needs of people with intellectual disabilities. Caregivers experience fear and uncertainty and training and support will empower them to manage issues relating to sexuality and relationships, increase confidence and reduce anxiety. Gardiner and Braddon (2009) introduced and assessed a training programme for people with intellectual disabilities on relationships and sexuality. They found that training reduced fear for formal caregivers, increased the education of people with intellectual disabilities and enabled support of informal caregivers. Training should be provided for caregivers to normalise sexuality and relationships of people with intellectual disabilities. The training should validate concerns, such as ethical implications, and give information to help caregivers understand the need to support people, and the ways this support should be provided. Caregivers felt that a person having an intellectual disability made it much more difficult to support them with sexual needs and decision making. Support may be needed in managing risk and promoting the rights of all people to sexual expression. Caregivers need to know about the legal framework in which they are working and transparency around the decision-making process should be encouraged, for example, by using the Mental Capacity Act (HM Government, 2005) to ensure that the ‘best interests’ of the person with intellectual disabilities are being given due consideration. Lyden (2007) highlighted the importance of protecting and supporting caregivers involved both in the decision making process, and in providing support once the decision had been made. This raised difficult ethical and moral dilemmas for caregivers and careful consideration needs to be given to how these dilemmas should be managed. One suggestion (McGuire & Bayley, 2011) is to use advocacy as a way to empower people with intellectual disabilities and to increase their experience of autonomy and inclusiveness.

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Barriers faced by people with intellectual disabilities should be acknowledged and attempts made to reduce them at every level. There is a need for culture change, which cannot happen unless people work together to share responsibility, change attitudes and increase support. Service user involvement is seen as a way forward in achieving such changes (SCIE, 2007). Another recommendation is that policy about sexual needs and people with intellectual disabilities should be provided for caregivers to access so that all caregivers have clear guidance on what to do when a sexual need arises and needs to be addressed. This policy should include practical guidelines that translate clearly and explicitly into practice and consultation with people with intellectual disabilities should inform the policy development (DoH, 2002). The broad focus of this review allowed for a number of areas related to sexual needs of people with intellectual disabilities to be explored. This decision was in part a pragmatic one, based upon the number of qualitative papers in this area being insufficient to focus on a specific aspect of sexuality, relationships and sexual needs. This gave a wider picture of the different kinds of issues and dilemmas that caregivers face, from two different perspectives, by including papers where the participants were formal or informal caregivers. Although in some ways this was positive, it may have been a limitation due to the variation within the reviewed papers. To counter this limitation detailed information on each paper was provided to allow the readers to contextualise findings and interpretations according to participant characteristics. Future research with a specific focus on caregiver experiences of providing support with intimate relationships to people with intellectual disabilities would be a valuable addition to the evidence base and may illuminate further ideas for improving practice. It would also be timely to develop and evaluate further caregiver training packages on sexuality in order to assess changes; for example in caregiver fear and uncertainty and in the experience of support by people with intellectual disabilities. 5. Conclusion Clearly, supporting people with intellectual disabilities in relation to their sexual needs is a difficult task, raising social, moral and ethical issues alongside more practical questions about what support should look like. Future research with a specific focus on caregiver experiences of providing support with intimate relationships to people with intellectual disabilities would be a valuable addition to the evidence base and may illuminate further ideas for improving practice. It would also be timely to develop and evaluate further caregiver training packages on sexuality. This may give further guidance to policymakers on what they should be addressing so that people with intellectual disabilities are empowered to exercise their right to a sexual life. References1 *Abbott, D., & Howarth, J. (2007). Still off-limits? Staff views on supporting gay, lesbian and bisexual people with intellectual disabilities to develop sexual and intimate relationships?. Journal of Applied Research in Intellectual Disabilities, 20, 116–126. Beamer, S., & Brookes, M. (2001). Making decisions: Best practice and new ideas for supporting people with high support needs to make decisions. London: VIA. *Carnaby, S., & Cambridge, P. (2002). Getting personal: An exploratory study of intimate and personal care provision for people with profound and multiple intellectual disabilities. Journal of Intellectual Disability Research, 46(2), 120–132. Clegg, J., Murphy, E., Almack, K., & Harvey, A. (2008). ’Tensions around inclusion: Reframing the moral horizon. Journal of Applied Research on Intellectual Disabilities, 21(1), 81–94. Concannon, L. (2006). Inclusion of control? Commissioning and contracting services for people with learning disabilities. British Journal of Learning Disabilities, 34, 200–205. Cummins, R. A. (2001). The subjective well-being of people caring for a severely disabled family member at home: A review. Journal of Intellectual and Developmental Disability, 26, 83–100. Cummins, R. A., & Lau, A. L. D. (2003). Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16, 145–157. 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 & Developmental Disability, 29(3), 255–264. Department of Health. (2001). Valuing people. Retrieved from www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyandGuidance/ DH_4009153. Department of Health. (2002). Patient and public involvement: The future picture. Retrieved from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4007046. Downe, S. (2008). Metasynthesis: A guide to knitting smoke. Evidence Based Midwifery, 6(1), 4–8. Duggleby, W., Holtslander, L., Kylma, J., Duncan, V., Hammond, C., & Williams, A. (2010). Meta-synthesis of the hope experience of family caregivers of persons with chronic illness. Qualitative Health Research, 20(2), 148–158. Edge, J. (2001). Who’s in control? Decision making by people with learning difficulties who have high support needs London: Values into Action. Garbutt, R. (2008). Sex and relationships for people with learning disabilities: A challenge for parents and professionals. Mental Health and Learning Disabilities Research and Practice, 5(2), 267–276. Gardiner, T., & Braddon, E. (2009). ‘A Right to Know’. Facilitating a relationship and sexuality programme for adults with intellectual disabilities in Donegal. British Journal of Learning Disabilities, 37(4), 327–329. Grieve, A., & McLaren, S. (2008). Staff attitudes towards the sexuality of people with learning disabilities: A comparison of different professional groups and residential facilities. British Journal of Learning Disabilities, 37, 76–84. *Hamilton, C. A. (2009). ‘Now I’d Like to Sleep with Rachel’ – Researching sexuality support in a service agency group home. Disability & Society, 24(3), 303–315. Harris, J. (2003). Time to make your mind up: Why choosing is difficult. British Journal of Learning Disabilities, 31, 3–8. *Heyman, B., & Huckle, S. (1995). Sexuality as a perceived hazard in the lives of adults with learning difficulties. Disability & Society, 10(2), 139–155. HM Government. (1998). Human Rights Act. 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