Portrait of Professor Michelle McCarthy

Professor Michelle McCarthy

Professor in Learning Disabilities

About

Professor McCarthy has a social work background and has worked with people with learning disabilities in a variety of residential and field settings.  For four years she was the team leader of the Sex Education Team at Harperbury providing a specialist sexuality service to people with learning disabilities and staff. 

She has an interest in all matters relating to the sexuality of people with learning disabilities focusing particularly on working with women with learning disabilities on issues of relationships, sexuality and reproductive health.  

Research interests

  • personal and sexual relationships of people with learning disabilities
  • issues of abuse, sexual and reproductive health relating to women with learning disabilities
  • experiences of mothers with learning disabilities referred to family centres
  • menopause and women with learning disabilities
  • contraception and women with learning disabilities
  • domestic violence  (podcast) and women with learning disabilities
  •  Support for people (podcast) with LD to find loving relationships
  • Love Project video  "Love is a Wonderful Feeling" This is one of the outputs from the recently completed research on exploring loving relationships for people with learning disabilities by the Tizard Centre
  • Think Kent Video related to domestic violence against women with learning disabilities


She has carried out a number of research projects in these areas and written widely on these topics.

Teaching

Professor McCarthy oversees the PhD programme at the Tizard Centre.

Most of her teaching is on two undergraduate psychology modules; Understanding People with LD (SP601) and Researching People with LD (SP602).  The main topics are: sexuality and sexual abuse, parents with LD, qualitative research with people with LD.   

Supervision

She supervises qualitative PhD research on the broad areas of relationships and sexuality, abuse, sexual and reproductive health in relation to women with learning disabilities. 

Professional


Publications

Showing 50 of 83 total publications in the Kent Academic Repository. View all publications.

Article

  • Clawson, R., Patterson, A., Fyson, R. and McCarthy, M. (2020). The demographics of forced marriage of people with learning disabilities: findings from a national database. The Journal of Adult Protection [Online] 22:59-74. Available at: https://doi.org/10.1108/JAP-09-2019-0029.
    Purpose: To compare the UK demographics of forced marriage of people with learning disabilities and people without learning disabilities in order to inform effective safeguarding practice. Design: An analysis of all cases of forced marriage reported to the UK Government’s Forced Marriage Unit (FMU) between 2009 and 2015. Findings: People with learning disabilities are at five times greater risk of forced marriage than people without learning disabilities. Men and women with learning disabilities are equally likely to be forced to marry, whereas amongst the general population women are more likely than men to be forced to marry. Patterns of ethnicity, geographic location within the UK and reporters are the same for people with and without learning disabilities. Research limitations: The analysis is based on cases reported to the FMU, and for some cases the data held was incomplete. More importantly, many cases go unreported and so the FMU data does not necessarily reflect all cases of forced marriage in the UK. Practical implications: Forced marriage of people with learning disabilities is a safeguarding issue. Practitioners across health, education, criminal justice and social care need to better understand the risk of forced marriage for people with learning disabilities. Links to practice resources developed as part of the wider project are provided. Originality: This is the first time that researchers have been given access to FMU data and the first time that a statistical analysis of cases of forced marriage involving someone with a learning disability have been analysed.
  • McCarthy, M., Skillman, K., Elson, N., Bates, C., Forrester-Jones, R. and Hunt, S. (2020). Making Connections and Building Confidence: A Study of Specialist Dating Agencies for People with Intellectual Disabilities. Sexuality and Disability [Online] 38:3-18. Available at: https://doi.org/10.1007/s11195-020-09619-2.
    Dating agencies are a small, but growing sector of social care provision for people with intellectual disabilities. The research reported here is the first to explore, with 10 specialist agencies in the UK, why they were set up, how they operate, the barriers and problems they encounter and their success or otherwise in facilitating relationships for people with intellectual disabilities. A strong case is made for the proliferation of such services.
  • Bates, C., McCarthy, M., Milne Skillman, K., Elson, N., Forrester‐Jones, R. and Hunt, S. (2020). “Always trying to walk a bit of a tightrope”: The role of social care staff in supporting adults with intellectual and developmental disabilities to develop and maintain loving relationships. British Journal of Learning Disabilities [Online]. Available at: https://doi.org/10.1111/bld.12320.
    Background: People with intellectual and developmental disabilities (IDD) face challenges in developing and maintaining intimate relationships, frequently requiring support from staff.

    Method: Focus groups were conducted with 26 social care staff members to explore the support they provided to people with IDD to find a potential partner and/or develop an existing relationship.

    Results: Staff reported that many people with IDD wanted to be in a relationship and that they did what they could to facilitate this, sometimes providing substantial support. Some staff had to address complex issues relating to sexuality, often with no training and with a lack of clear organisational policies.

    Conclusion: The need for external inspection and regulatory bodies to prioritise relationship support is emphasised.
  • Bates, A., Forrester-Jones, R. and McCarthy, M. (2019). Specialist hospital treatment and care as reported by children with intellectual disabilities and a cleft lip and/or palate, their parents and healthcare professionals. Journal of Applied Research in Intellectual Disabilities [Online]. Available at: https://doi.org/10.1111/jar.12672.
    Background - Research into hospital treatment and care of children with intellectual disabilities (IDs) is extremely limited but available literature points to difficulties. Some children have a co-occurring condition alongside an ID which requires ongoing treatment, such as a cleft lip/palate. To date, their experiences remain untapped.
    Method - Semi-structured interviews with 23 participants comprising children (n=5) (aged 11-16) with intellectual disabilities, their parents (n=9) and healthcare professionals (n=9) working in cleft care. Thematic Analysis determined patterns across the data.
    Results- Three key themes were found; struggles (stress and distress, power imbalance) tensions (perceived levels of choice and control in decision-making, lack of training around IDs assumptions and jargon) and good practice (appropriate communication and information, tailored treatment).
    Conclusion - Good practice was evident, but was ad-hoc. Individualised treatment and communication based upon children’s needs is required as is further investigation into general anaesthetic induction for children with IDs.
  • McCarthy, M. (2019). “All I wanted was a happy life”: the struggles of women with learning disabilities to raise their children whilst also experiencing domestic violence. Journal of Gender Based Violence [Online] 3:101-118. Available at: https://dx.doi.org/10.1332/239868019X15475690594298.
    Women with learning disabilities are especially vulnerable to domestic violence from partners. The lives of mothers with learning disabilities who experience domestic violence are very challenging. This in-depth qualitative study of 6 mothers with learning disabilities in the UK uses interpretative phenomenological analysis to explore the impact of domestic violence on the women and children. The women reported violent conceptions and violent pregnancies, perpetrators sabotaging the mother-child bond, living with a broad spectrum of abuse and their feelings about having their children removed from their care. Recommendations are made for professional and informal support of these women.
  • McCarthy, M., Bates, C., Triantafyllopoulou, P., Hunt, S. and Milne Skillman, K. (2019). “Put bluntly, they are targeted by the worst creeps society has to offer”: Police and professionals’ views and actions relating to domestic violence and women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities [Online] 32:71-81. Available at: http://dx.doi.org/10.1111/jar.12503.
    Background: Little is known about the attitudes and practices of key personnel towards the domestic violence experienced by women with intellectual disabilities.

    Method: An online survey was conducted of Police officers and health and social care professionals. A total of 717 Police and other professionals across a wide variety of UK sites responded. Research questions were focussed on direct experience, attitudes and responses.

    Results: Approximately half of all respondents had direct experience of working with a woman with intellectual disabilities who had been through domestic violence. Professionals were more likely than the Police to see women with intellectual disabilities as being especially vulnerable. The majority of both professionals and Police believed women with intellectual disabilities were deliberately targeted by violent and abusive men.

    Conclusions: More training is needed for both the Police and health and social care professionals specifically in domestic violence as it affects women with intellectual disabilities.
  • McCarthy, M. (2017). Learning Disabilities and domestic abuse: an unspoken barrier. Safe: the domestic abuse quarterly [Online]:18-22. Available at: https://www.womensaid.org.uk/research-and-publications/safe/.
  • McCarthy, M., Hunt, S. and Milne-Skillman, K. (2017). ’I know it was every week, but I can’t be sure if it was every day’: domestic violence and women with learning disabilities. Journal of Applied Research in Intellectual Disabilities [Online] 30:269-282. Available at: http://dx.doi.org/10.1111/jar.12237.
    BACKGROUND: Domestic violence against women is well researched in the general population, but much less so in relation to women with learning disabilities. This qualitative research study interviewed 15 women with learning disabilities who had experienced domestic violence about their experiences, the impact of the violence on them and their children, their coping strategies and help seeking behaviour.
    MATERIALS AND METHODS: Semi-structured in-depth interviews were conducted. Data were analysed using Interpretive Phenomenological Analysis. A service user advisory group helped at particular stages, notably at the formative stage and with dissemination, especially the production of accessible materials, including a DVD.
    RESULTS: The violence experienced by many of the women was severe and frequent. It impacted negatively on their physical and psychological well-being. The women’s awareness of refuges and others sources of help was generally low.
    CONCLUSIONS: Health and social care professionals have a clear remit to help women with learning disabilities to avoid and escape violent relationships.
  • McCarthy, M. (2017). What kind of abuse is him spitting in my food?: Reflections on the similarities between disability hate crime, so-called ‘mate’ crime and domestic violence against women with intellectual disabilities. Disability and Society [Online] 32:595-600. Available at: http://dx.doi.org/10.1080/09687599.2017.1301854.
    Domestic violence against women with learning disabilities is a wholly under-researched topic. A recent study indicated that there are strong parallels between domestic violence, disability hate crime and ‘mate’ crime. This paper explores these similarities and argues that rather than treating them as discreet phenomena, we need to make the connections and re-affirm the commitment that feminist scholars and activists made long ago, namely to take violence committed in private as seriously as that committed in public.
  • McCarthy, M. (2016). What are the support needs of women with learning disabilities who have been abused?. Tizard Learning Disability Review [Online] 21:29-32. Available at: https://doi.org/10.1108/TLDR-09-2015-0036.
    Purpose
    – In discussing some of the issues arising from the article by Angela Olsen and Catherine Carter, the purpose of this paper is to draw readers’ attention to the various support needs women with learning disabilities may have.

    Design/methodology/approach
    – Critical analysis based on review of literature and the author’s research and practice-based experience.

    Findings
    – Women with learning disabilities have similar support needs to other women who have experienced violence and abuse. However, in order to get their needs met, they need access to information, support from professionals and to share experiences with other women.

    Originality/value
    – This commentary encourages readers to view the abuse of women with learning disabilities in a broad social context and to use all the knowledge available to protect and empower individuals, whilst at the same time demanding social changes to end discrimination and abuse.

    Keywords:
  • McCarthy, M. (2016). What are the support needs of women with learning disabilities who have been abused?. Tizard Learning Disability Review [Online] 21:39-42. Available at: http://dx.doi.org/10.1108/TLDR-09-2015-0036.
    Purpose: In discussing some of the issues arising from the article, this commentary aims to draw readers’ attention to the various support needs women with learning disabilities may have.
    Design/methodology/approach: Critical analysis based on review of literature and the author’s research and practice based experience.
    Findings : Women with learning disabilities have similar support needs to other women who have experienced violence and abuse. However, in order to get their needs met, they need access to information, support from professionals and to share experiences with other women.
    Originality/value: This commentary encourages readers to view the abuse of women with learning disabilities in a broad social context and to use all the knowledge available to protect and empower individuals, whilst at the same time demanding social changes to end discrimination and abuse.
  • McCarthy, M. (2014). Brick by brick: building up our knowledge base on the abuse of adults with learning disabilities. Tizard Learning Disability Review [Online] 19:130-133. Available at: https://doi.org/10.1108/TLDR-12-2013-0051.
    Purpose
    – The purpose of this paper is to draw readers’ attention to the myriad ways to find out about abuse towards people with learning disabilities.

    Design/methodology/approach
    – Whilst acknowledging the continued importance of research studies specifically focused on the topic of abuse, this commentary reviews information about abuse of adults with learning disabilities from other sources, e.g., through service audits, studies on sexual and personal relationships.

    Findings
    – Having many sources of information about abuse against people with learning disabilities is a good thing, but there are some problems associated with this. First, some forms of abuse appear to be easier to find out about than others, and second, the difficult question of how the information can be used to improve the lives of people with learning disabilities.

    Originality/value
    – This commentary encourages readers to take a broad view of abuse of people with learning disabilities and to use all the knowledge available to support individuals, whilst at the same time demanding social changes.
  • McCarthy, M. (2014). Women with intellectual disability: their sexual lives in the 21st Century. Journal of Intellectual and Developmental Disability [Online] 39:124-131. Available at: https://doi.org/10.3109/13668250.2014.894963.
    Background The aim of this paper was to give an overview of, and a commentary on, research demonstrating what women with intellectual disability are saying about their intimate relationships and sexual lives in the 21st century.

    Method A literature search was undertaken for qualitative studies, published in English since 2011, in which the authors spoke directly and at length to women with intellectual disability. The method was based on the Critical Appraisal Skills Programme (http://www.casp-uk.net).

    Results Five studies, from the UK, USA, and Australia, were found to fit the criteria. The numbers of participants in the studies ranged from 9 to 17. All involved women with mild to moderate intellectual disability.

    Discussion Though not universal, it is negative perceptions, negative experiences, thwarted ambitions, and abuse that dominate the narratives of the women with intellectual disability when they are asked about their sexual lives.

    Conclusion Women with intellectual disability need help in developing their self-esteem, sex education that emphasises female sexual pleasure and assessing risk, as well as peer support. Wider structural, social, and service-level changes are also needed, and these are discussed, along with suggestions for enhancing women's ability to exercise a greater degree of control over their sexual lives.
  • Young, R., Gore, N. and McCarthy, M. (2012). Staff attitudes towards sexuality in relation to gender of people with intellectual disability: a qualitative study. Journal of Intellectual and Developmental Disability [Online] 37:343-347. Available at: https://doi.org/10.3109/13668250.2012.704983.
    Background Research has found staff attitudes regarding the sexuality of people with intellectual disability (ID) to be negative but influenced by several factors. The current study aimed to examine whether gender of people with ID affects such attitudes.

    Method Semistructured interviews were completed with 10 staff members and analysed using thematic analysis.

    Results Results indicated 3 themes: Women are perceived as sexually innocent, men as more sexually motivated, and motivations for sexual relationships are perceived to differ between men and women with ID.

    Conclusion The study indicates unfavourable attitudes towards sexuality in individuals with ID that correlate with traditional, restricted gender stereotypes. The identification of these themes highlights the importance of considering gender when supporting the sexuality of people with ID.
  • McCarthy, M. (2011). Prescribing contraception to women with intellectual disabilities: GPs attitudes and practices. Sexuality and Disability [Online] 29:339-349. Available at: http://dx.doi.org/10.1007/s11195-011-9216-6.
    The challenges of providing appropriate reproductive healthcare to women with intellectual disabilities are set within the context of a primary health care system. The rationale for this study was to explore the prescribing practices and attitudes of General Practitioner’s (GP) when women with intellectual disabilities come to them for contraception. The data reported in this paper come from a cross-sectional postal questionnaire survey conducted with 162 GPs across two counties in England. The majority of respondents had 10 or fewer women with intellectual disabilities of child bearing age on their caseloads. The most commonly prescribed methods of contraception were the Pill (39.7%) and depot medroxyprogesterone acetate (DMPA), (34.2%). The difficulties faced by GPs in determining ‘best interests’ are explored, as are the issues related to the women’s capacity to consent to sex.
  • McCarthy, M. (2010). Exercising choice and control- women with learning disabilities and contraception. British Journal of Learning Disabilities [Online] 38:293-302. Available at: http://dx.doi.org/10.1111/j.1468-3156.2009.00605.x.
    This research project used semi?structured in?depth interviews to ask women with learning disabilities about the experience of being prescribed contraception. It also asked general practitioners about their prescribing practices through a postal survey. A service user group was involved at different stages of the project. Most of the women reported that it was other people who made the key decisions about starting to use contraception and which method to use. Both the women and the doctors said they liked having a third party (staff member or relative) present for the consultations. Many of the doctors were unclear about responding to issues of capacity to consent to treatment. An accessible research summary was produced to make the process and findings of the research available to the women with learning disabilities who took part in the study, as well as to any others who were interested (see Disability and Society, 24, 357–371, 2009). In the interests of disseminating that accessible report as widely as possible, extracts are included in this article, and the full version is available from the author.
  • McCarthy, M. (2010). What kind of future for young people with Down’s Syndrome? The views and aspirations of young people and families. Tizard Learning Disability Review [Online] 15:30-33. Available at: https://doi.org/10.5042/tldr.2010.0591.
  • McCarthy, M. (2009). Contraception and women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities [Online] 22:363-369. Available at: http://dx.doi.org/10.1111/j.1468-3148.2008.00464.x.
    Background: Contraception is widely prescribed to women with intellectual disabilities, yet little is known about what the women think and feel about this. One
    of the aims of the study was to explore what women understood and to what extent they were able to exercise choice and control.

    Method: Twenty-three women with mild and moderate intellectual disabilities in South East England were interviewed about their current and past use of contraception, their knowledge of contraception more broadly, the process of being prescribed contraception and sources of information and support.

    Results: Knowledge of how contraception works was very limited and approximately half the women also lacked basic knowledge about reproduction. Few women attended medical appointments alone and none had been given any accessible information about contraception.

    Conclusions: There is a role for increased education, support and advocacy for women with intellectual disabilities when they are prescribed contraception. This would help to ensure women are prescribed methods which are best for them as individuals and to help maximize their participation in the process.
  • McCarthy, M. (2009). ‘I have the jab so I can’t be blamed for getting pregnant’: contraception and women with learning disabilities. Womens Studies International Forum [Online] 32:198-208. Available at: http://dx.doi.org/10.1016/j.wsif.2009.05.003.
    The aim of this research was to investigate whether, and to what extent, women with learning disabilities were enabled to exercise choice and control when it came to their use of contraception. Semi-structured in-depth interviews were conducted with 23 women with learning disabilities in the UK to explore these issues. Findings suggest that most women with learning disabilities did not make their own decisions and some of those who did, found their choices constrained by various factors, such as their young age, fears of losing their service, and previous traumatic experiences. The over-use of Depo-Provera is discussed, as are the common practices of giving contraception to women who are not sexually active and those whose fertility has declined naturally due to their age. The factors which lead to women's relative lack of autonomy are explored.
  • McCarthy, M. (2009). ‘It stops the eggs or something’: contraception and women with learning disabilities. Learning Disability Today [Online]. Available at: https://www.learningdisabilitytoday.co.uk/ldt-home.
  • Morentin, R., Jenaro, C. and McCarthy, M. (2008). Love and loving relationships in people with learning disabilities: a scientific approach. Tizard Learning Disability Review [Online] 13:33-41. Available at: https://doi.org/10.1108/13595474200800016.
    Love has been a recurring theme through history and literature, and its relevance to health, well?being and quality of life has been widely acknowledged. However, the scientific study of love has not yet reached people with learning disabilities. The study reported here was based on research with 376 people with learning disabilities in Spain, and aimed to analyse their appraisal of love, loving relationships and related issues (global evaluation, satisfaction, role of the family and self?determination). A Likert?type measure was developed, and the outcomes indicate that the measures have satisfactory psychometric characteristics. It is also evident that the theoretical model of love for people without disabilities can be applied to individuals with disabilities, and includes three key factors (‘commitment, stability and idealisation’, ‘passion and physiological arousal’ and ‘intimacy and romanticism’). It also indicates that the perceptions of love in people with learning disabilities are relatively idealised and influenced by context, and interference from family and self?determination are key issues.
  • McCarthy, M. (2003). Drawing a line between consented and abusive sexual experiences: the complexities for women with learning difficulties. Journal of Adult Protection [Online] 5:34-40. Available at: https://doi.org/10.1108/14668203200300023.
    This article explores the sexual experiences of women with learning difficulties, highlighting the blurred nature of the boundary between abusive and consented sex.
  • McCarthy, M. and Millard, L. (2003). Discussing the menopause with women with learning disabilities. British Journal of Learning Disabilities [Online] 31:9-17. Available at: http://dx.doi.org/10.1046/j.1468-3156.2003.00182.x.
    Traditionally, little attention has been paid to the menopause as it affects women with learning disabilities. Consequently, older women with learning disabilities have rarely been adequately prepared for, or supported through, what for most women is a significant ‘change of life’. None of the existing literature focuses on the women's perspectives, but rather, looks at menopause from a medical angle, in particular focusing on the timing of onset. The research study described in the present paper is an attempt to gain some insights into the ways in which women with learning disabilities perceive the menopause. The main informants were women with learning disabilities themselves, but also general practitioners, staff in learning disability services and parents who still cared for their middle?aged daughters at home. The research project also involved the non?disabled researchers working alongside two groups of women with learning disabilities, who acted as advisors and consultants to the project, and who were paid for their time.
  • Cambridge, P., Carnaby, S. and McCarthy, M. (2003). Responding to masturbation in supporting sexuality and challenging behaviour in services for people with learning disabilities. Journal of Learning Disabilities [Online] 7:251-266. Available at: http://dx.doi.org/10.1177/14690047030073005.
    Masturbation is frequently referenced as a key issue for supporting the sexuality of people with learning disabilities, yet the subject has received little attention in the professional and academic literature. This article provides an overview of masturbation in relation to service responses and user support in sexuality work in learning disability more widely, drawing in evidence and experience from sex education, clinical work and staff training. Issues such as gender, sexuality, culture and consent are addressed and some of the commonly held myths and assumptions about sexuality and masturbation are challenged. The discussion and related suggestions are designed to be of value to service managers and practitioners, particularly those involved in sexuality work and one-to-one support.
  • McCarthy, M. (2002). Going through the menopause: perceptions and experiences of women with intellectual disabilities. Journal of Intellectual & Developmental Disability [Online] 27:281-295. Available at: https://doi.org/10.1080/1366825021000055817.
    This article explores a heretofore neglected topic: the perceptions, experiences and support needs of women with intellectual disability as they go through the menopause. Findings are presented from semi-structured interviews with 15
    women with mild to moderate intellectual disability aged 43–65 years. Levels of knowledge about what the menopause was, when it happened, and whether it happened to all women, were found to be generally low. More significantly,the majority of the women did not understand the significance of the menopause on a woman’s reproductive capacity. The women’s experiences of change and transition were on a predominantly physical level, with some emotional effects, but little or no psychological and social impact noted. The findings about menopausal changes are presented in a broader context of age-related issues and the impact of the women having relatively low levels of choice and autonomy is explored.
  • McCarthy, M. (2002). Responses to women with learning disabilities as they go through the menopause. Tizard Learning Disability Review [Online] 7:4-12. Available at: https://doi.org/10.1108/13595474200200002.
    The research investigated how women with learning disabilities understand and experience the menopause, and the support available. This paper Reports the experiences and attitudes of those people to whom women with learning disabilities might turn for support. GPs generally Reported relatively little experience in treating women with learning disabilities for menopause?related symptoms and some recognised the need for pro?active work. Carers played a key role in facilitating women's access to primary health care. Staff in residential and day services recognised the role they played in supporting women through the menopause, but were hampered by lack of time and resources. Mothers of middle?aged women with learning disabilities who still lived at home felt well?placed to support their daughters through the menopause and viewed this transition positively. The need for specialist educational materials was emphasised by all those who took part in this research.
  • McCarthy, M. and Cambridge, P. (2001). User focus groups and Best Value in services for people with learning disabilities. Health and Social Care in the Community [Online] 9:476-489. Available at: https://doi.org/10.1046/j.0966-0410.2001.00328.x.
    This paper examines the problems and potentials of employing user focus groups as part of an approach to defining and reviewing Best Value in local authority and jointly commissioned services for people with learning disabilities. Drawing on experience from three local authority initiatives and wider experience with Best Value, the paper describes the development of user focus groups for helping review adult placement, outreach and day services for people with learning disabilities. The key methodological considerations for consulting with service users with learning disabilities through focus groups are identified and the interpretation of outcomes considered. The paper concludes with pointers for the effective operation of user focus groups in local authority Best Value reviews of services for people with learning disabilities, of use to practitioners, service managers and commissioners.

Book

  • McCarthy, M. and Millard, L. (2017). Supporting Women With Learning Disabilities through the Menopause. A Manual and Training Resource for Health and Social Care Workers. Second Edition. Brighton UK: Pavilion Publishing.
    This flexible new edition of our best-selling training book provides a valuable resource for working with individuals and groups, as well as for staff training, on the vital topic of menopause. It provides thoroughly piloted and comprehensive information about the menopause, in addition to how women with learning disabilities can be affected and how they might best be supported. Training on the menopause within services is very rare, therefore the exercises in this pack are designed to encourage those with or without specialist knowledge to run training for other staff, and do supportive work with service users. The group work option gives women with learning disabilities the opportunity to come together and recognise that the menopause is a normal part of life and something that happens to all women. As well as learning about the menopause, it can foster a sense of sharing and connection. As a resource for individual work, the materials provide an opportunity to give information and discuss personal subjects in depth, with the aid of pictures and film. The resource also contains a variety of staff training exercises, with supporting materials, which will help prepare staff for this work. They are designed to enable staff to recognise when women with learning disabilities might be going through the menopause and how they might help them deal with this. As well as providing advice for care workers, the book also aims to empower women with learning disabilities to make decisions for themselves about how they manage the menopause, with the inclusion of material written directly for them.
  • McCarthy, M. and Thompson, D. (2016). Sex and the 3 Rs: Rights, Risks and Responsibilities: A Sex Education Pack for Working With People With Learning Disabilities. Fourth Edition. [Online]. Brighton, UK: Pavilion Publishing. Available at: https://www.pavpub.com/sex-and-the-3-rs/.
    A sex education package designed for those working with adults with learning disabilities. It covers a wide variety of sexual issues, situations and problems, as well as policy, legislation and the law.
  • McCarthy, M. and Thompson, D. (2008). Sex and the 3 Rs: Rights, Responsibilities and Risks. A Sex Education Pack for Working With People With Learning Disabilities. Third Edition. Brighton: Pavilion Publishing.
  • McCarthy, M. and Millard, L. (2003). Supporting Women With Learning Disabilities Through the Menopause: A Resource Pack. [Online]. Brighton, UK: Pavilion Publishing. Available at: https://www.pavpub.com/supporting-women-through-menopause/.

Book section

  • McCarthy, M. (2018). Domestic violence and women with learning disabilities. In: Bates, C. ed. Sexuality and Learning Disability: A Handbook. Brighton, UK: Pavilion Publishing, pp. 123-133. Available at: https://www.pavpub.com/sexuality-and-learning-disabilities-2nd-edition/.
  • McCarthy, M. (2011). Intimate Lives: sexuality and people with learning disabilities. In: Carnaby, S. ed. Learning Disability Today. Brighton, UK: Pavilion Publishing. Available at: https://www.pavpub.com/learning-disability-today-3rd-edition/.
  • McCarthy, M. (2010). The sexual lives of women with learning disabilities. In: Grant, G. ed. Learning Disability: A Life Cycle Approach (Second Edition). Open University Press, pp. 259-267.
  • McCarthy, M. (2010). Menstruation and Menopause. In: McCarthy, M. and Thompson, D. eds. Sexuality and Learning Disabilities: A Handbook. Brighton: Pavilion Publishing, pp. 53-64.
  • McCarthy, M. (2008). Sexuality and women with intellectual disabilities. In: Noonan Walsh, P. and Heller, T. eds. Health of Women With Intellectual Disabilities. Oxford, UK: Blackwell. Available at: http://dx.doi.org/10.1002/9780470776162.
  • McCarthy, M. (2007). Intimate Lives: sexuality and people with learning disabilities. In: Carnaby, S. ed. Learning Disability Today. 2nd Edition. Brighton: Pavilion Publishing, pp. 183-191.
  • McCarthy, M. (2006). Sexuality and intimate and personal care. In: Carnaby, S. and Cambridge, P. eds. Intimate and Personal Care With People With Learning Disabilities. London, UK: Jessica Kingsley Publishers. Available at: https://www.jkp.com/uk/intimate-and-personal-care-with-people-with-learning-disabilities-2.html.
  • McCarthy, M. and Thompson, D. (2004). People with learning disabilities: Sex,the law and consent. In: Cowling, M. and Reynolds, P. eds. Making Sense of Sexual Consent. Aldershot: Ashgate Publishers.
  • McCarthy, M. and De Burg, C. (2003). My Story. In: Atkinson, D., McCarthy, M. and Walmsley, J. eds. Good Times, Bad Times: Women With Learning Disabilities Tell Their Stories. British Institute of Learning Disabilities.
  • McCarthy, M. (2003). Sexual abuse and women with learning disabilities. In: Atkinson, D., McCarthy, M. and Walmsley, J. eds. Good Times, Bad Times: Women With Learning Disabilities Tell Their Stories. BILD.

Edited book

  • McCarthy, M. (2010). Sexuality and Learning Disability: A Handbook. [Online]. McCarthy, M. and Thompson, D. eds. Brighton, UK: Pavilion. Available at: https://www.pavpub.com/sexuality-and-learning-disabilities/.
    A range of authors share their direct experience of working with people with learning disabilities on sexual issues. They give ideas on helping people with learning disabilities to learn about their bodies and sex. The focus is on what staff and family members can do themselves, but it also recommends when specialist help may be needed. Ideas for further reading and specialist organisations are included.

Monograph

  • Clawson, R., Patterson, A., Fyson, R., Kitson, D. and McCarthy, M. (2018). My Marriage My Choice. Case Study Collection: Learning from Case Studies of Forced Marriage of People With Learning Disabilities. Univeristy of Nottingham. Available at: https://www.nottingham.ac.uk/research/groups/mymarriagemychoice/documents/case-studies.pdf.
    This document tells the stories of people with learning disabilities who have been forced to marry, to raise the profile of a little understood issue and contribute to a shift in thinking that will improve safeguarding policy and practice. Forced marriage of people with learning disabilities is different to forced marriage of people without learning disability. As such, it is often not recognised as forced by families, faith leaders or professionals. Some professionals see it as a ‘cultural issue’ and fear being seen as racist or culturally insensitive. This all impacts upon safeguarding policy and practice.
  • Patterson, A., Clawson, R., McCarthy, M., Fyson, R. and Kitson, D. (2018). My Marriage My Choice. Summary of Findings. Univeristy of Nottingham. Available at: https://www.nottingham.ac.uk/research/groups/mymarriagemychoice/documents/summary-full.pdf.
    The My Marriage My Choice project (a two-year study funded by the National Institute for Health Research, School for Social Care Research) has been conducted with a view to exploring forced marriage of adults with learning disabilities1 from a safeguarding perspective. Its aim was to develop knowledge, policy and practice to support professionals in their work of safeguarding vulnerable children and adults.
    Forced marriage is defined as a marriage without the consent of one or both parties and where duress is a factor (UK Government Forced Marriage Unit). In a forced marriage one or both spouses do not consent, or due to lacking capacity, cannot consent to the marriage.
    The research project has also been conducted to raise awareness of forced marriage in order that all of those who are involved in the education, care and support of individuals who cannot effectively consent to any such undertaking, might be empowered to recognise forced marriage as such and respond appropriately.
  • Caiels, J., Fox, D., McCarthy, M., Smith, N., Malley, J., Beadle-Brown, J., Netten, A. and Towers, A. (2010). Development Studies for the National Adult Social Care User Experience Survey: Technical Report. Personal Social Services Research Unit. Available at: http://www.pssru.ac.uk/pdf/dp2724.pdf.
  • Malley, J., Caiels, J., Fox, D., McCarthy, M., Smith, N., Beadle-Brown, J., Netten, A. and Towers, A. (2010). A Report on the Development Studies for the National Social Care User Experience Survey. Personal Social Services Research Unit. Available at: http://www.pssru.ac.uk/pdf/dp2721.pdf.

Other

  • Bates, A., Forrester-Jones, R. and McCarthy, M. (2018). Parental views of their child’s care and experiences when a cleft lip and/or palate co-exists with a learning disability/need.
    Increased difficulties are reported for children and young people (CYP) with additional condition(s) to a cleft lip and/or palate (CL±P) compared to CYP without additional needs. Little is known however about parental experiences of raising a child with additional conditions such as learning disabilities (LDs)/needs in addition to CL±P, therefore support needs are unknown.

Thesis

  • Malli, M. (2018). Adolescents’ Perceptions of Their Peers With Tourette’s Syndrome: Does A Brief Anti-Stigma Intervention Help?.
    Background and aim: Tourette's syndrome is a neurodevelopmental condition characterised by tics. It is a condition that has been stigmatised by the public. School age children and especially adolescents often experience rejection from their typically developing peers due to their symptomology which could hinder school inclusion and social participation. Therefore, there is a need for implementing interventions to target typically developing peers' inaccurate knowledge about TS, and their negative attitudes. There is also a paucity of studies that explore the motivation of peers who stigmatise against people with TS. Understanding stigma and its underlying causes, however, is vital to develop effective interventions that can minimise and help to eventually eradicate stigma.
    The aim of the thesis is therefore three-fold: firstly, to understand how individuals with TS were perceived by typically developing adolescents. Secondly, based on these attitudes, to develop a tailor-made anti-stigma intervention; and thirdly to evaluate the effectiveness of the developed intervention within a secondary school classroom setting.

    Method: A sequential mixed-method design was used. Qualitative data were collected to capture tic-free adolescents' motives, and reasoning involved in the exclusion of individuals with TS. These findings were then used to design a tailor- made intervention and research measures. A randomised cluster control trial with a mixed-model design was used to determine the impact of the developed intervention on tic-free adolescents' awareness of Tourette's syndrome, attitudes, and behaviours towards individuals with TS. Data were collected at three time points: pre-intervention, post-intervention and 9 weeks after its implementation. This is the first intervention that was specifically designed for adolescents and with an assessment at a follow-up stage.

    Results: The qualitative study indicated that adolescents understanding about the condition was construed from misconceptions, unfamiliarity and unanswered questions. Furthermore, people with TS were either perceived as being deprived of agency and strength or as deserving pity, and in need of support. These findings helped design the intervention which was implanted on Year Ten students in a school in the South East. Upon completion of the intervention, positive changes were recorded relating to students' awareness, attitudes and behavioural intentions. Tic-free adolescents were more willing to embrace diversity within the classroom and rejected previously held notions of ableism. However, only changes in awareness were maintained at the 9-weeks follow-up.

    Conclusion: Tailor-made interventions can contribute substantially to preventing consolidation of unfavourable attitudes towards individuals with TS. Future research should however place emphasis on how these positive outcomes could be maintained over time. Implications of these findings for school curricula and mental health policy, as well as suggestions for future research, are discussed.
  • Hurman, M. (2017). Exploring the Relationships of People With an Intellectual Disability and Their Support Staff: To What Extent Is Rapport a Useful and Measurable Concept?.
    Background Research interest in exploring the quality of relationships 'rapport' between people with an intellectual disability (ID) and those that support them is slowly expanding. People with ID, particularly those that present a challenge to others, are more likely to experience abuse; consequently they have been the subject of many service scandals. People with little or no verbal language are likely to struggle to tell others that relationships with staff or family carers have deteriorated to the point of becoming abusive.
    The limited research available indicates that rapport with staff is associated with reductions in behaviour described as challenging, particularly when the behaviour serves a demand avoidance function.
    Despite some suggestions of how people with ID and limited language, may show that the relationship with carers is of a good quality there was no observational method of obtaining this information.

    Method A systematic review was conducted and literature used to design an observational method of rapport measurement, the IRM. Participants with ID were filmed in the presence of SP. Alongside the filmed observations staff completed the Staff Rating of Other Staff, Staff Self- Rating of Rapport and took part in Preference Testing Sessions (McLaughlin and Carr, 2005). Filmed material was analysed using the IRM. The IRM was subsequently developed into the easier to use Rapport Rating Scale (RRS). The RRS and measures used in the original IRM study were piloted by clinicians and reviewed in focus groups over an 8 month period.

    Results Literature searches found that there is very little research that has directly examined rapport between people with intellectual disabilities and staff or unpaid carers. Consequently concepts similar to rapport were examined and identified some material useful to the development of the IRM. Most concepts asserted that it is possible to see observable changes in participants with ID when rapport with staff or unpaid carers is developed.
    The IRM study showed, higher average IRM scores for the SP in the good rapport groups when compared to each of the McLaughlin and Carr (2005) measures. Analysis of the easier to use RRS indicated that professionals and trainees, were able to use the RRS to discriminate between good, neutral or poor rapport towards carers

    Conclusions Using rapport measures in clinical practice, suggests that clinicians supporting people with ID were able to use rapport measurement tools successfully. For a number of clinicians the content of the Positive Behaviour Support plan was altered or enhanced through the rapport information collected during assessment. There are implications of understanding and the ability to measure rapport between people with ID and staff, on, clinical practice, staff training, service development and the wider policy agenda.

Forthcoming

  • Bates, A., Forrester-Jones, R. and McCarthy, M. (2018). The experiences of children and young people with a learning disability/need and a cleft lip and/or palate. In: Craniofacial Society of Great Britain & Ireland (CFSGBI) Annual Scientific Meeting.
    Background
    International research suggests 7%-18% of those born with a cleft lip and/or palate (CL±P) also have a learning disability (LD). However, there is no known UK research about the qualitative experiences of living with both conditions, so support needs are unknown.
    Methods
    Fifteen semi-structured interviews were conducted with CYP with CL±P, ten of whom had LDs/learning needs. Interview topics included cleft clinic experiences/treatment, self-perceptions and social activities. Thematic Analysis was used to identify data patterns.
    Findings
    Three superordinate themes were found: self-image, resilience and struggles. A range of self-image perceptions were described (‘normal’, otherness and positive), with bullying victims having a poor self-image. Resilience was evident for CYP without LDs (e.g. quality friendships, control over treatment). There was an association between school type (mainstream/Special Educational Needs and Disability (SEND) schools) and positive/negative experiences. CYP without LDs and CYP with LDs in SEND schools had more positive experiences than CYP with LDs/needs in mainstream schools who frequently reported difficulties. Difficulties encompassed bullying (resulting in a desire for surgery), and treatment burden (e.g. fear of needles/anaesthetic).
    Discussion
    Having LDs/learning needs were strongly linked with struggles (bullying and treatment burden). However, mediating factors such as how far CYPs’ needs and rights were met in hospital and school were pivotal. Further research into these environmental influences, with a view to better supporting CYP with CL±P and LDs/needs, is welcomed.
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