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.
– 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.
– Critical analysis based on review of literature and the author’s research and practice-based experience.
– 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.
– 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. (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.
– The purpose of this paper is to draw readers’ attention to the myriad ways to find out about abuse towards people with learning disabilities.
– 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.
– 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.
– 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.