The AWDISP Survey (Asking women with diabetes about sexual problems)
Start date
05 September 2022End date
01 March 2023Overview
The AWDISP survey focuses on healthcare professionals and is currently seeking participants (healthcare professionals and healthcare assistants- more information here) and will run until 1 March 2023.
We will ask approximately 300 healthcare professionals and healthcare assistants to fill out an anonymous survey about their current practice, attitudes and unmet needs when asking women with diabetes about sexual problems. The survey takes place online.
We will analyse the responses and look for themes, including suggestions for improving support for women and colleagues, if necessary.
Aims and objectives
This survey is the first in a series of research studies, and as such it is exploratory.
It aims to gather current data from UK healthcare professionals, across primary and secondary care, who treat women with diabetes in NHS practice, regarding asking women with diabetes about sexual problems.
It aims to explore current practice amongst professionals in different demographic and professional categories (whether UK professionals are asking women with diabetes about sexual problems and other aspects of current practice, including the use of a screening tool), beliefs about female sexual dysfunction as a condition (knowledge about prevalence in diabetes, ideas around complexity, management and likely consultation dynamics), subjective experience of the professional when asking about specific sexual problems including personal embarrassment, concerns about possible patient offense, acceptability of a screening tool, and other professional-identified barriers to discussion of sexual problems with women with diabetes, as well as suggestions for improving patient care and professional support
The survey will include questions about practical unmet needs for professionals such as training, resources, and time.
Background
Information about diabetes and women’s sexual problems and why the study is needed
Women with diabetes are at high risk of untreated female sexual dysfunction (Winkley et al, 2021). Sexual health is considered an essential domain in good health (World Health Organization, 2010) and female sexual dysfunction involves experiencing distressing sexual symptoms, for over 6 months (American Psychiatric Association, 2013)
Research suggests many women experiencing symptoms of sexual problems and dysfunction, are not receiving professional help (Nusbaum et al, 2002) and barriers may include not being sure who to speak to, embarrassment and belief that sexual difficulties are to be expected as part of normal life and ageing (Bauer et al, 2016).
Women may prefer a physician to initiate discussions about sexual problems (Metz et al, 1988).
Healthcare professionals also experience their own difficulties and concerns asking about symptoms of female sexual dysfunction (Dyer et al, 2013)
Professionals have spoken of fears about the consequences of “opening a can of worms” by asking about sexual problems (Gott et al, 2004). Barriers mentioned by professionals included personal embarrassment, fear of causing offence, lack of training/ competence and lack of time, and professionals may “buy in” to the asexual discourse of aging (Gott et al, 2004)
Another barrier to professionals asking women about sexual problems is “insecurity that the answer will be affirmative” (Buster, 2013), and an assumption that a positive answer will reveal a problem which is in any case “difficult or even impossible to treat”. Studies state diagnosis and management of female sexual dysfunction is complex (Jackson et al, 2004).
We do not have clear data on the needs and attitudes of UK healthcare professional population, nor do we have nuanced data on practice and attitudes, by demographic category and job role.
Given that attitudes on sex are linked to social and cultural discourse, gaps are apparent in areas such as professionals’ beliefs about women’s sexuality and aging, professionals’ beliefs about expectations of patient offence and how women would like to be consulted, and professionals’ personal comfort/ embarrassment in asking about sexual problems
We will also ask professionals about their opinion of a short, self-administered screening tool for patients, the Female Sexual Function Index-6 (Isidori et al 2010), which may be helpful within consultations (Maiorino et al, 2020).
Resources for professionals
References to some research and publications relevant to our survey:
- American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders. Fifth Edition; Washington, DC.
- Bauer, M., Haesler, E. and Fetherstonhaugh, D., 2016. Let's talk about sex: older people's views on the recognition of sexuality and sexual health in the health‐care setting. Health Expectations, 19(6), pp.1237-1250.
- Buster, J.E., 2013. Managing female sexual dysfunction. Fertility and sterility, 100(4), pp.905-915.
- Dyer, K. and das Nair, R., 2013. Why don't healthcare professionals talk about sex? A systematic review of recent qualitative studies conducted in the United Kingdom. The journal of sexual medicine, 10(11), pp.2658-2670.
- Esposito, K., Ciotola, M., Marfella, R., Tommaso, D.D., Cobellis, L. and Giugliano, D., 2005. Sexual dysfunction in women with the metabolic syndrome. Diabetes care, 28(3), pp.756-756.
- Esposito, K., Ciotola, M., Giugliano, F., Bisogni, C., Schisano, B., Autorino, R., Cobellis, L., De Sio, M., Colacurci, N. and Giugliano, D., 2007. Association of body weight with sexual function in women. International journal of impotence research, 19(4), pp.353-357.
- Gott, M., Galena, E., Hinchliff, S. and Elford, H., 2004. “Opening a can of worms”: GP and practice nurse barriers to talking about sexual health in primary care. Family practice, 21(5), pp.528-536.
- Gott, M., Hinchliff, S. and Galena, E., 2004. General practitioner attitudes to discussing sexual health issues with older people. Social science & medicine, 58(11), pp.2093-2103.
- Isidori, A.M., Pozza, C., Esposito, K., Giugliano, D., Morano, S., Vignozzi, L., Corona, G., Lenzi, A. and Jannini, E.A., 2010. Outcomes assessment: Development and validation of a 6-item version of the Female Sexual Function Index (FSFI) as a diagnostic tool for female sexual dysfunction. The journal of sexual medicine, 7(3), pp.1139-1146.
- Jackson, G., 2004. Sexual dysfunction and diabetes. International journal of clinical practice, 58(4), pp.358-362.
- Maiorino, M.I., Bellastella, G. and Esposito, K., 2020. Diabetes and sexual disorders. Diabetes Complications, Comorbidities and Related Disorders, pp.473-494.
- Metz, M.E. and Seifert, M.H., 1988. Women's expectations of physicians in sexual health concerns. Family Practice Research Journal.
- Mitchell, K.R., Lewis, R., O'Sullivan, L.F. and Fortenberry, J.D., 2021. What is sexual wellbeing and why does it matter for public health?. The Lancet Public Health, 6(8), pp.e608-e613.
- Neijenhuijs, K.I., Hooghiemstra, N., Holtmaat, K., Aaronson, N.K., Groenvold, M., Holzner, B., Terwee, C.B., Cuijpers, P. and Verdonck-de Leeuw, I.M., 2019. The Female Sexual Function Index (FSFI)—a systematic review of measurement properties. The journal of sexual medicine, 16(5), pp.640-660.
- Nusbaum, M.R., Gamble, G.R. and Pathman, D.E., 2002. Seeking medical help for sexual concerns: frequency, barriers, and missed opportunities. Journal of Family Practice, 51(8), pp.706-708
- Sarkadi, A. and Rosenqvist, U., 2001. Contradictions in the medical encounter: female sexual dysfunction in primary care contacts. Family Practice, 18(2), pp.161-166.
- Winkley, K., Kristensen, C. and Fosbury, J., 2021. Sexual health and function in women with diabetes. Diabetic Medicine, 38(11), p.e14644.
- World Health Organization, 2010. Developing sexual health programmes: A framework for action (No. WHO/RHR/HRP/10.22). World Health Organization.
- Zeleke, B.M., Bell, R.J., Billah, B. and Davis, S.R., 2017. Hypoactive sexual desire dysfunction in community-dwelling older women. Menopause, 24(4), pp.391-399.
Information for professionals on some different screening tools for female sexual dysfunction and links to the tools
Female Sexual Function Index
This is a brief, self-reported questionnaire for female sexual dysfunction, available in different languages. It involves answering 19 questions. It has been validated in a number of different locations and with different patient populations.
Here is some research about it:
- Meyer-Bahlburg, H.F. and Dolezal, C., 2007. The Female Sexual Function Index: A methodological critique and suggestions for improvement. Journal of sex & marital therapy, 33(3), pp.217-224.
- Neijenhuijs, K.I., Hooghiemstra, N., Holtmaat, K., Aaronson, N.K., Groenvold, M., Holzner, B., Terwee, C.B., Cuijpers, P. and Verdonck-de Leeuw, I.M., 2019. The Female Sexual Function Index (FSFI)—a systematic review of measurement properties. The journal of sexual medicine, 16(5), pp.640-660.
- Rosen, C. Brown, J. Heiman, S. Leiblum, C. Meston, R. Shabsigh, D. Ferguson, R. D'Agostino, R., 2000. The Female Sexual Function Index (FSFI): a multidimensional self-report instrument for the assessment of female sexual function. Journal of sex & marital therapy, 26(2), pp.191-208.
- Wiegel, M., Meston, C. and Rosen, R., 2005. The female sexual function index (FSFI): cross-validation and development of clinical cutoff scores. Journal of sex & marital therapy, 31(1), pp.1-20.
Briefer versions of FSFI involving asking fewer questions have also been validated and used in different settings.
The FSFI-6 ask 6 questions from FSFI- 19 (questions 2,4,7,11,16 and 17)
Here is some research about it in different settings (non-exhaustive list):
- Isidori, A.M., Pozza, C., Esposito, K., Giugliano, D., Morano, S., Vignozzi, L., Corona, G., Lenzi, A. and Jannini, E.A., 2010. Outcomes assessment: Development and validation of a 6-item version of the Female Sexual Function Index (FSFI) as a diagnostic tool for female sexual dysfunction. The journal of sexual medicine, 7(3), pp.1139-1146.
- Chedraui, P., Pérez-López, F.R., Sánchez, H., Aguirre, W., Martínez, N., Miranda, O., Plaza, M.S., Schwager, G., Narváez, J., Quintero, J.C. and Zambrano, B., 2012. Assessment of sexual function of mid-aged Ecuadorian women with the 6-item Female Sexual Function Index. Maturitas, 71(4), pp.407-412.
FSFI questionnaire 2000 (PDF) FSFI 6 questionnaire (PDF)
Arizona Sexual Experiences Scale (ASEX)
This is a five-question self-completed patient survey. Questions include sex drive, arousal, vaginal lubrication, ability to reach orgasm, and satisfaction from orgasm.
Here is some additional research about it (non-exhaustive list):
- McGahuey, Alan J. Gelenberg, Cindi A. Laukes, Francisco A. Moreno, Pedro L. Delgado, Kathy M. McKnight, Rachel Manber, C., 2000. The Arizona sexual experience scale (ASEX): reliability and validity. Journal of Sex &Marital Therapy, 26(1), pp.25-40.
- Sánchez Fuentes, M., Moyano, N., Granados, R. and Sierra Freire, J.C., 2019. Validation of the Spanish version of the Arizona Sexual Experience Scale (ASEX) using self-reported and psychophysiological measures.
Sexual Satisfaction Questionnaire
This is a 10-question self-completed patient survey, with a focus on quality of sexual life.
There is a link to it in the article below
Nomejko, A. and Dolińska-Zygmunt, G., 2014. The sexual satisfaction questionnaire–psychometric properties. Polish Journal of Applied Psychology, 12(3), pp.105-112.
Here are some other research articles about its use in different settings (non-exhaustive list)
Sánchez-Fuentes, M.D.M., Santos-Iglesias, P., Byers, E.S. and Sierra, J.C., 2015. Validation of the interpersonal exchange model of sexual satisfaction questionnaire in a Spanish sample. The Journal of Sex Research, 52(9), pp.1028-1041.
Bahrami, N., Yaghoob Zadeh, A., Sharif Nia, H., Soliemani, M.A. and Haghdoost, A.A., 2016. Validity and reliability of the persian version of Larson sexual satisfaction questionnaire in couples. Journal of Kerman University of Medical Sciences, 23(3), pp.344-356.
Links for professionals to patient information about Female Sexual Dysfunction, Sexual Problems for women, and sexual problems for women with diabetes (non-exhaustive list, accessed 18/7/22))
Team
Principal investigator
Co-investigators
Dr Debbie Cooke
Reader
Biography
Following completion of my Health Psychology MSc in 1997, I worked in three different research groups at University College London (UCL) until 2012 before moving to the University of Surrey. During my employment at UCL, I also worked in the Policy Research Programme at the Department of Health supporting the commissioning of research in a number of areas. I gained my PhD part-time whilst working as a Research Fellow at UCL. I evaluated the user acceptability, behavioural and glycaemic impact of continuous glucose monitoring devices for people with diabetes for my PhD.
All of the research projects I have worked on are related to the management of long-term conditions. I have carried out research in a number of disease areas but my focus in more recent years has been on diabetes.
In particular, I have been involved in NIHR-funded programmes of work to further develop and evaluate the Dose Adjustment for Normal Eating (DAFNE) structured education course for adults with type 1 diabetes which is part of routine care in the NHS. I am the research lead for a large programme of work implementing and evaluating the BEAT diabetes digital test-bed, an online supported self-management programme for adults with type 2 diabetes. I also work with colleagues, Dr Freda Mold, examining how virtual consultations for adults with learning disabilities can be improved; and with Dr Chrissie Jones developing an intervention directed at parents, to prevent disordered eating in children with type 1 diabetes.
Dr David Griffiths
Senior Lecturer
Biography
I am a senior lecturer in the Department of Sociology at the University of Surrey. My research brings together gender and sexuality studies, feminist science studies, and cultural histories of medicine and health. I am interested in queer approaches to the body that challenge medicalising or pathologizing perspectives. I have published research on the recent and contemporary history of intersex in Britain in leading international journals. I lead the FUTURESEX initiative and am a founding member of the Sex, Gender and Sexualities Research Group at Surrey.
I have a PhD in Critical and Cultural Theory from the English Department at Cardiff University. I'm interested in interdisciplinary sexualities research, particularly in historicising and contextualising scientific and medical ways of understanding bodies and practices related to sex, gender and sexuality.
Dr Emily Setty
Senior Lecturer in Criminology
Biography
I graduated with a PhD in 2018 entitled 'Sexting ethics in youth digital culture: Risk, shame and the negotiation of privacy and consent' - a qualitative exploration of young people's experiences of risk and harm in their sexting cultures. I also have an MSc in Criminology and Criminal Justice and a BSc in Psychology.
I have since conducted extensive primary research with young people, typically about online sexual behaviours and online harms more broadly. Current projects include:
- the involvement of police in tackling harmful sexual behaviours in schools, along with Professor Jessica Ringrose, UCL, and Jonny Hunt, Bedfordshire (funded via the ESRC Tackling Violence Against Women and Girls Police-Academic partnership grant);
- parents’ practices of news consumption, news dis/engagement in the context of risks and crises, amidst rapid digitalisation and datafication. The project nvestigates the ways in which parents of children aged 0-18 interface with the news in a high-choice, low-trust news environment (funded via Leverhulme);
- co-designing educational resources for 'consent education' with young men (funded via internal impact grant);
- developing and trialling a 'porn literacy' pilot programme for young people;
- girls' and young women's negotiations of 'influencer culture' online (funded via the eNurture UKRI funding scheme)
- the impact of lockdown on digital intimacies among young people, along with Dr Emma Dobson at the University of Durham (funded via the BA/Leverhulme Small Grants Scheme);
- young people's conceptualisations and experiences of 'online transgressions', along with collaborators from the Institute for Criminal Policy Research, Birkbeck, the Open University, and Young Minds (funded via eNurture's UKRI funding scheme);
- perspectives on RSE among young people involved in harmful online sexual behaviours, in partnership with the Lucy Faithfull Foundation; and models for schools in dealing with sexual harassment and abuse following #EveryonesInvited, also with the Lucy Faithfull Foundation (funded by KPMG);
- and,
- developing the training for University of Surrey sexual assault investigations and panel hearings (funded via an ESRC Impact Acceleration Account award).
Recently completed projects include:
- an evidence review on harmful sexual behaviour in schools for the Department for Education;
- educating teenage boys about sexual consent from the perspectives of boys and educators, in partnership with Life Lessons Education (funded via a University of Surrey Innovation Voucher);
- parents’ perspectives on sex and relationships education in the home in partnership with Outspoken Sex Ed;
- young people's use of digital media and 'online harms' during lockdown, in partnership with Digital Awareness UK (funded via a University of Surrey Innovation Voucher);
- co-creation of resources for schools on how Relationships and Sex Education can 'transform school cultures', along with the School of Sexuality Education, Fumble, and a team of young people (funded via an ESRC Impact Acceleration Account award); and,
- an ethnographic study of young people's sexual and relationship cultures in a co-educational independent boarding school.
I regularly work with a range of frontline policy and practice organisations. I am a trustee of Fumble and an expert advisor for Life Lessons Education; Outspoken Sex Ed; Digital Awareness UK; It's happens... Let's talk about it; and the Lucy Faithfull Foundation. I have also consulted with organisations including the Revenge Porn Helpline, the Child Exploitation and Online Command Centre, and NotYourPorn.
Dr Kirsty Winkley
Reader in Diabetes & Primary Care - Kings College London
See profileHow to participate
More information about The AWDISP Survey
Information about participating:
Participant information sheet (docx)
Informed consent form copy for your reference (docx).
If you chose to participate, select the 'participate' link below to sign the online consent form and access the survey.
Research themes
Find out more about our research at Surrey: