What women want: social characteristics,gender-based violence and social support preferences in a cohort of women living with HIV

Abstract

A total of 229 women attend Chalmers Centre (a city-centre integrated sexual health centre in Edinburgh, Scotland) for their HIV care and treatment. Local third-sector agencies provide peer support, but anecdotally, it is not well utilised and some demographic groups are under-represented. The aim of this study was to gain better understanding of the background social characteristics of these women, to ascertain what issues they are affected by, and to better identify what support is required and how it should be provided/facilitated. An anonymous self-completion questionnaire was developed, and all women attending HIV clinics between July and November 2015 were given the opportunity to participate. Additional data were accessed from the National Sexual Health database on cohort size and gender-based violence enquiries. Forty-four women living with HIV completed the questionnaire. 25% are unemployed. 84.6% had a combined household income of less than £30,000 per annum. 16.7% do not know anyone else, and 59.5% know only one other person, who is living with HIV. 32.6% would like to meet other/more women living with HIV, and 25.5% were unsure if they did or not. Of those who would, 42.9% would prefer a one-to-one setting, 42.9% would prefer a group setting, and 14.3% did not mind. 64.3% would prefer to meet off NHS premises. 26.8% were interested in discussion groups on women’s issues, and 31.7% were unsure. The most popular suggestions for discussion group topics were stress/anxiety (nine women), HIV disclosure (eight women), diet and nutrition (seven women), and pregnancy and childbirth (six women). 26.8% were interested in attending a “women clinic” staffed by female staff, the same number were unsure if they would utilise this service or not. 50% of women had, at some point, experienced gender-based violence, 13.5% were currently experiencing gender-based violence, and four of these women have children living with them. From National Sexual Health records, only 15.7% of the cohort had ever been asked about gender-based violence. Respondents were demographically representative of our whole cohort. 75% are in employment but it appears that the majority of these women are likely to be earning lower than the national average income. To improve holistic support for these women and facilitate peer support, we need to be flexible in our approach. Gender-based violence appears to be disproportionately affecting women living with HIV in Lothian and, as a team, we are failing to routinely enquire about it. Robust referral/signposting pathways should be developed for women after gender-based violence disclosure.

Keywords

Europe HIV viral disease women

In Edinburgh, approximately 1500 people living with HIV receive their care at one of two sites, a hospital-based Infectious Diseases (ID) Unit or a city-centre Integrated Sexual Health Centre. The majority are resident in the Lothians (Edinburgh and surrounding areas: comprising 700 square miles), a few choose to travel into the area from elsewhere in Scotland or from Northern England. A total of 229 HIV-positive women attend Chalmers Sexual Health Centre for their routine care and monitoring, most on a six monthly basis. Similar numbers of women attend the ID unit, and female:male ratios are similar in both units. Third-sector agencies in Lothian run a variety of support groups for women living with HIV (WLWH), but anecdotally, they are not well attended and certain demographic groups are under-represented. Similarly, all people living with HIV are given contact details for voluntary sector peer-supporters, but uptake is low. NHS Lothian is in the initial processes of facilitating an HIV patient forum and it is hoped that women will be fairly represented in this group and will drive women’s issues as an agenda priority.

The aim of this study was to gain better understanding of the background characteristics of WLWH attending Chalmers Centre, as well as to ascertain what issues are affecting WLWH in Lothian, including their experience of gender-based violence (GBV). We aimed to amass opinion from women themselves as to what additional support they felt was needed, and how it should provided. No similar study has been undertaken or reported locally or nationally.

Methods

An anonymous self-completion questionnaire was piloted on five WLWH to appraise clarity of questions and to ascertain if any other pertinent issues should be addressed within the questionnaire. Several alterations in syntax and wording were made, but no additional topics of concern were suggested in addition. Suggestions for discussion group topics were collated and included as multiple-choice options. The document was largely multiple choice with free-text options where appropriate. A questionnaire was put with the registration documents of all women attending Chalmers Centre for routine HIV care between July and November 2015, and clinicians were encouraged to ask women to partake in the study.

A data query was run from the National Sexual Health (NaSH) database electronic patient record to identify how many of the women with HIV attending clinics at Chalmers Centre had been asked about GBV during a consultation, and the answer duly recorded.

Results

A total of 44 women completed questionnaires, representing 53.7% of the women attending during the study period (n = 82). No women who were offered the opportunity to complete the questionnaire were unable to do so because of literacy or language difficulties. Figure 1 illustrates the age range of survey respondents. The majority of the women were either White British or of African ethnicity (Figure 2).

Figure 1.

Age range of questionnaire respondents.

Figure 2.

Ethnicity of questionnaire respondents.

Twenty-five percent of respondents were not currently in employment, 47.3% were in full-time employment, and 27.7% in part-time employment. 84.6% of respondents have a combined household income of less than £30,000 per annum.

The women who responded had on average 1.2 children. Range of family size was 0–4 children. Reflective of the age of the cohort, 23 children were age 16 or under and living at home.

Over 70% of women (n = 31) had been diagnosed HIV-positive over five years previously, and 19 of these were diagnosed over 10 years previously. Fewer (four) had been diagnosed within the previous two years.

When asked the question “Have you ever felt unsafe in a relationship” all but two women answered. 50% of respondents (n = 21) had at some point felt unsafe in a relationship; 6 (14.3%) felt currently unsafe and 15 (35.7%) recalled having felt unsafe in a past relationship. Four of those women who said they currently felt unsafe in a relationship have children living with them at home, three of these women have a child/children age five years and under, one has teenage children. Seven of the 21 women identified as White British, one as White Other, 9 as African, 4 as African British.

From the NaSH data enquiry, only 15.7% (n = 36) of the whole cohort (n = 229) had ever been asked about GBV and had their answer recorded on their electronic patient record. Of these women, 10 disclosed past GBV, 2 disclosed current and past GBV, and 2 disclosed current GBV. The type of GBV was not recorded for 13 of these women, and 1 woman was a survivor of childhood sexual abuse.

One woman had told no-one outwith the clinic about her HIV diagnosis. Nine women had told 1–2 other people, 12 women had told 3–5 other people, 7 had told 6–10, and 14 women had told more than 10 women about their diagnosis. Seven (16.7%) of the women who responded do not know anyone else who is living with HIV. Twenty-five (59.5%) women know only one other person who has HIV. Eighteen women (41.9%) said that they would not like to meet other/more WLWH. Fourteen (32.6%) said yes they would like to meet other/more WLWH. Eleven (25.5%) were unsure. Of those who would like to meet other women, 42.9% would prefer a one-to-one setting, 42.9% would prefer a group setting and 14.2% did not mind. 64.3% would prefer to meet outwith an NHS setting, 28.6% would prefer an NHS site, 7.1% did not mind. 41.5% of respondents were not interested in attending discussion groups for women, 26.8% were interested and 31.7% were unsure. Preference for topics to be discussed is illustrated in Figure 3. 26.8% of respondents would be interested in attending a “women’s clinic” staffed by female staff do discuss some of the issues suggested. 26.8% were unsure and 46.4% declined the offer.

Figure 3.

Number of women interested in attending discussion groups covering different topics.

Only one woman took the opportunity to make a free-text comment – she expressed a desire for a bus pass to facilitate attending appointments.

Discussion

Over half of women attending routine clinics during the study period completed the questionnaire. The respondents were of a wide range of ages and broadly representative of the whole cohort. Few women aged 18–25 attend our service, reflecting local demographics and the fact that those few who were vertically infected “transition” through clinics which are run through the Infectious Disease department.

Three quarters of respondents are in employment, but the majority (84.6%) have a combined household income of less than £30,000 per year. In Scotland, the median full-time annual individual income in 2014 was £27,045,¹ indicating that WLWH in Scotland are likely to be earning lower than the national average. We were unable to review Scottish Index of Multiple Deprivation (SIMD) data for where these women live as by giving their full post-code, along with the other data shared it was felt from a small cohort they may be identifiable from clinic records, compromising anonymity of respondents.

The women in this cohort have lower than the UK average number of dependent children (1.7).² This may be due to the older age of the cohort and their reproductive years coinciding with an era when the risk of mother to child transmission was significantly higher.

The frequency with which GBV is experienced by these women is a pertinent finding. The question “Have you ever felt unsafe in a relationship” is one of a range of questions suggested as a screening question by those responsible for NHS Lothian GBV training. Violence against WLWH has been defined as “any act, structure or process in which power is exerted in such a way as to cause physical, sexual, psychological, financial or legal harm,”³ and with such a broad definition, it is likely that this question under- rather than over-estimates the true prevalence of GBV in WLWH. 50% of women completing this questionnaire disclosed they had at some time felt unsafe in a relationship. A sizeable literature links GBV and HIV acquisition, most papers reporting from the developing world,^4–6 where sexual violence in an area of high HIV prevalence results in increased risk of HIV acquisition.⁷ There are well-documented discussions around strategies to address harmful gender norms and inequalities including the GBV–HIV dynamic, with anticipated beneficial effects on the HIV epidemic in this setting.⁸ Data also exist, mainly from the US, as to the link between HIV acquisition and propensity to suffer GBV, with up to 45% of women experiencing some form of GBV after diagnosis.⁹ Some suggest that WLWH appear to experience GBV at similar rates comparable to HIV-negative women from the same underlying population, but that the abuse seems to be more frequent and severe.¹⁰ Causal links are of course difficult to draw, with interplay of social, psychological, mental health, relationship, cultural, financial, and personal vulnerability factors being relevant to individuals’ overall “risk,” and experience of GBV.¹¹ GBV may also clearly represent a barrier to accessing healthcare including HIV care and treatment.^12,13 While UK data are sparse, one study from an inner-city clinic concluded, in accordance with our findings, that over half of study participants reported lifetime experience of GBV.¹⁴

Routine enquiry about GBV was introduced in NHS Lothian Sexual Health Services in 2014, but from the NaSH Electronic Patient Record only a minority of women are being asked. Previous work in England found that many HIV support organisations and clinics were not routinely collecting data about women’s experiences of GBV and many GBV support organisations were not routinely asking women about their HIV status – indicating the need for the proactive development of partnerships and good practice guidance in both sectors.¹⁵ This survey has highlighted that locally, staff training on GBV should be prioritised, and that the service needs to have robust onwards referral pathways for women disclosing GBV, not only for the immediate care of those currently unsafe in relationships but also to provide help for those past-sufferers who may require ongoing support and counseling. With this knowledge of such a high rate of GBV, we are now working alongside third-sector agencies to offer accessible support for women and encouraging HIV support agencies to add GBV to their agendas. GBV enquiry has been added to local HIV Annual Review proformas to ensure women are asked regularly about their experiences.

Little widespread research has been carried out in the UK to date. Further work is needed to delineate the true extent of HIV/GBV interplay in this cohort of women; GBV as a cause or consequence of infection, the impact of GBV on the risk of onwards transmission, compliance with anti-retrovirals or contraception, and the pertinence to child protection and adult safeguarding. We need to understand the impact on an individual, as well as societal level, and how best to support women who are affected.

If we are to consider improving peer support for WLWH, we need to be flexible in our approach – it is clear that while some women are keen to meet more WLWH, and to attend information evenings, some are not, and that women have different preferences and expectations for how, and where, support might be provided. We did not ask about practical limitations or barriers to attending services/peer support/discussion groups, e.g. childcare and work commitments. Additional costs such as travel and childcare are also likely to impact on patient forum attendance and the viability of peer support networks, in a cohort who are generally on low incomes. There may of course be many other reasons why women were not interested in peer support including fear of breaches in confidentiality and issues with both external and internal stigma. Lack of encouragement from health professionals may play a role and this will be impacted on by the perceived quality of the peer support available locally. Further research is required into the complex issues of barriers to, as well enablers of peer support in all populations groups, not just WLWH. In a population such as the one served by NHS Lothian with little immigration for Sub-Saharan Africa and relatively low numbers of WLWH, we must be aware that while at times the numbers we will be working with may be small, the relevance and power of that work to individuals may be considerable.

This survey has been helpful in allowing us to be more aware of the challenges facing WLWH who attend our service. Results offer invaluable help in the ongoing development of the HIV patient forum and can be used to shape peer support networks, as well as strengthen inter-agency relationships with the voluntary sector and place GBV in WLWH as a universal agenda priority.

Footnotes

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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