Women with HIV GRowing Older Wiser and Stronger (GROWS)

GROWS (GRowing Older Wiser and Stronger) is a programme to support us, as women ageing with HIV.

It is one of Fast Track Cities HIV London Improvement Fund’s twelve funded-projects, and is a collaboration between Sophia Forum, Positively UK, NAM aidsmap and University College London.

Advances in antiretroviral therapy mean that the number of women with HIV aged over 50 has tripled in the past 10 years to over 10,000. Our experiences of growing older are affected by things such as income and whether we have a job, impacting our quality of life. We also know that women living with HIV experience poorer mental health, with older Black African and Caribbean women living with HIV being particularly at risk of mental health issues.

For women who have been living with HIV for a long time, and who may already be affected by long term HIV medication, the challenges could be even greater. Challenges faced by women as they get older include menopausal symptoms, increased risk of osteoporosis/osteopenia (weakening of the bones which increases risk of having a fracture), and cardiovascular disease (which if untreated can lead to angina and heart attacks).

In addition to health issues, some of us can feel invisible as women past childbearing age. Stigma, poverty, gender-based violence and immigration problems all intersect, impacting our mental, physical health and emotional wellbeing. It can take time and support to embrace growing older and wiser.

However, many of these challenges can be faced successfully if we know about them, and have the appropriate support of our health care teams, our families and our communities. We know that many women with HIV can also feel more powerful, and comfortable with themselves as they embrace growing older. The collective knowledge and lived experiences of older women living with HIV can be harnessed to empower and support other women.

The GROWS project aims to reduce those inequalities by providing peer-led support, accurate and accessible information, and networks and spaces to help improve outcomes for all women.

In the first year of our work we have:

Analysed existing data from two large studies with older women living with HIV: The PRIME Study and “I was not meant to be here, and I’m still here” an exploration of women’s experiences of ageing with HIV by Dr Jacqui Stevenson
Completed four focus group discussions with 19 women living with HIV aged over 40,
Conducted five semi-structured interviews with key stakeholders,
Drafted an interim project report, highlighting our advocacy asks, aimed at women living with HIV, policy makers and service providers,
Developed three videos (led by NAM aidsmap) capturing the voices of women growing older with HIV.

This work will inform our work over the remaining duration of GROWS. In years 2 and 3 (2021-2023) we will:

Train 45 peer mentors for women living with HIV aged over 40 (peer mentors will be offered an opportunity to gain an accredited City & Guilds award in Education and Training to improve chances for economic stability),
Train a sub-group of GROWS peer mentors to become GROWS trainers, thus building a sustainable resource,
Develop and launch our support programme for women ageing with HIV,
Produce eight videos covering experiences of women ageing with HIV, such as the menopause and living with HIV over the long term.

If you are interested in becoming a peer mentor for this project, or would like to find out more, please email Juddy Otti on juddy.otti@sophiaforum.net or Rebecca Mbewe on rmbewe@positivelyuk.org.

Here are some of the short videos developed by NAM on different aspects of ageing:

Silvia Petretti on sexual pleasure