Challenging Gender Stereotypes in Palliative Care

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1 Challenging Gender Stereotypes in Palliative Care Sue Cameron and Kath Defilippi Patient Care Portfolio Managers Hospice Palliative Care Association South Africa

2 Background An exploration of gender within a palliative care context formed one part of a 5-year programme funded by the Canadian International Development Agency (CIDA)

3 Focus areas 1. Analysis of gender perceptions within hospices 2. Workshops to explore gender-related issues 3. Gender Task Team and development of Gender Guidelines

4 1. Analysis of gender perceptions within hospices Two questionnaires were sent to 50 HPCA member hospices Questionnaire A focused on internal organizational issues Questionnaire B focused on issues related to patient and family care

5 Key Results of Questionnaire A Governance and management women men Board level 45% 55% Management level 79% 21% Staff Doctors 45% 55% Nurses and Community caregivers 90% 10%

6 Key results of Questionnaire B 60% of patients are women in comparison with men who make up 27% of patients. This gap is narrower for girls and boys under 18 years old with an average for the girls of 7% and for the boys of 6%. In the case of HIV+ patients, stigma is the overriding reason why both males and females are reluctant to access care Many of the hospices who responded stated that they did not believe that there was a difference between the needs of men and women and that the needs exist because they are patients and not because they are men or women.

7 Perceptions related to how women and men behave as patients Women in the family are expected disclose their HIV status while men cannot be questioned and are much less likely to admit to being HIV+ Men usually come for treatment later than women Many men believe that women have infected them Men expect to be cared for but are often not prepared to care for a sick wife/partner

8 2. Workshops to explore gender-related issues Key issues highlighted during the workshops Gender inequality is one of the key drivers of the HIV and AIDS pandemic. Gender and sexuality norms, unequal power relations between women and men and violence against women are significant factors in the higher HIV prevalence amongst women and girls. Poverty and economic dependency greatly increase both women s s and men s s vulnerability in the HIV and AIDS pandemic Women s s economic vulnerability makes it more likely that they will exchange sex for money or favours,, less likely that they will be able to negotiate safer sex and less likely that they will leave a relationship, even if they know it is risky for them.

9 HIV/AIDS has significantly increased the burden of care for many women and young girls. As their sons and daughters become sick and die of AIDS related illnesses, older women often become the sole carers and providers for their adult children and orphaned grandchildren. It is mostly young girls and adolescents who are forced to leave school to provide care in the home. This not only denies girls their right to education, fueling existing power imbalances between women and men, but also increases their vulnerability to HIV infection. High rates of mortality have left many widows vulnerable to displacement and loss of property.

10 Acknowledging that patients are men and women includes recognizing the social context of women and men patients and their families. This means recognizing the gender division of labour, gender identities and the unequal power relations between women and men. This would influence the overall approach and perspective of the programmes and services. One concrete implication of this is the recognition that women and men have different needs and interests and that different social and cultural forces influence their identities, behavior and opportunities.

11 3. Gender Task Team and development of Gender Guidelines A national HPCA Gender Task Team has been established to take into account the gender dimensions of palliative care within portfolios ranging from patient care, education and research to advocacy and organizational development. The Gender Guidelines are divided into two parts. The first focuses on promoting gender sensitivity at a national HPCA level and the second section deals with gender issues at a local hospice level (organizational and patient care). For example: Within governance and leadership, the break down of decision-making structures within the organization is equitable and reflects gender der- sensitivity at all levels. Minutes of clinical meetings reflect that the specific gender needs eds and interests of women, girls, boys and men are discussed and addressed. sed.

12 Examples of how hospices are applying the Gender Guidelines One hospice supported and assisted a female home- based carer to gain access to a four year nursing course, enabling her to improve her education as well as her economic situation in the future. A hospice assisted a male patient whose wife died to take on caregiving responsibilities within the home.

13 Gender needs to be seen as an inextricable part of the provision of palliative care, particularly with regard to HIV/AIDS. We believe that this ground-breaking work can make a significant contribution to enhancing patient care and family support by taking gender roles and needs into account.

14 Thanks to: Gender consultants -Susan Holland-Muter and Nancy Castro-Leal Canadian International Development Agency (CIDA) HPCA Gender Task Team