Coping and help seeking behaviour in women with Pelvic Floor Dysfunction – the emic perspective
Pelvic Floor Dysfunction: (PFD) encompasses symptoms that rarely occur in isolation and include urinary and faecal incontinence, rectal evacuatory dysfunction and pelvic organ prolapse. It impacts on the quality of life of at least one third of adult women, with recent reviews suggesting that pelvic floor prolapse may occur in up to 50% of parous women. PFD is associated with a delay in seeking help. Why women with PFD seek or do not seek help for their symptoms has been unclear but is recognised as being multi-factorial. Aim: to learn from women with PFD, to understand the coping mechanisms they develop to live with PFD, and the triggers which prompt their seeking help. Methodology: this study, grounded in the naturalist paradigm, was a micro-ethnographic study focusing on the emic perspective of a defined group, women diagnosed with PFD, who presented to an East London Hospital for treatment. Leininger’s Culture Care theory and ethno-nursing methods were used to facilitate knowledge generation. The study took place in three consecutive phases, each informing the next phase. Phase 1 - One Life Health Care History. This was an instrumental case study which obtained a personalised and longitudinal account of the woman’s health, care and illness experiences from a lifetime perspective. Phase 2 - Eight semi structured interviews; these focussed on the themes generated from a review of the literature pertaining to coping and help seeking behaviour, and themes generated from Phase 1, which were continued until saturation was achieved. Phase 3 - Focus groups from three cultures (Turkish, Orthodox Jewish and African) which represent the ethnic mix of the local population. These explored universality and diversity amongst different cultural groups with respect to coping and help seeking behaviour. Results: this study has identified universality and diversity in coping and help seeking behaviour in women with PFD. Personality and culture have a significant impact on coping and help seeking behaviour, and lack of knowledge is a barrier to help seeking. Social taboo and the role of women in society influenced the coping behaviours of women. Women developed masking and containment strategies, and avoided aspects of social interaction to ensure their PFD problems remained secret. The fear of disgrace (opprobrium) and the delay in seeking help is linked to the woman’s position in her society, and the degree to which women appropriate opprobrium is dependent on their personality and their cultural feelings of self-worth as women in their own communities. Recommendations: if women are to be encouraged and supported to seek help for their PFD, it will be imperative to raise public knowledge and awareness of PFD. Public Health Departments, in conjunction with GP practises, will be key in promoting awareness and advertising integrated PFD services, ensuring posters and information leaflets are translated and displayed in facilities frequently used by women. Facilitating ease of access to PFD services will require the development of integrated PFD services, with community based self referral clinics or drop-in clinics being made available. Health care providers need education and support to ensure they empower women to seek help by giving them permission to discuss any PFD concerns they may have. Conclusions: the contribution to knowledge from this study include the lay care practices that women with PFD employ in order to cope with the problem, and an appreciation of the laycare practices utilised by women. Understanding of care influencers has facilitated recommendations for service and practice development. Areas for further research have been identified. The increasing prevalence of PFD is well known, with studies suggesting that over the next 30 years the number of women seeking help for PFD symptoms will increase at twice the population growth rate. Knowledge and understanding of women’s coping and help seeking behaviour is essential if services are to be developed to meet this growing need. Knowledge generated from this research in relation to opprobrium appropriation makes a unique contribution to the discipline of nursing.
RA Public aspects of medicine, RA0421 Public health. Hygiene. Preventive Medicine
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