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

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.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Bibliothèque numérique du CRDI : un dépôt institutionnel à libre accès permettant de diffuser les résultats des travaux de chercheurs de pays en développement

Le Centre de recherches pour le développement international (CRDI) a récemment procédé au lancement de la Bibliothèque numérique du CRDI (BNC). Il s’agit d’un un dépôt institutionnel reposant sur DSpace et conforme au protocole OAI-PMH (Open Archives Initiative Protocol for Metadata Harvesting). Créée dans le but de favoriser la diffusion des extrants issus de projets de recherche financés par le CRDI, la BNC se distingue d’autres dépôts institutionnels en ce qu’elle est la base de données bibliographiques publique d’un organisme subventionnaire de la recherche canadien, est axée sur le développement international et est rétrospective – c’est-à-dire que son contenu remonte jusqu’au début des années 1970. Les questions de propriété intellectuelle ont été un facteur important. Des établissements et des chercheurs des pays en développement détiennent les droits d’auteur d’une grande partie du contenu de la BNC. Pour numériser ce contenu et le verser dans la cette bibliothèque à libre accès, il a fallu obtenir l’autorisation de centaines de détenteurs de droits d’auteur en Afrique, en Asie et en Amérique latine. Cependant, le CRDI estime que le versement d’extrants issus de travaux de recherche menés dans les pays en développement dans la BNC permettra d’améliorer la diffusion des travaux des chercheurs du Sud. On s’attend à ce que la BNC contribue à combler l’écart des savoirs Sud-Sud et Sud-Nord. Ce moyen de diffusion permettra aussi d’accroître la visibilité, l’accessibilité et l’impact des recherches menées dans les pays du Sud

IDRC Digital Library : an open access institutional repository disseminating the research results of developing world researchers

The International Development Research Centre (IDRC) has recently launched the OAI-PMH compliant IDRC Digital Library (IDL), a DSpace institutional repository. The digital library has been developed to enhance the dissemination of research outputs created as a result of Centre-funded research. The repository has a number of unique qualities. It is the public bibliographic database of a Canadian research funding organization, its subject focus is international development and the content is retrospective, dating back to the early 1970s. Intellectual property issues have been a major factor in the development of the repository. Copyright ownership of a majority of IDL content is held by developing world institutions and researchers. The digitization of content and its placement in the open access IDL has involved obtaining permissions from hundreds of copyright holders located in Africa, Asia and Latin America. IDRC has determined that obtaining permissions and populating the repository with developing world researchers’ outputs will help to improve scholarly communication mechanisms for Southern researchers. The expectation is that the IDL will make a contribution to bridging the South to South and South to North knowledge gap. The IDRC Digital Library will serve as a dissemination channel that will improve the visibility, accessibility and research impact of southern research

Empowerment through knowledge and the sharing of knowledge

Presented at the Canadian Association of Research Libraries Access2006 Preconference entitled "Institutional repositories: the next generation

Living with and without an intestinal stoma: Factors that promote psychological well-being and self-care: A cross sectional study.:Psychological well-being and stoma

Abstract Aims This study compared those living with and without an intestinal stoma in relation to physical and psychological health, stress and coping, quality of life and resilience. Also, identifying factors that could be used to promote better self‐care in stoma patients in the future. Design A cross‐sectional and comparative study design was employed. Methods Participants were recruited via email and social media (Facebook and Twitter) between August 2018 and March 2019, to complete an online survey. The data were analysed using analysis of variance to examine group difference and a series of hierarchical linear regression analyses determining predictors of psychological well‐being. Results Of 278 participants aged 18–68 years who completed the survey, 129 (46%) had a stoma and reported significantly poorer physical health. Approximately one‐fifth experienced problems with stoma management. Psychological well‐being was mediated by the duration of living with a stoma (under 3 years) and frequency of leaks (weekly and monthly)

Peristomal Skin Complications Are Common, Expensive, and Difficult to Manage: A Population Based Cost Modeling Study

BACKGROUND: Peristomal skin complications (PSCs) are the most common post-operative complications following creation of a stoma. Living with a stoma is a challenge, not only for the patient and their carers, but also for society as a whole. Due to methodological problems of PSC assessment, the associated health-economic burden of medium to longterm complications has been poorly described. AIM: The aim of the present study was to create a model to estimate treatment costs of PSCs using the standardized assessment Ostomy Skin Tool as a reference. The resultant model was applied to a real-life global data set of stoma patients (n = 3017) to determine the prevalence and financial burden of PSCs. METHODS: Eleven experienced stoma care nurses were interviewed to get a global understanding of a treatment algorithm that formed the basis of the cost analysis. The estimated costs were based on a seven week treatment period. PSC costs were estimated for five underlying diagnostic categories and three levels of severity. The estimated treatment costs of severe cases of PSCs were increased 2-5 fold for the different diagnostic categories of PSCs compared with mild cases. French unit costs were applied to the global data set. RESULTS: The estimated total average cost for a seven week treatment period (including appliances and accessories) was 263€ for those with PSCs (n = 1742) compared to 215€ for those without PSCs (n = 1172). A co-variance analysis showed that leakage level had a significant impact on PSC cost from 'rarely/never' to 'always/often' p<0.00001 and from 'rarely/never' to 'sometimes' p = 0.0115. CONCLUSION: PSCs are common and troublesome and the consequences are substantial, both for the patient and from a health economic viewpoint. PSCs should be diagnosed and treated at an early stage to prevent long term, debilitating and expensive complications

"It's just horrible": a qualitative study of patients' and carers' experiences of bowel dysfunction in Multiple Sclerosis

Background: Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and / or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. Objective: To understand 'what it is like' to live with bowel dysfunction and the impact this has on people with MS and carers. Methods: Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling. Data were analysed using a pragmatic inductive-deductive method. Results: Participants identified multiple psychological, physical and social impacts of bowel dysfunction. Health care professional support ranged from empathy and appropriate onward referral, to lack of interest or not referring to appropriate services. Participants want bowel issues to be discussed more openly, with clinicians instigating a discussion early after MS diagnosis and repeating enquiries regularly. Conclusions: Bowel dysfunction impacts on the lives of people with MS and their carers; their experience with care services is often unsatisfactory. Understanding patient and carer preferences about management of bowel dysfunction can inform clinical care and referral pathways