6 research outputs found

    Urinary incontinence in older women: exploring lived experiences and examining co-production

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    Rationale: Urinary incontinence (UI) is a common condition in women that leads to involuntary passing of urine. UI can impact social and mental wellbeing due to the associated stigma, which underlines the importance of inclusive research. Co-production research emphasises shared decision-making and collective knowledge; there is a lack of research into the realities of this approach, especially focused on physical illnesses. The Leeds Older women Urinary Incontinence Self-mAnagement (LOUISA) study is the wider project within which the current study is situated, bringing together these components through co-production of a self-management intervention for UI. The current study focuses on the individual perspectives in these areas, in terms of living with UI and stakeholder experiences of co-producing UI research. Aims: 1) To explore older women’s perceptions of living with UI (phase 1); 2) to examine the principles of co-production within the context of the LOUISA project (phase 2). Method: Phase 1 utilised an interpretative phenomenological approach (IPA). A qualitative meta-synthesis was conducted to explore gaps in existing literature, supplemented by interviews with 3 women. For phase 2 a scoping review was conducted to map co-production literature and interviews with LOUISA stakeholders (academic, healthcare provider, service user, funder) and one meeting observation was conducted. Results: The key themes from phase 1 are embarrassment and normalisation. Embarrassment characterised the lived experience of UI, permeating across several themes e.g. childhood experiences and coping strategies. The normalisation of UI as it relates to perceptions of age was another key finding, as UI was often believed to be an ordinary part of ageing. Key themes from phase 2 relate to concepts of co-production and power differentials. Barriers and facilitators to co-production were identified and tensions between theoretical and practical aspects were considered. Power differentials in the context of co-production were also identified as an important consideration. Conclusion: This study provides insight into the lived experience of UI from the perspective of older women living in the UK who have either never sought professional help or have previously engaged with medical services but have since disengaged. Understanding the lived experience of UI is integral to providing appropriate support. This study also provides recommendations for co-producing research for stigmatised long-term conditions (LTCs) similar to UI, based on the experiences of stakeholders involved in an ongoing project

    The tipping point of antenatal engagement: a qualitative grounded theory in Tanzania and Zambia

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    Background Effective antenatal care is fundamental to the promotion of positive maternal and new-born outcomes. International guidance recommends an initial visit in the first trimester of pregnancy, with a minimum of four antenatal visits in total: the optimum schedule being eight antenatal contacts. In low- and middle-income countries, many women do not access antenatal care until later in pregnancy and few have the recommended number of contacts. Aim To gain understanding of women’s antenatal experiences in Tanzania and Zambia, and the factors that influence antenatal engagement. Methods The study was underpinned by Strauss’s grounded theory methodology. Interviews were conducted with 48 women, 16 partners, 21 health care providers and 11 stakeholders, and analysed using constant comparison. Findings The core category was ‘The tipping point of antenatal engagement’, supported by four categories: awareness of health benefits, experiential motivators, influential support, and environmental challenges. Although participants recognised the importance of antenatal care to health outcomes, individual motivations and external influences determined attendance or non-attendance. The ‘tipping point’ for antenatal engagement occurred when women believed that any negative impact could be offset by tangible gain. For some women non-attendance was a conscious decision, for others it was an unchallenged cultural norm. Conclusion A complex interplay of factors determines antenatal engagement. Short-term modifiable factors to encourage attendance include the development of strategies for increasing respectful care; use of positive women’s narratives, and active community engagement. Further research is required to develop innovative, cost-effective care models that improve health literacy and meet women’s needs

    The Seventeenth Data Release of the Sloan Digital Sky Surveys: Complete Release of MaNGA, MaStar and APOGEE-2 Data

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    This paper documents the seventeenth data release (DR17) from the Sloan Digital Sky Surveys; the fifth and final release from the fourth phase (SDSS-IV). DR17 contains the complete release of the Mapping Nearby Galaxies at Apache Point Observatory (MaNGA) survey, which reached its goal of surveying over 10,000 nearby galaxies. The complete release of the MaNGA Stellar Library (MaStar) accompanies this data, providing observations of almost 30,000 stars through the MaNGA instrument during bright time. DR17 also contains the complete release of the Apache Point Observatory Galactic Evolution Experiment 2 (APOGEE-2) survey which publicly releases infra-red spectra of over 650,000 stars. The main sample from the Extended Baryon Oscillation Spectroscopic Survey (eBOSS), as well as the sub-survey Time Domain Spectroscopic Survey (TDSS) data were fully released in DR16. New single-fiber optical spectroscopy released in DR17 is from the SPectroscipic IDentification of ERosita Survey (SPIDERS) sub-survey and the eBOSS-RM program. Along with the primary data sets, DR17 includes 25 new or updated Value Added Catalogs (VACs). This paper concludes the release of SDSS-IV survey data. SDSS continues into its fifth phase with observations already underway for the Milky Way Mapper (MWM), Local Volume Mapper (LVM) and Black Hole Mapper (BHM) surveys

    The impact of cultural beliefs and practices on parents’ experiences of bereavement following stillbirth: a qualitative study in Uganda and Kenya

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    Background Stillbirth is an extremely traumatic and distressing experience for parents, with profound and long-lasting negative impacts. Cultural beliefs and practices surrounding death vary considerably across different contexts and groups, and are a key influence on individual experiences, impacting grief, adjustment, and support needs. Few studies have explored cultural influences surrounding stillbirth in an African context. This study explored the influence of cultural beliefs and practices on the experiences of bereaved parents and health workers after stillbirth in urban and rural settings in Kenya and Uganda. Methods A qualitative descriptive study design was employed. Face to face interviews were conducted with parents (N = 134) who experienced a stillbirth (≀ 1 year) and health workers (N = 61) at five facilities in Uganda and Kenya. Interviews were conducted in English or the participants’ local language, audio-recorded and transcribed verbatim. Analysis was conducted using descriptive thematic analysis. Results Commonalities in cultural beliefs and practices existed across the two countries. Three main themes were identified: 1) Gathering round, describes the collective support parents received from family and friends after stillbirth. 2)‘It is against our custom’ addresses cultural constraints and prohibitions impacting parents’ behaviour and coping in the immediate aftermath of the baby’s death. 3) ‘Maybe it’s God’s plan or witchcraft’ summarises spiritual, supernatural, and social beliefs surrounding the causes of stillbirth. Conclusions Kinship and social support helped parents to cope with the loss and grief. However, other practices and beliefs surrounding stillbirth were sometimes a source of stress, fear, stigma and anxiety especially to the women. Conforming to cultural practices meant that parents were prevented from: holding and seeing their baby, openly discussing the death, memory-making and attending the burial. The conflict between addressing their own needs and complying with community norms hindered parents’ grief and adjustment. There is an urgent need to develop culturally sensitive community programmes geared towards demystifying stillbirths and providing an avenue for parents to grieve in their own way

    Parents’ experiences of care and support after stillbirth in rural and urban maternity facilities:A qualitative study in Kenya and Uganda

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    Objective To explore parents' lived experiences of care and support following stillbirth in urban and rural health facilities. Design Qualitative, interpretative, guided by Heideggerian phenomenology. Setting Nairobi and Western Kenya, Kampala and Central Uganda. Sample A purposive sample of 75 women and 59 men who had experienced the stillbirth of their baby (≀1 year previously) and received care in the included facilities. Methods In-depth interviews, analysed using Van Manen's reflexive approach. Results Three main themes were identified; parents described devastating impacts and profound responses to their baby's death. Interactions with health workers were a key influence, but poor communication, environmental barriers and unsupportive facility policies/practices meant that needs were often unmet. After discharge, women and partners sought support in communities to help them cope with the death of their baby but frequently encountered stigma engendering feelings of blame and increasing isolation. Conclusions Parents in Kenya and Uganda were not always treated with compassion and lacked the care or support they needed after the death of their baby. Health workers in Kenya and Uganda, in common with other settings, have a key role in supporting bereaved parents. There is an urgent need for context and culturally appropriate interventions to improve communication, health system and community support for African parents

    The Seventeenth Data Release of the Sloan Digital Sky Surveys:complete release of MaNGA, MaStar and APOGEE-2 data

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    This paper documents the seventeenth data release (DR17) from the Sloan Digital Sky Surveys; the fifth and final release from the fourth phase (SDSS-IV). DR17 contains the complete release of the Mapping Nearby Galaxies at Apache Point Observatory (MaNGA) survey, which reached its goal of surveying over 10,000 nearby galaxies. The complete release of the MaNGA Stellar Library accompanies this data, providing observations of almost 30,000 stars through the MaNGA instrument during bright time. DR17 also contains the complete release of the Apache Point Observatory Galactic Evolution Experiment 2 survey that publicly releases infrared spectra of over 650,000 stars. The main sample from the Extended Baryon Oscillation Spectroscopic Survey (eBOSS), as well as the subsurvey Time Domain Spectroscopic Survey data were fully released in DR16. New single-fiber optical spectroscopy released in DR17 is from the SPectroscipic IDentification of ERosita Survey subsurvey and the eBOSS-RM program. Along with the primary data sets, DR17 includes 25 new or updated value-added catalogs. This paper concludes the release of SDSS-IV survey data. SDSS continues into its fifth phase with observations already underway for the Milky Way Mapper, Local Volume Mapper, and Black Hole Mapper surveys
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