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  1. Article ; Online: "It was classed as a nonemergency": Women's experiences of kidney disease and preconception decision-making, family planning, and parenting in the United Kingdom during COVID-19.

    Laughlin, Leah Mc / Noyes, Jane / Neukirchinger, Barbara / Williams, Denitza / Phillips, Rhiannon / Griffin, Sian

    Perspectives on sexual and reproductive health

    2024  

    Abstract: Objectives: To investigate the experiences of women with kidney disease, residing in the United Kingdom (UK), living through the first 18 months of the COVID-19 pandemic with specific focus on preconception decision-making, family planning, and ... ...

    Abstract Objectives: To investigate the experiences of women with kidney disease, residing in the United Kingdom (UK), living through the first 18 months of the COVID-19 pandemic with specific focus on preconception decision-making, family planning, and parenting.
    Methods: We conducted a mixed-methods study, comprising an online survey and follow-up interviews, with UK-resident women aged 18-50.
    Results: We received 431 surveys and conducted 30 interviews. Half (n = 221, 51%) of the survey respondents considered that COVID-19 influenced the quality of communication with healthcare professionals and 68% (n = 295) felt that the pandemic disrupted their support networks. Interview participants indicated that delayed and canceled appointments caused anxiety, grief, and loss of pregnancy options. Women's perception of themselves as (good) mothers as well as their capacity to have and raise a child, meet partners, and sustain healthy relationships was negatively affected by the "clinically extremely vulnerable" label. Women's trust in their healthcare was dismantled by miscommunication and variation in lockdown rules that caused confusion and increased worry. Women reported that COVID-19 contributed to postnatal depression, excessive concern over infant mortality, preoccupation over others following rules, and catastrophising.
    Conclusion: Some women in the UK with chronic kidney disease lost or missed their opportunity to have children during the pandemic. Future pandemic planners need to look more holistically and longer term at what is and is not classed as an emergency, both in how services are reconfigured and how people with chronic conditions are identified, communicated with, and treated.
    Language English
    Publishing date 2024-03-14
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2075205-2
    ISSN 1931-2393 ; 1538-6341
    ISSN (online) 1931-2393
    ISSN 1538-6341
    DOI 10.1111/psrh.12256
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Interventions for and experiences of shared decision-making underpinning reproductive health, family planning options and pregnancy for women with or at high risk of kidney disease: a systematic review and qualitative framework synthesis.

    Mc Laughlin, Leah / Neukirchinger, Barbara / Noyes, Jane

    BMJ open

    2022  Volume 12, Issue 8, Page(s) e062392

    Abstract: Objective: To determine intervention effects and synthesise qualitative research that explored women with or at high risk of kidney disease experiences of shared decision-making in relation to their reproductive health, family planning options and ... ...

    Abstract Objective: To determine intervention effects and synthesise qualitative research that explored women with or at high risk of kidney disease experiences of shared decision-making in relation to their reproductive health, family planning options and pregnancy.
    Design: A systematic review of interventions and a qualitative evidence synthesis.
    Data sources: We searched Cochrane, CINAHL, MEDLINE, Scopus, ProQuest, Elsevier, PubMed, ScienceDirect and Web of Science.
    Eligibility criteria: Shared decision-making interventions and qualitative studies related to reproductive health involving women with or at high risk of kidney disease published from 1980 until January 2021 in English (clinical settings, global perspective).
    Data extraction and synthesis: Titles were screened against the inclusion criteria and full-text articles were reviewed by the whole team. Framework synthesis was undertaken.
    Results: We screened 1898 studies. No evidence-based interventions were identified. 18 qualitative studies were included, 11 kidney disease-specific studies and 7 where kidney disease was a common comorbidity. Women frequently felt unprepared and uninformed about their reproductive options. Conversations with healthcare professionals were commonly described as frustrating and unhelpful, often due to a perceived loss of autonomy and a mismatch in preferences and life goals. Examples of shared decision-making were rare. Kidney disease exacerbated societal expectations of traditional gender roles (eg, wife, mother, carer) including capability to have children and associated factors, for example, parenting, (sexual) relationships, body image and independent living (including financial barriers to starting a family). Local interventions were limited to types of counselling. A new health system model was developed to support new interventions.
    Conclusion: There is a clear need to establish new interventions, test those already in development and develop new clinical guidance for the management of women with or at high risk of kidney disease in relation to their reproductive health, including options to preserve fertility earlier. Other health conditions with established personalised reproductive care packages, for example, cancer, could be used to benchmark kidney practice alongside the new model developed here.
    MeSH term(s) Child ; Family Planning Services ; Female ; Health Personnel ; Humans ; Kidney Diseases/therapy ; Pregnancy ; Qualitative Research ; Reproductive Health
    Language English
    Publishing date 2022-08-08
    Publishing country England
    Document type Journal Article ; Systematic Review ; Research Support, Non-U.S. Gov't
    ZDB-ID 2599832-8
    ISSN 2044-6055 ; 2044-6055
    ISSN (online) 2044-6055
    ISSN 2044-6055
    DOI 10.1136/bmjopen-2022-062392
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: The implementation, use and impact of patient reported outcome measures in value-based healthcare programmes: A scoping review.

    Silveira Bianchim, Mayara / Crane, Ellie / Jones, Anwen / Neukirchinger, Barbara / Roberts, Gareth / Mclaughlin, Leah / Noyes, Jane

    PloS one

    2023  Volume 18, Issue 12, Page(s) e0290976

    Abstract: Background: Value-Based Healthcare (VBHC) focuses on the value of patient outcomes and is achieved by ensuring resources already available are managed to realise the best possible individual and population health outcomes. Patient reported outcome ... ...

    Abstract Background: Value-Based Healthcare (VBHC) focuses on the value of patient outcomes and is achieved by ensuring resources already available are managed to realise the best possible individual and population health outcomes. Patient reported outcome measures (PROMs) measure the impact of illnesses from the patient perspective. We conducted a scoping review to understand how PROMs were implemented and used, and their impact in the context of VBHC.
    Methods: Arksey and O'Malley's overarching framework supplemented by principles from mixed-methods Framework Synthesis were used. CINAHL, Cochrane Library, EMBASE, MEDLINE, PsycINFO, Web of Science, Google Scholar and reference lists were searched. An a priori data extraction framework was created using the review question and objectives as key domains against which to extract data. Mixed-methods data were organised, integrated and preserved in original format and reported for each domain.
    Results: Forty-three studies were included with 60,200 participants. Few studies reported a well-developed programme theory and we found little robust evidence of effect. PROMs were universally considered to have the potential to increase patient satisfaction with treatment and services, enhance patient awareness of symptoms and self-management, and improve health outcomes such as quality of life and global health status. Evidence is currently limited on how PROMs work and how best to optimally implement PROMs to achieve the target outcome. Implementation challenges commonly prevented the realisation of optimal outcomes and patients generally needed better and clearer communication about why PROMs were being given and how they could optimally be used to support their own self-management.
    Conclusion: PROMSs have yet to demonstrate their full potential in a VBHC context. Optimal PROMs implementation is poorly understood by clinicians and patients. Future studies should explore different models of PROM implementation and use within VBHC programmes to understand what works best and why for each specific context, condition, and population.
    MeSH term(s) Humans ; Quality of Life ; Value-Based Health Care ; Health Facilities ; Patient Satisfaction ; Patient Reported Outcome Measures
    Language English
    Publishing date 2023-12-06
    Publishing country United States
    Document type Review ; Journal Article
    ZDB-ID 2267670-3
    ISSN 1932-6203 ; 1932-6203
    ISSN (online) 1932-6203
    ISSN 1932-6203
    DOI 10.1371/journal.pone.0290976
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Why is transition between child and adult services a dangerous time for young people with chronic kidney disease? A mixed-method systematic review.

    Dallimore, David J / Neukirchinger, Barbara / Noyes, Jane

    PloS one

    2018  Volume 13, Issue 8, Page(s) e0201098

    Abstract: Young people age 14-25 years with chronic kidney disease have been identified as generally having poor health outcomes and are a high-risk group for kidney transplant loss due in part to poor self-management. This raises a key question as to what happens ...

    Abstract Young people age 14-25 years with chronic kidney disease have been identified as generally having poor health outcomes and are a high-risk group for kidney transplant loss due in part to poor self-management. This raises a key question as to what happens during transition from child to adult services? This paper presents a mixed-method systematic review of health and social care evidence concerning young people with chronic kidney disease transitioning from child to adult health and social care services. Quantitative and qualitative evidence were synthesised in streams followed by an overarching synthesis. Literature searches (2000 to March 2017) were conducted using Pubmed, BioMed Central and Cochrane Library, grey literature sources ZETOC, .gov.uk, third sector organisations, NHS Evidence, SCIE, TRIP, Opengrey. Snowball searching was conducted in the databases Ovid, CINAHL, ISI Web of Science, Scopus and Google Scholar. Of 3,125 records screened, 60 texts were included. We found that while strategies to support transition contained consistent messages, they supported the principle of a health-dominated pathway. Well-being is mainly defined and measured in clinical terms and the transition process is often presented as a linear, one-dimensional conduit. Individual characteristics, along with social, familial and societal relationships are rarely considered. Evidence from young people and their families highlights transition as a zone of conflict between independence and dependency with young people feeling powerless on one hand and overwhelmed on the other. We found few novel interventions and fewer that had been evaluated. Studies were rarely conducted by allied health and social care professionals (e.g. renal social workers and psychologists) as part of multi-disciplinary renal teams. We conclude that there is a lack of good evidence to inform providers of health and social care services about how best to meet the needs of this small but vulnerable cohort.
    MeSH term(s) Adolescent ; Adult ; Humans ; Patient Transfer ; Renal Insufficiency, Chronic/therapy ; Risk
    Language English
    Publishing date 2018-08-02
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Systematic Review
    ZDB-ID 2267670-3
    ISSN 1932-6203 ; 1932-6203
    ISSN (online) 1932-6203
    ISSN 1932-6203
    DOI 10.1371/journal.pone.0201098
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Feminizing care pathways: Mixed-methods study of reproductive options, decision making, pregnancy, post-natal care and parenting amongst women with kidney disease.

    Mc Laughlin, Leah / Jones, Caron / Neukirchinger, Barbara / Noyes, Jane / Stone, Judith / Williams, Helen / Williams, Denitza / Rapado, Rose / Phillips, Rhiannon / Griffin, Sian

    Journal of advanced nursing

    2023  Volume 79, Issue 8, Page(s) 3127–3146

    Abstract: Aims: To identify the needs, experiences and preferences of women with kidney disease in relation to their reproductive health to inform development of shared decision-making interventions.: Design: UK-wide mixed-methods convergent design (Sep 20-Aug ...

    Abstract Aims: To identify the needs, experiences and preferences of women with kidney disease in relation to their reproductive health to inform development of shared decision-making interventions.
    Design: UK-wide mixed-methods convergent design (Sep 20-Aug 21).
    Methods: Online questionnaire (n = 431) with validated components. Purposively sampled semi-structured interviews (n = 30). Patient and public input throughout.
    Findings: Kidney disease was associated with defeminization, negatively affecting current (sexual) relationships and perceptions of future life goals. There was little evidence that shared decision making was taking place. Unplanned pregnancies were common, sometimes influenced by poor care and support and complicated systems. Reasons for (not) wanting children varied. Complicated pregnancies and miscarriages were common. Women often felt that it was more important to be a "good mother" than to address their health needs, which were often unmet and unrecognized. Impacts of pregnancy on disease and options for alternates to pregnancy were not well understood.
    Conclusion: The needs and reproductive priorities of women are frequently overshadowed by their kidney disease. High-quality shared decision-making interventions need to be embedded as routine in a feminized care pathway that includes reproductive health. Research is needed in parallel to examine the effectiveness of interventions and address inequalities.
    Impact: We do not fully understand the expectations, needs, experiences and preferences of women with kidney disease for planning and starting a family or deciding not to have children. Women lack the knowledge, resources and opportunities to have high-quality conversations with their healthcare professionals. Decisions are highly personal and related to a number of health, social and cultural factors; individualized approaches to care are essential. Healthcare services need to be redesigned to ensure that women are able to make informed choices about pregnancy and alternative routes to becoming a parent.
    Patient or public contribution: The original proposal for this research came from listening to the experiences of women in clinic who reported unmet needs and detailed experiences of their pregnancies (positive and negative). A patient group was involved in developing the funding application and helped to refine the objectives by sharing their experiences. Two women who are mothers living with kidney disease were co-opted as core members of the research team. We hosted an interim findings event and invited patients and wider support services (adoption, fertility, surrogacy, education and maternal chronic kidney disease clinics) from across the UK to attend. We followed the UK national standards for patient and public involvement throughout.
    MeSH term(s) Child ; Female ; Humans ; Pregnancy ; Critical Pathways ; Decision Making ; Kidney Diseases ; Parenting ; Reproduction
    Language English
    Publishing date 2023-03-31
    Publishing country England
    Document type Journal Article
    ZDB-ID 197634-5
    ISSN 1365-2648 ; 0309-2402
    ISSN (online) 1365-2648
    ISSN 0309-2402
    DOI 10.1111/jan.15659
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.B 1851: Show issues Location:
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  6. Article ; Online: Seeking consent for organ donation: Process evaluation of implementing a new Specialist Requester nursing role.

    Mc Laughlin, Leah / Neukirchinger, Barbara / Monks, Jane / Duncalf, Sue / Noyes, Jane

    Journal of advanced nursing

    2020  Volume 77, Issue 2, Page(s) 845–868

    Abstract: Aim: To explain the differences in organ donation consent outcomes of a new nursing role (Specialist Requesters) derived from the United States (US) compared with the existing nursing role (Specialist Nurses in Organ Donation).: Design: Thirty-month ... ...

    Abstract Aim: To explain the differences in organ donation consent outcomes of a new nursing role (Specialist Requesters) derived from the United States (US) compared with the existing nursing role (Specialist Nurses in Organ Donation).
    Design: Thirty-month observational qualitative process evaluation: Implementation theory-informed analysis.
    Methods: Qualitative content analysis of free text describing challenges, processes and practice from 996 bespoke routinely collected potential organ donor 'approach forms' from two regions: one where there was no difference, and one with an observed difference in consent outcomes.
    Results: Region A consent rate: Specialist Requester 75.8%, Specialist Nurse in Organ Donation71.8%. Region B consent rate: Specialist Requester 71.4%, Specialist Nurse in Organ Donation 82%. Region A Specialist Requesters turned the family position from no or uncertain to support organ donation in 73% of cases, compared with 27.4% in Region B. Two Specialist Requesters in Region A were highly effective. Region B experienced problems with intervention fidelity and implementation.
    Conclusions: The benefits of the Specialist Requester role remain unclear. Positive differences in consent rates achieved by Specialist Requesters in the originator region reduced over time and have yet to be successfully replicated in other regions.
    Impact: The impact of Specialist Requesters on consent outcomes varied across regions and it was not known why. Specialist Requesters in Region A were better at getting family member(s) to support organ donation. In Region B, Specialist Nurse in Organ Donation consent rates were higher and problems with intervention fidelity were identified (recruitment, staffing, less experience). Policy makers need to understand it is not just a matter of waiting for the Specialist Requester intervention to work. Ongoing training and recruiting the right people with the right skills need to be addressed and consistently reviewed.
    MeSH term(s) Decision Making ; Family ; Humans ; Informed Consent ; Tissue Donors ; Tissue and Organ Procurement ; United States
    Language English
    Publishing date 2020-11-10
    Publishing country England
    Document type Journal Article
    ZDB-ID 197634-5
    ISSN 1365-2648 ; 0309-2402
    ISSN (online) 1365-2648
    ISSN 0309-2402
    DOI 10.1111/jan.14601
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