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Participant views and experiences of participating in HIV research in sub-Saharan Africa: a qualitative systematic review.
Human immunodeficiency virus clinical trials are increasingly being conducted in sub-Saharan Africa. There is a tension between the pressure to increase levels of research participation and the need to ensure informed consent and protection of participants' rights. Researchers need to be aware of the particular ethical issues that underpin Human immunodeficiency virus research conduct in low income settings. This necessitates hearing from those who have participated in research and who have direct experience of the research process.
This review aimed to synthesize and present the best available evidence in relation to Human immunodeficiency virus research participation in sub-Saharan Africa, based on the views and experiences of research participants.
The review included studies whose participants were current or former adult Human immunodeficiency virus research participants from sub-Saharan African countries.
Views, experiences, attitudes, understandings, perceptions and perspectives of Human immunodeficiency virus research participants in sub-Saharan Africa. Types of studies: This review considered studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, ethnography, grounded theory, action research and feminist research.
A three-step search strategy was utilized. Seven databases (CINAHL, Ovid MEDLINE (R) 1946, ASSIA, PsychInfo, Web of Science, EMBASE, and African Index Medicus) were searched with no limitation to years of publication, followed by hand searching of reference lists. Only studies published in the English language were considered.
Methodological quality was assessed using the Qualitative Assessment and Review Instrument developed by the Joanna Briggs Institute.
Qualitative findings were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument.
Qualitative research findings were pooled using a pragmatic meta-aggregative approach and the Joanna Briggs Institute Qualitative Assessment and Review Instrument software.
Twenty-one studies were included in the review. One hundred and thirty-six findings were extracted from included studies and clustered into 14 categories based on similarities in meaning. These were further synthesized into five synthesized findings, set out below; i) Individuals are motivated to participate in Human immunodeficiency virus research due to a range of perceived benefits for themselves and others. ii) Participation in research can be associated with considerable fear and uncertainty. iii) Participation in Human immunodeficiency virus research is strongly influenced by social relationships (e.g. support or disapproval of family or friends) and social-economic and domestic factors (such as time or finances). iv). The meanings of research programs and processes are constructed within a context of existing lay beliefs, experiences and social relations associated with Human immunodeficiency virus and biomedical interventions in general. This means that local people may understand research and its processes very differently to health professionals. v) Participants' research experiences and their continued participation in Human immunodeficiency virus research are influenced by the research clinic context and the nature of their interactions with research staff.
Individuals are generally willing to participate in Human immunodeficiency virus research. However their understanding of the process can be limited, and the experience may may cause anxiety or have negative consequences. Furthermore longer-term participation may become problematic due to socio-economic pressure or social commitments.
The review suggests a need to develop better ways to explain research processes and to support participants, when/if they encounter problems. There is also a need to engage better with communities in order to educate them about HIV research programs.
All the included studies focused on experiences around research enrolment and participation (retention); however there is a complete evidence gap on experiences of trial closure.
Nalubega S
,Evans C
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Health professionals' experience of teamwork education in acute hospital settings: a systematic review of qualitative literature.
Teamwork is seen as an important element of patient care in acute hospital settings. The complexity of the journey of care for patients highlights the need for health professionals to collaborate and communicate clearly with each other. Health organizations in western countries are committed to improving patient safety through education of staff and teamwork education programs have been integral to this focus. There are no current systematic reviews of the experience of health professionals who participate in teamwork education in acute hospital settings.
The objective of this systematic review was to search for the best available evidence on the experiences of health professionals who participate in teamwork education in acute hospital settings.
This review considered studies reporting on experiences of registered health professionals who work in acute hospitals. This included medical, nursing and midwifery and allied health professionals.
The focus of the meta-synthesis was the experiences and reflections of health professionals who were involved in teamwork education in acute hospital settings.
The geographical context for this review was acute hospitals in rural or metropolitan settings in Australia and overseas countries. The review focused on the experiences of health professionals who work in acute hospitals and participated in teamwork education programs.
This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.In the absence of research studies, other text such as opinion papers, discussion papers and reports were considered. Studies published in English and from 1990 to 2013 were included in this review.
The literature search for relevant papers occurred between 13 September and 26 October 2013. A three-step search strategy was utilized in this review. The databases searched were PubMed, CINAHL, Embase and Scopus.
The standardized critical appraisal tool the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to assess the methodological quality of included papers.
Data that included statements and text of interest was extracted from papers included in the study using the standardized data extraction tool from JBI-QARI.
Qualitative research findings were pooled using JBI-QARI. This involved the aggregation and synthesis of findings to generate a set of statements that represented that aggregation.
In total, 116 papers were selected for analysis of full text, 11 papers were selected for critical appraisal and seven papers were selected for data synthesis. This resulted in 44 findings. The findings were assigned to 16 categories based on identified similarities across the papers. The categories were integrated into six meta-syntheses. These were: Meta-synthesis One: It is important to recognize that organizational culture and expectations have an impact on health professionals' participation and experience of teamwork education. Meta-synthesis Two: Understanding how successful teams function is central to the development of teamwork education programs and the experience of participants. Meta-synthesis Three: A health professional's experience of teamwork education will be influenced by his/her starting point of learning. Meta-synthesis Four: Participants highly value teamwork education programs that are implemented by facilitators who create practical authentic learning opportunities and foster reflection and debriefing for participants. Meta-synthesis Five: High fidelity simulation used with specific communication strategies provides a powerful learning opportunity for health professions to practice teamwork skills. Meta-synthesis Six: Participants have increased confidence and are motivated to apply their newly learnt teamwork skills into their daily practice.
The review identified qualitative evidence that can guide organizations and education facilitators in the development and implementation of teamwork education in acute hospital settings. Although the quality of the specific teamwork education programs was an important factor, there were a number of issues that also impacted on the experiences of health professionals who participated in teamwork education programs. These included the context that the program was delivered in, the diversity of health care teams, starting points of individual learners, the type of tools utilized in education programs, the levels of confidence and motivation of learners post training and the opportunity to transfer into practice new learning.
Drawing from the synthesized findings of the review, recommendations for practice have been devised in order to guide the development and implementation of teamwork education in acute hospital settings and to improve the experience of participating health professionals. The Joanna Briggs Institute utilizes Grades of Recommendation to rate a health management strategy in terms of its desirable effects, evidence of adequate quality supporting its use, benefits of use, and the inclusion of patient experience, values and preferences. A strong recommendation has a Grade A and a weak recommendation has a Grade B. The FAME (Feasibility, Appropriateness, Meaningfulness and Effectiveness) scale was used to inform the strength of the following six recommendations for practice from the review: RECOMMENDATION ONE: All members of a team should be encouraged by their organization/managers to participate in teamwork education programs in order to foster a positive culture of learning and teamwork within the team.JBI Recommendation: Grade A. This recommendation is appropriate and applicable to all health professionals in acute hospital settings, is associated with positive experiences for participants of teamwork education programs and has a beneficial effect on participants.
Facilitators of teamwork education programs should understand how successful teams function and consider these factors when planning or delivering training.JBI Recommendation: Grade A. This recommendation is associated with positive experiences for participants and creates a beneficial effect to the quality of a teamwork education program.
Facilitators of teamwork education programs need to explore participant learning needs and their prior experiences of working in teams before implementing teamwork education programs.JBI Recommendation: Grade A. This recommendation creates a beneficial effect to the participants of teamwork education programs and to the quality of education provided by facilitators.
Facilitators of teamwork education programs should provide learning opportunities that are practical, authentic to participants and foster constructive debriefing and reflection.JBI Recommendation: Grade A. This recommendation is applicable to all health professionals and circumstances in which teamwork education occurs, is associated with positive experiences and has a beneficial effect on participants.
High fidelity simulation should be considered in acute hospitals for the training of teamwork skills in addition to clinical skills. Scenarios provide realistic opportunities for participants to practice communication strategies that enhance teamwork.JBI Recommendation: Grade A. This recommendation is applicable to all health professionals and circumstances in which teamwork education occurs and has a beneficial effect on participants of education programs.
Team managers should harness the new confidence and motivation of staff around teamwork skills following participation in teamwork education programs and ensure that there are opportunities in the workplace to apply new skills and knowledge into daily practice.JBI Recommendation: Grade A. This recommendation is applicable to all health professionals and circumstances in which teamwork education occurs, is adaptable to a variety of circumstances and has a beneficial effect on health professional's daily practice of teamwork skills.
In order to strengthen the evidence base about teamwork education in acute hospital settings there needs to be quantitative and qualitative research into:How organizations that have successfully embedded a culture of collaboration and safety in health teams have planned, implemented and evaluated teamwork education programs in acute hospital settings?What are the characteristics of teams that have led to successful participation in teamwork education and positive outcomes for team performance?What are the experiences, training and support provided to education facilitators who successfully implement teamwork education programs in acute hospitals?
Eddy K
,Jordan Z
,Stephenson M
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The views and experiences of nurses and midwives in the provision and management of provider-initiated HIV testing and counseling: a systematic review of qualitative evidence.
Global progress towards HIV prevention and care is contingent upon increasing the number of those aware of their status through HIV testing. Provider-initiated HIV testing and counseling is recommended globally as a strategy to enhance uptake of HIV testing and is primarily conducted by nurses and midwives. Research shows that provider-initiated HIV testing and counseling implementation is sub-optimal. The reasons for this are unclear.
The review aimed to explore nurses' and midwives' views and experiences of the provision and management of provider-initiated HIV testing and counseling.
All cadres of nurses and midwives were considered, including those who undertake routine HIV testing as part of a diverse role and those who are specifically trained as HIV counselors. Types of phenomenon of interest: The review sought to understand the views and experiences of the provision and management of provider-initiated HIV testing and counseling (including perceptions, opinions, beliefs, practices and strategies related to HIV testing and its implementation in practice).
The review included only provider-initiated HIV testing and counseling. It excluded all other models of HIV testing. The review included all countries and all healthcare settings. Types of studies: This review considered all forms of qualitative study design and methodology. Qualitative elements of a mixed method study were included if they were presented separately within the publication.
A three-step search strategy was utilized. Eight databases were searched for papers published from 1996 to October 2014, followed by hand searching of reference lists. Only studies published in the English language were considered.
Methodological quality was assessed using the Qualitative Assessment and Review Instrument developed by the Joanna Briggs Institute.
Qualitative findings were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument.
Qualitative research findings were pooled using a pragmatic meta-aggregative approach and the Joanna Briggs Institute Qualitative Assessment and Review Instrument software.
This review included 21 publications from 18 research studies, representing a wide range of countries and healthcare settings. There were 245 findings which were aggregated into 12 categories and five synthesized findings. 1. Nurses/midwives are supportive of provider-initiated HIV testing and counseling if it is perceived to enhance patient care and to align with perceived professional roles. 2. Nurses'/midwives' ability to perform provider-initiated HIV testing and counseling well requires an appropriate infrastructure and adequate human and material resources. 3. At the organizational level, nurses'/midwives' engagement with provider-initiated HIV testing and counseling is facilitated by an inclusive management structure, alongside the provision of ongoing training and clinical supervision. Provider-initiated HIV testing and counseling is hindered by difficulties in fitting it into existing workloads and routines. 4. Nurses/midwives perceive that good quality care in provider-initiated HIV testing and counseling involves finding a balance between public health needs and individual patient needs. Good care requires time and the ability to apply a patient centred approach. 5. The emotional work involved in provider-initiated HIV testing and counseling can be stressful. Nurses/Midwives may require support to deal with complex moral and ethical issues.
This review shows that provider-initiated HIV testing and counseling is supported by nurses/midwives who strive to implement it according to principles of good care and a patient centered approach. Nurses/midwives face multiple operational, infra-structural, resource and ethical challenges in the implementation of provider-initiated HIV testing and counseling.
The implementation process for provider-initiated HIV testing and counseling would benefit from using a quality improvement framework. Nurses/midwives undertaking provider-initiated HIV testing and counseling require management support, ongoing training and adequate infrastructure/resources. Additional guidance is required on legal/ethical issues in testing of children and in third party disclosure.
Operational research is required to determine an optimal skill mix and optimal methods of integrating provider-initiated HIV testing and counseling into existing work routines.
Evans C
,Nalubega S
,McLuskey J
,Darlington N
,Croston M
,Bath-Hextall F
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Women's experience of menopause: a systematic review of qualitative evidence.
Evidence shows than an estimated one billion women have experienced menopause worldwide. The experience of menopause is influenced by beliefs and values prevalent in the sociocultural setting, the background of the women, and the ways in which the women approach changes in this phase of life. Independently of the circumstances involved, women experiencing menopause need to have their care needs and corresponding support identified based on their personal and contextual perspectives. Although it is essential to provide appropriate support to women experiencing menopause, no systematic reviews have so far been conducted that focus on menopause experienced by women worldwide.
The objective of this review is to identify the best available evidence related to how women experience menopause worldwide.
This review considered studies that included menopausal women aged between 40 and 65 years, who have lived the transition from reproductive years through menopause and beyond. This review included only studies whose participants have lived the experience of natural menopause. Women who have had induced menopause, or with premature menopause were excluded from this review. TYPES OF INTERVENTION(S)/PHENOMENA OF INTEREST: This review considered studies that investigate women's experiences of natural menopause under the scope of different social and cultural settings. TYPES OF STUDIES: This review considered studies that have a descriptive and interpretive approach, conducted using qualitative methodology. Qualitative studies that focus on program evaluation were excluded from this review. Qualitative data including, but not limited to, study designs such as phenomenology, grounded theory, ethnography, action research and feminist research were considered for inclusion in this review. TYPES OF OUTCOMES: This review considered studies that include the following outcome measures: all aspects related both directly and indirectly to the experience of menopause, as concretely lived by women and according to their own point of view.
The search strategy aimed to find both published and unpublished studies. Studies published in English, French, Portuguese and Spanish were considered for inclusion in this review, without any restriction in terms of year of publication. This decision was made to permit the inclusion of all of research related to women's lived experiences of menopause worldwide since the inception of this type of research. The databases searched included CINAHL, Medline and Pubmed, PsycINFO, Lilacs, Scielo, Scopus, Dissertation Abstracts International and the University of São Paulo Dissertations and Thesis.
Each primary study was assessed by two independent reviewers for methodological quality. The Joanna Briggs Institute Qualitative Appraisal and Review Instrument Data Extraction Form for Interpretive and Critical Research was used to appraise the methodological quality of all papers.
Qualitative data was extracted from papers included in the review using standardized data extraction tools developed by the Joanna Briggs Institute.
Qualitative research findings were synthesized using The Joanna Briggs Institute Qualitative Appraisal and Review Instrument.
From the 24 included studies, 108 findings were extracted. These findings were aggregated into 17 categories, and then into six synthesized findings. The six synthesized findings are: (i) Menopause is a natural event in a woman’s life that is closely associated with psychosocial events of midlife and the aging process; (ii) The physical and emotional changes of menopause strongly affect the women; (iii) The women perceive menopause as a time characterized by gains and losses; (iv) Resilience is improved at the time of menopause and coping strategies are adopted to enhance physical and emotional wellbeing; (v) Health issues, family and marital relations, sociocultural background and meaning attributed to the women’s sex life determine if the sexual experiences during menopause are pleasant or not; and (vi) The women should be prepared and have their needs supported according to their perspectives.
The systematic review shows that menopause is a stage of life experienced in different ways. The experience of menopause is characterized by personal challenges and changes in personal roles within the family and society. Hot flushes and night sweats are the strongest symptoms of those reported by women affected by the changes experienced during menopause. The positive or negative ways in which each woman approaches the changes during menopause are influenced by their personal, family and sociocultural background. Health care providers pay little attention to women´s perceptions regarding menopause. Considering menopause is a time when women feel vulnerable, personal and tailored healthcare according to individual needs, preferences and expectations should be provided. Coping strategies regarding the effects of menopause should be determined in creative and dynamic ways through the identification and consideration of the complex issues involved. These measures are essential to ensuring effective support for menopausal women.
Hoga L
,Rodolpho J
,Gonçalves B
,Quirino B
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The experiences of adults who are on dialysis and waiting for a renal transplant from a deceased donor: a systematic review.
Kidney transplantation has been recognized as the best renal replacement therapy option for people with end stage renal disease. With an estimated 170,000 people waiting for a kidney transplant around the world and a limited supply of donor organs, the waiting time is often prolonged for many years.
The aim of this review was to examine the existing evidence of patients' experiences of living on dialysis and waiting for a renal transplant from a deceased donor.
This review considered studies that included adult patients aged 18 years and over who had been on dialysis (hemodialysis or peritoneal dialysis) for up to 15 years and who were waiting for a renal transplant from a deceased donor. Types of intervention(s)/phenomena of interest: The phenomena of interest were the experiences of adults waiting for a renal transplant from a deceased donor and more specifically, the impact of waiting on their lifestyle and day to day living. Types of studies: This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Types of outcomes: This review considered studies that included the experiences of people who were waiting on dialysis for a kidney transplant from a deceased donor.
The search strategy aimed to find both published and unpublished studies through electronic databases, reference list searches and the World Wide Web. Extensive searches were undertaken of the CINAHL, Embase, Medline and PsychInfo databases of published literature, the Cochrane Database of Systematic Reviews and the Virginia Henderson International Nursing Library, OpenGrey and the New York Academy of Medicine databases of unpublished literature.
Each study was assessed for methodological quality by two independent reviewers using the Joanna Briggs Institute Qualitative Assessment and Review Instrument checklist. Disagreements between the reviewers were resolved through discussion or with a third reviewer.
Qualitative data was extracted from papers included in the review using the standardized data extraction tool from JBI-Qualitative Assessment and Review Instrument.
Qualitative research findings were pooled to generate a set of statements that represented the aggregation and categorizing of these findings on the basis of similarity in meaning. These categories were then subjected to a meta-synthesis in order to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice.
A total of 12 studies were included in the final review. Thirty-seven findings from the 12 studies were extracted and aggregated into 11 categories and then into three synthesized findings. The three synthesized findings were: 1. People who are waiting for a kidney transplant from a deceased donor are affected by the experience of living on dialysis with end stage renal disease and its impact on their physical health and normal activities of living. 2. The experience of waiting for a kidney transplant from a deceased donor impacts a person's psychological wellbeing. 3. People who are waiting for a kidney transplant from a deceased donor place value on relationships and being part of a community. The experience of waiting for a renal transplant from a deceased donor while living on dialysis with end stage renal disease changes a person's relationships.
Synthesized findings of the review conclude that people who are waiting for a kidney transplant from a deceased donor live with the physical effects of a life limiting chronic illness and dialysis therapy. Waiting for a kidney transplant is psychologically challenging. People waiting for a kidney transplant value knowledge, although the information they require to alleviate the uncertainty they feel is not available. The dynamics of relationships with family and friends are affected by the experience of waiting for a kidney transplant. People can feel isolated from others leading a 'normal' life, while new relationships are developed within the medical team and community of dialysis patients.
There is limited evidence from the review to support the development of recommendations for clinical practice. Healthcare workers caring for people who are waiting for a kidney transplant from a deceased donor should be mindful of the physical and lifestyle effects of living on dialysis with end stage renal disease. Wherever possible, information should be provided to alleviate the stress and anxiety related to the uncertainty of waiting. The experience of waiting is stressful and people waiting for a kidney transplant may require support and reassurance. It is important to recognize that there are people within communities who may also benefit from receiving information and encouragement. Significant community members should be included in invitations to appointments and education sessions with the consent of the person being treated.
Future studies should be undertaken exclusively with people waiting for a kidney transplant from a deceased donor. Qualitative research designs such phenomenology and grounded theory could be used to investigate the psychological experience of waiting and the relationship between hope, uncertainty and knowledge. Quantitative studies using validated tools could also be conducted. By producing more evidence relating to this significant specific patient population, interventions to improve the experience of waiting could be developed and trialed.
Burns T
,Fernandez R
,Stephens M
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