PHARMACOGENETIC TESTING FOR DEPRESSION: A QUALITATIVE STUDY OF THE PERCEPTIONS OF HEALTHCARE PROVIDERS, POLICY MAKERS AND PEOPLE WITH LIVED EXPERIENCE

This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and policy for older LGBT+ people. It is written by a multidisciplinary group of Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute in Trinity College Dublin (TCD), from a variety of disciplines (health economics, human geography, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of ‘Diversity and Brain Health’ through the lens of non-normative gender identities and sexualities. Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the workshop, Roe and Walrath wrote an opinion editorial, published in the Irish Times during the 2019 PRIDE festival, and were subsequently invited by HRB Open Access to provide a more detailed expansion of that work. In this Open Letter we describe the theme of ‘diversity and brain health’ and some of the lessons we learned from listening to the lived experience of older LGBT+ people in Ireland today. We illustrate why it’s important to understand the lived experience of older LGBT+ people and highlight the failure of the State to evaluate the experience of LGBT+ people in policy implementation. We call on researchers, clinicians, service planners and policy makers, to recognize and address diversity as an important way to address health inequities in Ireland.

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Factors affecting the acceptability of isoniazid preventive therapy among healthcare providers in selected HIV clinics in Nairobi County, Kenya: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2018-024286 ◽

2018 ◽

Vol 8 (12) ◽

pp. e024286 ◽

Cited By ~ 3

Author(s):

Elvis Omondi Achach Wambiya ◽

Martin Atela ◽

Ejemai Eboreime ◽

Latifat Ibisomi

Keyword(s):

Qualitative Study ◽

Healthcare Providers ◽

Preventive Therapy ◽

Sub Saharan Africa ◽

Isoniazid Preventive Therapy ◽

Public Healthcare ◽

People Living With Hiv ◽

Policy Makers ◽

Factors Affecting ◽

High Level

ObjectiveDespite being globally recommended as an effective intervention in tuberculosis (TB) prevention among people living with HIV, isoniazid preventive therapy (IPT) implementation remains suboptimal, especially in sub-Saharan Africa. This study explored the factors influencing the acceptability of IPT among healthcare providers in selected HIV clinics in Nairobi County, Kenya, a high HIV/TB burden country.DesignA qualitative study was conducted using in-depth interviews with healthcare providers in selected HIV clinics. All conversations were audio recorded, transcribed verbatim and analysed using a thematic approach.SettingThe study was conducted in the HIV clinics of three purposefully selected public healthcare facilities in Nairobi County, Kenya between February 2017 and April 2017.ParticipantsEighteen purposefully selected healthcare providers (clinicians, nurses, pharmacists and counsellors) working in the HIV clinics participated in the study.ResultsProvider acceptability of IPT was influenced by factors relating to the organisational context, provider training on IPT and their perception on its efficacy, length and clarity of IPT guidelines and standard operation procedures, as well as structural factors (policy, physical and work environment). Inadequate high-level commitment and support for the IPT programme by programme managers and policy-makers were found to be the major barriers to successful IPT implementation in our study context.ConclusionThis study provides insight into the complexity of factors affecting the IPT implementation in Kenya. Ensuring optimal acceptability of IPT among healthcare providers will require an expanded depth of engagement by policy-makers and IPT programme managers with both providers and patients, as well as on-the-job design specific actions to support providers in implementation. Such high-level commitment and support are consequently essential for quality delivery of the intervention.

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Pain self-management experiences in haemophilia patients: a qualitative study

The Journal of Haemophilia Practice ◽

10.17225/jhp00107 ◽

2018 ◽

Vol 5 (1) ◽

pp. 76-82 ◽

Cited By ~ 1

Author(s):

Masoume Rambod ◽

Farkondeh Sharif ◽

Zahra Molazem ◽

Kate Khair

Keyword(s):

Pain Relief ◽

Qualitative Study ◽

Lived Experience ◽

Sense Of Self ◽

Healthcare Providers ◽

Phenomenological Approach ◽

Complementary Therapy ◽

Self Management ◽

Self Awareness ◽

Structured Interviews

Abstract Background: Pain management can prevent long-term burdens in haemophilia patients and improve their quality of life. The present study aimed to describe and interpret pain experiences in haemophilia patients, focusing on pain self-management in their lives. Methods: This was a qualitative study undertaken using a hermeneutic phenomenological approach. The study involved 14 haemophilia patients referred to a haemophilia clinic affiliated to Shiraz University of Medical Sciences in Iran. Data were collected using semi-structured interviews and field notes. Thematic analysis with van Manen’s methodological framework was applied. Data analysis was performed using MAX. QDA qualitative software (2010). Results: Four themes emerged: a sense of self-awareness and recognition of pain and the factors that affect it, the ability to control and self-manage pain, gradually achieving self-efficacy in pain control, and using cognitive and spiritual strategies for pain relief. Conclusions: The study highlighted the essence of the lived experience of pain self-management and generated its linguistic description. By providing complementary therapy interventions, healthcare providers and family members could increase patients’ self-awareness, recognition, ability to self-manage and control pain effectively, and competence in developing cognitive and spiritual strategies for pain relief.

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The Perceived Social Support by Iranian Women with Breast Cancer: A Qualitative Study

10.21203/rs.3.rs-295984/v1 ◽

2021 ◽

Author(s):

Leila Mokhtari ◽

Abdollah Khorami Markani ◽

Hamid Reza Khalkhali ◽

Aram Feizi

Keyword(s):

Breast Cancer ◽

Social Support ◽

Qualitative Study ◽

Lived Experience ◽

Qualitative Content Analysis ◽

Healthcare Providers ◽

Well Being ◽

Medical Sciences ◽

Structured Interviews ◽

The Family

Abstract Background: Social support has an importnat role in improving health outcomes and is considered as one of the crucial aspects of the modern care in cancer patients. Therefore this article aims at discovering and describing the dimensions of social support based on the lived experience of women suffering from breast cancer.Methods: In this qualitative study, 22 women with breast cancer were selected through purposive sampling from 7 hospitals affiliated to Urmia University of Medical Sciences. The data were collected through semi-structured interviews and were analyzed by the Conventional Qualitative Content Analysis and Graneheim’s and Lundman’s (2004) approach, using MAXQDA software, version 10.Results: After completion of the analyzing process, 6 categories were appeared including “creating an empathic atmosphere by family and community”, “creating a safe communication network for the patient”, “adaption to disease”, “giving meaning to life”, “the feeling of satisfaction with the healthcare providers for fulfilling their role”, and “accepting the support and help of family and friends in fighting the disease”. Conclusion: According to the findings, good social support during the illness can result in the spiritual, mental, and physical well-being of the patients and is one of the most effective factors in fighting the disease and feeling of recovery. The findings of this study can be used to develop plans to help the patients to achieve more support from the family, healthcare providers and the community and even providing the required supportive care for this group of women.

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To live and age as who we really are: Perspectives from older LGBT+ people in Ireland

HRB Open Research ◽

10.12688/hrbopenres.12990.2 ◽

2020 ◽

Vol 3 ◽

pp. 6

Author(s):

Lorna Roe ◽

Miriam Galvin ◽

Laura Booi ◽

Lenisa Brandao ◽

Jorge Leon Salas ◽

...

Keyword(s):

Lived Experience ◽

Healthcare Providers ◽

Open Letter ◽

Brain Health ◽

Policy Makers ◽

Trinity College Dublin ◽

Open Research ◽

Multidisciplinary Group ◽

Lgbt People ◽

Global Brain

This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and policy for older LGBT+ people. It is written by a multidisciplinary group of Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute in Trinity College Dublin (TCD), from a variety of disciplines (health economics, human geography, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of ‘Diversity and Brain Health’ through the lens of lesbian, gay, bisexual, transgender/transsexual plus (LGBT+). . Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the workshop, Roe and Walrath wrote an opinion editorial, published in the Irish Times during the 2019 PRIDE festival, and were subsequently invited by HRB Open Research to provide a more detailed expansion of that work. In this Open Letter we describe the theme of ‘diversity and brain health’ and some of the lessons we learned from listening to the lived experience of older LGBT+ people in Ireland today. We illustrate why it’s important to understand the lived experience of older LGBT+ people and highlight the failure of the State to evaluate the experience of LGBT+ people in policy implementation. We call on researchers, clinicians, service planners and policy makers, to recognize and address diversity as an important way to address health inequities in Ireland.

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Exploring Interventions to Improve the Oral Health and Related Health Behaviours of Adults Experiencing Severe and Multiple Disadvantage: Protocol for a Qualitative Study with Stakeholders

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph182211755 ◽

2021 ◽

Vol 18 (22) ◽

pp. 11755

Author(s):

Emma C. Joyes ◽

Laura J. McGowan ◽

Emma A. Adams ◽

Martha Paisi ◽

Martin Burrows ◽

...

Keyword(s):

Substance Use ◽

Oral Health ◽

Qualitative Study ◽

Lived Experience ◽

Public Involvement ◽

Service Providers ◽

Health Behaviours ◽

Policy And Practice ◽

Policy Makers ◽

Policy Dissemination

The number of individuals in England experiencing homelessness, substance use, and involvement with the criminal justice system is increasing. These issues, referred to as severe and multiple disadvantage (SMD), are often interlinked and co-occur. Health inequalities, particularly poor oral health, persist for those facing these inter-related issues and are closely linked with high levels of substance use, smoking, and poor diet. However, evidence for interventions that can improve these health outcomes for those experiencing these issues is limited. This paper outlines the design of a qualitative study which aims to explore the perspectives of stakeholders to understand what interventions can help to support SMD groups with their oral health and related health behaviours (i.e., substance use, smoking, diet). Interviews and focus groups will be undertaken with stakeholders comprising two groups: (1) individuals with experience of SMD, and (2) service providers (staff and volunteers), policy makers, and commissioners who support such individuals. Public involvement and engagement is central to the project. For example, stakeholders and research partners in policy and practice and people with lived experience of SMD will provide input at all stages of this study. Findings from the study will inform an ‘evidence for practice’ briefing outlining recommendations for policy. Dissemination will occur through presentations to a range of practice, policy and academic beneficiaries, and through peer-reviewed publications.

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Key stakeholders’ perspectives and experiences with defining, identifying and displaying gaps in health research: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2020-039932 ◽

2020 ◽

Vol 10 (11) ◽

pp. e039932

Author(s):

Linda Nyanchoka ◽

Catrin Tudur-Smith ◽

Raphaël Porcher ◽

Darko Hren

Keyword(s):

Qualitative Study ◽

Health Research ◽

Healthcare Providers ◽

The Body ◽

Research Gaps ◽

Topic Area ◽

Policy Makers ◽

Key Stakeholders ◽

Research Gap ◽

Depth Interviews

IntroductionMapping the current body of evidence including what is missing helps provide a better understanding of what research is available, ongoing and needed and should be prioritised. Identifying research gaps can inform the design and conduct of health research by providing additional context information about the body of evidence in a given topic area. Despite the commonly used term ‘research gap’ in scientific literature, little is written on how to find a ‘research gap’ in the first place. Moreover, there is no clear methodological guidance to identify and display gaps.ObjectiveThis study aimed to explore how key stakeholders define research gaps and characterise methods/practices used to identify and display gaps in health research to further advance efforts in this area.DesignThis was an exploratory qualitative study using semistructured in-depth interviews. The study sample included the following stakeholder groups: researchers, funders, healthcare providers, patients/public and policy-makers. Interview transcripts were subjected to thematic analysis.ResultsAmong the 20 interviews conducted (20 participants), a variety of research gap definitions were expressed (ie, five main themes, including gaps in information, knowledge/evidence gaps, uncertainties, quality and patient perspective). We identified three main themes for methods used to identify gaps (primary, secondary and both primary and secondary) and finally six main themes for the methods to display gaps (forest plots, diagrams/illustrations, evidence maps, mega maps, 3IE gap maps and info graphics).ConclusionThis study provides insights into issues related to defining research gaps and methods used to identify and display gaps in health research from the perspectives of key stakeholders involved in the process. Findings will be used to inform methodological guidance on identifying research gaps.

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Patient preferences for asthma management: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2020-037491 ◽

2020 ◽

Vol 10 (8) ◽

pp. e037491 ◽

Cited By ~ 2

Author(s):

Christina Baggott ◽

Amy Chan ◽

Sally Hurford ◽

James Fingleton ◽

Richard Beasley ◽

...

Keyword(s):

New Zealand ◽

Qualitative Study ◽

Lived Experience ◽

Health Beliefs ◽

Patient Preferences ◽

Inhaled Corticosteroids ◽

Descriptive Analysis ◽

Healthcare Providers ◽

Asthma Management ◽

The Impact

ObjectivePreference for asthma management and the use of medications is motivated by the interplay between lived experiences of asthma and patients’ attitudes towards medications. Many previous studies have focused on individual aspects of asthma management, such as the use of preventer and reliever inhalers. The aim of this qualitative study was to explore the preferences of patients with mild-moderate asthma for asthma management as a whole and factors that influenced these preferences.DesignA qualitative study employing qualitative descriptive analysis situated within a constructionist epistemology to analyse transcribed audio recordings from focus groups.SettingThree locations within the greater Wellington area in New Zealand.ParticipantsTwenty-seven adults with self-reported doctor’s diagnosis of asthma, taking short-acting beta-agonists alone or inhaled corticosteroids with or without long-acting beta2-agonist, who had used any inhaled asthma medication within the last month.ResultsFour key areas described preferences for asthma management. Preferences for self-management: participants wanted to be in control of their asthma and developed personal strategies to achieve this. Preferences for the specific medications or treatment regimen: participants preferred regimens that were convenient and reliably relieved symptoms. Preferences for inhaler devices: devices that had dose counters and were easy to use and portable were important. Preferences for asthma services: participants wanted easier access to their inhalers and to be empowered by their healthcare providers. Participant preferences within each of these four areas were influenced by the impact asthma had on their life, their health beliefs, emotional consequences of asthma and perceived barriers to asthma management.ConclusionsThis study illustrates the interaction of the lived experience of asthma, factors specific to the individual, and factors relating to asthma treatments in shaping patient preferences for asthma management. This aids our understanding of preferences for asthma management from the patient perspective.Trial registration numberAustralian New Zealand Clinical Trials Registry (ACTRN12619000601134).

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NICU and postpartum nurse perspectives on involving fathers in newborn care: a qualitative study

BMC Nursing ◽

10.1186/s12912-021-00553-y ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Katharine W. Buek ◽

Dagoberto Cortez ◽

Dorothy J. Mandell

Keyword(s):

Qualitative Study ◽

Father Involvement ◽

Perinatal Care ◽

Healthcare Providers ◽

Newborn Care ◽

Small Scale ◽

Structured Interviews ◽

Provider Attitudes ◽

Attitudes And Practices ◽

Sense Of Efficacy

Abstract Background Perinatal care nurses are well positioned to provide the education and support new fathers need to navigate the transition to fatherhood and to encourage positive father involvement from the earliest hours of a child’s life. To effectively serve fathers in perinatal settings, it is important to understand the attitudes, beliefs, and behaviors of healthcare providers that may encourage and engage them, or alternatively alienate and discourage them. Methods This qualitative study involved structured interviews with ten NICU and postpartum nurses from hospitals in two large Texas cities. The interview protocol was designed to elicit descriptive information about nurses’ attitudes and beliefs, sense of efficacy and intention for working with fathers, as well as their father-directed behaviors. Nurses were recruited for the study using a purposive sampling approach. Interviews were conducted by telephone and lasted approximately 25 to 35 min. Data were analyzed using a qualitative descriptive approach. Results Overall, study participants held very positive subjective attitudes toward fathers and father involvement. Nevertheless, many of the nurses signaled normative beliefs based on race/ethnicity, gender, and culture that may moderate their intention to engage with fathers. Participants also indicated that their education as well as the culture of perinatal healthcare are focused almost entirely on the mother-baby dyad. In line with this focus on mothers, participants comments reflected a normative belief that fathers are secondary caregivers to their newborns, there to help when the mother is unavailable. Conclusions Nurse attitudes and practices that place mothers in the role of primary caregiver may be interpreted by fathers as excluding or disregarding them. Further research is needed to validate the results of this small-scale study, and to assess whether and how provider attitudes impact their practices in educating and engaging fathers in newborn care.

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Ten-year trends in epidemiology and outcomes of pediatric kidney replacement therapy in Europe: data from the ESPN/ERA-EDTA Registry

Pediatric Nephrology ◽

10.1007/s00467-021-04928-w ◽

2021 ◽

Author(s):

Marjolein Bonthuis ◽

Enrico Vidal ◽

Anna Bjerre ◽

Özlem Aydoğ ◽

Sergey Baiko ◽

...

Keyword(s):

Replacement Therapy ◽

Cox Regression ◽

Patient Survival ◽

Healthcare Providers ◽

Resource Planning ◽

Policy Makers ◽

Age Related ◽

Kidney Replacement Therapy ◽

Over Time ◽

Related Population

Abstract Background For 10 consecutive years, the ESPN/ERA-EDTA Registry has included data on children with stage 5 chronic kidney disease (CKD 5) receiving kidney replacement therapy (KRT) in Europe. We examined trends in incidence and prevalence of KRT and patient survival. Methods We included all children aged <15 years starting KRT 2007–2016 in 22 European countries participating in the ESPN/ERA-EDTA Registry since 2007. General population statistics were derived from Eurostat. Incidence and prevalence were expressed per million age-related population (pmarp) and time trends studied with JoinPoint regression. We analyzed survival trends using Cox regression. Results Incidence of children commencing KRT <15 years remained stable over the study period, varying between 5.5 and 6.6 pmarp. Incidence by treatment modality was unchanged over time: 2.0 for hemodialysis (HD) and peritoneal dialysis (PD) and 1.0 for transplantation. Prevalence increased in all age categories and overall rose 2% annually from 26.4 pmarp in 2007 to 32.1 pmarp in 2016. Kidney transplantation prevalence increased 5.1% annually 2007–2009, followed by 1.5% increase/year until 2016. Prevalence of PD steadily increased 1.4% per year over the entire period, and HD prevalence started increasing 6.1% per year from 2011 onwards. Five-year unadjusted patient survival on KRT was around 94% and similar for those initiating KRT 2007–2009 or 2010–2012 (adjusted HR: 0.98, 95% CI:0.71–1.35). Conclusions We found a stable incidence and increasing prevalence of European children on KRT 2007–2016. Five-year patient survival was good and was unchanged over time. These data can inform patients and healthcare providers and aid health policy makers on future resource planning of pediatric KRT in Europe.

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