ResearchPad - qualitative-studies https://www.researchpad.co Default RSS Feed en-us © 2020 Newgen KnowledgeWorks <![CDATA[The qualitative assessment of optical coherence tomography and the central retinal sensitivity in patients with retinitis pigmentosa]]> https://www.researchpad.co/article/elastic_article_7697 To analyze the relationships between qualitative and quantitative parameters of spectral-domain optical coherence tomography (SD-OCT) and the central retinal sensitivity in patients with retinitis pigmentosa (RP).Materials and methodsNinety-three eyes of 93 patients were finally enrolled, with a median age (quartile) of 58 (24.5) years. We assessed the patients using SD-OCT and the 10–2 program of a Humphry Field Analyzer (HFA). As a qualitative parameter, two graders independently classified the patients’ SD-OCT images into five severity grades (grades 1–5) based on the severity of damage to the photoreceptor inner and outer segments (IS/OS) layer. As quantitative parameters, we measured the IS-ellipsoid zone (IS-EZ) width, IS/OS thickness, outer nuclear layer (ONL) thickness, central macular thickness (CMT, 1 and 3 mm) and macular cube (6 × 6 mm) volume and thickness. The central retinal sensitivity was defined by the best-corrected visual acuity (BCVA; logMAR), average sensitivities of the central 4 (foveal sensitivity [FS]) and 12 (macular sensitivity [MS]) points of the HFA 10–2 program and the mean deviation (MD) of the 10–2 program. Spearman’s correlation was used to assess the association between both qualitative and quantitative parameters and variables of the central retinal sensitivity. In addition, we performed a multiple regression analysis using these parameters to identify the parameters most strongly influencing the central retinal sensitivity.ResultsThe IS/OS severity grade was significantly correlated with the BCVA (ρ = 0.741, P < 0.001), FS (ρ = −0.844, P < 0.001), MS (ρ = −0.820, P < 0.001) and MD (ρ = −0.681, P < 0.001) and showed stronger correlations to them than any other quantitative parameters including the IS-EZ width, IS/OS thickness, ONL thickness, CMTs and macular cube volume/thickness. Furthermore, a step-wise multiple regression analysis indicated that the IS/OS severity grade was more strongly associated with the BCVA (β = 0.659, P < 0.001), FS (β = −0.820, P < 0.001), MS (β = −0.820, P < 0.001) and MD (β = −0.674, P < 0.001) than any other quantitative parameters. The intraclass correlation coefficient between two graders indicated substantial correlation (κ = 0.70).DiscussionThe qualitative grading of OCT based on the severity of the IS/OS layer was simple and strongly correlated with the central retinal sensitivity in patients with RP. It may be useful to assess the central visual function in patients with RP, although there is some variation in severity within the same severity grade. ]]> <![CDATA[Deep learning assessment of breast terminal duct lobular unit involution: Towards automated prediction of breast cancer risk]]> https://www.researchpad.co/article/N8ae86a5e-90c1-41b1-ba31-58a5a939e3bc

Terminal duct lobular unit (TDLU) involution is the regression of milk-producing structures in the breast. Women with less TDLU involution are more likely to develop breast cancer. A major bottleneck in studying TDLU involution in large cohort studies is the need for labor-intensive manual assessment of TDLUs. We developed a computational pathology solution to automatically capture TDLU involution measures. Whole slide images (WSIs) of benign breast biopsies were obtained from the Nurses’ Health Study. A set of 92 WSIs was annotated for acini, TDLUs and adipose tissue to train deep convolutional neural network (CNN) models for detection of acini, and segmentation of TDLUs and adipose tissue. These networks were integrated into a single computational method to capture TDLU involution measures including number of TDLUs per tissue area, median TDLU span and median number of acini per TDLU. We validated our method on 40 additional WSIs by comparing with manually acquired measures. Our CNN models detected acini with an F1 score of 0.73±0.07, and segmented TDLUs and adipose tissue with Dice scores of 0.84±0.13 and 0.87±0.04, respectively. The inter-observer ICC scores for manual assessments on 40 WSIs of number of TDLUs per tissue area, median TDLU span, and median acini count per TDLU were 0.71, 0.81 and 0.73, respectively. Intra-observer reliability was evaluated on 10/40 WSIs with ICC scores of >0.8. Inter-observer ICC scores between automated results and the mean of the two observers were: 0.80 for number of TDLUs per tissue area, 0.57 for median TDLU span, and 0.80 for median acini count per TDLU. TDLU involution measures evaluated by manual and automated assessment were inversely associated with age and menopausal status. We developed a computational pathology method to measure TDLU involution. This technology eliminates the labor-intensiveness and subjectivity of manual TDLU assessment, and can be applied to future breast cancer risk studies.

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<![CDATA[Matching response to need: What makes social networks fit for providing bereavement support?]]> https://www.researchpad.co/article/5c8accc6d5eed0c48498ff77

The objectives of this study were to explore the goodness of fit between the bereaved peoples’ needs and the support offered by their social networks; to ascertain whether this support was experienced as helpful or unhelpful by bereaved people; and to explore both the types of social networks that offer effective support and the characteristics of the communities that encourage and nurture such networks. This study was based on qualitative interviews from twenty bereaved people, in Western Australia, interviewed in 2013. A framework analysis of these interviews was undertaken using a deductive approach based on the goodness of fit framework. Much of this support is provided informally in community settings by a range of people already involved in the everyday lives of those recently bereaved; and that support can be helpful or unhelpful depending on its amount, timing, function and structure. Improving the fit between the bereaved person’s needs and the support offered may thus involve identifying and enhancing the caring capacity of existing networks. An important strategy for achieving this is to train community members in mapping and developing these naturally occurring networks. Some such networks will include relationships of long standing, others may be circles of care formed during a period of caring. Peer support bereavement networks develop from these existing networks and may also recruit new members who were not part of the caring circle. The findings endorse social models of bereavement care that fit within a public health approach rather than relying solely on professional care. As exemplified by Compassionate Communities policies and practices, establishing collaboration between community networks and professional services is vital for effective and sustainable bereavement care.

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<![CDATA[Preadolescent children’s perception of power imbalance in bullying: A thematic analysis]]> https://www.researchpad.co/article/5c8c194ad5eed0c484b4d34b

Bullying in schools is associated with an extensive public health burden. Bullying is intentional and goal oriented aggressive behavior in which the perpetrator exploits an imbalance of power to repeatedly dominate the victim. To differentiate bullying from aggressive behavior, assessment must include a valid measure of power imbalance as perceived by the victim. And yet, to date, there remains no agreement as to how to most accurately measure power imbalance among preadolescent children. This qualitative study explored children’s (age 9 to 11) understanding of power imbalance through thematic analysis of focus group discussions. Subthemes that emerged as influencing power imbalance include: age of victim, peer valued characteristics, and group membership and position. Subthemes of empathy and peer valued characteristics emerged as protecting against the negative impact of power imbalance.

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<![CDATA[“Even if she’s really sick at home, she will pretend that everything is fine.”: Delays in seeking care and treatment for advanced HIV disease in Kinshasa, Democratic Republic of Congo]]> https://www.researchpad.co/article/5c6dc9efd5eed0c48452a55d

Introduction

HIV prevalence in the Democratic Republic of Congo (DRC) is estimated to be 1.2%, and access to HIV testing and treatment remains low across the country. Despite advances in treatment, HIV continues to be one of the main reasons for hospitalisation and death in low- and middle-income countries, including DRC, but the reasons why people delay seeking health-care when they are extremely sick remain little understood. People in Kinshasa, DRC, continue to present to health-care facilities in an advanced stage of HIV when they are close to death and needing intensive treatment.

Methods

This qualitative study was conducted in one health-care facility in Kinshasa. A total of 24 in-depth interviews with purposively selected health-care workers, patients and care-givers were conducted. Patients were currently or previously hospitalised with advanced HIV, defined as CD4 count <200 cells/μl. Patients included those who had previously started antiretroviral treatment (ART), and those who had not. Participant observation was also carried out. Interviews were audio-recorded, translated from French and Lingala into English, transcribed, coded and thematically analysed using NVivo.

Results

The main reasons for delaying access to health-care were stigmatisation, religious beliefs and limited economic resources. Stigmatisation meant that people feared disclosing their HIV status and thus did not receive support from their families. Religious leaders were reported to have encouraged people not to take ART. Patients delayed seeking treatment as they could not afford it, and health-care workers believed that staff at other facilities in Kinshasa were delaying HIV diagnoses for economic benefit.

Conclusions

Delays in accessing care and treatment linked to stigma, religious beliefs and economic factors contribute to explaining the persistence of advanced HIV within this context. Access to free HIV-testing, ART and treatment of opportunistic infections; counselling; training of health-care workers; support for care-givers and stigma reduction strategies are urgently needed to prevent unnecessary deaths.

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<![CDATA[Development of a psycho-social intervention for reducing psychological distress among parents of children with intellectual disabilities in Malawi]]> https://www.researchpad.co/article/5c6b2636d5eed0c4842895a3

Background

The burden of intellectual disabilities in low and middle income countries (LMIC) is high and is associated with parental psychological distress. There are few services for children and parents in most developing countries and few interventions have been created that target the psychological issues among parents of such children. This study aimed to develop a contextualized intervention to provide psychological support for parents of children with intellectual disabilities in an African setting.

Methods

Six steps were adopted from the Medical Research Council framework for designing complex interventions. This include: literature review of similar interventions and models, qualitative studies to gain insights of lived experiences of parents of such children, a consensus process with an expert panel of professionals working with children with disabilities and piloting and pre-testing the draft intervention for its acceptability and practicability in this settings.

Results

21 intervention modules were found from a systematic search of the literature which were listed for possible use in our intervention along with four themes from our qualitative studies. An expert panel formed consensus on the eight most pertinent and relevant modules for our setting. This formed the intervention; “Titukulane.” This intervention was piloted and found to have high acceptability and practicability when contextualized in the field.

Conclusion

The use of a systematic framework for designing a complex intervention for supporting the mental health of parents of children with disabilities enables good acceptability and practicability for future use in low resource settings.

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<![CDATA[Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people]]> https://www.researchpad.co/article/5c648ccbd5eed0c484c817c7

Background

One quarter of the global population is of menstruating age, yet menstruation is shrouded in discrimination and taboos. Disability also carries stigma, so disabled people may face layers of discrimination when they are menstruating. The objective of the review is to assess the menstrual hygiene requirements of disabled people, the barriers they face, and the available interventions to help them manage their menstruation hygienically and with dignity.

Methods

Eligible studies, gathered across all countries, were identified by conducting searches across four databases (MEDLINE, PubMed, EMBASE, Global Health) in May 2017, with alerts set on each database to highlight new titles added until April 2018. Eligible studies incorporated analyses relevant to menstruating disabled people and/or how their carers provide support during their menstrual cycle.

Results

The 22 studies included were published since 1976; the majority after 2010 (n = 12; 55%). One study was a quasi-experiment; all others were observational. Most studies (n = 15; 68%) were from high income countries and most (n = 17; 77%) focused on people with intellectual impairments, so the review findings focus on this group and their carers. Outcomes investigated include choice and preference of menstrual product, ability to manage menstrual hygiene and coping strategies applied. Barriers faced included a lack of standardised guidance for professional carers; a lack of menstruation training, information and support provided to people with intellectual impairments and their carers; a lack of understanding of severity of symptoms experienced by people with intellectual impairments, the high cost of menstrual products and lack of appropriate options for people with physical impairments. Few interventions were found, and strategies for menstrual hygiene management applied by carers of persons with intellectual impairments include limiting the disabled person’s movements when menstruating and suppressing their menstruation.

Conclusions

Little evidence was identified on the requirements of disabled people and their carers in managing their menstruation, and only one intervention, but a range of barriers were identified. This gap in evidence is important, as the consequences of failing to meet menstrual hygiene needs of disabled people includes shame, social isolation, and even sterilisation.

Systematic review registration

PROSPERO CRD42018095497.

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<![CDATA[Experimental study on bed pressure around geotextile mattress with sloping plate]]> https://www.researchpad.co/article/5c57e6eed5eed0c484ef441b

A geotextile mattress with sloping curtain is a newly proposed countermeasure against river and estuarine scour. In previous laboratory experiments, a geotextile mattress with sloping curtain was capable of protecting the bed downstream from scour and stimulating sediment deposition on both sides. However, the seepage scour under its geotextile mattress is inadequately researched at present. In this study, the Geotextile Mattress with Sloping Plate (GMSP) is proposed based on the simplification of the geotextile mattress with sloping curtain with the construction feasibility considered. A series of experiments was conducted to investigate the pressure distribution around the GMSP and the averaged seepage hydraulic gradient beneath its mattress. The results indicate remarkable pressure difference on two sides of the GMSP. The minimum bed pressure appears about 1.3 times the plate height downstream to the GMSP. The averaged seepage hydraulic gradient beneath the mattress increases with the sloping angle increasing from 35° to 60° in general. The averaged hydraulic gradient also ascends as the relative plate height increases, but reduces as the opening ratio increases at opening ratios greater than 0.143. The safety boundary for the averaged hydraulic gradient under the geotextile mattress of the GMSP could get much smaller than the critical hydraulic gradient of piping and can easily be overwhelmed. This phenomenon can mainly be attributed to the discontinuous contact between the mattress and the seabed. A suggestion for the parametric design of the GMSP is to extend the width of the mattress to reduce the risk of seepage failure.

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<![CDATA[Factors predictive of successful retention in care among HIV-infected men in a universal test-and-treat setting in Uganda and Kenya: A mixed methods analysis]]> https://www.researchpad.co/article/5c5217f9d5eed0c484795d4b

Background

Previous research indicates clinical outcomes among HIV-infected men in sub-Saharan Africa are sub-optimal. The SEARCH test and treat trial (NCT01864603) intervention included antiretroviral care delivery designed to address known barriers to HIV-care among men by decreasing clinic visit frequency and providing flexible, patient-centered care with retention support. We sought to understand facilitators and barriers to retention in care in this universal treatment setting through quantitative and qualitative data analysis.

Methods

We used a convergent mixed methods study design to evaluate retention in HIV care among adults (age > = 15) during the first year of the SEARCH (NCT01864603) test and treat trial. Cox proportional hazards regression was used to evaluate predictors of retention in care. Longitudinal qualitative data from n = 190 in-depth interviews with HIV-positive individuals and health care providers were analyzed to identify facilitators and barriers to HIV care engagement.

Results

There were 1,863 men and 3,820 women who linked to care following baseline testing. Retention in care was 89.7% (95% CI 87.0–91.8%) among men and 89.0% (86.8–90.9%) among women at one year. In both men and women older age was associated with higher rates of retention in care at one year. Additionally, among men higher CD4+ at ART initiation and decreased time between testing and ART initiation was associated with higher rates of retention. Maintaining physical health, a patient-centered treatment environment, supportive partnerships, few negative consequences to disclosure, and the ability to seek care in facilities outside of their community of residence were found to promote retention in care.

Conclusions

Features of the ART delivery system in the SEARCH intervention and social and structural advantages emerged as facilitators to retention in HIV care among men. Messaging around the health benefits of early ART start, decreasing logistical barriers to HIV care, support of flexible treatment environments, and accelerated linkage to care, are important to men’s success in ART treatment programs. Men already benefit from increased social support following disclosure of their HIV-status. Future efforts to shift gender norms towards greater equity are a potential strategy to support high levels of engagement in care for both men and women.

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<![CDATA[Methodologic approach to sampling and field-based data collection for a large-scale in-depth interview study: The Social Position and Family Formation (SPAFF) project]]> https://www.researchpad.co/article/5c478c74d5eed0c484bd26a6

Over the past several decades there have been dramatic shifts in demographic patterns pertaining to family formation, with declining and delayed marriage and childbearing, and increased cohabitation in the United States and other Western industrialized nations. These trends in family demography have been predominantly studied using large-scale datasets, which have identified total population and subgroup trends over time, including differences by age, gender, racial/ethnic, economic, educational, religious, and other characteristics. However, there is limited knowledge and understanding of how individuals across different levels of social position, as well as other important characteristics, make decisions around forming families. This lack of qualitative data on contemporary attitudes regarding family formation has hampered our ability to more completely understand the factors driving behaviors pertaining to the large-scale (ie, international) shifts in demographic trends. The Social Position and Family Formation (SPAFF) project is an in-depth interview study that used quantitative data to guide recruitment of a large sample for qualitative interview data collection on factors influencing different aspects of family formation among heterosexual females and males (18–35 years) in the context of individuals’ social position. This methodological paper describes the use of a ‘quantitatively-informed’ purposive sampling approach in a large metropolitan area to collect qualitative data (through in-depth interviews) from a large sample (n = 200), utilizing web-based tools for successful community-based recruitment and project management.

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<![CDATA[Experiences, needs, and perceptions of paternal involvement during the first year after their infants’ birth: A meta-synthesis]]> https://www.researchpad.co/article/5c3d00ffd5eed0c4840376b1

Objectives

Fatherhood has evolved in recent decades from ‘a moral teacher’ to ‘an involved father’. However, fatherhood experiences have not been examined in detail. This meta-synthesis aimed to examine fathers’ experiences, needs, and perceptions of their involvement with their infants during the first 12 months of birth.

Method

Six electronic databases were systematically searched: PubMed, CINAHL, Embase, Scopus, PsycINFO, ProQuest (grey literature). The search resulted in 13 studies that met the inclusion criteria. Quality appraisal was conducted using the Critical Appraisal Skills Programme Checklist. All 13 studies met the appraisal criteria and were included in the meta-synthesis. The findings of the 13 studies were synthesized using the steps of Sandelowski and Barroso in conducting meta-synthesis.

Results

The 13 included studies comprised studies conducted in the West, Africa, and Asia. Fatherhood experiences differed according to different sociocultural contexts. Three themes were identified: (1) trajectory of the father-infant relationship, (2) reinforcements and hindrances to involvement, and (3) change from self-oriented to family-oriented behavior. Changes in a father’s relationship with his infant were influenced by relationships with his spouse and family members after the birth of the infant. Reinforcements, hindrances, and needs to fathers’ involvement were identified. Fathering responsibility and parenting satisfaction that developed overtime influenced a father’s behavior, changing from self-oriented to family-oriented.

Significance

This is the first meta-synthesis that examined fathers’ experiences, needs, and perceptions of their involvement with their infants during the first 12 months of birth. Multiple factors were found to influence the socially-defined fathering ideology. Cultural practices of fatherhood and fathers’ own perceptions shaped their actual fathering behaviors. The findings of this study may guide healthcare professionals as frontline personnel to understand fathers’ needs and experiences in order to promote fathers’ involvement in the early days after their infants’ birth.

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<![CDATA[Why do psychiatric patients attend or not attend treatment groups in the community: A qualitative study]]> https://www.researchpad.co/article/5c1c0aa5d5eed0c4844267b0

Background

Non-attendance of treatment groups in the community has been a long-standing problem in mental health care. It has been found to have financial ramifications for services, worsen outcomes for those that do not attend and negatively impact on therapeutic group processes. There is a need to gain a better understanding of patients’ reasons for attending or not attending. This study aimed to explore patient views on facilitators and barriers to the attendance of treatment groups in the community.

Methods

The study used interview data collected as part of three studies that investigated treatment groups for psychiatric patients in the community. Sixty-seven interview transcripts were analysed using the framework method.

Results

Five themes relating to facilitators of group attendance were identified: opportunity for autonomy; self-acknowledging need and therapist encouragement; optimal group format and safe environment; interest in content and enjoyment; actual and expected benefits of attendance. Four themes related to barriers: not being sufficiently informed; concerns about social interactions and the unknown; limited accessibility; and negative group dynamics.

Conclusion

To facilitate attendance and reduce attrition to treatment groups in the community clinicians should address patient’s wishes for information, capture their interest in the group modality, and potentially offer a ‘trial’ session. Furthermore, they should make the group location and time as accessible as possible and create a moderately sized group of six to eight patients. In these groups, mutual respect, feelings of safety and encouragement appear essential to make patients feel they can benefit from attendance.

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<![CDATA[Why do ambulance services have different non-transport rates? A national cross sectional study]]> https://www.researchpad.co/article/5bae98e440307c0c23a1c14b

Background

Some patients calling ambulance services (known as Emergency Medical Services internationally) are not transported to hospital. In England, national ambulance quality indicators show considerable variation in non-transport rates between the ten large regional ambulance services. The aim of this study was to explain variation between ambulance services in two types of non-transport: discharge at scene and telephone advice.

Methods

Mixed model logistic regressions using one month of data (November 2014) from the Computer Aided Despatch systems of the ten large regional ambulance services in England.

Results

41% (251 677/615 815) of patients calling ambulance services were not transported to hospital. Most were discharged at scene after attendance by an ambulance (29% n = 182 479) and a small percentage were given telephone advice (7% n = 40 679). Discharge at scene rates varied by patient-level factors e.g. they were higher for elderly patients, where the reason for calling was falls, and for patients attended by paramedics with extended skills. These patient-level factors did not explain variation between ambulance services. After adjustment for patient-level factors, the following ambulance service level factors explained variation in discharge at scene rates: proportion of patients attended by paramedics with extended skills (odds ratio 1.05 (95% CI 1.04, 1.07)), the perception of ambulance service staff that paramedics with extended skills were established and valued within the workforce (odds ratio 1.84 (1.45, 2.33), and the perception of ambulance service staff that senior management viewed non-transport as risky (odds ratio 0.78 (0.63, 0.98)). Variation in telephone advice rates could not be explained.

Conclusions

Variation in discharge at scene rates was explained by differences in workforce configuration and managerial motivation, factors that are largely modifiable by ambulance services.

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<![CDATA[The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants]]> https://www.researchpad.co/article/5b8b29ed40307c405292ca56

Purpose

Recall by genotype (RbG) research recruits on the basis of genetic variation. Increased use of this approach presents an ethical conundrum for cohort studies/biobanks: whether to inform individuals of their genetic information and deviate from standard practice of non-disclosure of results, or mask this information at the level of the individual participant. This paper examines the perspectives of research study participants on RbG research.

Methods

Fifty-three semi-structured interviews were conducted with young adult participants of the Avon Longitudinal Study of Parents and Children (ALSPAC). Topics included understandings of RbG research, expectations around recruitment and communication of research findings.

Results

Participants uniformly expressed a deep trust and faith in ALSPAC and considered themselves part of the ALSPAC team. Such perspectives, alongside a limited knowledge of genetics and modest interest in reported research outcomes, meant few participants reported immediate concerns about being recruited by genotype.

Conclusion

Our findings highlight the responsibility and duty of care on RbG researchers, and longitudinal studies more generally, and the importance of solidarity, reciprocity and co-production in study-participant relations. As such, we consider existing recommendations for conducting RbG research in longitudinal studies in light of our results and speak to recent changes in the approach used by ALSPAC.

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<![CDATA[A qualitative study exploring patient motivations for screening for lung cancer]]> https://www.researchpad.co/article/5b4a1971463d7e428027f8b5

Background

Low-dose computed tomography (LDCT) of the chest for lung cancer screening of heavy smokers was given a ‘B’ rating by the U.S. Preventive Services Task Force (USPSTF) in 2013, and gained widespread insurance coverage in the U.S. in 2015. Lung cancer screening has since had low uptake. However, for those that do choose to screen, little is known about patient motivations for completing screening in real-world practice.

Objective

To explore the motivations for screening-eligible patients to screen for lung cancer.

Methods

Semi-structured qualitative interviews were conducted with 20 LDCT screen-completed men and women who were members of an integrated mixed-model healthcare system in Washington State. From June to September 2015, participants were recruited and individual interviews performed about motivations to screen for lung cancer. Audio-recorded interviews were transcribed and analyzed using inductive content analysis by three investigators.

Results

Four primary themes emerged as motivations for completing LDCT lung cancer screening: 1) trust in the referring clinician; 2) early-detection benefit; 3) low or limited harm perception; and 4) friends or family with advanced cancer.

Conclusion

Participants in our study were primarily motivated to screen for lung cancer based on perceived benefit of early-detection, absence of safety concerns, and personal relationships. Our findings provide new insights about patient motivations to screen, and can potentially be used to improve lung cancer screening uptake and shared decision-making processes.

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<![CDATA[Critical linkages between land use change and human health in the Amazon region: A scoping review]]> https://www.researchpad.co/article/5b297b72463d7e06147f8d69

Land use change (LUC) is a main cause of global environmental change, and is an important activity to be studied. Our research aims to examine the current state of evidence on the link between LUC and human health in the Amazon region. We conducted a scoping review of literature in two research databases, resulting in 14 papers for analysis. Our analysis demonstrated a lack of clear definitions for LUC, a wide variety of negative health effects from LUC, the lack of qualitative articles, a lack of studies exploring the potential positive health effects of LUC, and the predominance of studies coming from the Brazilian Amazon. Our study validated the prevailing idea that LUC can lead to negative health consequences, if not managed properly.

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<![CDATA[Spouses of Military Members' Experiences and Insights: Qualitative Analysis of Responses to an Open-Ended Question in a Survey of Health and Wellbeing]]> https://www.researchpad.co/article/5989db39ab0ee8fa60bd448b

Introduction

There are few studies on the experiences of spouses of military members, with most focused on adverse impacts of deployment. Responses to an open-ended question in a survey of spouses' health and wellbeing enabled access to perceptions and insights on a broad range of topics. The objective of this investigation was to examine how respondents used the open-ended question and what they discussed, in aim of informing support service agencies and spouses of military members.

Methods

Thematic analysis was conducted on responses to the open-ended question. Descriptive analysis was performed on the demographics, military member characteristics and self-reported health of respondents and non-respondents to the open-ended question.

Findings

Over a quarter (28.5%) of the 1,332 survey participants answered the open-ended question, with respondents having a significantly higher level of education than non–respondents. Respondents expressed negative and positive experiences and insights on military life, provided personal information, commented on the survey, and qualified their responses to closed-ended questions. Topics included ‘inadequate support’, ‘deployment impacts’, ‘suggestions for supporting agencies’, ‘appraisal of experiences’ and ‘coping strategies’.

Conclusions

This investigation uncovered issues of importance to spouses of military members that were not included or identified in a quantitative study. The findings provide a platform from which to explore these issues further, particularly the impact of military life on the non-serving spouse's career. The findings also provide support agencies with evidence to strengthen their services and they give spouses an opportunity to reflect on their own and others' feelings and evaluations of military life.

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<![CDATA[Neurofibromatosis Type 1 and the “Elephant Man's” Disease: The Confusion Persists: An Ethnographic Study]]> https://www.researchpad.co/article/5989da29ab0ee8fa60b81cd9

Background

During informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, many members of Canadian neurofibromatosis associations stated they continue to be told the condition that afflicts them or their children is the “elephant man's” disease. Today, even though well established clinical criteria make it possible to diagnose and differentiate the two diseases, the confusion between NF1 and the disease of Joseph Merrick, the “elephant man”, persists in both media representations and those of physicians. The objective of this article is to document the persistence of this confusion, to identify the factors that contribute to it, and to identify its impact on the well being of individuals with NF1.

Methodology

Preliminary stages of an ethnographic study.

Principal Findings

Our findings show that some reference sources, past medical training, and print and online news media have all contributed to the persistence of the association between NF1 and the disease of Joseph Merrick, the “elephant man”. Our observations suggest that this misconception can have negative medical, social, and psychological impacts on patients and their families and thus increase the burden of the disease.

Conclusions

Changes of attitude regarding medical teaching and the media could lead to definitively clearing up the confusion.

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<![CDATA[The Cooking and Pneumonia Study (CAPS) in Malawi: A Nested Pilot of Photovoice Participatory Research Methodology]]> https://www.researchpad.co/article/5989d9d6ab0ee8fa60b65db8

The Cooking and Pneumonia Study (CAPS) is a village-level randomised controlled trial of an advanced cookstove intervention to prevent pneumonia in children under the age of 5 in rural Malawi (www.capstudy.org). The trial offers a unique opportunity to gain understanding about the social and cultural factors that may facilitate sustained use of improved cookstoves. In January 2015, the use of Photovoice as a participatory research methodology was piloted at the CAPS Chikhwawa site. Photovoice is a photographic technique that allows communities (including women and marginalised groups) to share knowledge about their perspectives and priorities. Four households were given digital cameras and asked to collect images over 24–48 hours and were then interviewed on film about their selection. This resulted in over 400 images and a one hour long film that revealed community concerns and could be thematically analysed. The collection of interview data through film was useful for capturing discussion and was acceptable to participants. Photovoice is a feasible participatory research methodology that can play a valuable role in qualitative studies of improved cookstove adoption in challenging resource poor settings.

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<![CDATA[Social and Cultural Factors Affecting Uptake of Interventions for Malaria in Pregnancy in Africa: A Systematic Review of the Qualitative Research]]> https://www.researchpad.co/article/5989d9e3ab0ee8fa60b6a650

Background

Malaria during pregnancy (MiP) results in adverse birth outcomes and poor maternal health. MiP-related morbidity and mortality is most pronounced in sub-Saharan Africa, where recommended MiP interventions include intermittent preventive treatment, insecticide-treated bednets and appropriate case management. Besides their clinical efficacy, the effectiveness of these interventions depends on the attitudes and behaviours of pregnant women and the wider community, which are shaped by social and cultural factors. Although these factors have been studied largely using quantitative methods, qualitative research also offers important insights. This article provides a comprehensive overview of qualitative research on social and cultural factors relevant to uptake of MiP interventions in sub-Saharan Africa.

Methods and Findings

A systematic search strategy was employed: literature searches were undertaken in several databases (OVID SP, IS Web of Knowledge, MiP Consortium library). MiP-related original research, on social/cultural factors relevant to MiP interventions, in Africa, with findings derived from qualitative methods was included. Non-English language articles were excluded. A meta-ethnographic approach was taken to analysing and synthesizing findings. Thirty-seven studies were identified. Fourteen concentrated on MiP. Others focused on malaria treatment and prevention, antenatal care (ANC), anaemia during pregnancy or reproductive loss. Themes identified included concepts of malaria and risk in pregnancy, attitudes towards interventions, structural factors affecting delivery and uptake, and perceptions of ANC.

Conclusions

Although malaria risk is associated with pregnancy, women's vulnerability is often considered less disease-specific and MiP interpreted in locally defined categories. Furthermore, local discourses and health workers' ideas and comments influence concerns about MiP interventions. Understandings of ANC, health worker-client interactions, household decision-making, gender relations, cost and distance to health facilities affect pregnant women's access to MiP interventions and lack of healthcare infrastructure limits provision of interventions. Further qualitative research is however required: many studies were principally descriptive and an in-depth comparative approach is recommended.

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