The use of haematopoietic stem cell transplantation in Fanconi anaemia patients: a survey of decision making among families in the US and Canada

Background

Fanconi anaemia (FA) is a rare genetic disorder associated with bone marrow failure (BMF), congenital anomalies and cancer susceptibility. Stem cell transplantation (SCT) offers a potential cure for BMF or leukaemia, but incurs substantial risks. Little is known about factors influencing SCT decision making.

Objective

The study objective was to explore factors influencing patients' with FA and family members' decision making about SCT.

Design

Using a mixed‐methods exploratory design, we surveyed US and Canadian patients with FA and family members who were offered SCT.

Main variables studied

Closed‐ended survey items measured respondents' beliefs about the necessity, risks and concerns regarding SCT; multivariable logistic regression was used to examine the association between these factors and the decision to undergo SCT. Open‐ended survey items measured respondents' perceptions of factors important to the SCT decision; qualitative analysis was used to identify emergent themes.

Results

The decision to undergo SCT was significantly associated with greater perceived necessity (OR = 2.81, P = 0.004) and lower concern about harms of SCT (OR = 0.31, P = 0.03). Qualitative analysis revealed a perceived lack of choice among respondents regarding the use of SCT, which was related to physician influence and respondent concerns about patients' quality of life.

Conclusions

Overall, study results emphasize the importance of the delicate interplay between provider recommendation of a medical procedure and patient/parental perceptions and decision making. Findings can help providers understand the need to acknowledge family members' perceptions of SCT decision making and offer a comprehensive discussion of the necessity, risks, benefits and potential outcomes.     

Before and after study of bar workers' perceptions of the impact of smoke-free workplace legislation in the Republic of Ireland

Background  

Objectives : To compare support for, and perceptions of, the impacts of smoke-free workplace legislation among bar workers in the Republic of Ireland (ROI) pre- and post-implementation, and to identify predictors of support for the legislation.     

Development of the Chicago Food Allergy Research Surveys: assessing knowledge, attitudes, and beliefs of parents, physicians, and the general public

Background  

Parents of children with food allergy, primary care physicians, and members of the general public play a critical role in the health and well-being of food-allergic children, though little is known about their knowledge and perceptions of food allergy. The purpose of this paper is to detail the development of the Chicago Food Allergy Research Surveys to assess food allergy knowledge, attitudes, and beliefs among these three populations.     

Trust and distrust in low-income Michigan residents during the early COVID-19 pandemic: A qualitative study

Background

Trust and distrust have shaped health behaviour during the COVID-19 pandemic. Since the start of the pandemic, misinformation and polarization eroded trust across the United States. In states like Michigan, pandemic restrictions led to significant unrest. Michiganders also faced disproportionate morbidity and mortality from COVID-19 during this period.

Objective

The objective of this qualitative study was to understand the individual experiences of trust in low-income Michiganders during the early COVID-19 pandemic.

Participants

Twenty-four participants at or below 200% of the federal poverty line who resided in Michigan were recruited for this study.

Approach

Interviews were conducted during the winter of 2020 using a formal interview guide that addressed sources of information, perceptions of risk and exposure, protective behaviours and impacts of the pandemic at home, work and in receiving healthcare.

Results

Thematic analysis showed that themes of trust and distrust emerged in multiple facets of our participants' experiences, including in the context of information sources, the behaviours of others, health, financial security, employment and overall safety. Trust and distrust in low-income communities often stemmed from significant financial and economic vulnerabilities and instability in access to healthcare that was exacerbated in the pandemic. Furthermore, participant trust was shaped by internal (e.g., relationships with others) and external (e.g., source of information, social inequity) factors that influenced their perceptions and experiences during the pandemic.

Conclusion

Trust has played an important role in many aspects of the experiences of low-income communities during the COVID-19 pandemic. This is important for clinicians to consider as COVID-19 becomes endemic, and trust continues to impact patients' approaches to vaccines, testing and treatment options.

Patient or Public Contribution

This study was designed and conducted with the assistance and input of the members of the DECIDERS Steering Committee, a diverse statewide network of community members in Michigan. The DECIDERS team allows community members to have a voice in the design and conduct of health research, and collaborates with researchers to improve health across the state of Michigan.     

Food perceptions in terms of health among Norwegian-Pakistani women participating in a culturally adapted intervention

Objective  

To explore food perceptions in terms of health among Pakistani immigrant women, and if such perceptions could be altered through a culturally adapted intervention.     

Integration in primary community care networks (PCCNs): examination of governance,clinical, marketing,financial, and information infrastructures in a national demonstration project in Taiwan

Background  

Taiwan's primary community care network (PCCN) demonstration project, funded by the Bureau of National Health Insurance on March 2003, was established to discourage hospital shopping behavior of people and drive the traditional fragmented health care providers into cooperate care models. Between 2003 and 2005, 268 PCCNs were established. This study profiled the individual members in the PCCNs to study the nature and extent to which their network infrastructures have been integrated among the members (clinics and hospitals) within individual PCCNs.     

Perceptions of short-term medical volunteer work: a qualitative study in Guatemala

Background  

Each year medical providers from wealthy countries participate in short-term medical volunteer work in resource-poor countries. Various authors have raised concern that such work has the potential to be harmful to recipient communities; however, the social science and medical literature contains little research into the perceptions of short-term medical volunteer work from the perspective of members of recipient communities. This exploratory study examines the perception of short-term medical volunteer work in Guatemala among groups of actors affected by or participating in these programs.     

Assessing the impact of vulnerability on perceptions of social cohesion in the context of community resilience to disaster in the Blue Mountains

Objective

To assess the impact of network communications, community participation and elements of vulnerability on the perception of social cohesiveness in the Blue Mountains local government area (Blue Mountains LGA).

Design

A questionnaire was administered to residents of the Blue Mountains LGA. Econometric analysis of the resulting data was undertaken.

Setting

Blue Mountains LGA, Australia.

Participants

One thousand one hundred and three residents of the Blue Mountains LGA responded to the questionnaire.

Main outcome measure(s)

The responses enabled the construction of variables measuring individual perceptions of community cohesiveness, their network communications and community participation. Demographic data and data on the vulnerabilities of individuals were also collected.

Results

The data were used in an econometric model which identified that network communications and community participation impacted positively on perceptions of social cohesiveness while vulnerability factors had a negative impact.

Conclusions

Remedial action to build community cohesiveness and network communications can be expected to have a positive impact on social cohesiveness. In developing strategies to build community cohesiveness and network communication, particular care needs to be taken to ensure the inclusion of those members of society who are regarded as the most vulnerable.     

Gender relations and health research: a review of current practices

Introduction  

The importance of gender in understanding health practices and illness experiences is increasingly recognized, and key to this work is a better understanding of the application of gender relations. The influence of masculinities and femininities, and the interplay within and between them manifests within relations and interactions among couples, family members and peers to influence health behaviours and outcomes.     

Malaria-related perceptions and practices of women with children under the age of five years in rural Ethiopia

Background  

Malaria remains to be the major cause of morbidity and mortality among pregnant women and children in Ethiopia. The aim of this study was to investigate the local perceptions, practices and treatment seeking behaviour for malaria among women with children under the age of five years.     

Development and reliability of a self-report questionnaire to examine children's perceptions of the physical activity environment at home and in the neighbourhood

Background  

Environmental factors are increasingly being implicated as key influences on children's physical activity. Few studies have comprehensively examined children's perceptions of their environment, and there is a paucity of literature on acceptable and reliable scales for measuring these. This study aimed to develop and test the acceptability and reliability of a scale which examined a broad range of environmental perceptions among children.     

Hospice Family Members' Perceptions of and Experiences With End-of-Life Care in the Nursing Home

Objective

Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting?

Methods

This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.

Results

Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.

Conclusion

These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.     

Contraceptive methods and use by women aged 35 and over: A qualitative study of perspectives

Background  

More than 30% of the pregnancies in women aged 35 and over are unintended. This paper compares perceptions about contraceptive methods and use among women with and without an unintended pregnancy after turning age 35.     

Rewarding and unrewarding aspects of deployment to Iraq and its association with psychological health in UK military personnel

Purpose  

Research into how individuals perceive their deployment experiences is important for understanding the association between stressful events and subsequent positive or negative effects. This study examines perceptions among UK military personnel with regard to rewarding and unrewarding aspects of deployment in Iraq.     

Barriers to a healthy lifestyle among obese adolescents: a qualitative study from Iran

Purpose  

Existing data show a rising prevalence of overweight and obesity among Iranian adolescents. The current study investigates adolescents’ perceptions regarding overweight/obesity and explores barriers to a healthy life style among Iranian adolescents.     

Digging deeper: quality of patient-provider communication across Hispanic subgroups

Background  

Recent research suggests that ethnic subgroup designation plays an important role in health-related disparities among Hispanics. Our objective was to examine the influence of Hispanics' self-reported ethnic subgroup designation on perceptions of their health care providers' communication behaviors.     

Subjective health legacy of the Chornobyl accident: a comparative study of 19-year olds in Kyiv

Background  

Since the Chornobyl accident in 1986, the physical health of exposed children in Ukraine has been monitored, but their perceived health has not been studied. This study examines health perceptions of Ukrainian adolescents exposed to radioactive fallout in utero or as infants, and the epidemiologic and Chornobyl-related influences on self-reported health.     

Uptake of permanent contraception among women in sub-Saharan Africa: a literature review of barriers and facilitators

Objective

Uptake of permanent contraception among women remains low in sub-Saharan Africa compared to other regions. We aimed to synthesize available evidence on barriers to, and facilitators of permanent contraception with regards to tubal ligation among women in sub-Saharan Africa.

The context of HIV risk behaviours among HIV-positive injection drug users in Viet Nam: Moving toward effective harm reduction

Background  

Injection drug users represent the largest proportion of all HIV reported cases in Viet Nam. This study aimed to explore the perceptions of risk and risk behaviours among HIV-positive injection drug users, and their experiences related to safe injection and safe sex practices.     

Post-Traumatic Stress Disorder,Neighborhood Residency and Satisfaction,and Social Network Characteristics among Underserved Women in Baltimore,Maryland

Background

Post-traumatic stress disorder (PTSD) prevalence is high, but not well-understood, among women living in urban, impoverished areas. Although previous studies have established social support as an important factor in PTSD development and maintenance, little is known about how perceptions of neighborhood are linked to PTSD. This study examined the relationship between PTSD and social network and neighborhood factors among women with a low socioeconomic status.