scholarly journals Treatment Goals for Achondroplasia: A Qualitative Study with Parents and Adults

2021 ◽  
Author(s):  
Sarah A. McGraw ◽  
Jeff Henne ◽  
James Nutter ◽  
Adelpha Abrahamson Larkin ◽  
Er Chen
Keyword(s):  
Qualitative Study ◽  
Social Stigma ◽  
Functional Limitations ◽  
The United States ◽  
Decision Makers ◽  
Pharmacologic Treatment ◽  
Structured Interviews ◽  
Neurological Sequelae ◽  
Pharmacologic Treatments ◽  
Fitting In

Abstract Background: Achondroplasia is characterized by disproportionate short stature accompanied by other changes to the musculoskeletal system. Individuals with this condition typically experience a variety of medical complications. Pharmacologic treatments are being developed for the treatment of achondroplasia. It is important to understand the goals for pharmacologic treatment among those affected by achondroplasia and factors that shape these views. Methods: This qualitative study is based on semi-structured interviews with 19 parents of children with achondroplasia and 5 adults with achondroplasia in the United States. We employed thematic analysis using an iterative process to identify themes across the interviews. Results:Participants had two goals for pharmacologic treatment of achondroplasia: ameliorating complications associated with the condition and increasing stature to overcome functional limitations and psychosocial challenges. Complications of particular concern were chronic pain and surgeries to repair spinal, ENT, and neurological sequelae. Increased height would enhance independence, fitting in socially, and avoiding social stigma. Despite many challenges, parents and adults with achondroplasia expressed that they found ways to adapt and emphasized satisfaction and the positive aspects of their lives. Concerns about medical treatment included fear of loss of their identity as a little person. Conclusions:This study offers evidence about how individuals affected by achondroplasia think about pharmacologic treatment of this condition, including both the benefits of ameliorating complications and increasing height. The findings can offer practical insights for parents of children considering treatment, treating physicians and decision makers evaluating coverage decisions for treatment of achondroplasia.

scholarly journals Exploring the Potential Factors Influencing the Adoption of M-Government Services in Saudi Arabia: A Qualitative Analysis

2016 ◽  
Vol 11 (8) ◽  
pp. 56 ◽  
Author(s):  
Raed Alotaibi ◽  
Luke Houghton ◽  
Kuldeep Sandhu
Keyword(s):  
Saudi Arabia ◽  
Qualitative Study ◽  
Relevant Literature ◽  
Decision Makers ◽  
Intention To Use ◽  
Structured Interviews ◽  
Government Services ◽  
Factors Influencing ◽  
Tam Model ◽  
Potential Factors

<p>In Saudi Arabia, Mobile government (m-government) is in its infancy. This study aims to explore potential factors influencing adoption of m-government services in Saudi Arabia to improve future implementation. The review of the relevant literature revealed a lack of research regarding the factors that may potentially influence the adoption m-government services in Saudi Arabia by using TAM model based on the perspective of experts in Yesser. To examine relationships between external factors and behavioural intention to use (BIU) in the TAM model, a qualitative study was conducted using semi-structured interviews with five experts from Yesser. Analysis demonstrated that the factors of trustworthiness, usage experience, awareness and security might influence the adoption of m-government services in Saudi Arabia. The results of the qualitative study also demonstrated that enjoyment does not influence the adoption of m-government services in Saudi Arabia. These findings may help decision makers in Saudi government to improve future implementation of m-government services.</p>

scholarly journals Solidarity, Vulnerability and Mistrust: How Context, Information and Government Affect the Lives of Women in Times of Zika

2019 ◽  
Author(s):  
Ana Rosa Linde Arias ◽  
Maria Roura ◽  
Eduardo Siqueira
Keyword(s):  
Public Health ◽  
Qualitative Study ◽  
Well Being ◽  
The United States ◽  
Epidemiological Surveillance ◽  
Sources Of Information ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Public Health Response ◽  
Individual Level

Abstract Background and Objectives The public health response to Zika outbreak has mostly focused on epidemiological surveillance, vector control, and individual level preventative measures. This qualitative study employs a social-ecological framework to examine how macro (historical, legislative, political, socio-economic factors), meso (sources of information, social support, social mobilization) and micro level factors (individual actions, behavioral changes) interacted to influence the response and behavior of women with respect to Zika in different contexts. Methods A qualitative study was carried out. Women were recruited through the snowball sampling technique from various locations in Brazil, Puerto Rico, and the United States. They were of different nationalities and ethnicities. Data were collected through semi-structured interviews. The data transcripts were analyzed using thematic analysis. Results Women in this study deemed the information provided as insufficient, which led them to actively reach out and access a variety of media sources. Social networks played a vital role in sharing information but also resulted in the spread of hoaxes or rumors. Participants in our research perceived socio-economic inequities but focused on how to remedy their microenvironments. They did not engage in major social activities. Lack of trust in governments placed women in vulnerable situations by preventing them to follow the guidance of health authorities. These impacts were also a result of the response tactics of health and government administrations in their failed attempts to ensure the well-being of their countries’ populations. Conclusions Our findings call for a broad spectrum of public health interventions that go beyond individual level behavioral change campaigns, to more comprehensively address the broader meso and macro level factors that influence womens’ willingness and possibility to protect themselves.

scholarly journals COVID-19 Pandemic Adversely Affects the Provision of Desired Newborn Circumcision: Perinatal Physician Perspectives

2022 ◽  
Vol 1 ◽  
Author(s):  
Lauren E. Corona ◽  
Ilina Rosoklija ◽  
Ryan F. Walton ◽  
Derek J. Matoka ◽  
Catherine M. Seager ◽  
...  
Keyword(s):  
United States ◽  
Qualitative Study ◽  
The United States ◽  
Structured Interviews ◽  
Newborn Period ◽  
Policy Makers ◽  
Urban City ◽  
Physician Perspectives ◽  
Interview Guide ◽  
Hospital Policies

Over half of boys in the United States undergo circumcision, which has its greatest health benefits and lowest risks when performed during the newborn period under local anesthesia. The COVID-19 pandemic has affected delivery of patient care in many ways and likely also influenced the provision of newborn circumcisions. Prior to the pandemic, we planned to conduct a qualitative study to ascertain physician perspectives on providing newborn circumcision care. The interviews incidentally coincided with the onset of the pandemic and thus, pandemic-related changes emerged as a theme. We elected to analyze this theme in greater detail. Semi-structured interviews were conducted with perinatal physicians in a large urban city from 4/2020 to 7/2020. Physicians that perform or counsel regarding newborn circumcision and physicians with knowledge of or responsibility for hospital policies were eligible. Interviews were transcribed verbatim and qualitative coding was performed. Twenty-three physicians from 11 local hospitals participated. Despite no specific COVID-19 related questions in the interview guide, nearly half of physicians identified that the pandemic affected delivery of newborn circumcision care with 8 pandemic-related sub-themes. The commonest sub-themes included COVID-19 related changes in: (1) workflow processes, (2) staffing and availability of circumcision proceduralists, and (3) procedural settings. In summary, this qualitative study revealed unanticipated COVID-19 pandemic-related changes with primarily adverse effects on the provision of desired newborn circumcisions. Some of these changes may become permanent resulting in broad implications for policy makers that will likely need to adapt and redesign the processes and systems for the delivery of newborn circumcision care.

scholarly journals Challenges with social distancing during the COVID-19 pandemic among Hispanics in New York City: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Christopher J. Gonzalez ◽  
Bryan Aristega Almeida ◽  
George S. Corpuz ◽  
Hector A. Mora ◽  
Oluwatobi Aladesuru ◽  
...  
Keyword(s):  
New York ◽  
Qualitative Study ◽  
Community Health Center ◽  
Health Belief ◽  
Well Being ◽  
The United States ◽  
Structured Interviews ◽  
Social Distancing ◽  
Unpaid Care ◽  
Hispanic Adults

Abstract Background Hispanics in the United States are disproportionately affected by the novel coronavirus (COVID-19). While social distancing and quarantining are effective methods to reduce its spread, Hispanics, who are more likely to be essential workers and live in multigenerational homes than non-Hispanics, may face challenges that limit their ability to carry out these preventative efforts. We elicited the experiences of Hispanic adults with social distancing and self-quarantining during the COVID-19 pandemic in New York. Methods In this qualitative study, Hispanic adults receiving care at a federally qualified community health center in East Harlem, New York, were recruited for remote one-on-one semi-structured interviews from 5/15/2020 to 11/17/2020. Interviews were conducted by a bilingual interviewer in Spanish or English, using a semi-structured topic guide informed by the Health Belief Model. Audio-recordings were professionally transcribed. We used thematic analysis to iteratively code the data. Each transcript was independently coded by two research team members, then reconciled by a third. Major themes and subthemes were identified. Results Among 20 participants, four major themes emerged; Hispanics were: (1) fearful of contracting and transmitting COVID-19, (2) engaging in practices to reduce transmission of COVID-19, (3) experiencing barriers to social distancing and quarantining, and (4) facing an enduring psychological and physical toll from COVID-19. Conclusions Despite understanding the risks for contracting COVID-19 and taking appropriate precautions, Hispanics faced numerous challenges to social distancing and quarantining, such as living in crowded, multi-generational households, working as essential workers, and providing unpaid care to family members. Such challenges took a toll on their physical, emotional, and financial well-being. Our findings suggest that a tailored approach to public health messaging and interventions for pandemic planning are warranted among members of this community. Further research is needed to understand and mitigate the long term physical and psychological consequences of the pandemic among Hispanics.

scholarly journals Forestland management and empowerment: A phenomenological inquiry into the experiences of women forestland managers in the state of Georgia, USA

2020 ◽  
Vol 1 (2) ◽  
pp. 24-38
Author(s):  
Hallie C. Harriman ◽  
Nicholas E. Fuhrman ◽  
Kathleen D. Kelsey ◽  
Kyle Maurice Woosnam
Keyword(s):  
Land Management ◽  
The United States ◽  
Decision Makers ◽  
Educational Outreach ◽  
Structured Interviews ◽  
Phenomenological Inquiry ◽  
Phenomenological Research Design ◽  
Qualitative Phenomenological ◽  
Professional Resources ◽  
Experiences Of Women

Women are increasingly becoming the primary decision-makers of forested properties throughout the United States. The purpose of this study was to understand the experiences of women forestland owners in Georgia. A qualitative phenomenological research design was used to interview nine female forestland owners. Three themes emerged from the semi-structured interviews. Participants stated that land management involved: (a) initial feelings of inadequacy (an imposter syndrome), (b) personal and professional resources, and (c) genuine relationships. The theory of empowerment provided a basis for interpreting the findings and aided in the development of recommendations for future practice and research.  We found that  women experienced a temporary imposter stage early in land management that gave way to feeling empowered as their experiences with managing land increased. Access to trustworthy information, as well as genuine relationships with forestry professionals and other landowners, played key roles in such advancement. We recommend  strategies for natural resource professionals to consider, including encouraging formal and informal networking opportunities when working with female audiences, including at educational outreach events like those hosted by Extension.

scholarly journals Solidarity, Vulnerability and Mistrust: How Context, Information and Government Affect the Lives of Women in Times of Zika

2020 ◽  
Author(s):  
Ana Rosa Linde Linde Arias ◽  
Maria Roura ◽  
Eduardo Siqueira
Keyword(s):  
Public Health ◽  
Qualitative Study ◽  
Well Being ◽  
The United States ◽  
Epidemiological Surveillance ◽  
Sources Of Information ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Public Health Response ◽  
Individual Level

Abstract Background The public health response to Zika outbreak has mostly focused on epidemiological surveillance, vector control, and individual level preventative measures. This qualitative study employs a social-ecological framework to examine how macro (historical, legislative, political, socio-economic factors), meso (sources of information, social support, social mobilization) and micro level factors ( i ndividual actions, behavioral changes) interacted to influence the response and behavior of women with respect to Zika in different contexts. Methods A qualitative study was carried out. Women were recruited through the snowball sampling technique from various locations in Brazil, Puerto Rico, and the United States. They were of different nationalities and ethnicities. Data were collected through semi-structured interviews. The data transcripts were analyzed using thematic analysis. Results Women in this study deemed the information provided as insufficient, which led them to actively reach out and access a variety of media sources. Social networks played a vital role in sharing information but also resulted in the spread of hoaxes or rumors. Participants in our research perceived socio-economic inequities but focused on how to remedy their microenvironments. They did not engage in major social activities. Lack of trust in governments placed women in vulnerable situations by preventing them to follow the guidance of health authorities. These impacts were also a result of the response tactics of health and government administrations in their failed attempts to ensure the well-being of their countries’ populations. Conclusions Our findings call for a broad spectrum of public health interventions that go beyond individual level behavioral change campaigns, to more comprehensively address the broader meso and macro level factors that influence womens’ willingness and possibility to protect themselves. Key words : Zika, women, social determinants, information, public health, maternal and child health

scholarly journals Emojis As Evidence in Trial

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Gabriela Zeidler
Keyword(s):  
United States ◽  
Grounded Theory ◽  
Qualitative Study ◽  
The United States ◽  
Appellate Court ◽  
Court System ◽  
Structured Interviews ◽  
Use Of Technology ◽  
Southwest Region ◽  
Made In

As the sophistication and use of technology increases, communication through technology becomes more common, leading to the increasing use of emojis. In turn, this has led to an increase of emojis being used as evidence in court, with little guidance of how they can be interpreted within the law. This study examines the ways judges perceive emojis in court, especially when they are used as evidence. Through a grounded theory qualitative study, semi-structured interviews of judges throughout the Southwest region of the United States were conducted and analyzed according to Charmaz grounded theory guidelines (Charmaz, 2006) to determine judges’ perceptions of the use of emojis in court as evidence. This seeks to determine how emojis are used within the court system as they can carry and convey many different meanings to different people.  This study found that many judges find it necessary to have context with emojis for the purposes of interpretation by the jury, but it is not necessary for special instructions to be made in regards to emojis. Additionally, this study found other aspects of trial including jury selection and the appellate court are being affected by the increasing usage of emojis as evidence due to their highly subjective nature. Further research is needed to assess the broader implications of advancements in technology on the legal system.

Diagnosis to death: family experiences of paediatric heart disease

2020 ◽  
Vol 30 (11) ◽  
pp. 1672-1678
Author(s):  
Kathryn Neubauer ◽  
Erin P. Williams ◽  
Pamela K. Donohue ◽  
Elliott M. Weiss ◽  
Mithya Lewis-Newby ◽  
...  
Keyword(s):  
United States ◽  
Heart Failure ◽  
Heart Disease ◽  
Prenatal Diagnosis ◽  
Qualitative Study ◽  
The United States ◽  
Structured Interviews ◽  
Family Experiences ◽  
New Normal ◽  
Causes Of Mortality

AbstractCHD remains one of the leading causes of mortality of children in the United States. There is limited research about the experience of parents from the diagnosis of their child with CHD through the death of their child. A prior study has shown that adults with heart failure go through a series of four transitions: 1) learning the diagnosis, 2) reframing the new normal, 3) taking control of the illness, and 4) understanding death is inevitable. In our qualitative study, we performed semi-structured interviews with parents who have a child die of CHD to determine whether the four transitions in adults apply to parents of children with CHD. We found that these four transitions were present in the parents we interviewed and that there were two novel transitions, one that proceeded the first Jones et al transition (“Prenatal diagnosis”) and one that occurred after the final Jones et al transition (“Adjustment after death”). It is our hope that identification of these six transitions will help better support families of children with CHD.

scholarly journals Mothers’ experience of caring for home-quarantined children after close contact with COVID-19 in Korea: an exploratory qualitative study

2021 ◽  
Vol 27 (3) ◽  
pp. 220-229
Author(s):  
Hyeyeon Lee ◽  
Mihui Kim ◽  
Ocksim Kim ◽  
Sue Kim ◽  
Seongmi Choi
Keyword(s):  
Qualitative Study ◽  
Thematic Analysis ◽  
Close Contact ◽  
Social Stigma ◽  
Psychosocial Issues ◽  
Structured Interviews ◽  
Face To Face ◽  
School Aged Children ◽  
The Social ◽  
Psychosocial Difficulties

Purpose: The world saw a shift into a new society consequent to the coronavirus disease 2019 (COVID-19), which made home quarantine mandatory for a person in close contact with those who tested positive. For children, however, home quarantine was not limited only to themselves but the involvement of parents, even mothers were required to quarantine. This qualitative study aims to explore and understand mothers’ experience and their related psychosocial issues while caring for their school-aged children who had to home quarantine after coming in close contact with COVID-19 positive individuals in Korea. Methods: Data were collected from October 2020 to January 2021 via in-depth, semi-structured interviews with nine mothers of children who had to home quarantine. Interviews were conducted face-to-face in an independent space near the participant’s home or workplace (n=5) or via online platforms or telephone (n=4). The data were analyzed using thematic analysis through several iterative team meetings.Results: Thematic analysis revealed the following four themes: “Unable to be relieved due to uncertain situations surrounding me,” “Blame and hurt toward me, others, and one another,” “Pulling myself together for my children in my broken daily life,” and “Changes in the meaning of life amid COVID-19.”Conclusion: The narratives show that mothers experienced psychosocial difficulties while caring for their children during home quarantine. It is necessary to reduce the social stigma toward individuals in home quarantine and establish policies to ensure the mothers’ work and family’s compatibility.

scholarly journals Experienced Psychosocial Problems of Women with Spouses of Substance Abusers: A Qualitative Study

2019 ◽  
Vol 7 (21) ◽  
pp. 3584-3591 ◽  
Author(s):  
Hamideh Mancheri ◽  
Jahangir Maghsoudi ◽  
Mousa Alavi ◽  
Zahra Sabzi
Keyword(s):  
Qualitative Study ◽  
Social Status ◽  
Substance Dependence ◽  
Social Issues ◽  
Social Stigma ◽  
Psychosocial Problems ◽  
Substance Abuser ◽  
Structured Interviews ◽  
Main Category ◽  
The Family

BACKGROUND: Substance dependence is one of the most important social issues in the world today, which affects not only the life of an addicted individual, but also the relatives of the substance abuser individual, and in particular their spouses and children are also exposed to multiple injuries. AIM: This study aimed to investigate the experiences of the women with the substance abuser spouse. MATERIAL AND METHODS: This study is a qualitative study. Sampling was done purposefully. The data were subjected to 25 participants with in-depth and semi-structured interviews (15 wives and 7 therapists and 3 officials dealing with family members of the substance abuser) and analysed using the qualitative approach of the conventional content analysis (Granheim's method). RESULTS: Out of the results of the interviews, two main categories were extracted, including A) family psychological breakdown and B) Disadvantaged social status. The main category of family psychological breakdown including 5 subcategories: Psychological disadvantages, losing borders in the family, insecure space house for the family, turbulent family and Concern on spouses leaving. Category of disadvantaged social status is also including 3 subcategories: trying to preserve the family's image, social stigma, and social isolation of the family. CONCLUSION: The families, especially the women with the substance abuser spouse, are severely vulnerable in various psychological and social dimensions. Therefore, the attention of the health cares to these families is important.

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