The aim of this study was to understand the experiences of family caregivers in the process of diagnosing hereditary angioedema. An interpretive and qualitative research methodology based on Gadamer's philosophical hermeneutics was carried out. Data collection took place between May 2015 and August 2016 and included a focus group and in-depth interviews with 16 family caregivers. Two themes define the experiences of family caregivers: "Family life focuses on identifying the problem" and "Discovering and coping with a complex diagnosis." The process of diagnosis generates fear, anxiety, uncertainty, and incomprehension. Family caregivers are the main support for patients diagnosed with hereditary angioedema. As they share in the patients' suffering, they need a diagnosis to be established to be able to cope with the disease and offer support. Family health nurses can contribute to improving the coping process in this phase of the disease.
Download full-text PDF |
Source |
---|---|
http://dx.doi.org/10.1177/1054773818780102 | DOI Listing |
Am J Hosp Palliat Care
January 2025
Department of Emergency Medicine, Medical College of Wisconsin, Milwaukee, WI, USA.
Objectives: To explore American Muslims' perceptions and experiences regarding hospice care within the United States.
Methods: A qualitative descriptive study of 11 participants, including one patient and ten family caregivers. Data was collected through semi-structured interviews and analyzed using a framework approach to identify key themes related to perceptions, ethical concerns, and experiences with hospice care.
Community Dent Oral Epidemiol
January 2025
School of Clinical Dentistry, University of Sheffield, Sheffield, UK.
Aim: To explore the views of patients, caregivers, and dental professionals on the factors that influence implementation, processes, and effectiveness of a guided self-help cognitive behavioural therapy (CBT) intervention, 'Your teeth, you are in control' (YTYAIC), in the CALM trial.
Methods: Semi-structured interviews were conducted as part of this qualitative component of the process evaluation, and data were analysed using a framework approach based on the Consolidated Framework for Implementation Research (CFIR) and the Five Areas Model of CBT.
Results: Thirty-seven participants were recruited.
Behav Anal Pract
December 2024
Department of Special Education, The University of Texas at Austin, 1 University Station/D5300, Austin, TX 78712 USA.
Culturally and linguistically diverse (CLD) families of autistic children face unique challenges in accessing services that are appropriate for their cultures and languages. The purpose of the current study was to evaluate the impact of training language on caregiver skill acquisition. Using behavioral skills training (BST) through telehealth, three Latino caregivers whose first language is Spanish were taught to implement two different behavioral protocols with their autistic children.
View Article and Find Full Text PDFBehav Anal Pract
December 2024
School of Human Sciences and Humanities, Clinical Health Applied Sciences, University of Houston-Clear Lake, 2300 Bay Area Boulevard, Houston, TX 77058 USA.
There has been a substantial increase in the racial and ethnic diversity of the United States population in the past 10-12 years, with the second most prevalent racial or ethnic group being Hispanic or Latino (Jensen, 2021). As a result, it is crucial that behavior analysts are prepared to serve consumers from all backgrounds, including those who do not speak English fluently. One important component for service delivery for linguistically diverse consumers is the incorporation of an interpreter.
View Article and Find Full Text PDFBehav Anal Pract
December 2024
Department of Child and Family Studies, College of Behavioral and Community Sciences, University of South Florida, 13301 Bruce B. Downs Blvd., Tampa, FL 33612 USA.
Unlabelled: Taking an individualized approach to cultural responsiveness is essential when collaborating with families to deliver behavior-analytic services. One way behavior analysts can start this process is by asking caregivers and other relevant individuals informed and targeted questions that would allow behavior analysts to make cultural adaptations to services that are provided. However, there is a lack of well-developed resources that are specific to behavior-analytic practice and designed to assist behavior analysts in facilitating conversations regarding values and cultures of clients and their families.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!