Dataset Information

Understanding the impact of COVID-19 pandemic on health-related quality of life amongst Iranian patients with beta thalassemia major: a grounded theory

ABSTRACT:

Background:

The coronavirus disease 2019 (COVID-19) pandemic and the resulting measures can impact daily life and healthcare management amongst patients with beta thalassemia major.

Methods:

The Corbin and Strauss method of grounded theory was used to explore the impact of the COVID-19 pandemic on health-related quality of life (HRQoL) amongst Iranian patients with beta thalassemia major. Semi-structured interviews with 16 patients with thalassemia major in the eastern of Iran were performed. Data collection was conducted from 19 September through 18 November 2020. Collected data were recorded, transcribed, and coded to develop themes and subthemes. Paradigm components were sought to find out what happened to these patients and explore the process and events.

Results:

Insights from these interviews led to five major themes: ‘changing physical health’, ‘emotional and psychological reactions’, ‘changing the nature of relationships and the scope of social support’, ‘metamorphosis of ongoing healthcare, and ‘functionality and adaptation to new realities.’ The emerging core concept was labelled: ‘maintaining well-being balance.’ The COVID-19 pandemic disturbed the balance of life and health of the patients. Multiple strategies to maintain balance and reduce the negative effects of the COVID-19 pandemic on HRQoL were used by the patients, the healthcare team, and support systems.

Conclusions:

Due to the fear of COVID-19, the patients with beta thalassemia were less likely to contact healthcare professionals. They considered postponing blood transfusion and abandoned evaluating disease complications. Reduced access to the healthcare system and shifting resources from existing programmes to COVID-19 by the healthcare system were incompatible policies. These policies and strategies had strong and negative effects on the physical domain of HRQoL. The patients experienced a deterioration of emotional functioning. They reported a strong reduction in social functioning and felt lonely. Online interventions supporting mental health and social interactions and telemedicine can help during the times of social distancing and lockdowns.

SUBMITTER: Arian M

PROVIDER: S-EPMC8581459 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundImmigration is not a new phenomenon but, rather, has deep roots in human history. Documents from every era detail individuals who left their homelands and struggled to reestablish their lives in other countries. The aim of this study was to explore and understand the experience of Iranian immigrants who accessed Canadian health care services. Research with immigrants is useful for learning about strategies that newcomers develop to access health care services.MethodsThe research question guiding this study was, "What are the processes by which Iranian immigrants learn to access health care services in Canada?" To answer the question, a constructivist grounded theory approach was applied. Initially, unstructured interviews were conducted with 17 participants (11 women and six men) who were adults (at least 18 years old) and had immigrated to Canada within the past 15 years. Eight participants took part in a second interview, and four participants took part in a third interview.ResultsUsing a constructivist grounded theory approach, "tackling the stumbling blocks of access" emerged as the core category. The basic social process (BSP), becoming self-sufficient, was a transitional process and had five stages: becoming a stranger; feeling helpless; navigating/seeking information; employing strategies; and becoming integrated and self-sufficient. We found that "tackling the stumbling blocks of access" was the main struggle throughout this journey. Some of the immigrants were able to overcome these challenges and became proficient in accessing health care services, but others were unable to make the necessary changes and thus stayed in earlier stages/phases of transition, and sometimes returned to their country of origin.ConclusionDuring the course of this journey a substantive grounded theory was developed that revealed the challenges and issues confronted by this particular group of immigrants. This process explains why some Iranian immigrants are able to access Canadian health care effectively while others cannot. Many elements, including language proficiency, cultural differences, education, previous experiences, financial status, age, knowledge of the host country's health care services, and insider and outsider resources work synergistically in helping immigrants to access health care services effectively and appropriately.

Project description:BackgroundHealth information avoidance is common in real life, but because it is not always conducive to health promotion and maintenance, people often actively switch to health information acquisition. Understanding this process of active change can facilitate intervention in unreasonable avoidance behaviors. However, studies so far have mostly focused on why and how avoidance takes place, little is known about the process of active change from avoidance to acquisition. We thus use a grounded theory approach (GT) to explore how the active change takes place, and to generate a grounded theoretical framework capable of illustrating stages and influencing factors involved in the active change process.MethodsStraussian grounded theory (Corbin & Strauss, 2015) was used to analyze data collected through semi-structured interviews with 30 adults (14 in good health, 11 with disease, 5 in other health status) who had experienced health information behavior change from avoidance to acquisition. These interviews focused on how the change occurred and what effected the change.ResultsThe core category of Health Information Avoidance Change and 12 categories were identified and integrated to form a theoretical framework termed the Health Information Avoidance Change Model (HIACM). This model describes the process using five non-linear stage variables (initiation, preparation, action, maintenance, and abandonment) and seven moderating factor variables (cognitive change, social stimulus, beliefs and attitudes, intrapsychic literacy, social resources, information source, time and material resources).ConclusionsHIACM can be used to explain the process of active change from health information avoidance to health information acquisition. HIAC is a non-linear and holistic process, and it is necessary to dynamically analyze the impact of relevant factors and take targeted intervention measures in stages. HIAC is usually not only an individual behavior, but also a socialized behavior requiring the collaboration of individuals, families, health information providers, healthcare providers, and governments.

Project description:BackgroundPharmaceutical care has been implemented and regulated differently across Europe with no consensus among countries in relation with professional competencies and especially on nurse prescribing. Demophac Project funded by the European Commission aims to develop a Pan-European Pharmaceutical Care Model with collaboration of 14 partner teams across Europe including Spain where nurse prescribing is starting its implementation at regional level. The aim of the study was to increase understanding of the role of nurses in Pharmaceutical care in Spain after the Nurse Prescribing Regulation approved in 2018 throughout exploring the views and expectations of health professionals involved in the representative settings.Methods and findingsIn depth interviews were conducted in a structure previously agreed by the European Demophac partnership around four topics associated with the Nursing ideal role in pharmaceutical care and the ideal interaction with other healthcare professionals. A grounded-theory approach based on Corbin & Strauss was conducted to interpret collected data from the Spanish most representative settings (primary care, specialized care and residential care for older population). Participants were health professionals involved in pharmaceutical care that accepted to participate (nurses (n = 7), physicians (n = 8) and pharmacists (n = 9)). A pharmaceutical care comprehensive model for the Spanish context considering the recently approved Nurse Prescribing role and the interprofessional collaboration and communication was developed towards facilitating the understanding in such context and the contribution to the unified European Demophac Framework.ConclusionsNurses are primarily responsible for population's Pharmaceutical Care while other professionals pivot on them to provide quality healthcare on a multidisciplinary level. Nurse prescribing may contribute efficiently to the Spanish Health System though more consensus in terms of nurses' training nationwide and enhancement in communication among different professionals within healthcare organizations is required to achieve adequate integrated care into practice.