The Lived Experience of Being Diagnosed With COVID-19 Among Black Patients: A Qualitative Study.
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ABSTRACT:
SUBMITTER: Aliyu S
PROVIDER: S-EPMC8205343 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundLong COVID is a rapidly evolving global health crisis requiring interdisciplinary support strategies that incorporate the lived experience of patients. Currently, there is a paucity of research documenting the day-to-day experiences of patients living with Long COVID.ObjectiveTo explore the lived experience of Long COVID patients.Study designLongitudinal, observation study.SettingAn inductive, data-driven, qualitative approach was used to evaluate hand-written diaries obtained from individuals who had been referred to a Derbyshire Long COVID clinic.Participants12 participants (11 females, age 49±10 years, 11 Caucasians) were recruited. Participants were included if they had a previous confirmed or suspected COVID-19 infection with ongoing recovery, >18 years old, understood the study requirements and provided informed consent.MethodParticipants were directed to complete self-report diaries over 16 weeks. Responses were transcribed verbatim and analysed using thematic analysis.ResultsThree key themes were highlighted: (1) understanding who helps patients manage symptoms, (2) daily activities and the impact on quality of life and health status and (3) the effect of turbulent and episodic symptom profiles on personal identity and recovery.ConclusionsThe novel challenges presented by Long COVID are complex with varying inter-related factors that are broadly impacting functional status and quality of life. Support mechanisms must incorporate the lived experiences and foster true collaborations between health professionals, patients and researchers to improve patient outcomes.Trial registration numberNCT04649957.
| S-EPMC10151237 | biostudies-literature
Project description:ObjectiveTo examine the experience of the COVID-19 pandemic as lived by people with hip and knee osteoarthritis (OA), in Italy.DesignA qualitative study based on semi-structured interviews.SettingUrban and suburban areas in northern Italy.ParticipantsA total of 11 people with OA were enrolled through a purposeful sampling and completed the study.Primary outcome measureThe experience of Italian people with OA during the COVID-19 pandemic.ResultsFour themes were brought to the forefront from the analysis of the interviews. (1) Being Stressed for the Limited Social Interactions and for the Family Members at High Risk of Infection, as the interviewees were frustrated because they could not see their loved ones or felt a sense of apprehension for their relatives. (2) Recurring Strategies to Cope with the Pandemic such as an active acceptance towards the situation. (3) Being Limited in the Possibility of Undergoing OA Complementary Treatments and Other Routine Medical Visits. (4) Being Unaware of the Importance of Physical Activity as First-Line Interventions which was an attitude already present before the pandemic.ConclusionThe COVID-19 pandemic and related restrictions impacted the quality of life and the care of individuals with hip and knee OA. The social sphere seemed to be the most hindered. However, the interviewees developed a good level of acceptance to deal with the pandemic. When it came to their care, they faced a delay of routine medical visits not related to OA and of other complementary treatments (eg, physical therapies) to manage OA. Finally, a controversial result that emerged from these interviews was that first-line interventions for OA (ie, therapeutic exercise) was not sought by the interviewees, regardless of the restrictions dictated by the pandemic. Policy-making strategies are thus necessary to support the awareness of the importance of such interventions.
| S-EPMC8551748 | biostudies-literature
Project description:ObjectivesThis study aimed to explore the lived experience of Jordanian front-line healthcare workers (FHCWs), including their experienced challenges and adaptations amid the COVID-19 pandemic.DesignA phenomenological qualitative design was used to highlight the experiences of a sample Jordanian FHCWs during the COVID-19 pandemic. Qualitative interviews were conducted using a semistructured guide with open-ended questions, audiotaped and then transcribed verbatim. Thematic analysis of the transcribed narratives was conducted using an open coding line by line to develop themes and related subthemes.SettingMobile COVID-19 testing and contact tracing units during an active surge of cases in Jordan between May and September 2020.ParticipantsParticipants were recruited using purposive sampling method and consisted of 15 FHCWs (2 physicians, 10 nurses, 2 paramedics and 1 laboratory technician) who have worked in testing and contact tracing teams in the community and have dealt with suspected or confirmed cases of COVID-19 infection.ResultsParticipant narratives were classified into two main overarching themes; challenges and adaptation themes. The challenges theme was exhibited as follows: (1) an excruciating encounter with an invisible enemy, (2) distorted knowledge about COVID-19 and (3) organisational and administrative challenges. The adaptation theme was exhibited as follows: (1) seeking relevant knowledge about the disease and (2) seeking more connectedness.ConclusionsThe COVID-19 pandemic exerted many challenges for FHCWs at multiple levels; intrapersonal and interpersonal, organisational and societal levels. Nevertheless, a number of adaptation strategies within these levels have been reported. This study helps to provide the base on which healthcare officials and public health personnel can formulate preparedness plans that tackle challenges faced by front-line workers, which ultimately enhance the resilience of healthcare systems to withstand future pandemics.
| S-EPMC9344597 | biostudies-literature
Project description:AimTo understand COVID patients' experiences of and perspectives on disclosure of their illness and to explore and describe the factors affecting disclosure decisions among COVID patients in China.BackgroundDisease disclosure is a critical component of prevention and control of a virus outbreak, and this is especially true during the COVID-19 pandemic. Understanding COVID patients' experiences and perspectives on disclosure could play a vital role in COVID management.DesignA qualitative study.MethodsA semi-structured interview guide was used to conduct qualitative in-depth interviews from April to June 2020. All the interviews were audio-recorded and transcribed, and then, a thematic analysis was conducted. The Standards for Reporting Qualitative Research (SRQR) were applied to this study.ResultsA total of 26 COVID-confirmed patients were recruited for the in-depth interviews. Four themes emerged from the thematic analysis on disclosure: persons disclosed to, reasons for disclosure, reasons for nondisclosure and impact of disclosure. The participants disclosed their COVID diagnosis to different groups, including family, close friends, community members and workplace contacts. The main reasons for disclosure included the following: government policy, social responsibility, gaining support and fear of being blamed for nondisclosure. However, some participants decided not to disclose to some groups for fear of facing stigma and discrimination or to protect family members from discrimination. Despite the potential benefits of obtaining support after disclosure, many participants did experience stigma and discrimination, privacy exposure, psychological distress and social isolation.ConclusionsAn individual's decision as to whether to disclose their COVID-positive status is affected by many factors. To prevent the spread of COVID-19 and reduce the potential risks of disclosure, such as discrimination and privacy exposure, a balanced intervention should be designed to protect COVID patients and to secure any contact tracing. Therefore, the chances of discrimination could be decreased and patients' confidentiality could be protected.Relevance to clinical practiceAs the number of COVID patients increases, disclosure of an individual's infectious status is encouraged by health departments. Despite the potential benefits of disclosure, discrimination and privacy exposure should not be ignored. A disclosure protocol is necessary to ensure patients' privacy regarding their COVID status.
| S-EPMC9205648 | biostudies-literature
Project description:ObjectiveTo explore the lived experience of 'brain fog'-the wide variety of neurocognitive symptoms that can follow COVID-19.Design and settingA UK-wide longitudinal qualitative study comprising online focus groups with email follow-up.Method50 participants were recruited from a previous qualitative study of the lived experience of long COVID-19 (n=23) and online support groups for people with persistent neurocognitive symptoms following COVID-19 (n=27). In remotely held focus groups, participants were invited to describe their neurocognitive symptoms and comment on others' accounts. Individuals were followed up by email 4-6 months later. Data were audiotaped, transcribed, anonymised and coded in NVIVO. They were analysed by an interdisciplinary team with expertise in general practice, clinical neuroscience, the sociology of chronic illness and service delivery, and checked by people with lived experience of brain fog.ResultsOf the 50 participants, 42 were female and 32 white British. Most had never been hospitalised for COVID-19. Qualitative analysis revealed the following themes: mixed views on the appropriateness of the term 'brain fog'; rich descriptions of the experience of neurocognitive symptoms (especially executive function, attention, memory and language), accounts of how the illness fluctuated-and progressed over time; the profound psychosocial impact of the condition on relationships, personal and professional identity; self-perceptions of guilt, shame and stigma; strategies used for self-management; challenges accessing and navigating the healthcare system; and participants' search for physical mechanisms to explain their symptoms.ConclusionThese qualitative findings complement research into the epidemiology and mechanisms of neurocognitive symptoms after COVID-19. Services for such patients should include: an ongoing therapeutic relationship with a clinician who engages with their experience of neurocognitive symptoms in its personal, social and occupational context as well as specialist services that include provision for neurocognitive symptoms, are accessible, easily navigable, comprehensive and interdisciplinary.
| S-EPMC8844964 | biostudies-literature
Project description:Objective:This study aimed to explore the lived experiences of nurses caring for patients with COVID-19 in Iran. Methods:This study was a descriptive phenomenology. Sampling was purposefully performed, and participants were selected in terms of the inclusion criteria. Data were collected through semi-structured interviews using the WhatsApp mobile messaging application. Colaizzi's method was used to analyse the data. The criteria introduced by Lincoln and Guba were used for the study rigour. Results:The data were obtained from 12 nurses caring for patients with COVID-19. The mean age of the participants was 29.41 years (SD = 2.72) with a mean work experience of 6.75 years (SD = 2.52). Three main themes and six subthemes were identified: mental condition (subthemes included "anxiety and stress" and "fear"), emotional condition (subthemes included "suffering and affliction" and "waiting for death"), and care context (subthemes included "turmoil" and "lack of support and equipment"). Conclusion:The results of this study show that nurses working in the wards and care centres designated for patients with COVID-19 are experiencing mental and emotional distress and are working in inadequate professional conditions.
| S-EPMC7450521 | biostudies-literature
Project description:AimTo explore the motivation and lived experience of nurses responding to the COVID-19 pandemic in South Korea.BackgroundIdentifying motivation, barriers and facilitators to nurses' willingness to work during a pandemic is necessary to prepare for future pandemic responses.MethodsTen individual interviews were conducted. Interviews were analysed and synthesized following Colaizzi's method.ResultsSix major themes identified: Decision to participate in the COVID-19 response; Facing hardship; Distress due to the nature of COVID-19; Overcoming hardship; Growing through the COVID-19 response; and The need for reciprocity.ConclusionThe increased demands for nursing care during the pandemic highlight the need for strong organisational support and effective workforce strategies. Our study results can inform the development of programmes and policies that are proactive, rather than reactive, to prepare for future pandemic situations.Implications for nursing managementTo recruit and manage nurses during a pandemic effectively, a safe work environment with proper resources should be established. Additionally, adequate education, training and compensation are needed.
| S-EPMC9115118 | biostudies-literature
Project description:ObjectivesHereditary chronic pancreatitis is a rare condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of pancreatic functions. However, the subjective perspective of individuals affected by hereditary chronic pancreatitis has been little studied. This qualitative study investigates the experience of hereditary chronic pancreatitis patients and their relatives because the awareness of the needs of those affected is an essential component of a patient-centered management of chronic conditions.MethodsSemi-structured qualitative interviews were conducted with hereditary chronic pancreatitis patients and their relatives. Data were analysed using qualitative content analysis. The concepts of 'biographical contingency,' 'biographical disruption' and the 'shifting perspectives model' served as theoretical frameworks.ResultsA total of 24 participants (17 patients, 7 relatives) were interviewed individually. Four main themes were identified: (1) The unpredictable clinical course of hereditary chronic pancreatitis; (2) hereditary chronic pancreatitis as a devastating experience; (3) hereditary chronic pancreatitis as part of a normal life; and (4) being reduced to hereditary chronic pancreatitis.DiscussionThe 'shifting perspectives model' of chronic illness covers the four dimensions adequately and can serve as a theoretical model to explain hereditary chronic pancreatitis patients' experience. A better understanding of the patients and their families' experience and the shifting character of hereditary chronic pancreatitis can help healthcare professionals to tailor the care to meet the needs of those affected.
| S-EPMC9643816 | biostudies-literature
Project description:BackgroundThe COVID-19 pandemic has overwhelmed health care systems globally. To understand how health care systems can best support frontline health care providers caring for patients in similar situations, it is necessary to gain insights into their experience.PurposeThis quality improvement study explored the lived experience of Canadian frontline medicine nurses caring for COVID-19 patients during the first wave of the pandemic.MethodA qualitative interpretive phenomenological approach was conducted. Forty-three eligible nurses participated in semistructured interviews and online surveys. Full transcription and thematic content analysis were performed.ResultsThree overarching themes were deduced: (1) a traumatic experience, (2) living through the experience, and (3) achieving transcendence.ConclusionSeveral recommendations were identified. These recommendations aim to aid health care systems in emergency preparation planning and future pandemic responses while supporting frontline health care providers' resilience and well-being.
| S-EPMC8607914 | biostudies-literature
Project description:ContextMany hospice patients were physically separated from family members and healthcare professionals during the early COVID-19 pandemic.ObjectivesResearchers sought to describe the lived experience of physical separation for hospice patients and family caregivers who adhered to public health guidelines intended to limit the transmission of COVID-19 in the spring of 2020.MethodsResearchers performed a secondary analysis of qualitative data collected during a multi-site clinical trial of an intervention that incorporated family caregivers into care plan reviews during biweekly hospice interdisciplinary team meetings. Twenty-eight adult family caregivers of hospice patients with cancer participated in at least one care plan review between March 7, 2020 and June 10, 2020. The final analytic dataset included the transcribed content of 60 care plan reviews, which were analyzed via reflexive thematic analysis.ResultsHospice patients and their family caregivers experienced physical separation as interrupted care that resulted in the potential for unmet informational, functional, and social and emotional needs. Connection strategies employed to adapt to care interruptions and address patient and caregiver needs were not consistently effective.ConclusionInclusive, innovative connection strategies are needed to ensure that high-quality end-of-life care is provided to hospice patients and their family caregivers when physical presence must be limited.
| S-EPMC8856963 | biostudies-literature