Exploring the meaning of care among lived experiences of patients with blindness:an interpretive phenomenological study

Objective:To explore the meaning of care experienced by people with blindness in hospitals.Methods:Interpretive phenomenology along with the 6-step method of van Manen was used to conduct the study.Using purposeful sampling,15 people with legal blindness were interviewed.Thematic analysis was used to isolate the meaning of care.Results:Five themes emerged:(a)nurses in the eyes of patients with blindness;(b)negligence in the caring moments;(c)being cared for in ambiguity;(d)Uncoordinated care;and(e)Psychological discomfor t.These sub-themes were condensed into an overarching theme titled as“marginalized patients inside the stereotypical healthcare system.”Conclusions:Lived experiences of patients with blindness revealed that hospitals provide stereotypic or inappropriate care for this minority group in society.Health professionals par ticularly nurses should be skilled to provide person-centered and coordinated care for patients with blindness.

Malaria Illness and Accessing Healthcare in an African Indigenous Population: A Qualitative Study of the Lived Experiences of Uganda’s Batwa in Kanungu District

Purpose: Malaria continues to be a public health threat, especially in sub-Saharan Africa, including Uganda. While Batwa Indigenous People (IPs) face a higher burden of malaria, there is limited understanding of their malaria-lived experiences. We assessed and characterized malaria illness and accessing healthcare lived experiences of the Batwa in Kanungu district to inform contextually and culturally appropriate public health interventions. Methods: An exploratory qualitative study was conducted in 5 Batwa settlements where 5 Focus Group Discussions (n = 36) and 13 Key Informant Interviews (n = 13) were held. Data were collected using printed guides and voice recorders in April 2018. Transcripts from the data that captured the lived experiences of the symptoms, prevention, treatment and barriers to accessing formal healthcare services were applied to Atlas.ti a qualitative data analysis software and condensed into codes, categories, and themes. Results: Many Batwa have experienced malaria in their households, and they know its causes and risk factors, like not sleeping under insecticide-treated mosquito nets (ITNs), living near water bodies, prevention measures like the use of ITNs, and vector management. The lived experiences demonstrate malaria management by an Indigenous population in a rural setting and comprised detecting malaria symptoms, use of herbs as first line of treatment, buying medicines from drug shops, and village health teams (VHTs) treatment. For many Batwa accessing formal healthcare is normally a second option. Barriers for malaria treatment included: long distances to health facilities, geographically difficult terrain, economic constraints, irregular health outreaches, and stockouts of malaria medicines at health facilities. Conclusion: This study characterized Batwa’s malaria illness lived experiences and access to healthcare in rural remote settings. These experiences are essential in appreciating the ways in which Indigenous populations understand and manage common illnesses and how appropriate policies and interventions can be developed.

Front Line Health Workers’ COVID-19 Lived Experiences: A Case of Levy Mwanawasa Hospital in Lusaka, Zambia

Introduction: Frontline health workers who work in COVID-19 isolation treatment centers are susceptible to developing mental health issues due to the overwhelming workload and stress associated with their job. Thus understanding their lived experiences provides insights that helps alleviate health worker burnout and improving their quality of life thereby leading to an efficient delivery of health care services during a pandemic. Aim: To understand the lived experiences of front line health workers during the COVID-19 pandemics at Levy Mwanawasa Teaching University Hospital. Design and Methods: A qualitative interpretative phenomenological study design was used. Purposive sampling method was adopted to select the 14 participants who took part in the study. The data were collected through face-to-face, audio-taped interviews using an in-depth interview guide, after which the responses were transcribed verbatim before using NVIVO to generate codes. The data were analyzed using thematic method. Results: The lived experiences of the participants were found to be mainly negative with few positive experiences. Their lived experiences were mainly negative emotional and psychological experiences including fear, anger, depression, frustration, anxiety and sadness. The thoughts that were identified included thoughts of surviving through the pandemic, thoughts of getting infected, and dying. The frontline health workers also experienced some personal and professional changes as they offered health services in the COVID-19 wards. The personal changes reported included;social limitations and collapse of extra income business while the professional changes included a change in the way health services were delivered, a gain in knowledge and skills and shaping of a career path. The main challenges experienced were limited resources (man power, resuscitation equipment, drugs, personal protective equipment), limited literature on the disease and limited social interactions. Conclusion and Recommendations: Relevant stakeholders should come on board in order to offer support during a pandemic or a similar situation so as to better the experience of frontline health workers with particular attention directed towards the provision of adequate resources to enable them deliver their services effectively. Frontline health workers perspectives and opinions should be taken into account by the institution’s administrators and policymakers when planning for and managing a pandemic.

Mental Illness Education through Stories of Lived Experience: Validation Review of the DoNOHarm Framework

The lived experience of people with mental illness is a powerful way to promote mental health literacy and reduce the stigma associated with mental illness.However,there is little guidance on how to do this safely.Mental Illness Education ACT is an Australian organisation that since 1993 has supported volunteer educators to share their individual stories of lived experience to school and community groups.In 2011,they developed the DoNOHarm Framework to assist volunteers to be able to talk about their experiences in a way that is safe for them and for their audience,a gap that they recognised in thefield.This study reports a review of the Framework,considering the extent to which it is supported by the current literature and how it is being implemented and experienced by the volunteer educators.These research questions were addressed by a literature review and interviews with 14 volunteer educators and the staff that support them.The review of published literature over the past 10 years showed strong evidence for three of the six principles of the Framework:Context and Purpose,Recovery Emphasis,and Safe Talking.Although the principle of Respectful and Inclusive Language is widely promoted in the mental healthfield,no recent studies investigated the benefits of this approach.Similarly,there was no recent research into the two principles of Limits to Helping and Self Care.The interviews revealed strong support for the Frame-work among volunteers.It was seen to be effective to protect the safety of both presenter and audience,ensure the relevance of the presentation,give educators confidence in their message and delivery,convey a hopeful message,and make certain that presentations were engaging for the audience.Overall,this review shows that the DoNO-Harm Frameworkfills an important gap for mental health education,with a sound evidence base where there is published evidence available.

Lived Experience of Sickle Cell Patients during and after Crisis

Aims and Objectives: To understand the lived experience and needs of patients with sickle cell disease during and two weeks after their crisis and identify the obstacles faced by patients while they are in the hospital. Background: Although there is no specific data of a number of affected individuals with sickle cell disease in Oman based on their age, the majority of the Omani population are youth. This category of the population is either in their high school or working in the governmental or private sector in the country. When the most productive category of the population are getting frequently absent due to sickle cell crisis and complication of sickle cell crisis from their work, this leads to huge financial and human resource burden. Design: Phenomenology. Method: This qualitative descriptive research was conducted using face-to-face interviews based on an interview protocol. The interview protocol was developed by the authors based on a framework called domains of well-being. Twenty adult patients have been recruited for the interview after meeting inclusion criteria and were asked about their well-being and lived experience during sickle cell crisis. Authors used SRQR checklist in reporting the study. Results: Thirteen themes were identified related to patients’ lived experience and their well-being during sickle cell crisis. Patients reported physical, emotional, social, and spiritual alteration. Major themes that emerged are communication, medical team interpretation of genuine pain, Emotional disturbance during the crisis, What does this study contribute to the wider global clinical community? Nurses and doctors should use therapeutic communication when dealing with sickle cell patients. Nurses should establish rapport and trust with patients. In each health care setting, there should be a social worker to deal with patients with chronic illness social relationships between the patient, family and friends, post-discharge status, spiritual and Islamic activities, and physical abilities. Conclusion: Participants’ physical and psychological statuses were mostly affected. Moreover, participants experienced extreme emotional disturbance during a painful crisis. However, it was not well understood why participants experienced post sickle cell crisis symptoms which need to be further investigated. Relevance to Clinical Practice: Understanding the lived experience of sickle cell patients may help improve nursing and medical care provided to them and enhance better outcomes for patients. These findings made the nurses and physicians plan a strategy of treating sickle cell patients using a holistic approach.

Lived Experience of Thalassaemic Children in Bangladesh

Background: Worldwide thalassemia poses a serious public health problem due to the high prevalence. Globally, 15 million people are suffering from clinically thalassemic disorders. Objective: To describe the lived experience of thalassaemic children in Bangladesh. Methods: This study was conducted following a descriptive qualitative research approach. Twenty thalassemic children were recruited purposively in the present study. Semi-structured individual’s interview guidelines were used to collect in depth information. In addition, digital recorder was used to capture the children’s voice. Data were analyzed using the process of content analysis. This study was approved by the Institutional Review Board (IRB), NIANER. Results: The mean age of the thalassemic children was (16.05) SD = 1.877. Most of the children were Muslim (95.0%) and they study at school (70.0%). Most of their mothers were (90.0%) housewife. This study revealed four major themes and eleven subthemes based on the experience of thalassemic children: 1) understanding of children meaning of thalassaemia: perception of children, unable to perform daily activities, and educational impact, 2) feeling frustrating experience and disease management: feelings about long term treatment, coping and altered body image, 3) family relationship: differences from siblings, parental attention and feeling burden, and 4) social interactions: sharing with peer, inability to social interaction. Conclusion: This study indicated that thalassaemia has affected negatively on several areas of health of these children including physical, emotional, social financial and educational areas. Reducing these problems requires comprehensive constant support and surveying health and medical status of these children to promote care and decrease the suffering of thalassaemic children. The findings of the present study are grounds for further research in a wider range to describe the different areas of the experience of thalassaemic children.

Lived Experience with Cirrhosis of Liver Patient at a University Hospital: A Qualitative Study

Introduction: Patients’ physical, psychosocial, economical, spiritual and daily activities as well as quality of life are mostly affected by the cirrhosis of liver. It is an advanced stage of liver fibrosis that mostly caused by hepatitis B and hepatitis C, and alcoholism. Objective: This study is intended to explore the lived experience of the patient’s with cirrhosis of liver patients. Methodology: A Phenomenological study design was used as a research methodology to elicit in-depth understanding of lived experience of the hospitalized adult cirrhosis of liver patients at Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh. Twenty patients with cirrhosis of liver were purposively interviewed using guidelines until data were saturated. Recorded voice was checked by participants to establish trustworthiness. Interviews were recorded, transcribed verbatim and translated. Content analysis was used to explore the structure of meaning of the lived experienced cirrhosis of liver patients. Results: The average age of the cirrhosis of liver patients was 43.85 (±15.06) and most of them were male, Muslim and married. The average duration of suffering from this disease was 2.07 year ± 3.95. The lived experiences of cirrhosis of liver patients emerged at five themes: uncertainty about disease and its causes;feeling worse;living in physical impairment and economical crisis;coping with disease and self-actualization about prevention of cirrhosis of liver. Conclusion: People with cirrhosis of liver have unpredictable sufferings. The study findings would help the nurses to realize the patient’s condition for providing proper nursing care and prevent associate complications. It may also assist in conducting further research.

Illness Narrative: Perceptions and Lived Experiences of Kidney Recipient Clients in Shanghai, China

Terminal kidney disease is a life threatening condition and cause for loss of hope to affected individuals. It affects the individuals physically as well as mentally. The advancement in medical knowledge and technology in transplant surgery has steadily increased the number of kidney recipients. This offers hope for the new lease of life and a wide range of perceptions and experiences with self, society and the new organ. There is minimal research on perceptions and lived experiences of kidney transplant recipients. This study explored the perceptions and lived experiences of individuals with a kidney problem living with a kidney transplant in Shanghai, China. Five in-depth interviews were conducted with five clients. The participant’s age ranged from 25 to 45 years. There were three females and two males. Content analysis using NVivo (11.0) software was applied in data analysis. The findings revealed improved quality of life among kidney recipients;however the clients had low knowledge levels on the condition as well as self care practices in the post transplant period. This caused a lot of psychosocial stress in the clients. The post kidney transplant management strategies should include effective education programs to increase awareness on the condition and self care practices so as to reduce factors associated with psychosocial stress in order to improve the quality of life for the clients in the post kidney transplantation period.

The lived experience of a 24-hour support center for persons with psychiatric disabilities: Making me feel almost like an ordinary person

This study illuminates nine psychiatric disabled persons’ lived experience of a newly established community-based service center open around the clock. This new 24-hour support center (SC) was established in 2011 in a Swedish community to better match and facilitate the disabled persons’ needs. In order to illuminate the disabled person’s experiences individual interview was performed. A phenomenological-hermeneutical method inspired by Paul Ricoeur was used to interpret the texts. After a naive reading, a structural analysis revealed two themes: 1), becoming aware of myself as a person, and 2) having a lifeline and belongingness. The comprehensive understanding was interpreted as meaning “Making me feel almost like an ordinary person”, which incorporated the person’s past with their present together with a direction for the future and hope for a more fulfilling life.

Liveability experience of mountain-base residents:the case of Idi-Ori-Shasha Mountain,Ibadan,Nigeria

The increasing influx of people to mountain base environments has opened up the area to a myriad of problems that threaten the liveability of the residents and the sustainability of the environment.Yet,sufficient empirical investigations have not looked at the particular issues that threaten their liveability experience.Using the case of Idi-OriShasha mountain,this study examined the condition of informal urbanization at the mountain-base and equally investigated residents’living experiences.We conducted questionnaire survey with closed and open-ended questions to collect data from 65 out of 533 houses within a buffer of 250 m from the mountain and retrieved 50 completed householdhead survey.The results revealed that majority of the residents were not satisfied living at the mountainbase because of the inadequate facilities that have contributed to their current living conditions.Also,mountain-base residents are liable to many liveability threats such as noise pollution,sleeplessness,building/wall cracks,destructive erosion,and water inaccessibility.The study recommends adequate infrastructural provision intervention in the area in order to upscale liveability dimensions and general residents’living conditions.Conversely,similar studies could be conducted elsewhere for validation and comparison of findings.

Medical Students’Views on Psychiatry in Germany and Italy:Survey

Objectives:In 2019,the Insititue for Health Metrics and Evaluation reported that 16%of life lost were attributed to mental health.As a result,global shortage of psychiatrists is a pressing issue due to the increasing burden of mental illness.In 2016,a mere 5%of US medical students chose psychiatry as a career,a trend mirrored in Germany and Italy.As the medical students of 2016 have graduated or transitioned into residency in 2023,their attitudes towards psychiatry could have contributed to today’s shortage of psychiatrists.The global mental health burden has only been exacerbated by the COVID-19 pandemic.This study explores the attitudes of German and Italian medical students towards psychiatry,their career aspirations,and the influence of factors such as personal experience and education on their interest in the field.Methods:A cross-sectional survey was conducted among 799 medical students in two European countries in 2016.Participants answered questions about their attitudes towards psychiatry,their psychiatric education,and personal experiences.Inferential analyses were performed using chi-square tests and a significance level of 0.05.Results:The number of years in medical school,personal experiences,and perceived quality of education significantly affected specialty choice and ranking of psychiatry compared to other specialties.Internships,psychiatric placements,and views on psychiatric instructors also played a significant role in choosing psychiatry as a career.Conclusions:Assessing medical students’attitudes towards psychiatry and the factors that influence their career choices,such as psychiatric education and personal experiences,can inform changes to attract students to the field.Addressing the worldwide shortage of psychiatrists is crucial to reduce the burden of mental health and substance use disorders.

The Impact of Chronic Pelvic Pain in Women

Chronic pelvic pain (CPP) is a prevalent condition with a significant impact on the personal, social, professional and marital life of women. It is a complex condition that may have no specific causal diagnosis or may be associated with multiple diagnoses, frequently involving treatment failure. The definition of health care strategies fundamentally depends on the way women live with this condition. Thus, the objective of the present study is to learn how women with CPP experience their diagnosis and the meaning they attribute to it. A qualitative study was conducted by interviewing a focus group of 11 women. The content of the interviews was recorded and fully transcribed, and the speeches were interpreted by Bardin’s content analysis. The topics most frequently dealt with in the interview were diagnosis, beginning of pain, worsening and improving factors, marital and interpersonal relationships, interference with daily activities, association with emotional aspects, and perspectives for the future. It could be perceived how much these women need to be better heard and how much the association between psychic and physical questions must be visualized by the professionals who provide care for them. The approach used by professionals from different areas, when properly structured, can minimize the problem of the division of a sick person into separate parts. Psychological care is very important, especially in relation to the discovery of more effective strategies for living with pain.

Studying and Living in China Offers Interesting Experiences

JAM-PACKED and alive with culture and commerce, China’s capital lures foreign students by the thousands each year—to explore the mysterious Orient, or to learn the centuries-old culture. According to the State Education Commission, the number of foreign students who have studied or are studying in China