scholarly journals Analyzes of Life World of a Young Girl With Myasthenia Gravis: Qualitative Case Study

2020 ◽  
Vol 23 (3) ◽  
pp. 412-421
Author(s):  
Anahita Khodabakhshi-Koolaee ◽  
◽  
Mohammad Pourebrahimi ◽  

Background and Aim: Myasthenia Gravis (MG) is a neuromuscular disorder and auto-immune disease that is associated with symptoms of fluctuating muscle fatigue and dysfunction of the neuromuscular junction system. This disease greatly affects various aspects of the patient's life and impacts the person's perception of the quality of life. The aim of this study was to explain and analyze life experiences with myasthenia gravis disease in a young girl. Methods & Materials: This report is a qualitative case with interpretive phenomenological approach that examines the life experiences of a young girl with myasthenia gravis in 2019. Data were collected through semi-structured interviews and analyzed using Van Manen's phenomenological approach. Ethical Considerations: This study was registered in the Research Ethics Committee of Khatam University (Code: 3299/100/P/98). Results: Thematic analysis indicated that myasthenia gravis disease affects all aspects of person's life world. These four aspects include living and feelings with time, body, space, and others. Eventually, three interrelated themes emerged from the patient's perception of the world around her, including physical weakness, future ambiguity, and frustration. Conclusion: The present study shows a clear image and understanding of the problems of living with MG in a young girl. The phenomenological world of mixed by physical weakness, ambiguity in the future, and frustration that indicating the suffering and distress that the patient experiences following the illness. The results of this study contribute to the awareness of health and rehabilitation specialists in the field of work and research in myasthenia gravis as a neurological disease.

2021 ◽  
Vol 12 ◽  
Author(s):  
Farzad Fatehi ◽  
Kamyar Moradi ◽  
Ali Asghar Okhovat ◽  
Ghazaleh Shojatalab ◽  
Behnaz Sedighi ◽  
...  

Objectives: Myasthenia gravis (MG) is an immune-mediated neuromuscular disorder responsive to immunomodulatory treatments. 10–20% of MGs are not responsive to conventional first-line therapies. Here, we sought to investigate the efficacy and safety of rituximab therapy in the treatment of patients with refractory MG.Methods: In a 48-week, multicenter, open-labeled, prospective cohort setting, 34 participants with refractory MG were assigned to receive infusions of Zytux, which is a rituximab biosimilar, according to a validated protocol. Clinical, functional, and quality of life (QoL) measurements were recorded at baseline, and seven further visits using the Myasthenia Gravis Foundation of America (MGFA), Myasthenia Gravis Composite (MGC), Myasthenia Gravis Activities of Daily Living profile (MG-ADL), and Myasthenia Gravis Quality of Life (MGQoL-15) scales. Besides, the post-infusion side effects were systematically assessed throughout the study.Results: The correlation analysis performed by generalized estimating equations analysis represented a significant reduction of MGC, MG-ADL, and MGQoL-15 scores across the trial period. The subgroup analysis based on the patients' clinical status indicated a significant effect for the interaction between time and MGFA subtypes on MG-ADL score, MGC score, and pyridostigmine prednisolone dose, reflecting that the worse clinical condition was associated with a better response to rituximab. Finally, no serious adverse event was documented.Conclusions: Rituximab therapy could improve clinical, functional, and QoL in patients with refractory MG in a safe setting. Further investigations with larger sample size and a more extended follow-up period are warranted to confirm this finding.Clinical Trial Registration: The study was registered by the Iranian Registry of Clinical Trials (IRCT) (Code No: IRCT20150303021315N18).


2017 ◽  
Vol 53 (1) ◽  
pp. 115-127
Author(s):  
Marina Milić Babić ◽  
Katarina Jović ◽  
Ksenija Napan

Williams syndrome is a rare genetic neurodevelopmental disorder, and the present study aimed to gain insights into the life experiences of affected children and the support available to them. This qualitative study is the first to explore the experiences of mothers of children with Williams syndrome in Croatia, which is home to 11 such children based on unofficial data. Thematic analysis of semi-structured interviews showed that mothers experienced in increase in emotional connection and intimacy among family members after the birth of the affected child, and that they received support from their husbands, other family members and other parents of affected children. At the same time, the mothers reported difficulties such as adjusting and harmonizing life roles, social isolation, lack of understanding from other people and daily care for the child. These findings may encourage and guide future research on improving the quality of life of children and adults suffering from rare diseases.


2020 ◽  
Vol 5 (4) ◽  
pp. 71
Author(s):  
Bruno Corrado ◽  
Benedetto Giardulli ◽  
Massimo Costa

Myasthenia gravis is a rare neuromuscular disorder characterized by muscle weakness and fatigue. This review analyzes the most recent evidence regarding the effectiveness and safety of different rehabilitative approaches to the disease. The review was carried out in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A total of 365 articles were found in the main scientific databases. Applying the inclusion/exclusion criteria, 11 studies were admitted to the final phase of the review. Three different rehabilitative approaches were identified: physical training, respiratory training, and balance training. All rehabilitative modalities contributed to enhancing functional outcomes, reducing fatigue, and improving quality of life, but currently none can be recommended over another for the lack of cross-comparative studies. The included studies showed methodological quality from low to fair. Despite the range of rehabilitative interventions available, there is a lack of high-quality evidence. However, this review suggests that a multidisciplinary rehabilitation approach should be recommended to people with myasthenia gravis, and above all, for those with mild to moderate symptomatology.


2017 ◽  
Vol 5 (2) ◽  
pp. 18
Author(s):  
Shereen Mohamed Mohamed ◽  
Catherine O'Neill

Background: Heart failure (HF) is a worldwide chronic and progressive condition. HF symptoms affect an individual’s life perspectives, and create dramatic changes in their everyday living routines. Qualitative studies showed that HF symptoms were associated with reported low quality of life, reduced physical activities, and altered social interactions and relationships. The aim of this study was to explore the experiences of men under the age of 65 diagnosed with HF living in the Kingdom of Bahrain.Methods: An interpretive phenomenological approach was used. In-depth, semi-structured interviews were conducted with six men under the age of 65 who were diagnosed with HF for a period of not less than a year. The interviews were conducted in Arabic, and then translated and transcribed into English. Smith’s framework was drawn on for data analysis.Results: Three main themes emerged: the physical burden of the illness; the psychosocial aspects of the illness and living with HF. The findings showed that the physical symptoms shaped men’s everyday work activities and also their resting and sleeping patterns. Participants expressed feelings of frustration, anger, and sadness following the diagnosis and recounted how their masculinity roles changed at home and in society. Families played a major role giving support to the men, who utilized different coping strategies, as lifestyle and behavioral modifications were adopted. Keeping faith and a belief in God, coupled with social support was a thread that connected all participants coping strategies. The authors recommend that educational programs for men who are diagnosed with HF and their families would help them cope with this chronic illness.Conclusions: Heart failure patients experience dramatic changes in their life. An understanding of the challenges they are facing in their daily living enables them, and those who care for them, both families and nurses, to creatively assist them live with the difficulties encountered with HF.


2021 ◽  
Vol 7 (3) ◽  
pp. 227-234
Author(s):  
Mahathir Mahathir ◽  
Wiwin Wiarsih ◽  
Henny Permatasari

Background: The progress of the fight against HIV is highlighted by significant change. HIV of the past is different from HIV of the present. Healthcare services have played an essential role in achieving the optimal goals needed to end the HIV epidemic. However, people living with HIV and those at risk of catching it (PLWH) often misunderstand the rapid growth of HIV healthcare service options.Objective: This study aimed to explore the experiences of PLWH in the healthcare services featured in this study.Methods: A qualitative phenomenological approach was used. Semi-structured interviews were conducted in 2017 with 12 PLWH who engaged with healthcare services in Jakarta, Indonesia, by using a purposive sampling technique. Semi-structured questions were asked which related to their experiences of using the services. Stevick Colaizzi Keen method was used to extract the thematic analysis of the study.Results: The study developed four essential themes of PLWH healthcare use. They were accessibility, availability at all healthcare levels, comprehensiveness of service, and affordability.Conclusion: Providing accessible healthcare services is considered essential by PLWH. It is also pivotal to helping people feel positive about the community-related healthcare services on offer. Nurse-led HIV services must maintain this progress by continuously evaluating the quality-of-service outcomes and promoting the accessibility of the services to the broader population.


2017 ◽  
Vol 6 (3) ◽  
pp. 327 ◽  
Author(s):  
Brittany Landrum ◽  
Catherine Guilbeau ◽  
Gilbert Garza

Previous literature has examined teachers’ motivations to teach in terms of intrinsic and extrinsic motives, personality dimensions, and teacher burnout. These findings have been cast in the rubric of differences between teachers and non-teachers and the linear relations between these measures among teachers. Utilizing a phenomenological approach (Giorgi, 1970) to analyze data generated in structured interviews with four tenured professors from small, liberal arts universities whose central mission is teaching, this paper presents the telic or project-ive horizons of teaching – those motives aimed at what is ‘not yet’ (Heidegger, 1927/1962). Results revealed that teaching is understood by teachers to be a dialogical enterprise between a teacher and learners across dimensions of transformation, knowledge, and personhood. This dialogue entailed an abiding tension between self and other, activity and passivity, giving and receiving, preparation and spontaneity, instructing and learning, leading and following, asserting and withdrawing. It comprised an orientation to a teachers’ vision for the possible future personhood of the teacher and their students and to the character of the world which teachers and learners inhabit together. These findings are discussed in terms of the reviewed literature and as a case in point for a vital complementarity of research approaches.


2021 ◽  
Vol 9 (2) ◽  
pp. 131-141
Author(s):  
Sofia Nurinawati ◽  
Fredrick Dermawan Purba ◽  
Laila Qodariah

Having an attention deficit hyperactivity disorder (ADHD) child is certainly not easy in her care. Mother, as the most dominant figure in her parenting, certainly experienced psychological impact. This study aims to describe the experience of mothers who are parenting with ADHD related to their quality of life. This research is qualitative research with a Phenomenological approach. The study participants consisted of 5 mothers of children with ADHD aged 36-45 years. Data retrieval is done using semi-structured interviews. Data analysis using thematic analysis. The quality of life in mothers of children with ADHD can be described through 23 themes divided into four domains of quality of life: physical, psychological, social, and environmental. In the physical domain, parenting with ADHD affects daily activities that cause mothers to feel tired. In the psychological domain, the mother feels a variety of feelings from the beginning of the diagnosis to during parenting. In the social relation domain, parenting with ADHD affects maternal relationships. In the environment domain, some costs need to be incurred for the child. Mothers are also able to get new information and lessons during parenting with ADHD.


Author(s):  
Suyatno Suyatno ◽  
Enung Hasanah ◽  
Wantini Wantini ◽  
Dholina Pambudi ◽  
Supardi Supardi

The meaning in work is predicted to increase a person's commitment and quality. Teachers with high work commitment are the main predictors of the quality of learning and school organization, while those with low commitment and quality increases cases of teacher turnover. This research aims to explore how private teachers in Indonesia analyze meaning in work and its impact on their work commitment. The phenomenological approach was used in this study to explore the essence of the participants' experiences. Semi-structured interviews were carried out to collect data on 15 private primary and secondary school teachers in Indonesia that have worked for more than five years. The subjects were chosen based on their initial research, which has a high meaning in work. The results showed that the meaning in teachers work is formed because it is driven by (1) the feeling of having the opportunity to self-actualize, (2) pride of their work, and (3) high religious attitude. These three factors ultimately encourage teachers’ commitment to work. The research recommends the importance of the principal's policy to support the formation of teacher meaning in work. Furthermore, teachers can also take advantage of these findings by maximizing antecedent factors to increase meaning in work.


2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 292.2-293
Author(s):  
S. Battista ◽  
M. Manoni ◽  
A. Dell’isola ◽  
M. Englund ◽  
A. Palese ◽  
...  

Background:The care process is often a complex and intimate process experienced by patients. Osteoarthritis (OA) care is usually characterised by multimodal interventions that consider the broader array of symptoms and functional limitations and often require a high level of patients’ compliance. Despite efforts to improve the quality of care of patients suffering from OA, and the publication of state-of-the-art clinical practice guidelines [1], the quality of the care process, as experienced by patients, seems to be suboptimal [2]. Hence, it is essential to investigate how patients experience this process to highlight potential elements that can enhance or spoil it to optimise the care quality.Objectives:To explore the patients’ experience of the received OA care process.Methods:Qualitative study, 10 semi-structured interviews were performed. The interview guide was created by a pool of healthcare professionals (physiotherapists, psychologists, nurses) and expert patients. It investigated the emotional experience, beliefs, expectations, perceived barriers and facilitators towards conservative treatments perceived by patients suffering from OA. The interviews lasted approximately one hour, were transcribed verbatim and analysed independently by two authors, who labelled their core parts to find categories and subcategories. A theme-based analysis was performed following an ecological paradigm, naturalistic epistemology, philosophy of phenomenological research.Results:Our analysis revealed 7 main categories with several subcategories (Fig. 1). 1) Uncertainty as some patients perceived treatment choice not to be based on medical evidence “there is an almost religious way of thinking on how to deal with the pathology. It is not an exact science when you choose the physicians you choose the treatment”. 2) Relationship with the self and the others as some patients did not feel understood or even shameful and hopeless about their condition. 3) Patients’ and Health Professionals’ beliefs about the pathology management where common thoughts were the perceived (ab)use of passive therapies, the movement as something dangerous and that OA is “something that you try to resist to, but (surgery) is your destiny”. 4) facilitators and 5) barriers of the adherence to therapeutic exercise that revolve around the cost of the therapy, the time needed and the willingness to change life habits. 6) Patients’ attitudes towards pathology in which the oldest patients perceive OA as “something I have to accept since I am getting old” and the youngest as “Something I have to fight”. 7) Relationship with food in which diet is seen as something that “you force yourself to follow” which is useful only to lose weight and not to preserve a high health status and where overeating is used “to eat your feelings”.Figure 1.Categories and Subcategories stemmed from the analysis of the patients’ interviewsConclusion:Patients suffering from hip and knee OA seem to experience an uncertain care process. The lack of clear explanations and the attitude towards conservative treatment, which is considered as “a pastime while waiting for surgery,” fosters the importance of providing patients with adequate information about the treatment, to shift their beliefs and improve their awareness. This will enhance a patient-centred and shared decision-making treatments.References:[1]Fernandes L, Hagen KB, Bijlsma JWJ, et al. EULAR recommendations for the non-pharmacological core management of hip and knee osteoarthritis. Ann. Rheum. Dis. 2013;72:1125–35.[2]Basedow M, Esterman A. Assessing appropriateness of osteoarthritis care using quality indicators: a systematic review. J Eval Clin Pract 2015;21:782–9.Acknowledgements:This work is part of the project funded by EULAR Health Professionals Research Grant 2020.Disclosure of Interests:None declared


2021 ◽  
Vol 18 (1) ◽  
Author(s):  
Carol Y. Franco ◽  
Angela E. Lee-Winn ◽  
Sara Brandspigel ◽  
Musheng L. Alishahi ◽  
Ashley Brooks-Russell

Abstract Background Syringe services programs provide sterile injection supplies and a range of health services (e.g., HIV and HEP-C testing, overdose prevention education, provision of naloxone) to a hard-to-reach population, including people who use drugs, aiming to prevent the transmission of infectious diseases. Methods We performed a qualitative needs assessment of existing syringe services programs in the state of Colorado in 2018–2019 to describe—their activities, needs, and barriers. Using a phenomenological approach, we performed semi-structured interviews with key program staff of syringe services programs (n = 11). All interviews were digitally recorded, transcribed, and validated. A data-driven iterative approach was used by researchers to develop a coding scheme to organize the data into major themes found across interviews. Memos were written to synthesize main themes. Results Nearly all the syringe program staff discussed their relationships with law enforcement at length. All syringe program staff viewed having a positive relationship with law enforcement as critical to the success of their program. Main factors that influence the quality of relationships between syringe services programs and law enforcement included: (1) alignment in agency culture, (2) support from law enforcement leadership, (3) police officers’ participation and compliance with the Law Enforcement Assisted Diversion (LEAD) program, which provides intensive case management for low-level drug offenders, and (4) implementation of the “Needle-Stick Prevention Law” and Drug Paraphernalia Law Exemption. All syringe program staff expressed a strong desire to have positive relationships with law enforcement and described how a collaborative working relationship was critical to the success of their programs. Conclusions Our findings reveal effective strategies to foster relationships between syringe services programs and law enforcement as well as key barriers to address. The need exists for both syringe services programs and law enforcement to devote time and resources to build a strong, positive partnership. Having such positive relationships with law enforcement has positive implications for syringe services program clients, including law enforcement being less likely to ticket persons for having used syringes, and encourage people who use drugs to seek services from syringe services programs, which can then lead them to other resources, such as housing, wound care, and substance use treatment programs.


Sign in / Sign up

Export Citation Format

Share Document