scholarly journals PROBLEMS OF FAMILIES WITH A CHILD WITH AN INCURABLE DISEASE IN THE CONTEXT OF SPECIAL EDUCATION

2016 ◽  
Vol 4 ◽  
pp. 676-682
Author(s):  
Kristína Nagyová ◽  
Terézia Harčaríková
Keyword(s):  
Quality Of Life ◽  
Special Education ◽  
Education Research ◽  
Structured Interview ◽  
Research Data ◽  
Comprehensive Care ◽  
Oncological Disease ◽  
Interview Method ◽  
Incurable Disease

The issue of incurable diseases, today, represents a relatively current and urgent topic because, despite the development of medicine and comprehensive care for individuals with an incurable disease, there is a continual increase in the number of such diseases associated with secondary problems that have a crucial bearing on the quality of life for the individuals and their family in both a broader and narrower context. An important role in the comprehensive care of individuals with an incurable disease is special education, because in addition to education it deals with the stigma attached to the care and education of families with a child with an incurable disease. The paper presents the partial results of research focused on the problems of individuals with oncological disease in the context of special education. Research data were obtained by a variety of methods, where the most crucial were the semi-structured interview method and the method of narration. These methods were applied on individuals with oncological disease who had been diagnosed with cancer during the time of schooling. The obtained data were processed by qualitative analysis. The results indicate that this issue requires greater consideration.

scholarly journals Fenomenologia da Qualidade de Vida de Mães de Crianças Autistas

2020 ◽  
Vol 26 (2) ◽  
pp. 122-134
Author(s):  
Maria P. M CHAIM ◽  
Sebastião B. C. NETO, ◽  
Aminn y F. PEREIRA, ◽  
Virgínia E. S. M. COSTA
Keyword(s):  
Quality Of Life ◽  
Children With Autism ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Primary Objective ◽  
Public Health Services ◽  
Children With Asd ◽  
The Individual ◽  
Phenomenological Psychopathology

The quality of life (QOL) of mothers of children with autism spectrum disorder (ASD) is related to the symptomatic and idiopathic characteristics of the existential condition of the child and is determined by the subjective understandings attributed according to the individual experience. The primary objective of this article is to describe and understand the subjective constructs about the self-referenced QOL of mothers of children with ASD. It is an empirical study, qualitative and based on a reading of phenomenological psychopathology. Participated 10 mothers of children with ASD, users of public health services in Goiânia. The following instruments were used: a sociodemographic and clinical data questionnaire and a semi-structured interview script about QOL. The interviews were submitted to the construction of thematic categories, according to the methodology of Giorgi (1985), and later were correlated with the existential categories of Augras (2004). It was observed that although a standard is sought to understand QOL, each mother has subjective factors that reflect in her way of experiencing the condition of being a mother of a child with special needs. It is concluded that it is the science, when seeking to understand the quality of life of people with similar characteristics, to consider the relevance of the subjective aspects and the meaning that each mother constructs of its own reality.

scholarly journals Factors associated with quality of life among cancer patients in Sri Lanka

2018 ◽  
Vol 5 (7) ◽  
pp. 2705 ◽  
Author(s):  
Dilka Rukshani ◽  
Pabasara Kahandawala ◽  
Kasun Jayawardana ◽  
Dilan Karunarathne ◽  
Lahiru S. Galgamuwa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sri Lanka ◽  
Family Support ◽  
Cancer Patients ◽  
Modern Method ◽  
Value Systems ◽  
Continuous Family ◽  
Incurable Disease ◽  
Education Status

Background: Quality of life (QOL) is individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is an effective modern method of early identification of chronic incurable disease patients. This study was designed to determine the level and the possible contributory factors of quality of life in heterogeneous groups of cancer patients in Sri Lanka.Methods: This study was conducted at National Cancer Institute of Sri Lanka. WHOQOL-BREF questionnaire was used to assess QOL of cancer patients. Multivariate linear regression model was used to evaluate the associations of demographic variables, clinical characteristics, and social support status with the quality of life measures.Results: 167 of cancer patients were participated. The mean overall QOL score was 53.07±SD 12.68. Higher QOL was associated with patients who were married, higher educated, employed, had good family support and longer duration of illness. Significantly lower QOL was found in those who involved on radiotherapy treatments and feeling alone. Marital status, education status, comorbidity, family support and feeling alone were identified as predictors for QOL among the study group.Conclusions: The overall QOL score was considerably low in our study. Continuous family support and good education may significantly improve the QOL of cancer patients. Psychosocial and awareness programs to the family members and neighbours should be implemented to enhance the quality of life of cancer patients. 

scholarly journals ‘Quality of Life’ of Persons with Disability: An Assessment in Selected Flood Prone Areas of Bangladesh

2017 ◽  
Vol 1 (1) ◽  
pp. 1-21
Author(s):  
Mir Hasan Shakil Mahmud ◽  
Md. Abul Kalam Azad
Keyword(s):  
Quality Of Life ◽  
Psychological Health ◽  
Quantitative Research ◽  
Structured Interview ◽  
Poor Quality ◽  
Persons With Disabilities ◽  
Prone Area ◽  
Post Disaster ◽  
Flood Prone Areas

The present study is on “Quality of Life” of person with disabilities living in flood prone areas of Bangladesh. In this aspect the specific objectives have been designed to determine the effects of disaster on physical and psychological health and social relationship between disabilities and community. The study has also assessed the adaptive capacity of persons with disabilities during and post-disaster period and find out the challenges faced by the persons with disabilities during disaster and post disaster that undermining their quality of life. In the determination of quality of life of PWDs in the selected flood prone area in Bangladesh a mixed method incorporating both qualitative and quantitative research approaches was used to conduct this study by using the tools of observation, case study, and face to face semi structured interview, with PWDs in Northern district of Gaibandha. The study shows that out of 110 respondent, nearly 63 per cent required assistance, while over 38 per cent respondent are required partial assistance, and 20 percent are required supervision. The study reveals that more than 9 per cent of the respondents maintains very poor quality of life while 20 per cent are maintaining poor quality of life, nearly 34 per cent respondents are identified their life neither poor or nor good in selected area.

scholarly journals Qualidade de vida de crianças submetidas à cistoenteroplastia e cuidadores*

2019 ◽  
Vol 13 ◽  
Author(s):  
Larissa Faquim Bazaga ◽  
Gisele Martins
Keyword(s):  
Quality Of Life ◽  
Postoperative Period ◽  
Structured Interview ◽  
Social Aspect ◽  
Rehabilitation Hospital ◽  
Calidad De Vida ◽  
Quality Of Life Inventory ◽  
Final Sample ◽  
Life Inventory

Quality of life of children submitted to cystentoplasty and caregiversObjective: to evaluate the quality of life (QOL) of children with myelomeningocele who underwent cystenteroplasty in 2006-2016 and their caregivers. Method: this is a descriptive mixed study, conducted in a rehabilitation hospital, with a final sample of 16 participants, using the generic Pediatric Quality of Life Inventory instrument and a structured interview for the specific condition. The results were presented in tables and statements. Results: eight dyads participated in the study, being that “physical capacity” and “social aspect” were the domains with the most divergent perspective, whereas “emotional aspect” and “school activity” were more convergent. QoL was affected negatively in the immediate postoperative period due to prolonged fasting and the use of nasogastric tube and, in the late postoperative period, was positively attributed to the acquisition of social continence, lower frequency of urinary tract infection and greater independence of children. Conclusion: it is concluded that the perception of QOL of patients submitted to cystenteroplasty and their caregivers was improved after this surgery. Descriptors: Child; Adolescent; Quality of Life; Pediatric Nursing; Neurogenic Urinary Bladder; Nursing.RESUMO Objetivo: avaliar a qualidade de vida (QV) de crianças com mielomeningocele submetidas à cistoenteroplastia, nos anos de 2006-2016, e de seus cuidadores. Método: trata-se de um estudo misto, descritivo, realizado em um hospital de reabilitação, com uma amostra final composta por 16 participantes, utilizando-se o instrumento genérico Pediatric Quality of Life Inventory e uma entrevista estruturada para a condição específica. Apresentaram-se os resultados em forma tabelas e depoimentos. Resultados: elencaram-se para participar do estudo oito díades, sendo que “capacidade física” e “aspecto social” foram os domínios com a perspectiva mais divergente, ao passo que “aspecto emocional” e “atividade escolar” foram mais convergentes. Afetou-se a QV no pós-operatório imediato negativamente devido ao jejum prolongado e ao uso de sonda nasogástrica e, no pós-operatório tardio, foi positivamente atribuída à aquisição da continência social, menor frequência de infecção do trato urinário e maior independência das crianças. Conclusão: conclui-se que a percepção da QV de pacientes submetidos à cistoenteroplastia e seus cuidadores foi melhorada após a realização dessa cirurgia. Descritores: Criança; Adolescente; Qualidade de Vida; Enfermagem Pediátrica; Bexiga Urinária Neurogênica; Enfermagem.RESUMENObjetivo: evaluar la calidad de vida (CV) de los niños con mielomeningocele sometidos a cistenteroplastia en los años 2006-2016 y sus cuidadores. Método: este es un estudio descriptivo mixto, realizado en un hospital de rehabilitación, con una muestra final de 16 participantes, utilizando el instrumento genérico Pediatric Quality of Life Inventorye una entrevista estructurada para la condición específica. Los resultados se presentaron en tablas y declaraciones. Resultados: ocho díadas participaron en el estudio, ya que la "capacidad física" y el "aspecto social" fueron los dominios con la perspectiva más divergente, mientras que el "aspecto emocional" y la "actividad escolar" fueron más convergentes. La calidad de vida se vio afectada negativamente en el postoperatorio inmediato debido al ayuno prolongado y el uso de sonda nasogástrica y, en el postoperatorio tardío, se atribuyó positivamente a la adquisición de continencia social, una menor frecuencia de infección del tracto urinario y una mayor independencia de los niños. Conclusión: se concluye que la percepción de la calidad de vida de los pacientes sometidos a cistenteroplastia y sus cuidadores mejoró después de esta cirugía. Descriptores: Niño; Adolescentes; Calidad de Vida; Enfermería Pediátrica; Vejiga Urinaria Neurogénica; Enfermería.

Gambaran Kualitas Hidup Pekerja Pra Lanjut Usia (45-56 Tahun) Dengan Sindrom Metabolik Di PT. X Tahun 2020

2021 ◽  
Vol 2 (3) ◽  
pp. 114-127
Author(s):  
Fierdania Yusvita ◽  
Putri Handayani ◽  
Nadya Shinta Nandra
Keyword(s):  
Quality Of Life ◽  
Metabolic Syndrome ◽  
Health Condition ◽  
Mental Condition ◽  
Degenerative Diseases ◽  
Interview Method ◽  
Qualitative Descriptive ◽  
Obesity Hypertension ◽  
Descriptive Method

Quality of life can be determined by the individual's perception of his current life, including his health condition. Among occupational diseases, degenerative diseases are the first cause of death, and metabolic syndrome is one of them. This study aims to describe the quality of life of pre-elderly workers (45-56 years) with the risk of metabolic syndrome (obesity, hypertension, hypercholesterolemia and hyperglycemia) at PT. X. The research was conducted with a qualitative descriptive method. Data was collected by interview method and the results of medical check-up documents. The results showed that the respondents rated their quality of life quite well. They judged that his current physical condition was quite good. Respondents do not know that their current health condition can trigger degenerative diseases in the future if sedentary behavior is still ignored. Five of the seven respondents still do not exercise regularly and three of the seven respondents are active smokers with cigarette consumption of 3-20 cigarettes/day. The seven respondents did not pay enough attention to their food intake. Psychologically, respondents perceive their mental condition is very good, they perceive the work environment as a very comfortable place to build social relationships. More metabolic syndrome related support programs at PT X need to be offered to increase workers' awareness of their health status.

Effects of epilepsy education on the academic achievement and quality of life of children with epilepsy

2021 ◽  
Vol 17 (6) ◽  
pp. 231-238
Author(s):  
Hatice Yildirim Sari ◽  
Özge Uzun ◽  
Nihal Olgaç Dündar
Keyword(s):  
Quality Of Life ◽  
Academic Achievement ◽  
Special Education ◽  
Academic Success ◽  
Significant Difference ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Post Test ◽  
Epilepsy Education

Background: Epilepsy can have a huge impact on children's quality of life and participation and attainment at school, particularly if the condition is poorly managed. Aims: The aim of this study is to investigate the effect of education about disease and drug management given to children, their family and teachers on the academic success and quality of life of the child. Design: The study was a single group, pre-test, post-test, semi-experimental research study. Methods: The study was carried out in the paediatric neurology outpatient clinic of the Tepecik Education and Research Hospital in Turkey. The study sample comprised 65 people (25 patients, 25 parents and 15 teachers) who completed the pre-test and post-test assessments. The Sociodemographic Characteristics Questionnaire, the Quality of Life Scale in Children with Epilepsy and an academic achievement form were completed before the epilepsy education was given. Parents and children had training at the hospital. The teachers had telephone training. Some 3 months after the training, the scores for the Quality of Life Scale in Children with Epilepsy and the academic achievement form were reassessed. Findings: The comparison of the pre- and post-training Quality of Life scale scores of the children (p=0.000) and academic achievement scores of the children (p=0.017; n=15) demonstrated a significant increase. There was a significant difference between the quality of life scores of the participating children who received special education and those of the children who did not receive special education (p=0.007 and p=0.004, respectively). Conclusions: The results of the present study suggest that providing training on epilepsy, not only for children but also for their families and teachers, would be beneficial.

scholarly journals A home-based comprehensive care model in patients with Multiple Sclerosis: A study pre-protocol

F1000Research ◽  
2015 ◽  
Vol 4 ◽  
pp. 872 ◽  
Author(s):  
Lufei Young ◽  
Kathleen Healey ◽  
Mary Charlton ◽  
Kendra Schmid ◽  
Rana Zabad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Intervention Group ◽  
Care Program ◽  
Comprehensive Care ◽  
Care Model ◽  
Patient Centered ◽  
Home Based ◽  
Comprehensive Care Model

Background Disability is prevalent in individuals with multiple sclerosis (MS), leading to difficulty in care access, significant caregiver burden, immense challenges in self-care and great societal burden.  Without highly coordinated, competent and accessible care, individuals living with progressive MS experience psychological distress, poor quality of life, suffer from life-threatening complications, and have frequent but avoidable healthcare utilizations. Unfortunately, current healthcare delivery models present severe limitations in providing easily accessible, patient-centered, coordinated comprehensive care to those with progressive MS. We propose a home-based comprehensive care model (MAHA) to address the unmet needs, challenges, and avoidable complications in individuals with progressive MS with disabling disease.Objective The article aims to describe the study design and methods used to implement and evaluate the proposed intervention.  Method The study will use a randomized controlled design to evaluate the feasibility of providing a 24-month, home-based, patient-centered comprehensive care program to improve quality of life, reduce complications and healthcare utilizations overtime (quarterly) for 24 months. A transdisciplinary team led by a MS-Comprehensivist will carry out this project. Fifty MS patients will be randomly assigned to the intervention and usual care program using block randomization procedures. We hypothesize that patients in the intervention group will have fewer complications, higher quality of life, greater satisfaction with care, and reduced healthcare utilization. The proposed project is also expected to be financially sustainable in fee-for-service models but best suited for and gain financial success in valued-based care systems.  Discussion This is the first study to examine the feasibility and effectiveness of a home-based comprehensive care management program in MS patients living with progressive disability. If successful, it will have far-reaching implications in research, education and practice in terms of providing high quality but affordable care to population living with severe complex, disabling conditions.

scholarly journals Pain Characteristics and Associations with Quality of Life in Patients with Multiple Sclerosis in Lithuania

Medicina ◽  
2020 ◽  
Vol 56 (11) ◽  
pp. 596
Author(s):  
Greta Veličkaitė ◽  
Neringa Jucevičiūtė ◽  
Renata Balnytė ◽  
Ovidijus Laucius ◽  
Antanas Vaitkus
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Neuropathic Pain ◽  
Short Form ◽  
Depression Scale ◽  
Structured Interview ◽  
Anxiety And Depression ◽  
Control Group ◽  
And Control

Background and objectives: Even though pain in multiple sclerosis (MS) patients is common and possibly associated with reduced quality of life, its exact prevalence and characteristics remain vaguely understood. We aimed to estimate the true extent of pain and its associations with quality of life in Lithuanian MS patients and to compare this data with that of a control group. Materials and Methods: Data were collected prospectively at the Department of Neurology, Lithuanian University of Health Sciences Kaunas Clinics. A face-to-face structured interview and a questionnaire were used to collect demographic and clinical data of the MS (n = 120) and control (n = 120) groups. The Expanded Disability Status Scale (EDSS) was used to quantify disability in the MS group. Scores ≥4/10 in the Douleur Neuropathique 4 questionnaire were classified as neuropathic pain. Patients were evaluated using the anxiety and depression subsets of the Hospital Anxiety and Depression Scale (HADS-A and HADS-D), the physical and mental component subsets of the Short Form-12 questionnaire (PSC-12 and MSC-12). Results: The MS and control groups did not differ in pain prevalence (76.7% vs. 65.9%, p = 0.064) or intensity. Lhermitte sign, lower limb, and face pain were more common in the MS group, whereas subjects in the control group were more often affected by lower back, neck, and joint pain. Neuropathic pain and pain lasting longer than 2 years were more common among pain-affected MS patients than among controls. MS patients with pain had higher EDSS, HADS-D, and HADS-A and lower PSC-12 scores than those without pain; however, no difference was found regarding the duration of MS or age. Males with MS and pain had higher MSC-12 and HADS-D scores in comparison to the same subset of females. Conclusions: Pain affects approximately three out of four patients with MS in Lithuania and is negatively associated with the mental and physical aspects of quality of life.

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