scholarly journals Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Jason A. Randall ◽  
Aiste Guobyte ◽  
Laure Delbecque ◽  
Louise Newton ◽  
Tara Symonds ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Lived Experience ◽  
Thematic Analysis ◽  
Gastrointestinal Disease ◽  
The United States ◽  
Self Report ◽  
Related Quality ◽  
High Level

Abstract Background Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one’s most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2–11 years) living with UC. Methods Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5–11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2–4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis. Results Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life. Conclusions Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8–11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8–11 years age group.

Health-Related Quality of Life During the Menopausal Transition: Testing a Theoretical Model

2016 ◽  
Vol 30 (2) ◽  
pp. 143-160 ◽  
Author(s):  
Hyunjeong Shin ◽  
Young-Joo Park
Keyword(s):  
Quality Of Life ◽  
Path Analysis ◽  
The United States ◽  
Self Report ◽  
Menopausal Transition ◽  
Health Related Quality ◽  
Convenience Sample ◽  
Related Quality ◽  
Health Related

The purpose of this study was to test the hypothetical model of health-related quality of life (HRQOL) during the menopausal transition. The model was developed to test specific components of the Wilson and Cleary’s model for HRQOL. A cross-sectional, correlational study was carried out using self-report questionnaires on a convenience sample of 162 Korean women in the menopausal transition. The model was tested by a path analysis using Analysis of Moment Structure (AMOS) program. The path analysis showed that 5 affecting variables explained 69% of the variance in HRQOL during the menopausal transition. Based on the results, the Wilson and Cleary’s model may be useful in explaining HRQOL during the menopausal transition. Symptoms, functional status, and health perceptions mediated the effect of individual and environmental characteristics on HRQOL. However, the results suggest that some paths need to be added or modified in the model. To date, most research using Wilson and Cleary’s model has been conducted in the United States, Africa, and Europe (e.g., Austria, Norway, and Spain). This study shows the applicability of the model in Asian people.

The Vietnamese Version of the Health-related Quality of Life Measure for Children with Epilepsy (CHEQOL-25): Reliability

MedPharmRes ◽  
2017 ◽  
Vol 1 (1) ◽  
pp. 9-14
Author(s):  
Tri Doan ◽  
Tuan Tran ◽  
Han Nguyen ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Good Practice ◽  
The Self ◽  
Self Report ◽  
Health Related Quality ◽  
Life Measure ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.

A Review of Studies of the Association of Vision-Related Quality of Life with Measures of Visual Function and Structure in Patients with Glaucoma in the United States

2021 ◽  
Vol 28 (3) ◽  
pp. 265-276
Author(s):  
Naira Khachatryan ◽  
Maxwell Pistilli ◽  
Maureen G. Maguire ◽  
Angela Y. Chang ◽  
Marissa R. Samuels ◽  
...  
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Visual Function ◽  
The United States ◽  
Related Quality

scholarly journals Psychosomatic interactions in kidney transplantation: role of personality dimensions in mental health-related quality of life

2021 ◽  
Vol 12 ◽  
pp. 204062232110243
Author(s):  
Federica Guerra ◽  
Jessica Ranieri ◽  
Domenico Passafiume ◽  
Diana Lupi ◽  
Daniela Maccarone ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Kidney Transplantation ◽  
Health Related Quality ◽  
Personality Dimensions ◽  
Related Quality ◽  
Health Related ◽  
Body Self ◽  
High Level

Background and aims: The increase in innovative and personalized medicine solutions in kidney surgery can improve patients’ chances of survival; however, during the transplantation process, patients are exposed to many psychological challenges. This study aimed to evaluate the role and impact of personality dimensions on the behaviour of waiting-list patients towards the post-surgery adaptation process. Method: The participants were 113 out-patients aged 18–70 years (mean age 54.7 years, SD ± 9.9) who had received a kidney transplant at least 3 years prior to the study. Results: The results of the study revealed that personality dimensions can predict mental health-related quality of life after kidney transplantation; in particular, the dimensions play an important role in patients’ behavioural ability to manage their quality of life both during end-stage renal disease and after kidney transplantation. Psychological distress and anxiety were associated with a low level of the conscientiousness dimension, while a high level of the openness dimension was associated with a high level of psychological distress and stress. In addition, body self-perception was associated with personality dimensions. Conclusion: Personality dimensions were found to predict behavioural reactions when emotional traits and body self-perception for each patient were combined; clinical psychologists could apply personalized intervention by modeling the treatments step by step and mitigating the negative effects of the whole kidney transplantation disease, thus helping the individual to adapt to a new life.

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