scholarly journals Quality of Life in Caregivers of Children and Adolescents with Autistic Spectrum Disorder: Development and Validation of the Questionnaire

2021 ◽  
Vol 11 (7) ◽  
pp. 924
Author(s):  
Claudia B. Pratesi ◽  
Alessandra Baeza Garcia ◽  
Riccardo Pratesi ◽  
Lenora Gandolfi ◽  
Mariana Hecht ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Children And Adolescents ◽  
Internal Consistency ◽  
Autistic Spectrum Disorder ◽  
Spectrum Disorder ◽  
Autistic Spectrum ◽  
The Social ◽  
Health Domains

Studies have shown that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting parents’ and caregivers’ quality of life (QoL). Despite studies on this subject, there is no specific questionnaire to evaluate QoL in parents or caregivers of children and adolescents with an autistic spectrum disorder (ASD) in Brazil. Therefore, this study’s primary purpose was to develop and validate a specific questionnaire to evaluate QoL in these individuals. The study was performed using the following steps: development of the ASD Parent/caregiver QoL questionnaire (autistic spectrum disorder parent/caregiver quality of life—ASDPC-QoL), subjective evaluation, validation of the questionnaire by the Delphi method, assessment of internal consistency, responsiveness, and reliability of the ASLPC-QoL, and administration of the questionnaire to 881 Brazilian ASD caregivers or parents. ASDPC-QoL comprises 28 questions divided into four domains (social, concerns, physical and mental health) with good psychometric properties (reproducibility, reliability, internal consistency, responsiveness, and validity). Our data showed that worries and physical health were the domains with the lowest scores in ASDPCA-QoL. ASDPCA-QoL did not differ among gender and age of child considering the total and all domains. Older participants (≥41 y/o) presented the best scores for social and worries domains but did not differ in other domains and the total. Parents or caregivers of ASD children diagnosed for more than three years have better mental and physical health domains than those recently diagnosed (up to 1 year) but did not differ in the total and other domains. Individuals with a partner and with the highest educational level present the best score for the social domain. Employed individuals showed better scores than unemployed ones for all domains and the total, except for worries, which did not differ. It also occurred comparing the individuals that do not use antidepressants and the ones that use them. Assessing and better understanding the QoL of caregivers is highly relevant. By understanding the social, worries, physical, and emotional health domains of caregivers, it is possible to track harmful aspects, prevent and treat pathologies, in addition to assisting in the implementation of effective public policies.

scholarly journals Quality of Life and Symptom Burden 1 Month After Concussion in Children and Adolescents

2018 ◽  
Vol 58 (1) ◽  
pp. 42-49 ◽  
Author(s):  
David R. Howell ◽  
Julie C. Wilson ◽  
Michael W. Kirkwood ◽  
Joseph A. Grubenhoff
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Children And Adolescents ◽  
Symptom Burden ◽  
Psychosocial Health ◽  
Post Injury ◽  
Persistent Symptoms ◽  
Patient Reported ◽  
A Prospective Study

We conducted a prospective study of children and adolescents (n = 176; mean age = 13.0 ±2.7 years; 38% female) assessed acutely post-concussion and again 30 days later. We investigated the association between symptom burden and quality of life (QOL) outcomes, as well as the effect of age on QOL. We assessed QOL using patient-reported Pediatric Quality of Life Inventory 4.0, and symptoms using the Health and Behavior Inventory (HBI). Acute (<2 days post-injury) HBI ratings demonstrated a low correlation ( R2 = 0.08) with physical health QOL and a moderate correlation with psychosocial health QOL ( R2 = 0.21) 30 days post-concussion. HBI ratings 30 days post-concussion demonstrated a moderately high correlation with physical health QOL ( R2 = 0.35) and psychosocial health QOL ( R2 = 0.57). Age was not significantly associated with physical or psychosocial QOL ratings. Impairments in QOL following concussion may identify children and adolescents who need additional referral to address persistent symptoms at this time.

scholarly journals Age categories differences in subjective quality of life of women with physical disabilities

2021 ◽  
Vol 60 (2) ◽  
pp. 124-130
Author(s):  
Dagmar Nemček ◽  
Patrícia Shtin Baňárová ◽  
Petra Kurková
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Social Relations ◽  
Psychological Health ◽  
Physical Disabilities ◽  
Subjective Quality ◽  
Subjective Quality Of Life ◽  
The Social ◽  
Women With Physical Disabilities

Abstract Objective The objective of the study was to analyse and compare the subjective quality of life (S-QoL) of women with physical disabilities (PDs) through satisfaction with the quality of life domains and the overall quality of life assessment. Methods The sample comprised of women with PDs (n=137), divided into 4 age categories: 19-29 yrs. (n=53); 30-44 yrs. (n=25); 45-59 yrs. (n=24) and over 60 yrs. (n=35). The Subjective Quality of Life Analyses questionnaire and the WHO User Manual were used as a primary research method. The Wilcoxon Signed Rank Test was used to assess the differences between QoLDs, Kruskal Wallis test to assess differences in S-QoL among four independent groups and Mann Whitney U-test between two age categories. Results The highest satisfaction in all age categories of women was found in the social relations domain, and in the 19-29 yr-old women equally in the social relations and physical health domains. The highest dissatisfaction was reported with the psychological health and environment domains. The key finding is that the main differences are between the youngest category (aged 19-29 yrs) and the three older categories with regard to physical health, environment and overall QoL. Conclusions It is necessary to continue this line of research with a greater focus on exploring the ways in which the psychological health domain can be improved as an integral part of S-QoL, and to also focus on the QoL indicators that make up the environment domain and search for ways to enhance these.

Late-onset Pompe disease primarily affects quality of life in physical health domains

Neurology ◽  
2004 ◽  
Vol 63 (9) ◽  
pp. 1688-1692 ◽  
Author(s):  
M. L.C. Hagemans ◽  
A. C.J.W. Janssens ◽  
L. P.F. Winkel ◽  
K. A. Sieradzan ◽  
A. J.J. Reuser ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Pompe Disease ◽  
Late Onset ◽  
Health Domains

Age Weights for Health Services Derived from the Relative Social Willingness-to-Pay Instrument

2016 ◽  
Vol 37 (3) ◽  
pp. 239-251 ◽  
Author(s):  
Jeff Richardson ◽  
John McKie ◽  
Angelo Iezzi ◽  
Aimee Maxwell
Keyword(s):  
Quality Of Life ◽  
Health Services ◽  
Willingness To Pay ◽  
Physical Health ◽  
Survey Respondent ◽  
Life Saving ◽  
The Social ◽  
Life Improvement ◽  
Social Valuation

The effect of a patient’s age on the social valuation of health services remains controversial, with empirical results varying in magnitude and implying a different age-value profile. This article employs a new methodology to re-examine these questions. Data were obtained from 2 independent Web-based surveys that administered the Relative Social Willingness to Pay instrument. In the first survey, the age of the patient receiving a life-saving service was varied. Patients were left with either poor mental or physical health. In the second survey, patient age was varied for a service that fully cured the patient’s poor mental or physical health. In total, therefore, 4 sets of age weights were obtained: weights for life-extending services with poor physical or mental health outcomes and weights for quality-of-life improvement for patients in poor mental or physical health. Results were consistent. Increasing age was associated in each case with a monotonic decrease in the social valuation of the services. The decrease in value was quantitatively small until age 60 years. By age 80 years, the social value of services had declined by about 50%. The decline commenced at an earlier age in the context of physical health, although the magnitude of the decrement by age 80 years was unrelated to the type of service. With 1 exception, there was little difference in the valuation of services by the age of the survey respondent. Respondents aged >60 years placed a lower, not higher, value on quality-of-life improvement for elderly individuals than other respondents. There was no difference in the valuation of life-extending services.

scholarly journals From social interaction to autonomy: playful aquatic experiences for children with autistic spectrum disorder

1989 ◽  
Author(s):  
Kamila Gomes ◽  
◽  
Wihanna Franzoni ◽  
Alcyane Marinho ◽  
◽  
...  
Keyword(s):  
Social Interaction ◽  
Autistic Spectrum Disorder ◽  
Participant Observation ◽  
Field Research ◽  
Spectrum Disorder ◽  
Systematic Observation ◽  
Structured Interviews ◽  
Autistic Spectrum ◽  
Governmental Organization ◽  
The Social

This study analyze playful aquatic experiences in the facilitated by a non-governmental organization in Florianópolis (SC) for the social interaction of children with Autistic Spectrum Disorder (ASD). This study is qualitative approach, in which three field research instruments were used: systematic observation, participant observation and semi-structured interviews. Among the participants are five children with ASD, seven professionals and four family members. Among the results, the aspects intrinsic to the formatting of musical experiences acted as facilitators of moments of social interaction between children with TEA and OS, and three of these children demonstrate motivation to get involved and create games and interest in social interaction. In conclusion, the playful experiences made it possible for children to cultivate verbal or gestural communication skills and create bonds of trust with volunteers and other children.

Quality of life of children and adolescents with visual impairment

2018 ◽  
Vol 36 (1) ◽  
pp. 42-56 ◽  
Author(s):  
Olivete Oliveira ◽  
Célia Ribeiro ◽  
Cristina Simões ◽  
Paulo Pereira
Keyword(s):  
Quality Of Life ◽  
Construct Validity ◽  
Visual Impairment ◽  
Conceptual Framework ◽  
Psychometric Properties ◽  
Children And Adolescents ◽  
Internal Consistency ◽  
Low Vision ◽  
The Mean

The conceptual framework of quality of life (QOL) have received considerable attention within students with visual impairment. The main purpose of this study was to analyse the QOL of children and adolescents with low vision and blindness. Data were collected from 18 children and adolescents, and respective parents ( n = 18). QOL was assessed by the KIDSCREEN 52 questionnaire. Cronbach’s alpha and correlations were calculated to examine the psychometric properties of the scale in the visual impairment field. The scale showed suitable internal consistency and construct validity. The findings highlighted that the mean scores were higher in participants with low vision, in male group, and in children. Furthermore, children and adolescents reported higher scores regarding their QOL than their parents. The results emphasized the importance of collecting information from the person about his or her own life to know the personal outcomes, as well as the perception of their parents.

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