Parental Quality Of Life Research Articles

Qualitative Investigation into the Perception towards Compassionate Parenting among Parents of Autistic Children: Cross-Cultural Comparison between the UK and The Netherlands.

Parenting a child with autism spectrum disorder is believed to present challenges that lead to increased levels of stress, as well as a reduction in the quality of the relationship between parent and child. This study aims to investigate parental perceptions toward a compassionate parenting style of parenting to better understand how this style may influence relationships and quality of life in parents. Parents from the United Kingdom (six parents) and the Netherlands (five parents) were invited take part in semi-structured interviews, whereby the data collected were subsequently analysed using thematic analysis. Data from both British and Dutch groups were overall similar to each other. Four themes were identified from the aggregated data: (a) "Parents believe compassionate parenting is important" (parents believed that compassion is an essential element of their parenting style and improves situational outcomes); (b) "Compassionate parenting de-escalates stressful situations" (compassionate parenting reduces stress and improves the quality of life); (c) "High pressure situations as a threat to practice compassion" (challenges and limitations to compassionate parenting style); and (d) "Greater public and professional awareness of autistic behaviours" (the general public and professional services often lack awareness to recognise autistic behaviour traits). Results are consistent with research examining the perceptions of parents of neurotypical children, in that a more compassionate approach to parenting is valued, as it is believed to create a greater connection with the child. Our findings inform researchers and educators as to what parents of children with ASD find useful, important, and worthwhile. Future research needs to investigate how compassionate parenting impacts autistic children's quality of life.

Parents of Children With Neurodevelopmental Disorders: A Mixed Methods Approach to Understanding Quality of Life, Stress, and Perceived Social Support.

Objective This study aims to investigate the quality of life (QOL), parental stress, and perception of social support in parents of children with neurodevelopmental disorders (NDD) in Saudi Arabia. Background Studies have shown that parenting a child with NDD impacts the QOL, parental stress, and life satisfaction of parents. Those studies, however, assessed those factors separately as well as focusing on autism spectrum disorder (ASD). This study will use a mixed methods approach to gain a deeper understanding of those three factors as they related to parenting a child with NDD. Method Data about parental stress, QOL, and other related sociodemographic variables were collected from parents of children with NDD (N= 63). Next, semi-structured interviews were conducted with four of those parents to gain a deeper understanding of the parents' QOL, parental stress, and perception of social support. Results An analysis of variance (ANOVA) test demonstrated that parents who had children with severe symptoms had poorer QOL and higher levels of parental stress compared to parents who had children who had moderate and mild symptoms. In addition, parents who had children with ASD had poorer QOL compared to all of the other disorders. There was no statistically significant difference in QOL and parental stress between mothers and fathers. The thematic analysis highlighted that the most significant challenges they face are financial, familial, and well-being worries. Conclusion In conclusion, this study shows that parents of children with NDD exhibited higher levels of parental stress and lower levels of QOL depending on the diagnosis and intensity of the child's symptoms. In addition, the interviews highlighted some key challenges that the parents felt affected their QOL and stress levels, as well as their views on family, friends, and community social support. Implications This study can help in developing or improving supportive programs and interventions for parents with children with NDD to enhance their QOL, reduce parental stress, and create a better social support system.

Quality of life indicators in children with non-traumatic and non-syncopal transient loss of consciousness and their families

Background. There are extremely limited research on the quality of life in children with non-traumatic and non-syncopal transient loss of consciousness (TLOC), which does not sufficiently reflect the impact of epilepsy, first unprovoked epileptic seizure or psychogenic TLOC on the parental quality of life and family functioning. The purpose was to provide a comparative analysis of quality of life in children with non-traumatic and non-syncopal TLOC, as well as to study the impact of these diseases on the family quality of life. Materials and methods. Twenty-two patients with epilepsy, 18 with first unprovoked epileptic seizure, and 18 with psychogenic TLOC aged 8–17 years were examined. The control group consisted of 40 apparently healthy children. Quality of life in children and their parents was assessed using the PedsQL™ 4.0 Generic Core Scales (child report, adolescent report, parent report), and the PedsQL™ 2.0 Family Impact Module (parent report). Results. Epilepsy and psychogenic TLOC have a negative impact on the quality of life of children. Epilepsy was accompanied by deterioration of physical (57.1 ± 5.2; 77.3 ± 4.8 points) and psychosocial health (60.7 ± 5.7; 76.3 ± 2.7 points), while psychogenic TLOC were characterized by only low physical health (55.0 ± 5.5; 77.3 ± 4.8 points) according to patient self-reports (p < 0.01). The quality of life of children with epilepsy was influenced by age (r = –0.55; r = 0.007) and features of clinical manifestation of the epileptic seizure (r = –0.56; r = 0.007). The number of previous non-epileptic seizures had an impact on quality of life among patients with psychogenic TLOC (r = –0.60; r = 0.0008). The first unprovoked epileptic seizure was not accompanied by quality of life deterioration among children and parents. Only epilepsy was associated with a decrease in the quality of life of parents and family as a whole, mainly due to an increased anxiety (38.8 ± 4.5; 63.2 ± 4.0 points), a decrease in emotional functioning (47.5 ± 3.9; 66.9 ± 3.3 points), a lack of effective communication between family members (50.0 ± 4.8; 79.4 ± 2.9 points); p < 0.01. Conclusions. The combined evaluation of quality of life in children and their parents helps better understand the impact of disease course peculiarities and treatment on the child’s and his family’s quality of life in order to provide timely medical and psychological assistance.

Parental Stress, Familial Burden and Quality of Life in Parents of Children with Down Syndrome

The current study was conducted to explore the severity of parental stress, familial burden and how it effects on quality of life of those parents having children with Down Syndrome in Pakistan. Correlational research design was used to recruit the sample. The participants N= 110 (M=55; F=55) were recruited through purposive sampling from different institutes of special education and outpatient departments of psychiatry hospitals. Those who completed the inclusion criteria participated in the study by signing written informed consent. Parental Stress Scale (Berry & Jones, 1995) was used to determine the stress level. Burden Scale for Family Caregivers (Grau et al., 2014) was used to analyze the burden severity, and Family Quality of Life Scale (Hoffman et al., 2006) was used to determine their effected life due to having children with Down Syndrome. The results found a negative relationship between parental stress (r=-.20, p < .05), and familial burden against quality of life among parents having children with Down syndrome. Also, there is significant positive relationship among parental stress and familial burden (r = .37, p < .001), that shows the parental stress increases with the increase in familial burden. However, independent samples t test showed fathers to have high stress and burden as compared to mothers. The study has implications in the field of clinical psychology. The results will be able to help practitioners to consider the proliferating factors of stress and burden among the parents of children having Down Syndrome.

Feasibility of Family-Centered Workshops for Children Aged 18-36 Months with Language Developmental Delay

BackgroundFamily-centered workshops' effects on children with language developmental delay remain unknown. This study assessed the feasibility of workshops for children with language developmental delay. MethodsA total of 122 children aged 18-36 months with language developmental delays and their parents participated in six sessions of 2-h family-centered multidisciplinary workshops for 6 weeks. The Mandarin-Chinese Communicative Development Inventory, Peabody Developmental Motor Scale, Emotional Competency Rating Scales, Pediatric Outcomes Data Collection Instrument, Child Health Questionnaire, Pediatric Quality of Life Inventory, Caregiver Strain Index, Impact on Family Scale, PedsQL Family Impact Module, and World Health Organization Quality of Life (QOL) were administered to the children and their parents before and after the workshop. ResultsWe found improvement of emotion (P = 0.037), upper extremity and physical function (P = 0.038), and transfer and basic mobility (P = 0.019) in children and parental QOL related to children's conditions (P = 0.049), with no effect on communication ability and QOL in children and family strain and function. We also noted more significant improvement in children with pure developmental language delay than in children with nonpure developmental language delay concerning the success rates (from delayed to normal development) for expressive vocabulary (P < 0.001) and word combination (P = 0.002). Satisfaction levels toward the workshop were high. ConclusionsFamily-centered workshops improved children's emotions, functional performance, and parental QOL. Although the samples were too small to test different conditions of the developmental delay, the workshops for children with language developmental delays are acceptable and feasible.

Mothers and fathers with schizophrenia: Treatment and quality of life

IntroductionSchizophrenia is a chronic disease that deteriorates the functionality of patients, especially when raising a family and caring for children. We are interested in analyzing the characteristics of mothers and fathers diagnosed with schizophrenia and their degree of global activity when switching from oral treatments to injectable treatments.Objectives1 To evaluate the quality of life and functional level of mothers with schizophrenia treated with quarterly paliperidone palmitate. 2. To compare the quality of life and functional level when switching from oral treatment to long-acting injectables.MethodsParticipants were 3 mothers and 3 fathers, 33-40 years old, with a diagnosis of schizophrenia in monotherapy who changed treatment with monthly paliperidone palmitate to quarterly paliperidone palmitate LD IM (525 mg/every 12 weeks). Retrospective data collection. QLS quality of life scale.ResultsSix patients were included, caregivers of 1 child (80%), 2 children (20%) who met the inclusion criteria and completed the questionnaires. After its application and correction by means of non-parametric tests (N&lt;30). During oral treatment, scores are observed in the QLS questionnaire of: intrapsychic functions mean 34.2, interpersonal relationships mean 19, instrumental role mean 8, daily activities mean 8. After 12 months of treatment with intramuscular paliperidone palmitate (injectable every 12 weeks ) scores were obtained: intrapsychic functions mean 36, interpersonal relationships mean 23, instrumental role mean 15, daily activities mean 11. A better functioning of the patients was observed in the instrumental categories and daily activities. As well as the patients referred better adherence to treatment.ConclusionsIn our experience, injectable long-acting Paliperidone Palmitate every 12 weeks is associated with the perception of a better quality of life in parents with schizophrenia and increases administration facilities as well as planning in their daily lives.Disclosure of InterestNone Declared

Family Functioning and Health-Related Quality of Life in Parents of Children with Mental Illness.

Previous research suggests that family dysfunction may be related to lower health-related quality of life (HRQoL) in parent caregivers, but it is unknown if this association exists in the context of child mental illness. Therefore, the objectives of this study were to compare HRQoL between parent caregivers and Canadian population norms using the Short Form 36 Health Survey (SF-36); examine associations between family functioning and parental HRQoL; and investigate whether child and parental factors moderate associations between family functioning and parental HRQoL. Cross-sectional data were collected from children receiving mental healthcare at a pediatric hospital and their parents (n = 97). Sample mean SF-36 scores were compared to Canadian population norms using t-tests and effect sizes were calculated. Multiple regression was used to evaluate associations between family functioning and parental physical and mental HRQoL, adjusting for sociodemographic and clinical covariates. Proposed moderators, including child age, sex, and externalizing disorder, and parental psychological distress, were tested as product-term interactions. Parents had significantly lower physical and mental HRQoL versus Canadian norms in most domains of the SF-36, and in the physical and mental component summary scores. Family functioning was not associated with parental physical HRQoL. However, lower family functioning predicted lower parental mental HRQoL. Tested variables did not moderate associations between family functioning and parental HRQoL. These findings support the uptake of approaches that strive for collaboration among healthcare providers, children, and their families (i.e., family-centered care) in child psychiatry settings. Future research should explore possible mediators and moderators of these associations.

Quality of life in parents of autistic children: A transcultural perspective.

The concepts of health, illness, and disability as well as the perceptions of autism and quality of life (QoL) vary greatly across cultures and across time. This study sought to explore the interplay of culture on QoL and impact on parents caring for autistic children. We used a transcultural dataset from seven countries (Australia, Hungary, Malaysia, Romania, Singapore, Spain, and the United Kingdom) with participating parents/carers reporting on the Quality of Life in Autism (QoLA) questionnaire. The QoLA questionnaire is a validated measure of QoL for parents of autistic children, with Part A subscale measuring parental QoL and part B subscale assessing the parental impact of the child's autism spectrum disorder (ASD) symptoms or features. We used the Quade's ranked analysis of covariance to determine significant differences between the countries in relation to QoLA Part A and Part B scores while adjusting for baseline differences using covariates such as parents' gender, child's age, and gender. Additionally, a post-hoc analysis with Bonferroni correction was also conducted to examine multiple pairwise comparisons. We found that while the effect of features of ASD (Part B subscale) stayed strongly comparable between cultures, the self-reported parental QoL was most likely determined by different aspects of culture in different countries. It is concluded that while the ASD symptoms or features appear to affect parents in the same way across different countries, the parental QoL may be a culturally informed construct.

Effects of Insurance Status on Infantile Atopic Dermatitis Severity and Parental Quality of Life

The association between insurance status and infantile atopic dermatitis (AD) severity is not fully understood. We hypothesized that parents of infants with Medicaid coverage would report increased AD severity as compared to parents of privately insured infants. We also performed exploratory analyses of associations between insurance status and quality of life (QOL).

Quality of life in parents of children with Autism spectrum disorder: Emphasizing challenges in the Indian context

Purpose: Research has raised concerns about the quality of life (QOL) of parents of children with Autism spectrum disorder (ASD). Parents in different cultures show different psychological functioning when caring for a child with ASD. Hence, we examined QOL in parents of children with ASD in India and its relationship with socio-demographic factors. Materials and methods: We used a self-reported questionnaire and WHOQOL-BREF instrument to collect data on socio-demographic details and QOL respectively. Data were collected from two groups of participants – parents of children with ASD and parents of typically developing children (N = 60). Results: Results revealed significant differences in QOL between the two groups. Further, we found a positive correlation between socio-demographic variables and QOL in parents of children with ASD. Conclusions: Findings emphasize the need for intervention approaches aimed at family functioning, improving support services, and assisting parents to develop healthy coping strategies.

Psychological Distress and Perceived Burden in Parents of Korean Children With IgE-Mediated Food Allergy.

Food allergy (FA) can have a profound effect on quality of life (QoL), stress, and anxiety in the family. We aimed to validate the Korean version of the Food Allergy Quality of Life-Parental Burden (FAQL-PB) and identify factors related to the parental psychosocial burden of caring for children with FAs. Parents of children aged between 6 months and 17 years with immunoglobulin E (IgE)-mediated FAs from the Pediatric Allergy Department of five university hospitals in Korea were enrolled in the study. Parents were asked to complete the FAQL-PB, Food Allergy Independent Measure-Parent Form (FAIM-PF), Child Health Questionnaire-Parents Form 28 (CHQ-PF28), Beck's Anxiety Inventory, Connor-Davidson Resilience Scale, and Patient Health Questionnaire-9 for depression. Statistical analyses included internal consistency, test-retest reliability, concurrent validity, discriminative validity, and logistic regression analyses. A total of 190 parents were enrolled. Social activity limitation was the item with the highest FAQL-PB scores. The Cronbach's α for each item was higher than 0.8. The test-retest reliability was good (intra-class correlation coefficient, 0.716; 95% confidence interval [CI], 0.100-0.935). An increase in the FAQL-PB was significantly associated with an increase in the FAIM-PF (β = 0.765, P < 0.001) (concurrent validity). There was a positive correlation between parental burden, anxiety, and depression, while resilience was inversely correlated with parental burden (all P < 0.001). The total FAQL-PB score in parents of children who had experienced anaphylaxis was significantly higher than that in parents of children who did not experience it (P = 0.008). When adjusting for age, sex, and underlying diseases, anaphylaxis (β = 9.32; 95% CI, 2.97 to 15.68), cow's milk (CM) allergy (β = 8.24; 95% CI, 2.04 to 14.44), soybean allergy (β = 13.91; 95% CI, 1.62 to 26.20), higher anxiety (β = 1.05; 95% CI, 0.07 to 1.41), higher depression (β = 2.15; 95% CI, 1.61 to 2.69), and lower resilience (β = -0.42; 95% CI, -0.61 to -0.2) were significantly associated with greater parental burden in children with IgE-mediated FAs. FAQL-PB is a reliable and valid tool for use in Korea. Anaphylaxis, CM or soybean allergies, more anxiety and depression symptoms, and lower resilience are associated with poorer QoL in parents of children with FAs.

Quality of Life in Parents of Children and Adolescents with Vitiligo: A Qualitative Study.

Quality of Life in Parents of Children and Adolescents with Vitiligo: A Qualitative Study.

Anxiety, Depression, and Quality of Life in Parents of Adolescents with Inflammatory Bowel Disease: A Longitudinal Study.

The parents of adolescents with inflammatory bowel disease may experience impaired mental health and quality of life. This longitudinal study aimed to verify whether the mental health and quality of life of the parents of adolescents with inflammatory bowel disease declined when their children had active disease. Sociodemographic data, parental anxiety, depression, and quality of life were analyzed using validated questionnaires for each variable. After the baseline survey, the second and follow-up surveys were conducted at 3 and 12 months, respectively. The active disease group comprised eight parents whose children had active disease during the baseline and second surveys. The remission group comprised 14 parents whose children remained in remission during both surveys. The improved group comprised nine parents whose children experienced active disease at baseline and remission during the second survey. Parental mental health and quality of life were compared among the groups. Significantly higher levels of anxiety were observed in the active disease group in all surveys (p<0.050). Although depression levels and quality of life did not differ significantly among the three groups, pairing the active disease group with other groups showed some large effect sizes. Parents tended to experience decreased mental health and quality of life when their adolescents experienced active inflammatory bowel disease. Consequently, our hypothesis was partially verified. Therefore, parents need support when their children have active disease; this finding highlights the need for parental support systems.

Quality of Life among the Parents of Saudi Arabian children with Autistic Spectrum Disorder, Riyadh, KSA

Objective: To assess the factors influencing the quality-of-life differences between families caring for a child with Autistic Spectrum disorder diagnosis. Methods: Cross-sectional study of either parent of ASD child aged 1 to 14 years following up at the OPD setting in Riyadh, KSA from June 2019 through to the end of January 2020 at the Division of Developmental Pediatrics at King Saud medical city in Riyadh, Saudi Arabia via a structured questionnaire, (The World Health Organization Quality of Life Assessment-BREF (WHOQOL-BREF). Inclusion criteria: Parent of child with ASD who has been diagnosed by a developmental pediatrician at least 6 months prior to the commencement of this study, parent of child with ASD who receives follow-up treatment at the King Saud medical city children’s Hospital. Parent should be the primary caregiver of the child with ASD. (For the purposes of this study, “primary caregiver” is defined as the individual in the family whose main responsibility is to provide care to the ASD child). Parent who has no history of previous psychological, psychiatric disorder or physical disability. Parents who have been residing in Saudi Arabia for at least 6 months prior to the commencement of this study. Parent who has offered informed consent. Exclusion criteria: parent of any child who has dysmorphic features or a diagnosed genetic syndrome, parent of child with ASD who has sibling diagnosed with ASD, or parents of child with ASD who has sibling diagnosed with other chronic medical illness. Results: Marital status, housing settings, total household income, current employment, being part of support groups and associated illness in the ASD child significantly impacted at least one domain of WHOQOL-BREF. Conclusion: Modifiable factors that have the ability to elevate the quality of life for parents of ASD children are marital status, housing settings, total household income, current employment, being part of support groups and overall care of ASD children. Key words: ASD, Quality of Life, Autism Spectrum disorder, WHOQOL-BREF

Quality of life and health-promoting lifestyles for parents of children with intellectual and developmental disabilities.

The purpose of this study was to examine the relationship between a health-promoting lifestyle and quality of life in parents of children with intellectual and developmental disabilities. Participants were 254 South Korean parents of children with intellectual and developmental disabilities. We assessed participants using a quality of life scale and the Korean version of the Health-Promoting Lifestyle Profile-II (HPLP-II). The data were analysed using Pearson and Spearman rank correlation analysis, and linear regression was conducted using SPSS ver. 25.0. The results indicated statistically significant associations between health-promoting lifestyles and quality of life in parents of children with intellectual and developmental disabilities. Analysis showed that the HPLP-II subfactors of spiritual growth, health responsibility, exercise, nutrition, interpersonal relations, and stress management could significantly predict quality of life in parents of children with intellectual and developmental disabilities. Healthcare providers should help to improve the quality of life of parents of children with intellectual and developmental disabilities by facilitating health-promoting lifestyle behaviours through interventions designed to increase physical activity, nutrition, stress management, interpersonal relations, health responsibility, and spiritual growth.

Factors Impacting Parental Quality of Life in Preschool Children on the Autism Spectrum.

This study examined connections between parental quality of life (QoL) and features of children (autism severity, cognitive ability, behavioral profile, and sociodemographic factors). Parents of 97 children attending an autism-specific preschool completed the Quality of Life in Autism, Vineland Adaptive Behavior Scales and Child Behavior Checklist. The Autism Diagnostic Observation Schedule and Mullen Scales of Early Learning were also administered. Reduced restrictive/repetitive behavior and higher socialization and play/leisure scores were associated with better parental QoL. Better behavioral regulation and attention also predicted better QoL, as did stronger communication and reduced internalising behaviours. Findings indicate that a child's level of autism specific traits, adaptive functioning and behavioral profile has greater impact on parental QoL than cognitive level.

The relationship between affiliate stigma, stress, and quality of life for parents of individuals with cerebral palsy in Malaysia

Objective To examine the relationship between affiliate stigma, stress, and perceived quality of life among parents of children with cerebral palsy (CP). Method Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated. Results Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews. Conclusion Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.

Dermatology Quality of Life Index scores in Bangladeshi patients with atopic eczema and their families in East London.

Atopic eczema (AE) is a chronic relapsing, pruritic disease that greatly affects the child and family's quality of life (QoL). It is usually common and severe among children of Bangladeshi ethnicity. This is a cross-sectional quantitative study in patients with AE of Bangladeshi origin, which aims to analyse different components of the family, children and adult quality-of-life indices and their relationship to patient age, sex, eczema severity and distribution, other allergic associations, parental education and socioeconomic level. Children and young adults of Bangladeshi origin aged 0-30 years, clinically diagnosed with AE were recruited as part of the Tower Hamlets Eczema Assessment project, a clinical phenotyping study of AE in the Bangladeshi population living in East London. Questionnaires completed by children/parents included the Family Dermatology Life Quality Index (FDLQI), Infant's Dermatology Quality of Life (IDQOL) and the Children's Dermatology Life Quality Index (CDLQI). Young adults completed the Dermatology Life Quality Index (DLQI). The disease severity was assessed objectively using the Eczema Area Severity Index (EASI). Patients and parents who did not read or speak English were aided by Bengali/Sylheti-speaking research assistants. Overall, 460 Bangladeshi children and 98 adults with AE were recruited. Burden of care, extra housework and emotional distress were the highest affected domains in parental QoL, while itching and sleep were the highest for children. Significant factors influencing FDLQI score were EASI [marginal effect (ME) 1.01, 95% confidence interval (CI) 1.00-1.03; P = 0.004], age (ME 0.98, 95% CI 0.97-0.99; P = 0.004), extensor eczema distribution (ME 1.25, 95% CI 1.03-1.52; P = 0.023), parental English fluency (ME 1.29, 95% CI 1.10-1.52; P = 0.002) and atopic comorbidities (ME 1.10, 95% CI 1.04-1.17; P = 0.001). Parental socioeconomic class was a nonsignificant factor. IDQOL/CDLQI was influenced significantly by the child's age (ME 0.99, 95% CI 0.97-1.00, P = 0.023), 'nonclear' eczema distribution clusters especially the 'severe extensive' cluster (ME 1.46, 95% CI 1.15-1.84; P = 0.002) and nonsignificantly by EASI and parental English literacy and socioeconomic levels. DLQI was affected significantly by nonclear eczema distribution groups especially 'severe extensive' (ME 2.49, 95% 1.76-3.53; P < 0.001) and nonsignificantly by patient age, and female sex. AE is a chronic disease where many external factors other than disease severity affect QoL of patients and their families, -especially in under-represented minority groups who face different linguistic and cultural barriers.

Health-related quality of life in parents of adolescents one year into the COVID-19 pandemic: a two-year longitudinal study

AimFor many adults, their role as a parent is a vital part of their life that may influence their health-related quality of life (HRQOL) and vary with the age of their child. The aim of the present study was to describe and compare sociodemographic and psychological factors, pain and HRQOL in parents of adolescents assessed at baseline and 2 years later,—during the COVID-19 pandemic.MethodsA longitudinal study of 309 parents from the general Norwegian population was conducted. The parents were chosen based on their adolescent’s school belonging and responded to a web-based questionnaire. We used data collected at baseline (T1), when the adolescents were aged 14–15 years (2018/2019), and two years later (T2), in 2021, when the COVID-19 pandemic was ongoing. The response rate was 55%. HRQOL was assessed using RAND-36. Data were analysed using McNemar tests, paired samples t-tests and multiple linear regression analyses.ResultsOf the participants, 82% were mothers and 18% fathers. From T1 to T2, the average pain score increased, 1.6 (95% CI [-1,4; 1.8]) vs 1.8 (95% CI [1,6; 2.0]), the pain interference emotion score increased, 1.6 (95% CI [1.3; 1.9]) vs 1.8 (95% CI [1.5; 2.1]), and a larger proportion reported pain duration > 3 months (44% vs 50%, p = 0.014). The parents were more lonely, 12.8 (95% CI [12.3; 13.3]) vs 13.7 (95% CI [13.2; 14.2]), and reported lower RAND-36 mental component summary (MCS) scores, 52.2 (95% CI [51.3; 53.2]) vs 50.9 (95% CI [49.8; 52.0]). There were no significant associations between gender, sociodemographic factors, psychological factors, pain at T1 and changes in RAND-36 physical component summary (PCS). A positive change in MCS from T1 to T2 was predicted by working part time, B = 5.22 (95% CI [1.05; 9.38]) (ref no paid work) and older age, B = 0.24, (95%CI [-001; 0.42]), and there was a negative change with stress, B = -17.39, (95%CI [-27.42; -7.51]).ConclusionThe parents experienced more pain and were lonelier, and more reported reduced mental HRQOL. However, the changes appear to be of limited clinical significance.

Psychological Effects and Quality of Life in Parents and Children with Jia-Associated Uveitis.

Juvenile idiopathic arthritis (JIA) is a chronic inflammatory disease common in children and young adults. Uveitis is the most frequent serious extra-articular JIA manifestation and can lead to severe ocular complications, vision loss, and permanent blindness. This study aims to evaluate the psychological condition and the quality of life of children affected by JIA associated with uveitis (JIA-U) and the repercussion of this condition on parents. Thirty children and adolescents with active uveitis (Uveitis group) and comorbid joint symptoms of JIA were referred to the Unit of Ophthalmology, Giovanni XXIII Hospital of Bari, and 30 age-matched healthy controls (Healthy group) were enrolled with their parents. Four questionnaires were administered: Child Behaviour Checklist (CBCL), Parent Stress Index in Short Form (PSI), Pediatric Quality of Life Inventory (PedsQL), and Coping Inventory for Stressful Situations (CISS). The data were collected from February 2021 to December 2021. No significant differences between the two groups in CBCL, PSI, or CISS tests were shown (p &gt; 0.05). Conversely, significant differences between the two groups were observed in the PedsQL (p &lt; 0.05). This study shows how several ocular complications, recurrent eye examinations, and the rigor of long-term treatment may negatively influence health-related quality of life in children with JIA-U.