Children's Health-related Quality Research Articles

Traducción y validación al español del módulo neuromuscular de la escala Pediatric Quality of Life Inventory (PedsQL): evaluación de la calidad de vida percibida por padres de niños de 2-4 años con enfermedades neuromusculares

Paediatric neuromuscular disorders, which negatively impact on children's health-related quality of life (HRQoL), are a frequent cause of parental consultation with a physiotherapist. Parents' stress overload triggers a poor perception of their children's HRQoL. For this reason, it is essential to have psychometrically sound instrument to measure parent's perceptions such as the Pediatric Quality of Life Inventory (PedsQL) Neuromuscular Module. To assess the validity and reliability of the Spanish version of PedsQL Neuromuscular Module for parent perceived quality of life of children aged 2-4 with neuromuscular disorders. The cognitive validity of the Spanish version of PedsQL was carried out with Mapi Research Trust permission. Subsequently, a test-retest was performed with 42 parent volunteers of children aged 2-4 with paediatric neuromuscular disorders. This allowed an evaluation of PedsQL intra-observer concordance and internal consistency. Finally, construct validity was evaluated through factor analysis. The Cronbach alpha and all correlation intra-observer coefficients were higher than 0.8, indicating excellent validity and reliability. The construct validity analysis presented 63.5% variability and such analysis suggested that a seven-dimension construct might be a better fit than three. The Spanish version of PedsQL Neuromuscular Module for parent perceived quality of life of children aged 2-4 presented excellent validity and reliability.

Parents' Perception of Health-Related Quality of Life in Children With Cochlear Implants: The Impact of Language Skills and Hearing.

The study compared how parents of children with cochlear implants (CIs) and parents of children with normal hearing perceive their children's health-related quality of life (HR-QOL). The sample consisted of 186 Norwegian-speaking children in the age span of 5;0-12;11 (years;months): 106 children with CIs (53% boys, 47% girls) and 80 children with normal hearing (44% boys, 56% girls). No children had known additional disabilities affecting language, cognitive development, or HR-QOL. Parents completed the generic questionnaire Pediatric Quality of Life Inventory (Varni, Seid, & Kurtin, 2001), whereas children completed a test battery measuring different aspects of language and hearing. Parents of children with CIs reported statistically significantly poorer HR-QOL in their children, on Pediatric Quality of Life Inventory total score and the subdomains social functioning and school functioning. Roughly 50% of parents of children with CIs reported HR-QOL levels (total score) within normal limits. No significant differences between groups emerged on the physical health and emotional functioning subscales. For the children in the group with CIs, better speech perception in everyday situations was associated with higher proxy-ratings of HR-QOL. Better spoken language skills were weakly to moderately associated with higher HR-QOL. The findings suggest that the social and school situation is not yet resolved satisfactorily for children with CIs. Habilitation focusing on spoken language skills and better sound environment may improve social interactions with peers and overall school functioning.

How are Effects of Patient Education Programs Influenced by Psychosocial Risk Factors in Pediatrics?

Modular patient education programs are effective in children with chronic conditions and their families. Little is known about the influence of socioeconomic status (SES), migration background (MB) and children's mental-health problems on the programs' effects. Do SES, MB or mental-health problems influence the success of education programs (disease-specific knowledge, children's health-related quality of life (HRQoL) and life satisfaction and parents' condition-specific burden)? Children with different chronic conditions and their parents participated in modular patient education programs. Before and 6 weeks after the participation SES, MB, children's mental-health problems, parents' und children's disease-specific knowledge, children's HRQoL and life satisfaction and parents' condition-specific burden were assessed by standardized questionnaires. The influence on the programs' effects of SoS, MH and mental-health problems were examined with variance and correlation analyses. 398 children (mean age 10.2 yrs) and their parents participated. Irrespective of SoS, MH and mental-health problems the programs were associated with improved disease-specific knowledge, children's HRQoL and life satisfaction and parents' disease-specific burden. At follow-up SoS, MH and mental-health problems were associated with reduced knowledge, reduced children's' HRQoL and life satisfaction and increased parents' disease-specific burden. Disadvantaged families and children with mental-health problems benefit from education programs, but have an increased need of education due to special challenges.

The effect of surgical methods and postoperative eye position on the quality of life in patients with intermittent exotropia

Objective: To evaluate the effects of different surgical methods and postoperative eye positions on the quality of life of children with intermittent exotropia (IXT) and their parents 3 months following strabismus surgery. Methods: Clinical observation. One-hundred and eighty children aged 2 to 17 years with IXT who received surgical treatment were recruited. One parent of each child was investigated by using 2 kinds of the Chinese version of the Intermittent Exotropia Questionnaires (CIXTQ) within 1 weeks before and at 3 months after surgery: the parent proxy scale (for parents to assess children's health related quality of life (HRQoL)) and the parent scale (containing functional, psychosocial and surgery subscales; for parents to assess their HRQoL). One hundred and eighty children were divided into different groups according to the surgical. Methods Monocular surgery group, binocular surgery group and eye position after 3 months: undercorrection group, successful group, overcorrection group, to explore: (1) the change of scores before and after surgery. (2) the difference of score changes after surgery between monocular and binocular surgery groups. (3) the difference of score changes after surgery between different postoperative eye position groups. Results: Significant improvement in median scores was seen from pre-operation to 3months post-operatively for all the proxy scale (t=-9.585, P<0.001), the functional (t=-11.361, P<0.001), psychosocial (t=-10.856, P<0.001) and surgery subscale (t=-11.622, P< 0.001) of parent scale. The change values from pre-operation to 3months post-operatively were not significantly different between monocular and binocular surgery groups for all the proxy scale (t=0.242, P=0.330), the functional (t=0.462, P=0.050), psychosocial (t=0.781, P=0.582) and surgery subscale (t=0.009, P=0.355) of parent scale, but significantly different between undercorrection, successful and overcorrection groups for the proxy scale (F=21.527, P<0.001), the functional (F=54.236, P<0.001), psychosocial (F=41.784, P<0.001) and surgery subscale (F=31.943, P<0.001). The scores of proxy scale and 3 parent subscales were all significantly improved (t=-13.639 to -6.059, P<0.05) after operation in both the undercorrection and successful groups, while significantly decreased in the overcorrection group (t=1.350-4.391, P<0.05). Conclusions: HRQoL can be improved significantly in both the undercorrection and successful groups, while decreased in the overcorrection group. (Chin J Ophthalmol, 2017, 53: 924-930).

Quality of Life of Obese School-Age Children and their Mothers' Perspectives in Cairo, Egypt

Background: Obesity is rapidly overtaking as a burden of the disease, it is expanding to include children, which put it on the top of the international public health agenda. Aim the study aimed to explore the quality of life among school-age children suffering from obesity and their mothers’ perspective in the Cairo governorate. Research design was descriptive correlational cross-sectional design. Setting: The study was carried out in selected governmental primary schools in Cairo governorate. Sample: In total, two hundred children and their mothers agreed to participate in the study. Tools: Two tools were used, I : Pre-designed Questionnaire interviewing Format which consisted of three parts: first part focused on socio-demographic data for children such as age, gender, grade level, their parents’ educational levels and family income of the studied sample. Second part focused on medical and family history. Third part focused on the nutritional habits of children. II: Pediatric Quality of Life Inventory version 4.0 which consisted of two part, first part: Children health-related quality of life to assess QoL of children which includes 3-items covering the physical, emotional, social and school functioning domains. Second part: Mothers’ perspective on the QoL of their children. Results: that the mean age of the participating school children was ૛.37 ± 1.8, ⯀3.5% of the children were obese and 5% of them had obesity class III. ⯀૛.5% of children have a positive family history of obesity. An overview of the QoL dimensions, showing the weighted means for physical, social, emotional, and school dimensions (1.૛⯀±0.43; 1.૛4±0.51; 1.⯀5±0.3૛; 1.80±0.43 respectively). These values indicate poor QoL. Conclusion: It was concluded that school-age children in the Cairo governorate had a poor QoL, with a statistically significant difference recorded with respect to age, BMI, and family income, and a highly statistically significant difference with the educational level of the mother of each child. However, no statistically significant difference was identified between QoL and gender. Recommendation: Establish education programs from school age onwards to teach families about healthy eating habits and raise awareness of health hazards associated with fast food consumption.

Associations Between Parental SES and Children's Health-Related Quality of Life: The Role of Objective and Subjective Social Status.

We examined (1) the relationship that parental objective social status (OSS) and subjective social status (SSS) have with children's health-related quality of life (HRQOL), (2) whether SSS mediates the association between OSS and HRQOL, and (3) whether these associations differ among Black, Latino, and White children. Data came from 4,824 Black, Latino, and White 5th graders in the Healthy PassagesTM study. OSS was measured as parent educational attainment and net equivalent household income. SSS was measured by parent rating of community and national standing on the MacArthur Scale of Subjective Social Status. Child HRQOL was measured with child report on the Pediatric Quality of Life Inventory (PedsQL) physical and psychosocial scales. Structural equation modeling path analysis was conducted using Mplus version 7.4. The data supported the hypothesized measurement and structural models. Whereas parental OSS was positively related to psychosocial HRQOL for all three racial/ethnic groups and to physical HRQOL for Latino children, parental SSS was not related to either for any of the racial/ethnic groups. Therefore, mediation by SSS was not supported for any group. OSS was confirmed to have stronger association with children's HRQOL than parental SSS. This is in contrast to some research on adults, raising the questions of how best to assess SSS relevant to children and at what point in development SSS may influence children's health and well-being. The persistent relationship found between parental OSS and child health suggests that efforts to improve low socioeconomic resources in families may contribute to improve children's health.

Family Functioning, Medical Self-Management, and Health Outcomes Among School-Aged Children With Sickle Cell Disease: A Mediation Model.

Informed by the Pediatric Self-Management Model, the present study tested relationships between parent and family functioning, sickle cell disease (SCD) self-management, and health outcomes for children with SCD. 83 children with SCD and a parent completed baseline data as part of a larger investigation of a family-based, problem-solving intervention for children with SCD (M age = 8.47). Youth and parents completed a measure of child health-related quality of life (HRQOL), and parents completed measures of family efficacy, parenting stress, and SCD self-management. SCD pain episodes and urgent health utilization information over the past year were obtained via medical chart review. SCD self-management mediated the relationship between parent-reported family efficacy and parent proxy HRQOL, as well as the relationship between parenting stress and child and parent proxy HRQOL. Mediation models were nonsignificant for outcomes beyond HRQOL, including SCD pain episodes and urgent health utilization. Fostering family efficacy and reducing parenting stress may be meaningful intervention targets for improving SCD self-management and child HRQOL among school-aged children. Although findings were consistent with the Pediatric Self-Management Model in terms of HRQOL, the model was not supported for pain episodes or urgent health utilization, highlighting the need for multi-method, longitudinal research on the SCD self-management behaviors that are linked to preventable health outcomes.

Effects of maternal history of depression and early life maltreatment on children's health-related quality of life

BackgroundThere is a well-established link between maternal depression and child mental health. Similar effects have been found for maternal history of early life maltreatment (ELM). However, studies investigating the relationship of children's quality of life and maternal depression are scarce and none have been conducted for the association with maternal ELM. The aim of the present study was to investigate the effects of maternal history of ELM and depression on children's health-related quality of life and to identify mediating factors accounting for these effects. MethodsOur study involved 194 mothers with and without history of depression and/or ELM and their children between five and 12 years. Children's health-related quality of life was assessed by maternal proxy- and child self-ratings using the KIDSCREEN. We considered maternal sensitivity and maternal parenting stress as potential mediators. ResultsWe found an effect of maternal history of depression but not of maternal history of ELM on health-related quality of life. Maternal stress and sensitivity mediated the effects of maternal depression on child global health-related quality of life, as well as on the dimensions Autonomy & Parent Relation, School Environment (maternal and child rating), and Physical Wellbeing (child rating). LimitationDue to the cross-sectional design of the study, causal interpretations must be made with caution. Some scales yielded low internal consistency. ConclusionsMaternal impairments in areas of parenting which possibly developed during acute depression persist even after remission of acute affective symptoms. Interventions should target parenting stress and sensitivity in parents with prior depression.

The relationship between anxiety and quality of life in children with hereditary angioedema.

The severe life-threatening characteristics of hereditary angioedema (HAE) with C1-inhibitor deficiency (C1-INH-HAE) can affect anxiety levels among pediatric patients. This emotional burden together with the physical restrictions of C1-INH-HAE may decrease children's health-related quality of life (HRQoL). (i) To compare anxiety state and trait between children with C1-INH-HAE and healthy controls; (ii) to examine the relationship between the level of anxiety of children with C1-INH-HAE, their disease activity/affected sites and their HRQoL; and (iii) to predict the HRQoL of children with C1-INH-HAE based on their anxiety level and disease activity/affected sites METHODS: Thirty-three children with C1-INH-HAE (aged 5-18years) and 52 healthy controls were recruited from Israel and Hungary. All children completed the State-Trait Anxiety Inventory for Children (STAIC), the Pediatric Quality of Life Inventory (Peds-QL) demographic questionnaire and a disease activity and site questionnaire . Disease activity was defined as the number of attacks in last year. Both anxiety state and trait were significantly higher among children with C1-INH-HAE as compared to the controls (44.74±10.56 vs 38.76±10.67, P<.01, 29.21±5.16 vs 25.23±4.09, P<.001 in comparison). Significant differences were found between C1-INH-HAE patients with HAE attacks, asymptomatic C1-INH-HAE patients, and healthy controls in both anxiety state (F56,2 =4.69, P=.001) and trait (F56,2 =9.06, P<.0001). A higher anxiety trait was correlated with the number of angioedema-affected sites (r=.52, P=.003). The presence of HAE attacks and higher anxiety trait predicted a lower HRQoL in children with C1-INH-HAE. C1-INH-HAE children have higher anxiety trait and state, which correlate with reduced HRQoL domains.

Maternal mental quality of life mediates the associations between intimate partner abuse against mothers and their children’s behaviours and quality of life in low-income Chinese families

To explore the association between maternal intimate partner abuse (IPA) and their children's health-related quality of life (HRQOL) and behavioural problem, and to establish a mediation model and investigate the mediating role of mothers' HRQOL on this association. A cross-sectional study was conducted on 197 mothers of 227 children (112 boys and 115 girls) from low-income Chinese families. The mothers were asked to complete the 5-item abuse assessment screen questionnaire for the presence of IPA, the Chinese (Hong Kong) version of 12-item Short-Form Health Survey (SF-12) for their HRQOL and a structured socio-demographics questionnaire. One of the parents completed the Child Health Questionnaire-Parent Form-50 (CHQ-PF50) and the strengths and difficulties questionnaire (SDQ) to report on their children's HRQOL and behavioural problems, respectively. The mediating effect of the maternal HRQOL on the relationship between maternal IPA status and their children's behavioural problems and HRQOL was tested using Baron and Kenney's multistage regression approach and bootstrapping method. Thirty-five of the 197 mothers reported IPA (17.8%). Children whose mothers had experienced IPA had lower scores in the CHQ-PF50 mental health, parental impact-emotional, family activities and family cohesion subscales, and the psychosocial summary score compared to children of mothers who reported no IPA; they also had more emotional, conduct and hyperactivity/inattention problems and higher total difficulties scores measured by the SDQ. Maternal mental HRQOL was a mediator on the relationship between maternal IPA status and their children's behavioural problems and psychosocial HRQOL. IPA experienced by mothers had significant negative impacts on their children's HRQOL and behaviours, which was mediated by maternal mental HRQOL.

Predicting Health Care Utilization for Children With Respiratory Insufficiency Using Parent-Proxy Ratings of Children's Health-Related Quality of Life

IntroductionChildren with chronic respiratory insufficiency and mechanical ventilation often experience acute illnesses requiring unscheduled hospitalizations. Health-related quality of life (HRQL) may predict future health care utilization. MethodsParticipants were 30 days to 22 years old with chronic respiratory insufficiency (N = 120). Parent-proxies completed global HRQL and general health measures. Outcomes were total health care (emergency department, outpatient, inpatient) and inpatient days over 6 months. Adjusted negative binomial regression estimated the effects of global HRQL and general health on utilization. ResultsThree quarters of children had any utilization; 32% had hospitalizations. Children with poor/fair global HRQL had 3.7 times more health care days than those with very good/excellent global HRQL. Children with poor/fair global HRQL had 6.3 times more inpatient days than those with very good/excellent global HRQL. Similar relationships existed between general health and utilization. DiscussionHRQL was associated with health care and inpatient days. Clinical teams can use HRQL as a marker for utilization risk, enabling potentially earlier intervention, better outcomes, and lower costs.

Comparative Effectiveness of Clinical-Community Childhood Obesity Interventions

Novel approaches to care delivery that leverage clinical and community resources could improve body mass index (BMI) and family-centered outcomes. To examine the extent to which 2 clinical-community interventions improved child BMI z score and health-related quality of life, as well as parental resource empowerment in the Connect for Health Trial. This 2-arm, blinded, randomized clinical trial was conducted from June 2014 through March 2016, with measures at baseline and 1 year after randomization. This intent-to-treat analysis included 721 children ages 2 to 12 years with BMI in the 85th or greater percentile from 6 primary care practices in Massachusetts. Children were randomized to 1 of 2 arms: (1) enhanced primary care (eg, flagging of children with BMI ≥ 85th percentile, clinical decision support tools for pediatric weight management, parent educational materials, a Neighborhood Resource Guide, and monthly text messages) or (2) enhanced primary care plus contextually tailored, individual health coaching (twice-weekly text messages and telephone or video contacts every other month) to support behavior change and linkage of families to neighborhood resources. One-year changes in age- and sex-specific BMI z score, child health-related quality of life measured by the Pediatric Quality of Life 4.0, and parental resource empowerment. At 1 year, we obtained BMI z scores from 664 children (92%) and family-centered outcomes from 657 parents (91%). The baseline mean (SD) age was 8.0 (3.0) years; 35% were white (n = 252), 33.3% were black (n = 240), 21.8% were Hispanic (n = 157), and 9.9% were of another race/ethnicity (n = 71). In the enhanced primary care group, adjusted mean (SD) BMI z score was 1.91 (0.56) at baseline and 1.85 (0.58) at 1 year, an improvement of -0.06 BMI z score units (95% CI, -0.10 to -0.02) from baseline to 1 year. In the enhanced primary care plus coaching group, the adjusted mean (SD) BMI z score was 1.87 (0.56) at baseline and 1.79 (0.58) at 1 year, an improvement of -0.09 BMI z score units (95% CI, -0.13 to -0.05). However, there was no significant difference between the 2 intervention arms (difference, -0.02; 95% CI, -0.08 to 0.03; P = .39). Both intervention arms led to improved parental resource empowerment: 0.29 units (95% CI, 0.22 to 0.35) higher in the enhanced primary care group and 0.22 units (95% CI, 0.15 to 0.28) higher in the enhanced primary care plus coaching group. Parents in the enhanced primary care plus coaching group, but not in the enhanced care alone group, reported improvements in their child's health-related quality of life (1.53 units; 95% CI, 0.51 to 2.56). However, there were no significant differences between the intervention arms in either parental resource empowerment (0.07 units; 95% CI, -0.02 to 0.16) or child health-related quality of life (0.89 units; 95% CI, -0.56 to 2.33). Two interventions that included a package of high-quality clinical care for obesity and linkages to community resources resulted in improved family-centered outcomes for childhood obesity and improvements in child BMI. clinicaltrials.gov Identifier: NCT02124460.

Understanding the Relationship Between Child Health-Related Quality of Life and Parent Emotional Functioning in Pediatric Hematopoietic Stem Cell Transplant.

Explore interrelationships between domains of child health-related quality of life (HRQL) and parent emotional functioning using parent-proxy and child report in the context of hematopoietic stem cell transplant (HSCT). Data on 258 parent-child dyads were used from two longitudinal studies. Domains of HRQL included physical, emotional, and role functioning, and HSCT-related worry. We used structural equation modeling to model the outcome of parent emotional functioning using primary and alternative conceptual models. Parent-proxy raters reported lower child HRQL than child raters. Structural equation models demonstrated relationships between child emotional functioning, child HSCT-related worry, and parent emotional functioning, with some differences by raters. Relationships between child HRQL and parent emotional functioning within the context of HSCT are complex. To optimize the child's health outcomes, providing psychosocial support for children and their families may be necessary, especially for those experiencing distress or facing treatment complications.

The relationship between barriers to care, caregiver distress, and child health-related quality of life in caregivers of children with cancer: A structural equation modeling approach

ABSTRACTThe current study examined the relationship between demographic variables, treatment factors, and perceived barriers to care to both caregiver distress and caregiver-reported child health-related quality of life in caregivers of children diagnosed with cancer utilizing path analysis. Parental distress is examined as a potential mediator between barriers to care and income, as well as child age and caregiver-reported health-related quality of life (HRQOL). The final model demonstrated close fit to the data. Family income and perceived barriers to care demonstrated direct effects on caregiver distress. Child age, treatment intensity, severity of illness, and caregiver distress also demonstrated direct effects on caregiver-reported HRQOL. These results suggest a significant relationship between burden of care, caregiver functioning, and caregiver-reported child outcomes and support the transactional relationship between caregiver and child functioning.

259 - Trajectories of Children's Health-Related Quality of Life (HRQL) after Myeloimmuno Ablative Conditioning (MAC) Familial Haploidentical (FHI) T-Cell Depleted (TCD) with T-Cell Addback Stem Cell Transplantation (SCT) for Poor Risk SCD

259 - Trajectories of Children's Health-Related Quality of Life (HRQL) after Myeloimmuno Ablative Conditioning (MAC) Familial Haploidentical (FHI) T-Cell Depleted (TCD) with T-Cell Addback Stem Cell Transplantation (SCT) for Poor Risk SCD

Validity and Reliability of Persian Version of Children's Health-related Quality of Life

Validity and Reliability of Persian Version of Children's Health-related Quality of Life

Quality of Life and Psychosocial Needs of Children Suffering from Chronic Skin Diseases

IntroductionThe inner world of an individual and his/ her relationship with the environment are expressed at the 'boundary', the biggest organ of our body - the skin [1]. The skin and psyche are most often linked in the studies including the following groups of disorders [2]: (1) psychophysiological dermatoses - primarily psychiatric diseases resulting in skin disorders and (2) secondary psychological disorders occuring as reactions to the visibility and the chronic course of skin diseases. According to Hong, Koo and Koo [3] skin diseases are mostly not life threatening, which is the reason why they receive less attention both medically and psychologically. However, individuals suffering from skin diseases, also suffer psychosocially, equally or even more than those with other chronic somatic diseases [4], especially children and youth [5].Children suffering from chronic skin diseases show more signs of depression and anxiety [6-8], a poorer self-image [9], and they estimate their quality of life lower than children with other diseases like cystic fibrosis, asthma, epilepsy and enuresis [6]. Studies show that among skin diseases, atopic dermatitis is most strongly related with negative indicators of mental health in children [7,10,11], which is explained multifactorially. Atopic dermatitis is a condition which is: (1) visible, (2) incurable in most cases, (3) causes sleeping problems, (4) causes constant itching, (5) can cause reactions of disgust from the environment [7,8,12].The psychological indicator most often studied in children with chronic skin diseases is the quality of life. According to the World Health Organization, the quality of life is defined as 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 (The WHOQOL Group, 1995). It includes several aspects - physical health, the psychological status, the level of independence, social relationships, personal beliefs and their relationship to the salient features of their environment [13]. The quality of life of children suffering from skin diseases is most often examined by quantitative methodology, questionnaires, predominantly CQOL (Child Health-Related Quality of Life) [14], CDQOL (Children's Dermatology Life Quality Index) [15] and CLQU (Children's Life Quality Index) [16]. Measures CQUL and CDQOL are based on the quality of life linked with physical health, while CLQU measures various aspects of children's lives. Both questionnaire structures contain certain bias. Children with lower life satisfaction due to their health condition will not differentiate in the first two questionnaires because the questions only refer to health. On the other hand, according to the CLQU factors [16], a child may be satisfied with family circumstances, the economic status, his/her academic achievement, s/he can positively perceive his/her future, and at the same time be dissatisfied with e.g. his/her health, appearance and social status due to a skin condition. Regardless of how intensely dissatisfied a child may be with his/ her aspects of life affected by a skin condition, his/her total life satisfaction will seem at least average because of the satisfaction with other aspects of life. Therefore, the results obtained by questionnaires need to be critically interpreted and complemented by qualitative methodology.In most studies of the quality of life of children suffering from skin diseases, at least a part of questionnaires was filled in by adults in their environment. Davies, Noll, DeStefano, Bukowski and Kulkarni [17] emphasize that adult perceptions can be significantly different from child perceptions. For example, unclear link between the severity of skin disease symptoms and the quality of life of children can be explained by physicians assessing the severity of symptoms, while in some cases parents assess the quality of their children's lives [18,19]. …

Study of the Health Instructions Effect on Quality of Life and Psychological Problems among Children with Thalassemia

&lt;p&gt;Objective: The aim of this study was to evaluate the health instructions effect on quality of life and psychological problems among children with thalassemia.&lt;br /&gt;Design: Quasi-experimental design used in this study. Pre and post evaluation done to identify the effect of health instructions sessions which provided by the researchers for thalassemic children and their parents on children heath related quality of life and psychological problems using Pediatric quality of life inventory PedsQL 4.0 generic core scale which was used to measure health-related quality of life in children and adolescent. In addition, Depression, Anxiety and Stress Scale (DASS) used to evaluate psychological problems among children.&lt;br /&gt;Setting: It was conducted at outpatient and hematological unit affiliated to Beni-Seuf University hospital. &lt;br /&gt;Sample: The total children included in this study were 23 children of either sex, aged (7-18y). Children with physical or mental handicapped excluded from the study.&lt;br /&gt;Results: The results of this study showed that more than two third of studied children scored medium level in physical and school function. As well as, there was no significant differences in thalassemic children health related quality of life domains post health instructions sessions where p &amp;gt; 0.05. Also these study findings demonstrated that 60% of children had extremely sever anxiety and 43.5% of them had severe depression. However, post health instruction sessions these findings showed statistical significant decline where p value = .001 and .000 respectively.&lt;br /&gt;Conclusion: An important finding to emerge in this study is studied children with thalthemia had psychological problems with poorer health related quality of life. However, the results set out to the provision of health instructions for children with thalthemia and their parents had significant effect in improvement of children psychological problems. Unfortunately, there is no significant effect in their health related quality of life post instructions sessions. Thus, the results of this study suggest that the importance for the continuous heath educations program providing for thalassemic children and their parents by pediatric and psychiatric nurses. In addition, health team collaboration for monitoring psychological problems of children with thalassemia and assist children and their parents to more adjustment in their health related quality of life.&lt;/p&gt;

Is there a relationship between primary school children's enjoyment of recess physical activities and health-related quality of life? A cross-sectional exploratory study.

Issue addressed An important strategy for increasing children's physical activity is to enhance children's opportunities for school recess physical activities, yet little is known about the influence of school recess physical activities on children's health-related quality of life (HRQOL). The purpose of the present study was to explore the relationship between Australian primary school children's enjoyment of recess physical activities and HRQOL. Methods The study consisted of children at two Australian primary schools (n=105) aged 8-12 years. The Lunchtime Enjoyment Activity and Play questionnaire was used to measure school children's enjoyment of school recess physical activities. The Pediatric Quality of Life Inventory 4.0 was used to measure children's HRQOL. Researchers applied linear regression modelling in STATA (ver. 13.0) to investigate the relationship between children's enjoyment of school recess physical activities and HRQOL. Results It was discovered that primary school children's enjoyment of more vigorous-type school recess physical activities and playing in a range of weather conditions was associated with children's improved HRQOL. Conclusion The findings from this study suggest that health providers and researchers should consider providing primary school children with opportunities and facilities for more vigorous-intensity school recess physical activities as a key strategy to enhance children's HRQOL. So what? Considering a social-ecological model framework of the key predictors of children's enjoyment of school recess physical activities may provide valuable insight for school health providers into the multiple levels of influence on children's HRQOL when developing school settings and activities for school recess.

Rewards of parenting children and adolescents with spinal cord injuries

Mixed-method study. Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes. Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States. Self-identified primary caregivers (n=178) of children aged 1-18 years answered the question: 'What has been most rewarding in parenting a child with SCI'? and completed a questionnaire about their child's health-related quality of life (HRQOL). Participants aged 7-18 years (n=134) also completed tools assessing their community participation, anxiety, depression and HRQOL. Four reward themes emerged: Enhanced Resilience (for example, resilience in my child, self and family), Caregiver-Child Relationship, Connecting with Others, and Learning. Caregivers of children with lower self-reported school and overall psychosocial HRQOL were more likely to report Enhanced Resilience in their child. Caregivers whose children had fewer depressive symptoms, lower levels of participation and who were older at injury and interview felt rewarded by an enhanced Caregiver-Child Relationship. Caregivers of children with a broader context of participation and higher school and psychosocial HRQOL reported Connecting with Others. Finally, unemployed caregivers and those with less education were more likely to report Learning. Caregivers reported a variety of rewards from parenting their children with SCI, and several relationships emerged between rewards and demographics and child psychosocial outcomes. Future research should further examine the positive experiences of caregivers and whether focusing on strengths might yield better long-term outcomes for children with SCI.