The Relationship between Psychological Vulnerability,Aging Attitudes and Life Meaning in Elderly Patients with Comorbidities

Background:With the rapid aging of China’s population and the increasing prevalence of comorbidities in the elderly,psychological crises have become more common.This study aims to investigate the present status of psychological vulnerability,aging attitudes,and life meaning in elderly patients with comorbidities.Methods:A total of 685 elderly inpatients and outpatients at Renmin Hospital of Wuhan University between July and December 2022 were selected using the simple random sampling method.Social demographic data were collected,and the Attitudes to aging Questionnaire(AAQ),the Chinese Life Meaning Questionnaire(C-MLQ),and the Psychological Vulnerability Scale(C-PVS)were used for the analysis.A total of 685 questionnaires were received,and 602 valid questionnaires were collected,with an effective rate of 87.88%.Data analysis was performed using SPSS V25.0 and AMOS V24.0.Results:The total scores of psychological vulnerability,aging attitudes,and life meaning were 69.4±12.8,80.2±13.5 and 39.2±8.3,respectively.The psychological vulnerability was significantly negatively correlated with life meaning and aging attitudes(r=-0.351,-0.264;p<0.01).There was a significant positive correlation between aging attitudes and life meaning(r=0.515;p<0.01).Life meaning played a partial mediating role between psychological vulnerability and aging attitudes(β=3.070,p<0.05).Conclusion:This study found that the psychological vulnerability in elderly patients with comorbidities was at the lower level,which was related to the elderly patients’aging attitudes and their current status of life meaning.The level of psychological vulnerability in elderly patients with senile-related comorbidities needs to be further improved.Medical workers should pay attention to the psychological vulnerability of elderly patients and improve the identification of psychological crises of such patients.

基于Childlife理念的叙事医学干预在隐睾患儿围手术期中的应用

目的探讨Child life理念的叙事医学干预在隐睾患儿围手术期中的应用效果。方法选取2021年1月至2023年8月安徽医科大学第一附属医院收治的120例住院择期手术的隐睾患儿作为研究对象,采用随机数字表法分为观察组和对照组,各60例。对照组采用泌尿外科常规围手术期干预,观察组在对照组基础上采用Child life理念的叙事医学干预。比较两组患儿和家长入院时、术后1 d和出院时的焦虑状态,以及患儿术后疼痛和家长满意度。结果两组患儿和家长焦虑评分组间、时间及交互比较,差异均具有统计学意义(P<0.001);对照组患儿和家长出院时焦虑评分均低于入院时、术后1 d,差异具有统计学意义(P<0.05);观察组患儿和家长术后1 d焦虑评分均低于入院时,出院时低于入院时、术后1 d,差异具有统计学意义(P<0.05);观察组患儿和家长术后1 d、出院时焦虑评分均低于对照组,差异具有统计学意义(P<0.05)。观察组患儿术后疼痛评分显著低于对照组,差异具有统计学意义(P<0.001)。观察组家长满意度显著高于对照组,差异具有统计学意义(P<0.001)。结论基于Child life理念的叙事医学干预可有效减轻隐睾患儿和家长围手术期的焦虑情绪,降低患儿术后疼痛感,提高家长满意度。

Reevaluating health metrics:Unraveling the limitations of disabilityadjusted life years as an indicator in disease burden assessment

In 1993,the World Bank released a global report on the efficacy of health promotion,introducing the disability-adjusted life years(DALY)as a novel indicator.The DALY,a composite metric incorporating temporal and qualitative data,is grounded in preferences regarding disability status.This review delineates the algorithm used to calculate the value of the proposed DALY synthetic indicator and elucidates key methodological challenges associated with its application.In contrast to the quality-adjusted life years approach,derived from multi-attribute utility theory,the DALY stands as an independent synthetic indicator that adopts the assumptions of the Time Trade Off utility technique to define Disability Weights.Claiming to rely on no mathematical or economic theory,DALY users appear to have exempted themselves from verifying whether this indicator meets the classical properties required of all indicators,notably content validity,reliability,specificity,and sensitivity.The DALY concept emerged primarily to facilitate comparisons of the health impacts of various diseases globally within the framework of the Global Burden of Disease initiative,leading to numerous publications in international literature.Despite widespread adoption,the DALY synthetic indicator has prompted significant methodological concerns since its inception,manifesting in inconsistent and non-reproducible results.Given the substantial diffusion of the DALY indicator and its critical role in health impact assessments,a reassessment is warranted.This reconsideration is imperative for enhancing the robustness and reliability of public health decisionmaking processes.

The Sequential Mediating Roles of Body Pain and Self-Reported Health Status in the Relationship between Sleep Duration and Life Satisfaction

Objective This study examines the sequential mediating roles of body pain and self-reported health in the association between sleep duration and self-reported life satisfaction among elderly Chinese adults.Methods Data from the fifth wave of the China Health and Retirement Longitudinal Survey(CHARLS)were used to analyse the relationships between sleep duration and body pain,self-reported health,and life satisfaction through logistic regression and Restricted Cubic Spline(RCS)analyses.The sequential mediation effects of body pain and self-reported health status were examined via chain mediation analysis.Results Logistic regression analysis showed that sleeping fewer than 6 hours or 6-7 hours was linked to higher risks of body pain,poor health,and dissatisfaction with life compared to sleeping 7-8 hours(all P<0.05).Additionally,those sleeping more than 9 hours also had increased risks of poor health and dissatisfaction with life compared to those sleeping 7-8 hours(all P<0.05).Chain mediation analysis showed that body pain and self-reported health status sequentially mediated 46.15%of the association between sleep duration and life satisfaction.Conclusion Body pain and self-reported health may shape the relationship between sleep duration and life satisfaction in elderly Chinese adults.

Distressing symptoms and health-related quality of life in patients with chronic kidney disease

BACKGROUND Chronic kidney disease(CKD)is an incapacitating illness associated with distressing symptoms(DS)that have negative impact on patients’health-related quality of life(HRQOL).AIM To assess the severity of DS and their relationships with HRQOL among patients with CKD in Jordan.METHODS A descriptive cross-sectional design was used.A convenience sampling approach was used to recruit the participants.Patients with CKD(n=140)who visited the outpatient clinics in four hospitals in Amman between November 2021 and December 2021 were included.RESULTS The Edmonton Symptom Assessment System was used to measure the severity of the DS while the Short Form-36 tool was used to measure the HRQOL.Participants’mean age was 50.9(SD=15.14).Most of them were males(n=92,65.7%),married(n=95,67.9%),and unemployed(n=93,66.4%).The highest DS were tiredness(mean=4.68,SD=2.98)and worse well-being(mean=3.69,SD=2.43).The highest HRQOL mean score was for the bodily pain scale with a mean score of 68.50 out of 100(SD=32.02)followed by the emotional well-being scale with mean score of 67.60(SD=18.57).CONCLUSION Patients with CKD had suboptimal HRQOL,physically and mentally.They suffer from multiple DS that have a strong association with diminished HRQOL such as tiredness and depression.Therefore,healthcare providers should be equipped with the essential knowledge and skills to promote individualized strategies that focusing on symptom management.

Data-Driven Method for Predicting Remaining Useful Life of Bearings Based on Multi-Layer Perception Neural Network and Bidirectional Long Short-Term Memory Network

The remaining useful life prediction of rolling bearing is vital in safety and reliability guarantee.In engineering scenarios,only a small amount of bearing performance degradation data can be obtained through accelerated life testing.In the absence of lifetime data,the hidden long-term correlation between performance degradation data is challenging to mine effectively,which is the main factor that restricts the prediction precision and engineering application of the residual life prediction method.To address this problem,a novel method based on the multi-layer perception neural network and bidirectional long short-term memory network is proposed.Firstly,a nonlinear health indicator(HI)calculation method based on kernel principal component analysis(KPCA)and exponential weighted moving average(EWMA)is designed.Then,using the raw vibration data and HI,a multi-layer perceptron(MLP)neural network is trained to further calculate the HI of the online bearing in real time.Furthermore,The bidirectional long short-term memory model(BiLSTM)optimized by particle swarm optimization(PSO)is used to mine the time series features of HI and predict the remaining service life.Performance verification experiments and comparative experiments are carried out on the XJTU-SY bearing open dataset.The research results indicate that this method has an excellent ability to predict future HI and remaining life.

Effects of supervised movie appreciation on the improvement of college students’ life meaning sense

The purpose of this study was to explore the effects of supervised movie appreciation on improving the life meaning sense among college students. The intervention combined by “pre-video, post counseling” was conducted on the experimental group, while the control group received no intervention. Results have shown that the scores on the subscales of will to meaning, life purpose, life control, suffer acceptance and on the total scale have improved significantly. No gender difference was found on the intervention effect, and participants receiving intervention maintained higher level on related subscales a week later, indicating that supervised movie appreciation is an effective way to improve the life meaning sense among college students.

Meaning in life and well-being of older stroke survivors in Chinese communities: Mediating effects of mastery and self-esteem

The study aims to examine the role of mastery and self-esteem as a potential mediator of the relationship of meaning in life and well-being among older Chinese stroke survivors. A cross-sectional study was conducted in 214 community-dwelling older stroke survivors (128 men and 86 women), ranging from 60 years to 88 years old. The meaning in life, mastery, self-esteem and subjective well-being were measured. The results indicated that: 1) The meaning in life and subjective well-being of stroke survivors were significantly positive correlated;2) Mastery and self-esteem played partial mediating roles between existential vacuum and subjective well-being;Self-esteem played full a mediating role between suffer acceptance and subjective well-being;Mastery played a full mediating role between life control and subjective well-being;Mastery played a partial mediating role between death acceptance and subjective well-being;Self-esteem also played a partial mediating role between mastery and subjective well-being.

Childlife干预在儿童隐匿阴茎围术期护理中的应用

分析儿童隐匿阴茎围术期护理中采取Child life干预的效果。方法 选取2022年1月-2023年2月纳入的隐匿性阴茎儿童60例作为观察对象,经随机抽签法分组,对照组、观察组各有30例。两组分别采取常规护理、Child life干预,观察围术期患儿的心理状态,并评估患儿术后疼痛评分及护理满意度、护理依从性。结果 护理前,组间SAS及SDS评分相比,p>0.05;护理后,观察组SAS及SDS评分比对照组低,p<0.05;观察组Wong-Baker分值低于对照组,p<0.05;观察组依从性及护理满意度高于对照组,p<0.05。结论 在隐匿性阴茎儿童围术期护理中采取Child life护理模式可提升患儿的依从性、护理满意度,并改善患儿心理状态,减轻其疼痛感。

Meaning in Life and Mental Health Issues in Older Adults:A Meta-Analysis

This study aims to be the first to use meta-analysis to explore the relationship between meaning in life(MIL)and mental health issues among older adults.A meta-analysis was conducted using six databases,resulting in 16 studies with 5,074 participants in total.The“metacor”and“forestplot”packages in R-Studio were used for data analysis.The total effect was calculated using a random-effects model,with I2=86%in the heterogeneity test.The results showed a moderate negative correlation between MIL and mental health issues among older adults,with an average effect of−0.37.Five potential moderating variables were examined:the conceptualization of MIL(value vs.purpose),region(Asian vs.Western countries),residence status(community vs.nursing home vs.hospital),types of mental health issues,and evaluation methods(clinical vs.non-clinical).The first four had no significant moderating effect.The mean correlation coefficients between mental health issues and value/purpose were−0.49/−0.33;the mean correlation coefficients in Asian countries and Western countries were−0.48 and−0.34;the mean correlation coefficients among participants living in community/nursing home/mixed status were−0.33/−0.40/−0.40;the mean correlation coefficients between MIL and depression/others were−0.37/−0.35;however,the negative relationship between MIL and mental health issues was stronger when non-clinical evaluations(self-report only)were used.Specifically,the mean correlation coefficient for non-clinical evaluations was−0.42 and for clinical evaluations was−0.29.This study is the first meta-analysis to identify the negative correlation between older adults’MIL and mental health issues.Significant moderating effects of evaluation methods were found.

Mindfulness Associates Life Satisfaction:The Mediating Role of Internal Control and the Presence of Meaning in Life

This study explored the internal mechanism of the effect of mindfulness on life satisfaction from the perspective of logotherapy theory and achievement attribution theory.We recruited 1021 college students using a combination of random sampling and cluster sampling.They completed the relevant questionnaire.The results showed that,from the perspective of logotherapy theory,wefind that the presence of meaning in life is an important intermediary between mindfulness and life satisfaction.From the perspective of achievement attribution theory,we found that internal control was an important intermediary between mindfulness and life satisfaction.In addition,we also found the chain mediating path that mindfulness positively predicted life satisfaction by influencing internal control and then influencing the presence of meaning in life.This study proves for thefirst time that the theory of logotherapy and achievement attribution explain the internal mechanism of the relation of mindfulness on life satisfaction.This study provides an important reference for how to effectively improve life satisfaction from the perspective of mindfulness.

Depression by the Theory of Breathing and Finding Meaning of Life

This study aimed to examine the relationship of finding meaning to life with the level of depression and investigates the effect of using breathing theory in treating or reducing depression in a sample of individuals suffering from depression in the Kuwait Mental Health Center. In order to achieve these objectives, the researcher used the descriptive and analytical approach through an applied questionnaire on the study sample which consist of (380) individuals and the quasi-experimental approach by dividing the study sample individuals into two groups;control group consisted of (190) individuals and experimental group consist of (190) individuals. Also, the researcher developed meaning of life scale and breathing strategy, also used beck depression inventory scale. The study found a set of results, there is a negative relationship between finding meaning in life and depression and there are statistically significant differences between the members of the two groups due to the use of the breathing strategy, in favor of the experimental group. In the light of this result, the study came out with a set of recommendations, the most important of which are holding training and educational courses for depressed patients on ways and methods of finding meaning in life, as these courses have the benefit in reducing the level of depression among patients.

Ambient Robotics for Meaningful Life of the Elderly

It is innovative if people can be free from aged body and continue their career with assistance of robotics. It is supposed to see the change soon as smart phone changed life style. This research aims to figure out the direction of this change, development in technique for elders. It also studies various theories to justify various methods for ambient assistance robotic design for elders. In the long life expectancy world, this design will enhance the life quality of elders and encourage young people get pride in their own job, because their career will continue and it deserves to invest all their energy and sincerity in a specific area. As ambient robotics are a design for elders＇ adjacent assistive design and part of everyday, it is related with quality of elders＇ life. Some theories are cited for the importance of meaningful life. Meaningfulness is regarded as the fundamental goal of design purpose, because meaning stands upon the concept of human being and its consciousness activity. Phenomenological background of this research is introduced. It can be suggested in field observation to get real stories containing meanings and essence of life of elders. In conclusion, this study is a beginning of long process to prepare aging society with technique as well as perspective to see elders as valuable work force.

A Meaningful Life for Older Persons Receiving Municipal Care—Unit Leaders’ Perspectives

Introduction: In Sweden, new national guidelines for elderly care have been introduced containing core values and local guarantees of dignity that highlight the need for dignity, well-being and the organisation of the older person’s daily life, so it is perceived as meaningful. Unit leaders play a crucial role in health care organisations when guidelines are to be implemented. Aim: The aim was therefore to describe unit leaders’ experiences about what constituted a meaningful daily life for older persons receiving municipal care and the opportunities and obstacles that might exist. Method: Repeated interviews using reflective conversations with nine leaders were performed and analysed with qualitative content analysis. Results: Unit leaders felt a shared vision regarding a meaningful life was needed. Daily routines and habits that promoted independence, a feeling of community together with familiarity with the job, and got the little extra from knowledgeable staff were important. The historical collective paradigm in elderly care needed to be abandoned in favour of one promoting more individualism. Fundamental was the courage to ask the older person what was important and dared to follow through to “Give power to the older person to decide what care to be given”. Conclusion: Organisational conditions affect unit leaders’ ability to succeed in the implementation of the work. Further studies are required regarding the nature of the support that the unit leaders need to succeed in their work.

Investigation of the quality of life,mental status in patients with gynecological cancer and its influencing factors

BACKGROUND Having a gynecological tumor or undergoing treatment can be a traumatic experience for women,as it affects their self-image and sexual relationships and can lead to psychological reactions.Psychological adjustment following cancer occurrence remains a key issue among the survivors.AIM To examine the current status of quality of life(QoL),anxiety,and depression in patients with gynecological cancer and to analyze the factors associated with it.METHODS Data for 160 patients with gynecological malignancies treated at Shanxi Bethune Hospital from June 2020 to June 2023 were collected and analyzed retrospectively.Patients’QoL was assessed using the European Organization for Research on Treatment of Cancer Quality of Life Questionnaire Core 30 and the Functional Assessment of Cancer Therapy-General Questionnaire.Their emotional status was evaluated using the Self-Rating Anxiety/Depression Scale.The associated factors of anxiety and depression were analyzed.RESULTS The overall QoL score of the patients 6 months after surgery was 76.39±3.63 points.This included low levels of social and emotional function and severe fatigue and pain.The scores for physiological,functional,emotional,social,and family well-being exhibited an upward trend following surgery compared with those before surgery.One month after surgery,some patients experienced anxiety and depression,with an incidence of 18.75%and 18.13%,respectively.Logistic analysis revealed that good sleep was a protective factor against anxiety and depression in patients with gynecological tumors,whereas physical pain was a risk factor.CONCLUSION Patients with gynecological malignancies often experience anxiety and depression.By analyzing the factors that affect patients’QoL,effective nursing measures can be administered.

The Ethics and the Meaning of Life among College Students

The concern of the ethics and the meaning of life in young adults became universal and are present in all contexts of human life. Such universality is due to the development of modern rationality, to establish a relationship between the intrinsic theoretical dimensions (scientific) and practical dimensions (ethical), originated that are present in the own array of knowledge. This descriptive cross-sectional study, aims to identify the values of the ethical dimension and meaning of life defended by the college students of the Universities of Madeira, Portugal and Fortaleza, Brazil. The sample consists of 605 University students (Madeira = 225 and Fortaleza = 380), with an average age of 21 years and a standard deviation of 2. We used the questionnaire on values (adapted from the European Values Survey). Most of the young people referred to have a religion (60% wood and 78.4% stronghold), being the most Catholic, however, present in your frequency disinterest and, yet, in Brazil there is a greater diversity of religions. Supporting the intervention of religious institutions in situations of everyday life is accepted mostly by Brazilians, with the exception of politics (35.5%). On the other hand, the university students of the University of Madeira understand that Religious Institutions should only give their opinion on racial discrimination (76.6%). Believe in God (90.8% and 55.1% Stronghold) and Soul (80.3% and 66.4% Stronghold) are beliefs more referred to by college students. These results are intended to contribute in the field of research on ethical values and meaning of life in young people. This study contributes to future comparative research among university students and to developing strategic programs in education and health, increasing the success and excellence in the formation of a full citizenship, preventing the fanaticisms and the social discrimination that today devastate the collective globally.

Accurate and efficient remaining useful life prediction of batteries enabled by physics-informed machine learning

The safe and reliable operation of lithium-ion batteries necessitates the accurate prediction of remaining useful life(RUL).However,this task is challenging due to the diverse ageing mechanisms,various operating conditions,and limited measured signals.Although data-driven methods are perceived as a promising solution,they ignore intrinsic battery physics,leading to compromised accuracy,low efficiency,and low interpretability.In response,this study integrates domain knowledge into deep learning to enhance the RUL prediction performance.We demonstrate accurate RUL prediction using only a single charging curve.First,a generalisable physics-based model is developed to extract ageing-correlated parameters that can describe and explain battery degradation from battery charging data.The parameters inform a deep neural network(DNN)to predict RUL with high accuracy and efficiency.The trained model is validated under 3 types of batteries working under 7 conditions,considering fully charged and partially charged cases.Using data from one cycle only,the proposed method achieves a root mean squared error(RMSE)of 11.42 cycles and a mean absolute relative error(MARE)of 3.19%on average,which are over45%and 44%lower compared to the two state-of-the-art data-driven methods,respectively.Besides its accuracy,the proposed method also outperforms existing methods in terms of efficiency,input burden,and robustness.The inherent relationship between the model parameters and the battery degradation mechanism is further revealed,substantiating the intrinsic superiority of the proposed method.

Remaining Useful Life Prediction Method for Multi-Component System Considering Maintenance:Subsea Christmas Tree System as A Case Study

Maintenance is an important technical measure to maintain and restore the performance status of equipment and ensure the safety of the production process in industrial production,and is an indispensable part of prediction and health management.However,most of the existing remaining useful life(RUL)prediction methods assume that there is no maintenance or only perfect maintenance during the whole life cycle;thus,the predicted RUL value of the system is obviously lower than its actual operating value.The complex environment of the system further increases the difficulty of maintenance,and its maintenance nodes and maintenance degree are limited by the construction period and working conditions,which increases the difficulty of RUL prediction.An RUL prediction method for a multi-omponent system based on the Wiener process considering maintenance is proposed.The performance degradation model of components is established by a dynamic Bayesian network as the initial model,which solves the uncertainty of insufficient data problems.Based on the experience of experts,the degree of degradation is divided according to Poisson process simulation random failure,and different maintenance strategies are used to estimate a variety of condition maintenance factors.An example of a subsea tree system is given to verify the effectiveness of the proposed method.

Qualitative exploration of home life experiences and care needs among elderly patients with temporary intestinal stomas

BACKGROUND This study employed a phenomenological research approach within qualitative research to explore the challenges encountered by elderly individuals with temporary colostomies in managing their daily lives and care needs.Protecting the anus surgery combined with temporary colostomy has emerged as a prevalent treatment modality for low rectal cancer.However,the ileostomy is susceptible to peri-stoma skin complications,as well as fluid,electrolyte,and nutritional imbalances,posing challenges to effective management.The successful selfmanagement of patients is intricately linked to their adjustment to temporary colostomy;nonetheless,there remains a dearth of research examining the factors influencing self-care among temporary colostomy patients and the obstacles they confront.AIM To investigate the lived experiences,perceptions,and care requirements of temporary colostomy patients within their home environment,with the ultimate goal of formulating a standardized management protocol.METHODS Over the period of June to August 2023,a purposive sampling technique was utilized to select 12 patients with temporary intestinal stomas from a tertiary hospital in Shanghai,China.Employing a phenomenological research approach,a semi-structured interview guide was developed,and qualitative interviews were conducted using in-depth interview techniques.The acquired data underwent coding,analysis,organization,and summarization following Colaizzi’s seven-step method.RESULTS The findings of this study revealed that the experiences and needs of patients with temporary intestinal stomas can be delineated into four principal themes:Firstly,Temporary colostomy patients bear various burdens and concerns about the uncertainty of disease progression;secondly,patients exhibit limited self-care capabilities and face information deficits,resulting in heightened reliance on healthcare professionals;thirdly,patients demonstrate the potential for internal motivation through proactive self-adjustment;and finally,patients express a significant need for emotional and social support.CONCLUSION Home-living patients with temporary intestinal stomas confront multifaceted challenges encompassing burdens,inadequate self-care abilities,informational deficits,and emotional needs.Identifying factors influencing patients’self-care at home and proposing strategies to mitigate barriers can serve as a foundational framework for developing and implementing nursing interventions tailored to the needs of patients with temporary intestinal stomas.

Effect of lens surgery on health-related quality of life in preschool children with congenital ectopia lentis

AIM:To evaluate the effect of lens surgery on health-related quality of life(HRQoL)of preschool children with congenital ectopia lentis(CEL).METHODS:A prospective self-controlled study was conducted in Zhongshan Ophthalmic Center.Children aged from 5 to 7y whom were diagnosed with CEL and underwent phacoemulsification with scleral-fixated posterior chamber intraocular lens implantation and their parents were enrolled in this study.All of them completed the child and proxy(parental)PedsQL™4.0 before and after the surgery.Their preoperative scores were compared to their postoperative ones.Subgroup analyses were performed based on gender and preoperative bilateral presenting visual acuity of the children.RESULTS:Thirty-two children with CEL successfully underwent surgery without any complications,among whom 8 had monocular surgery and 24 had binocular surgery.Preoperative and postoperative questionnaires were completed by 32 child-parent pairs.Surgical intervention could significantly improve the vision of affected children(P<0.001).The medians of physical,psychosocial and total health scores self-reported by the children were 68.75(62.50,81.25),65.00(60.00,80.00)and 67.39(60.87,78.26)preoperatively and were 93.75(87.50,100.00),90.00(83.33,96.67)and 89.13(85.32,95.65)postoperatively.The preoperative scores of the affected children were significantly lower in all scales than age-matched healthy children(P<0.001).All the postoperative scores were significantly higher than the preoperative scores in affected children and their parents(P<0.001).In the physical functioning evaluation,the preoperative score reported by parents of girls was higher than parents of boys(P=0.041),and the postoperative score of girls was higher than that of boys(P=0.036).CONCLUSION:CEL is associated with significantly worse quality of life in preschool children.Surgical intervention can significantly improve the HRQoL in affected children from both personal and family perspective.