Can parents adjust to the idea that their child is at risk for a sudden death?: Psychological impact of risk for long QT syndrome

Can a parent adjust to the idea that its child is at risk for a sudden death? This question is raised by a diagnostic procedure in which children were tested for an inherited Long QT Syndrome (LQTS). This potentially life-threatening but treatable cardiac arrhythmia syndrome may cause sudden death, especially in children and young adults. The long-term psychological effects are described for parents whose children were tested for inherited LQTS. The adverse short-term impact of such testing has been described previously. The goal of this investigation is to determine whether this distress endures. Thirty-six parents completed measures of psychological distress. With the twenty-four parents of carrier children, a semi-structured interview was held 18 months after DNA disclosure. Parents of carrier children reported more distress than parents of non-carrier children. Parents of carrier children remained vulnerable to high levels of distress; up to one-third of these parents showed clinically relevant high levels of distress. High levels of distress were reported by parents of carrier children who (1) were highly distressed at previous assessments, (2) were familiar with the disease for a longer time, (3) had experienced a sudden death in the family, (4) were lesser educated, and who (5) were unsatisfied with the given information. Parents were particularly concerned about possible hazardous behavior during puberty. We conclude that the continuous threat of developing LQTS symptoms despite prophylactic treatment affected the psychological well-being of the parents for a long time. In light of the tempetuous developments in the areas of cardiac genetics, periodical information on new insight and developments may act as a buffer for the parents' (growing) concerns about their child's inherited disorder.     

Impact on parents of HLA-DQ2/DQ8 genotyping in healthy children from coeliac families

Due to the association of coeliac disease and HLA-specificities DQ2 and DQ8, HLA-typing can be used for risk determination of the disease. This study was designed to evaluate the knowledge of parents from coeliac families regarding HLA-typing and the impact of HLA-typing on the perception of the health of their children. A structured questionnaire was sent to the Dutch, Spanish and German parents participating with their child in the European PreventCD study on disease prevention in high-risk families, addressing parents'' understanding of and attitude towards HLA-typing, distress related to HLA-typing and perceived health and health-related quality of life of their children. Sixty-eight percent of parents of 515 children returned the questionnaires, with 85% of children being DQ2/DQ8 positive. The majority of all parents answered the questions on knowledge correctly. Forty-eight percent of parents of DQ2/DQ8-negative children thought their child could develop coeliac disease. More distress was reported by parents of DQ2/DQ8-positive children (P<0.001). All parents showed few regrets and would repeat HLA-typing in future children. Perceived health and health-related quality of life were similar. In conclusion, we can say that misinterpretation of DQ2/DQ8-negative results by parents is frequent. DQ2/DQ8-positive results do not affect perceived health and health-related quality of life of children but may cause temporary negative feelings among parents. Parents of coeliac families seem to support HLA-typing.     

Predicting inept discipline: The role of parental depressive symptoms, anger, and attributions

Relations among parents' psychological difficulties (i.e., depressive symptoms, overt anger), dysfunctional attributions for child misbehavior, and inept discipline were investigated in a representative community sample of 451 mothers and 449 fathers. Depressive symptoms and anger were hypothesized to relate to discipline via their link with parents' attributions. Path analyses revealed that depressive symptoms predicted parent-centered causal attributions (i.e., stable, global, and dispositional), which, in turn, related to laxness. Depressive symptoms also predicted child-centered responsibility attributions (i.e., controllable, intentional, and negative), which, in turn, related to overreactivity. Anger predicted overreactivity directly. The patterns of relations were similar for fathers and mothers. The importance of addressing parents' psychological difficulties and dysfunctional attributions in interventions for families with disruptive children is discussed.     

Self-efficacy and overprotection are related to quality of life, psychological well-being and self-management in cardiac patients

This repeated-measures study explores how self-efficacy and overprotection relate to psychological well-being, health-related quality of life and self-management. Eighty-two cardiac patients, suffering from congestive heart failure (CHF) or myocardial infarction (MI), completed questionnaires at T1 and three months later. Perceived overprotection is associated with concurrent levels of anxiety and depression, and lowered quality of life. Self-efficacy is related to psychological well-being in both patient groups, but only associated with quality of life in CHF patients. In addition, self-efficacy predicts MI patients' self-management behaviours in the medium term. Findings have implications for cardiac rehabilitation, where attention may usefully be focused on enhancing self-efficacy and dealing with issues of support and overprotection by the partner.     

Changes in Illness Perceptions and Quality of Life During Participation in Cardiac Rehabilitation

Background

The beliefs patients hold about their disease and corresponding treatment have been shown to predict recovery in cardiac patients.

Purpose

However, it is not known to what extent these beliefs change during participation in cardiac rehabilitation and whether this is related to psychological indicators of outcome.

Method

Illness perceptions and health-related quality of life (HRQOL) were measured upon entry to (T0) and completion of (T1) a 3-month outpatient cardiac rehabilitation program in 158 cardiac patients.

Results

Repeated-measures ANOVA revealed that all illness perceptions other than timeline and personal control changed significantly over the course of cardiac rehabilitation. Overall, cardiac rehabilitation patients came to view their illness as more benign. Further analysis revealed that perceiving fewer emotional consequences of the illness, gaining a better understanding, and attributing fewer symptoms to the illness at the end of cardiac rehabilitation, was related to better HRQOL.

Conclusion

Illness perceptions change during cardiac rehabilitation and these changes are associated with enhanced quality of life. Clinical trials have shown illness beliefs in cardiac patients to be modifiable during hospital admission; our results suggest that cardiac rehabilitation may provide a second window of opportunity during which illness perceptions can be actively monitored and modified if maladaptive.     

Carrier testing of children for two X linked diseases in a family based setting: a retrospective long term psychosocial evaluation

The question of whether genetic carrier testing should be performed on children has been the subject of much debate. However, one important element has been lacking from this debate. There has been practically no knowledge of how those tested in childhood have experienced carrier testing. Twenty three subjects in families affected by Duchenne muscular dystrophy and 23 in families affected by haemophilia A, all of whom had been tested during childhood for carriership in the Department of Medical Genetics, University of Helsinki, from 1984 to 1988, participated in our study. We investigated long term psychosocial consequences of carrier testing in childhood. A questionnaire relating to sociodemographic background and life situation was used, together with assessment of health related quality of life (HRQOL) using the RAND 36 item Health Survey 1.0 (RAND). RAND results showed that the emotional, social, and physical well being of the young female subjects was not statistically different from those of control female subjects at a similar age. We also found no statistically significant differences in means in any RAND dimension (p<0.146) between carriers, non-carriers, and a group in which carrier status was uncertain. However, two out of seven carriers reported that they were worried and three that they were slightly worried about the test result. Four out of 22 young female subjects in the uncertain group reported being worried and 11 reported being slightly worried.


Keywords: carrier testing in childhood; health related quality of life; psychosocial consequences; RAND     

肾病综合征患儿的行为、家庭环境及其父母生活质量的调查

目的:了解肾病综合征患儿(NS)的行为、家庭环境及其父母的生活质量,为NS患儿及其父母的心理干预治疗提供理论依据.方法:分别采用Achenbach's儿童行为量表(CBCL)、家庭环境量表中文版(FES-CV)及生活质量综合评定问卷(GQOLI-74)调查男性NS患儿及其父母32例,对照组为正常男孩及其父母45例.结果:NS组男孩行为问题检出率为31%,高于对照组20%,但无统计学意义(χ2=1.3,P>0.05);男孩在体诉(t=3.02)、社交退缩(t=2.13)及攻击性(t=3.1)3个行为因子上得分与对照组差异显著(P<0.05～0.01).家庭环境在娱乐性上与对照组有显著差异(P<0.05).而父母生活质量则除住房、社区服务、生活环境、自尊、社会支持、人际交往能力及婚姻与家庭外,其余因子均与对照组存在显著差异(P<0.01).结论:NS患儿的某些行为及其父母的生活质量有改变,应引起医护人员的重视,适当的心理干预治疗是必要的.     

Relationship of Parental Psychological Distress to Consequences of Chronic Health Conditions in Children

Objective: To assess whether parents' self-reported psychologicaldistress was related to consequences of chronic health conditionsin their children as reflected by three domains: functionallimitations, reliance on compensatory mechanisms, and serviceuse above routine care. Methods: We used telephone survey data on children's healthand parents' psychiatric symptoms from an inner-city communitysample (n = 380) and a population-based national sample (n =398). Results: In the national sample, parents of children with functionallimitations were more distressed than parents whose childrenexperienced other types of condition consequences or none. Inthe inner-city sample, presence of a health condition was associatedwith greater parental distress, but there were no significanteffects by consequence type. Conclusions: Research needs to determine if parents of childrenwith functional limitations represent a high-risk group andto identify the factors associated with their elevated distress.     

Convergence between attachment classifications and natural reunion behavior among children and parents in a child care setting

The current study examined the convergence between young children's attachment classifications in the laboratory-based Strange Situation Procedure and children's and parents' behaviors during naturalistic reunions after a day in child care. Fifty-eight parent-child dyads participated in this study. Children's attachment security assessed from the Strange Situation Procedure was significantly associated with ratings of children's security, avoidance, and delight toward their parents during the natural reunion episodes, and with parents' responsiveness during the natural reunion episodes. These findings suggest that natural reunions at the end of the day in child care reflect the quality of attachment relationships between young children and their parents.     

Meaning and Status of Health-related Quality of Life Recognized by Medical Professionals: a Qualitative Study

BackgroundMedical professionals must maintain their health to provide quality medical care to patients safely. However, the health-related quality of life of medical professionals is a complex issue that currently lacks a standardized evaluation approach. Therefore, the purpose of this study was to identify their perceptions of the health-related quality of life of medical professionals and explore ways to measure their quality of life as accurately.MethodsThis study explored the subjective health status and well-being of Korean medical professionals by conducting three focus group discussions (FGDs) with 12 physicians and 6 nurses (November to December 2019). In the FGD, we elicited participants'' opinions on existing health-related quality of life measurement tools. Also, we analyzed transcribed data through content analysis.ResultsParticipants in this study noted the ambiguity in the current definitions of health provided by the World Health Organization. They shared various problems of their health, mainly concerning fatigue and sleep disorders due to their work pattern. Also, participants shared anxiety, burden, and fear of negative consequences due to the complexity of their work. Participants voiced the necessity of a questionnaire on health-related quality of life that reflects the working lives of medical professionals.ConclusionMedical professionals in Korea were mainly criticizing about health-related quality of life problems caused by their work characteristics. The results of this study will provide valuable information for future health-related quality of life surveys targeting medical professionals in Korea, and also help to determine the method for monitoring the health-related quality of life for health professionals. In addition, the aspects and items identified by medical professionals as important for their health-related quality of life may be used as a basis for developing a new health-related quality of life measurement tools for medical professionals.     

Quality of life in cardiovascular disease

Psychosomatic understanding of the consequences of cardiovascular disorders has had relatively little influence on the separate literature describing quality of life and evaluating interventions. This is partly because psychosomatic research has been too narrowly focussed but mainly because concepts and measures of quality of life take a limited view of its psychological aspects and neglect the significance of individual meaning. There is a need for more research which is based on carefully selected specific measures of quality of life chosen as being of particular importance to patients and to the hypotheses being tested. It is also essential to be aware of the wide range of individual response to cardiovascular disorders. Review of syndromes shows that there is considerable scope to improve understanding of the psychological aspects of quality of life and to develop and evaluate psychological interventions.     

Health-related quality of life of children with primary immunodeficiency disease: a comparison study.

BACKGROUND: Many symptoms of primary immunodeficiency (PI) disease can be successfully managed with intravenous immunoglobulin infusion. Although survival rates and prognosis have greatly improved, children with PI disease are still at risk for physical, social, and psychological problems owing to their chronic health condition. However, to our knowledge, there are no empirical data concerning health-related quality of life (HRQOL) in children with PI disease receiving intravenous immunoglobulin infusion. OBJECTIVE: To compare parental reports of HRQOL of children with PI disease receiving intravenous immunoglobulin infusion with children with juvenile idiopathic arthritis (JIA) and a healthy sample. METHODS: Demographic, illness, and HRQOL data were collected from parents of 4- to 18-year-old children with PI disease (n = 36), children with JIA (n = 36), and healthy children (n = 36). The HRQOL was evaluated using the Child Health Questionnaire-Parent Report version. RESULTS: Compared with children with JIA, children with PI disease were similar in many aspects of their HRQOL. However, parents of children with PI disease reported greater limitations in their personal time, poorer general health of their children, greater limitations in their children's physical functioning and family activities, and less bodily pain than children with JIA. In contrast, children with PI disease scored lower on most HRQOL domains compared with healthy children. CONCLUSION: Children with PI disease experience similar HRQOL to children with JIA and poorer HRQOL than healthy children, indicating potential areas to be addressed by future medical and psychosocial interventions.     

Genital herpes and quality of life

Genital herpes is a frequent chronic, sexually-transmitted disease among adults. Besides its physical consequences that largely depend on the frequency and intensity of recurrences, genital herpes frequently induces a psychological morbidity. This paper discusses the instruments of measure that can be used in the evaluation of health-related quality of life among infected patients and states the results of a French study that confirmed the substantial psychological morbidity caused by genital herpes.     

Exercise participation, body mass index, and health-related quality of life in women of menopausal age

BACKGROUND: Menopausal symptoms can affect women's health and wellbeing. It is important to develop interventions to alleviate symptoms, especially given recent evidence resulting in many women no longer choosing to take hormone replacement therapy. Exercise may prove useful in alleviating symptoms, although evidence on its effectiveness has been conflicting. AIM: To examine the association between exercise participation, body mass index (BMI), and health-related quality of life in women of menopausal-age. DESIGN OF STUDY: Survey of women of menopausal age. SETTING: West Midlands, England. METHOD: Women aged 46-55 years (n = 2399) registered with six general practices in the West Midlands were sent a questionnaire containing items relating to demographics, lifestyle factors, weight, height, exercise participation, menopausal bleeding patterns, and health-related quality of life (including vasomotor symptoms). RESULTS: One thousand two hundred and six (50.3%) women replied. Women who were regularly active reported better health-related quality of life scores than women who were not regularly active (P<0.01 for all significant subscales). No difference in vasomotor symptoms was recorded for exercise status. Women who were obese reported significantly higher vasomotor symptom scores than women of normal weight (P<0.01). Women who were obese reported significantly higher somatic symptoms (P<0.001) and attractiveness concern scores (P<0.001) than women of normal weight or those who were overweight. CONCLUSION: The data suggest a positive association between somatic and psychological dimensions of health-related quality of life and participation in regular exercise. Women with BMI scores in the normal range reported lower vasomotor symptom scores and better health-related quality of life scores than heavier women. Further evidence from high-quality randomised controlled trials is required to assess whether exercise interventions are effective for management of menopausal symptoms.     

Quality of life and psychological functioning of pediatric and young adult patients with Gaucher disease,type 1

This study examined the health‐related quality of life (HRQoL) and psychological functioning of children and young adults with Gaucher disease, type 1 (GD1). Thirty‐two (17 pediatric, 15 young adult) patients with GD1 and one parent completed age‐appropriate assessments of HRQoL, emotional, and behavioral health. The HRQoL of children with GD1 was compared with a healthy sample and to children diagnosed with Fabry disease (FD; another lysosomal storage disease), while young adults were compared to a healthy sample and to patients with self‐reported chronic illnesses. Children with GD1 reported significantly lower HRQoL across all domains relative to healthy counterparts yet comparable HRQoL compared to children with FD. Young adults reported mildly lower physical functioning than healthy peers, but no differences in HRQoL relative to the chronic illness sample. Parent‐reported symptom severity was associated with poorer HRQOL in children but not young adults. Few group differences in psychological functioning were observed, except young children showed more school problems than the normative average and there was a trend toward internalizing symptoms. Overall, results consistently identified younger patients with GD1 as more affected than older patients in HRQoL and psychological domains. Implementation of psychosocial interventions may be particularly beneficial during early childhood.     

父母不良习惯对儿童心理健康的影响

目的探讨父母不良习惯对儿童心理健康的影响。方法采用问卷调查的方式对1280名儿童的心理状况及其父母的不良习惯进行调查,并进行均值比较、方差分析。结果父母具有不良习惯的家庭比正常家庭存在更多的心理问题,两者进行均值比较、方差分析,具有非常显著的差异(P0.001)。结论父母的不良习惯影响儿童的心理健康,父母要重视家庭环境的改善,以促进儿童的健康成长。     

The effects of nurse-led health coaching on health-related quality of life and clinical health outcomes among frequent attenders: A quasi-experimental study

ObjectiveTo evaluate the effects of the nurse-led health coaching on health-related quality of life and clinical health outcomes among frequent attenders in primary healthcare.MethodsA quasi-experimental study design. A total of 110 patients were enrolled in the study. The experimental group (n = 52) received nurse-led health coaching and the control group (n = 58) received the usual care at primary health care centres in Finland. The data were collected before the intervention and 12 months via a questionnaire of health-related quality of life and clinical health outcomes as measured by health-coaching nurses.ResultsThis study found frequent attenders have low health-related quality of life. The nurse-led health coaching showed no differences in health-related quality of life between the experimental and control groups. However, the nurse-led health coaching had statistically significant effects on the blood pressure and health-related quality of life among the experimental participants, especially in emotional role limitation and energy.ConclusionsThis study suggests that nurse-led health coaching may lead to an improvement in the health-related quality of life and blood pressure among frequent attenders.Practice ImplicationsThe health-coaching sessions with own health-coaching nurses and action plans support the frequent attenders´ health promotion goals and implementation.     

Culture and the socialization of child cardiovascular regulation at school entry in the US

The measurement of cardiovascular functioning targets an important bridge between social conditions and differential well‐being. Nevertheless, the biocultural, psychosocial processes that link human ecology to cardiovascular function in children remain inadequately characterized. Childrearing practices shaped by parents' cultural beliefs should moderate children's affective responses to daily experience, and hence their psychophysiology. The present study concerns interactions among family ecology, the normative social challenge of entry into kindergarten, and parasympathetic (vagal) cardiac regulation in US middle‐class children (N = 30). Although parents believed children must be protected from overscheduling to reduce stress and improve socio‐emotional adaptation, maternal rather than child schedules predicted parasympathetic regulation during a nonthreatening social engagement task following school entry. Children of busier married mothers, but less busy single mothers, showed the context‐appropriate pattern of parasympathetic regulation, low respiratory sinus arrhythmia (RSA). These findings are expected if: maternal and family functioning, rather than the scheduling of the child's daily life, principally drive young children's cardiovascular responsiveness to a normative challenge; and busy schedules represent high family functioning with married mothers, but not under single‐parent conditions wherein adult staffing is uniquely constrained. Family ecology is shaped by culture, and in turn shapes the development of children's cardiovascular responses. Appropriately fine‐grained analysis of daily experience can illustrate how culturally driven parenting practices may have unintended consequences for child biological outcomes that vary by family structure. Am. J. Hum. Biol., 2008. © 2008 Wiley‐Liss, Inc.