Different perspectives in psychiatry: how family-oriented are professionals in Germany?

ΒACKGROUND: Children of parents with a mental illness have up to 50% chance of developing a mental illness themselves. Numerous studies have shown that preventive family-oriented interventions can decrease the risk by 40% and that professionals are a decisive factor influencing family-oriented practice. There are also substantial differences between professions in terms of their family-oriented practices. This study examines the level of family-oriented practice for different professional groups in Germany. METHODS: Data were used from the baseline assessment of the two-group randomized controlled multicenter trial ci-chimps as a subproject of CHIMPS-NET, which took place from January 2020 to May 2021 in 18 clinical centers in Germany. Child and adolescent mental health systems as well as adult mental health systems took part and every professional involved in the treatment was invited to participate. Data was used from 475 mental health professionals including physicians, psychologists, psychotherapists for adults and for children and adolescents, occupational/ music/ physio/ art therapists/ (social) education workers and nursing/ education service. Family-oriented mental health practice was examined using the translated version of the Family-Focused Mental Health Practice Questionnaire (FFMHPQ) with means and standard deviations calculated for each of the 18 FFMHPQ-GV subscales. ANOVAs were computed to compare professions and significant differences were examined via post hoc analyses (Scheffé). Additionally, effect sizes were calculated (Omega squared). RESULTS: Differences were seen between the professions in all aspects of family-oriented practice: Both regarding organizational policy and support aspects, issues concerning working with parent-clients, as well as professional skills and knowledge aspects. Psychotherapists for children and adolescents scored the highest family-oriented practices compared to all other professional groups on almost all subscales. CONCLUSION: This study examines the level of family-oriented practice for different professional groups in Germany. Apart from skills and knowledge about the impact of mental illness and parenting, psychotherapists for children and adolescents had the highest scores and engaged most in family-oriented practice. Psychotherapists for adults got the least workplace support for family-oriented practice but were competent providing resources and referral information to the concerned families and feel confidence working with them. Due to these results, a training need exists to improve skills and knowledge about the impact of mental illness and parenting. Additionally, there is still potential for institutional support in promoting family-oriented work. TRIAL REGISTRATION: The CHIMPS-NET-study was registered with the German Clinical Trials Register on 2019-12-19 (DRKS00020380) and with Clinical Trials on 2020-4-30 (NCT04369625), the ci-chimps-study was registered with the German Clinical Trials Register (DRKS00026217) on 2021-08-27 and with Clinical Trials on 2021-11-04 (NCT05106673).

Are 6 more accurate than 4? The influence of different modes of delivery on postpartum depression and PTSD.

BACKGROUND: Empirical evidence shows that 4.6-6.3% of all women develop a post-traumatic stress disorder (PTSD) and approximately 10-15% postpartum depression (PPD) following childbirth. This study explores the relationship between delivery mode and the occurrence of PTSD and PPD, specifically examining four distinct caesarean section (CS) modes: primary on maternal request (Grade 4), medically indicated primary (Grade 3), secondary CS from relative indication (Grade 2) and emergency secondary CS (Grade 1), compared to vaginal and assisted vaginal delivery (AVD). The research aims to understand how these six subcategories of delivery modes impact PPD and PTSD levels. Common predictors, including the need for psychological treatment before childbirth, fear of childbirth, planning of pregnancy, induction of labor, birth debriefing, and lack of social support after childbirth, will be analyzed to determine their association with postpartum mental health outcomes. METHODS: The study was planned and carried out by a research team of the psychology department at the Medical School Hamburg, Germany. Within an online-study (cross-sectional design) N = 1223 German speaking women with a baby who did not die before, during or after birth were surveyed once between four weeks and twelve months postpartum via an anonymous online questionnaire on demographic and gynecological data, delivery mode, PTSD (PCL-5) and PPD (EPDS). RESULTS: For both psychiatric disorders, ANOVA revealed significant differences between delivery mode and PPD and PTSD. With weak effects for PPD and medium to strong effects for PTSD. Post-hoc tests showed increased levels of PPD for two CS types (Grade 1, Grade 3) compared to vaginal delivery. For PTSD, secondary CS from relative indication (Grade 2), emergency secondary CS (Grade 1) and assisted vaginal delivery (AVD) were associated with elevated levels of PTSD. Regression analysis revealed delivery mode as a significant predictor of EPDS- (medium effect size) and PCL-5-Score (medium to high effect size). LIMITATION: Delivery was considered as the potential traumatic event, and any previous traumas were not documented. Additionally, the categorization of delivery modes relied on subjective reports rather than medical confirmation. CONCLUSION: The study highlights the influence of delivery mode on the mental health of postpartum mothers: different modes influence postpartum disorders in various ways. However, the definition of delivery mode was only stated subjectively and not medically confirmed. Further research should investigate which aspects of the different delivery modes affect maternal mental health and explore how the perception of childbirth may be influenced by specific delivery experiences.

The cost-utility of an intervention for children and adolescents with a parent having a mental illness in the framework of the German health and social care system: a health economic evaluation of a randomized controlled trial.

BACKGROUND: Children of families with a parent with a mental illness have an increased risk of developing social and mental health problems resulting in decreased quality of life. Therefore, children and adolescents living in families with a parent with mental illness are regarded as a target group for preventive interventions. To date, only a few economic evaluation studies for interventions directed at preventing the intergenerational transmission of mental health problems exist. In this investigation we estimated the cost utility of an intervention for the support of children and adolescents with a parent having a mental illness from the perspective of the German health and social care system. METHODS: We randomly assigned a total of 214 families with 337 children and adolescents to the intervention (INT) group (108/170) or the control (TAU) group (106/167). Families in the intervention group received on average eight intervention sessions (50-90 min) over 6 months. We estimated total cost of illness by means of the Children and Adolescent Mental Health Service Receipt Inventory (CAMHSRI) over 24 months. For the estimation of Quality-Adjusted Live Years (QALYs) we applied the KIDSCREEN-10. For estimating the incremental cost-utility of the intervention compared to treatment as usual we used the net-benefit approach. RESULTS: We estimated the annual cost of illness amounting to € 3784.59 (SD € 8581.11) in the TAU group and € 3264.44 (SD € 9431.89) in the INT group. The annual cost difference between INT and TAU was € - 516.14 (SE 1124.95) which was not significant (p ≤ 0.05). We estimated the average QALY to be 0.759 (SD 0.073) in the TAU group and 0.763 (SD 0.072). The QALY difference between INT and TAU was 0.0037 (SE 0.0092) which was not significant (p ≤ 0.05). The incremental cost utility ratio (ICUR) indicated that the gain of one additional year in full health by means of the intervention was associated with the saving of € 139.49. However, the stochastic insecurity of the ICUR did not allow a unique decision about the cost-utility of the intervention. CONCLUSIONS: More information on the economic value of the intervention for families with a parent with mental illness in comparison to treatment as usual in Germany is needed. TRIAL REGISTRATION: ClinicalTrials.gov, identifier NCT02308462; German Clinical Trials Register: DRKS00006806.

Living with a rare disease - experiences and needs in pediatric patients and their parents.

BACKGROUND: A rare disease (RD) diagnosis and therapy can affect the family's quality of life and mental health. A lack of information and missing care options lead to helplessness and psychological stress within families. This work aims to identify patients' and parents' experiences in daily life and with the health care system as well as their needs and current pathways to psychosocial care to develop implementation strategies adapted to the families' needs. METHODS: The present analysis is part of the national multicenter study "Children Affected by Rare Disease and Their Families-Network (CARE-FAM-NET)." We conducted semi-structured telephone interviews with children, adolescents, and young adults with RD (aged 12 to 21 years) and parents of children with RD (aged 0 to 17 years). We analyzed the transcribed and anonymized interviews using the method of focused interview analyses to identify previous experiences with medical and psychosocial care and possible needs for improvement and support. RESULTS: Seventy-four parents of children with RD and 15 children, adolescents, and young adults with RD participated. Five main themes emerged. Daily life with an RD: RD affects the everyday and social life of the respondents, negatively impacting mental well-being. Experiences with the health care system: The long diagnostic path is stressful for families. Professionals' lack of information/education leads to inadequate care for those affected. Psychosocial support: Families do not know about psychosocial care services. In some cases, the families take advantage of psychosocial support services (such as support groups or advocacy groups), which are predominantly very helpful. Difficulties and barriers: Time, socio-legal and organizational problems burden families and lead to advantages in using psychosocial services. Improvements for patient-oriented support: Those affected wished for timely, preventive support (especially in administrative and socio-legal matters) and education regarding psychosocial care services. CONCLUSION: RD represent a great challenge for all family members - patients, parents, and siblings. The patients' and parents' previous experiences in daily life, medical and psychosocial care show a need for target-group specific support, including training of health care professionals and low-threshold access care services and practical help for all family members.

Families with Mentally Ill Parents and Their Partners: Overlaps in Psychiatric Symptoms and Symptom Coping.

Partners in families with a mentally ill parent often experience psychiatric symptoms themselves. Recent studies indicate that there might be overlaps in disorder-specific symptom areas between partners and spouses. This study aimed at examining associations in psychiatric symptoms and symptom coping in partners in families with a mentally ill parent, e.g., having a psychiatric diagnosis according to the International Classification of Diseases (ICD-10). Furthermore, a moderation of the psychiatric symptoms of the parent with a mental illness on the association in symptom coping was assumed. Families with at least one parent with a mental illness were recruited into the longitudinal "Children of Mentally Ill Parents" (CHIMPS) trial at seven clinical centers in Germany and Switzerland. In total, 139 families were included in the current study. Psychiatric symptoms were assessed using the Brief Symptom Inventory (BSI), Clinical Global Impression scale (CGI), Global Assessment of Functioning (GAF), and Patient Health Questionnaire (PHQ), while symptom coping strategies were measured using the Freiburger Fragebogen zur Krankheitsverarbeitung (FKV). Regression analyses have indicated an association in psychiatric symptoms between mentally ill parents and their partners concerning psychosocial functioning, somatic, and stress-related symptoms. Additionally, one symptom coping strategy of the partners was predicted by the same strategy of the parent with a mental illness. The results emphasize the importance of screening and providing support to parents burdened by the mental disorder of their partners, especially regarding the children in these partnerships.

[Measures for optimal access to psychosocial care of children with rare diseases and their families]. / Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung.

BACKGROUND: The diagnosis and treatment of rare diseases in childhood can affect the quality of life and mental health of the entire family. The psychosocial challenges are significant for those affected and are often compounded by a lack of appropriate support services. RESEARCH QUESTION: This article aims to summarize the barriers of current pathways to psychosocial care and identify potential solutions for a care strategy adapted to the needs of families. MATERIALS AND METHODS: In three focus group sessions with 14 professionals from the field of rare pediatric diseases, the results of a previous qualitative study on barriers in current pathways to psychosocial care were presented. In the focus groups, the experts discussed possible solutions. RESULTS AND DISCUSSION: Despite an increased need for psychosocial support services, it is difficult for children with rare diseases and their families to access these. To facilitate access, interventions should address multiple levels. On the one hand, care should be increasingly adapted to the needs of families. At the same time, long-term and reliable care structures need to be established to ensure sustainable care. Structural interdisciplinary collaboration should be promoted, while the training of health professionals should also be more strongly geared to rare diseases.

A Systematic Review of Parent-Child Communication Measures: Instruments and Their Psychometric Properties.

Parent-child communication represents an important variable in clinical child and family psychology due to its association with a variety of psychosocial outcomes. To give an overview of instruments designed to measure the quality of parent-child communication from the child's (8-21 years) perspective and to assess the psychometric quality of these instruments, we performed a systematic literature search in Medline and PsycInfo (last: February 25, 2022). Peer-reviewed journal articles published in English with a child-rated instrument measuring the quality of parent-child communication were included. Initial screening for eligibility and inclusion, subsequent data extraction, and quality assessment were conducted by couples of review team members. Based on the screening of 5115 articles, 106 studies reported in 126 papers were included. We identified 12 parent-child communication instruments across the studies. The Parent-Adolescent Communication Scale (PACS) was used in 75% of the studies. On average, the evidence for psychometric quality of the instruments was low. Few instruments were used in clinical and at-risk samples. Several instruments are available to rate parent-child communication from the child's perspective. However, their psychometric evidence is limited and the theoretical foundation is largely undocumented. This review has limitations with regard to selection criteria and language bias.Registration PROSPERO: CRD42021255264.

The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey.

BACKGROUND: The COVID-19 pandemic is affecting many areas of life and has posed additional strains on the highly vulnerable group of caregivers of children with rare diseases (RDs). The psychosocial situation of the family caregivers deserves more attention, both in research and practice. The current study explores the distress level of caregivers of children with RDs, their psychosocial information needs, and caregiver-reported health-related quality of life (HRQoL) of children with RDs in times of the COVID-19 pandemic. METHODS: Data from a cross-sectional online survey conducted within the German CARE-FAM-NET project (children affected by rare diseases and their families-network) between March and August 2020 were examined. The study sample included 149 family caregivers, mostly mothers (83.2%) of 167 children with RDs. The survey assessed demographic and disease-related characteristics, distress and everyday problems of caregivers (Distress Thermometer for Parents; scale 0-10), psychosocial information needs (self-developed items; scale 0-100), and caregiver-reported HRQoL of the children with RDs (DISABKIDS Chronic Generic Measure, short-form; scale 0-100). Using descriptive statistics, we analyzed the psychosocial situation of families during the COVID-19 pandemic. We further conducted correlation analysis to investigate interrelations. RESULTS: The distress level among caregivers was high (M = 6.84, SD = 2.43); 89.6% reported clinical distress (≥ 4). Everyday problems (e.g., sleep problems, fatigue, being out of shape, fears, feeling tense or nervous, and worry) were frequent. Caregivers reported a wide range of psychosocial information needs. In about half of the children (49.5%), caregiver-reported HRQoL was low, while average HRQoL (M = 58.7, SD = 19.5) was comparable to parent-reported norm data of children with severe clinical conditions. Distress correlated positively with psychosocial information needs (r = 0.40), and negatively with the caregiver-reported HRQoL of the children (r = - 0.46). CONCLUSIONS: This study indicates a high psychosocial burden on family caregivers of children with RDs during the early COVID-19 pandemic, characterized by high distress levels and wide-ranging everyday problems, unmet psychosocial information needs, and reduced caregiver-reported HRQoL in children with RDs. The findings highlight the ongoing need for target group-specific, low-threshold support services (e.g., websites) during and after the pandemic.

Clinical Trial Data: Both Parents Having Psychiatric Symptoms as Risk Factor for Children's Mental Illness.

Children of mentally ill parents represent a particularly vulnerable risk group for the development of mental illness. This study examines whether there is a predictive association between children's psychiatric symptomatology and (1) the clinical diagnosis according to the International Statistical Classification of Diseases and Related Health Problems (ICD-10) of their mentally ill parent as well as (2) to families both parents showing psychiatric symptoms. The study is part of the multicenter controlled trial project "Children of Mentally Ill Parents" (CHIMPS). For this purpose, the psychiatric symptomatology of the mentally ill parent (N = 196) and his or her partner (N = 134) as well as the psychiatric symptomatology of their children aged 4 to 18 years (N = 290) was measured using clinical rated ICD-10-diagnosis, self-rated Brief Symptom Inventory (BSI), and Child Behavior Checklist (CBCL). Using multilevel analyses, the severity of the parental psychiatric symptomatology (BSI) was identified as a significant predictor of children's psychiatric symptomatology (CBCL). Children of parents with a personality disorder (ICD-10) were not more affected than children of parents with another ICD-10-diagnosis. However, children with two parents showing psychiatric symptoms (CBCL) were significantly more affected than children with one mentally ill parent. The results of this study support the well-known view that parental mental illness is a risk factor for children's psychiatric symptoms. Therefore, increased support, especially in high-risk families, both parents having psychiatric symptoms, is highly necessary and should be implemented in the future psychotherapeutic family care.

Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings.

BACKGROUND: Advances in genetic and pharmaceutical technology and pediatric care have enabled treatment options for an increasing number of rare diseases in affected children. However, as current treatment options are primarily of palliative nature, the Health-Related Quality of Life (HRQoL) and mental health of this impaired population and their siblings are of increasing importance. Among children and adolescents with rare diseases, those who are technology-dependent carry a high disease burden and are selected as the target population in our study. In a cross-sectional observational design, the children's HRQoL was assessed with the DISABKIDS (DCGM-37) as well as KIDSCREEN-27, while mental health was assessed with the Strengths and Difficulties Questionnaire (SDQ) by both the affected children, their parents, and siblings. RESULTS: Results of the study sample were compared to normative data. Affected children scored significantly lower than the norm on almost all HRQoL subscales as reported by parent and child. From the parental perspective, more mental health subscales were significantly impaired compared to the child's perspective. Siblings showed no impairment in HRQoL as well as significantly fewer behavioral problems and higher prosocial behavior regarding their mental health compared to the norm. CONCLUSION: Children and adolescents with rare diseases seem particularly impaired in social and emotional aspects of HRQoL and mental health. Interventions may focus primarily on promoting social skills, fostering prosocial behavior and peer relationships.

Clinical- and Cost Effectiveness of a Guided Internet-Based Intervention for Children (12-18 Years) of Parents With Mental Disorders (iCHIMPS): Study Protocol of a Multicentered Cluster-Randomized Controlled Trial.

INTRODUCTION: Children of parents with mental disorders have a high chance of developing a mental disorder themselves. However, this at-risk group is regularly overlooked and typically not seen by any mental health professionals. Internet- and mobile-based interventions (IMIs) can provide a means of promoting mental health for children of parents with mental disorders. OBJECTIVE: The introduced study will evaluate the clinical- and cost-effectiveness of the iCHIMPS IMI in promoting mental health for children of parents with mental disorders. METHODS: A two-armed multicentered cluster-randomized controlled trial (cRCT) comparing the clinical- and cost-effectiveness of the iCHIMPS IMI in the intervention group (IG) to a treatment-as-usual (TAU) control group will be conducted. Recruitment will be handled at currently 21 adult mental health clinics throughout Germany. Participating families will be randomly divided into the two groups until the final sample size of 306 participating adolescents (age 12-18) has been reached. The adolescents in the intervention group will receive access to the IMI and can take part in up to eight intervention modules. Assessment will be conducted during the recruitment (baseline), 1-month, 2-months, and 6-month post-inclusion. Primary outcome is the mental health of the participating adolescents at 6-months post-inclusion as measured by the Youth Self Report score. Secondary self-report outcomes are mental wellbeing, self-efficacy, coping strategies and negative effects as well as mental health of the adolescents as reported by their parent(s). Included moderators are sociodemographic characteristics, working alliance, social support and the mental health diagnoses of the parents. Statistical analyses will be conducted on the intention-to-treat principle as well as with additional per-protocol analyses. Additionally, the cost-effectiveness as well as qualitative data concerning the adherence, acceptance, and feasibility of the IMI will be analyzed. DISCUSSION: The iCHIMPS cRCT examines the clinical- as well as cost-effectiveness of the iCHIMPS mental health promotion IMI for children of parents with mental disorders. This provides the opportunity to gain insights into an innovative as well as time- and location-independent form of support for this often-overlooked at-risk group. Additionally, the larger CHIMPS-NET project allows comparisons between internet-based and face-to-face interventions for a similar target group. CLINICAL TRIAL REGISTRATION: www.ClinicalTrials.gov, identifier: DRKS00025158.

Clinical Implementation and Evaluation of Three Implementation Interventions for a Family-Oriented Care for Children of Mentally Ill Parents (ci-chimps): Study Protocol for a Randomized Controlled Multicenter Trial.

Background: In Germany, approximately three million children under the age of eighteen have a mentally ill parent. These children are at an increased risk of developing a mental illness themselves (1) as well as a physical illness (2). While research has identified numerous evidence-based family-oriented interventions, little is known about how to implement such interventions effectively and efficiently in clinical practice in Germany. This implementation study (ci-chimps) evaluates three clinical implementation projects with three different implementation interventions for the optimal implementation of the tailored family-oriented preventive and therapeutic interventions in the CHIMPS-NET (children of mentally ill parents-research network) with an implementation model for children of mentally ill parents. Methods: A two-group randomized controlled multicenter trial will examine changes in family-oriented practice and aspects of implementation at baseline as well as at 12- and 24-months follow-up. The CHIMPS-Network consists of 20 clinical centers. The centers in the intervention group receive the support of all of the three implementation interventions: (1) optimal pathways to care, (2) education and a training program for professionals, and (3) systematic screening for children. The centers in the control group do not receive this specific implementation support. Discussion: While we know that children of mentally ill parents are an important target group to be addressed by preventive and therapeutic interventions, there is often a lack of structured implementation of family-oriented interventions in clinical practice in Germany. Using a randomized controlled multicenter trial design with a large and wide-ranging sample (clinics for adult psychiatry and clinics for child and adolescent psychiatry, university clinics and clinics at the real health care) will provide a robust understanding of implementing family-oriented changes in German clinical practice. Trial Registration: The CHIMPS-NET-study was registered with the German Clinical Trials Register on 2019-12-19 (DRKS00020380) and with Clinical Trials on 2020-4-30 (NCT04369625), the ci-chimps-study was registered with the German Clinical Trials Register (DRKS00026217) on 2021-08-27, the Clinical Trials registration is in review process.

How young psychotherapists experience working with older patients.

Preliminarily findings from experimental and survey research suggests that psychotherapy with older adults is an area of practice in which psychotherapists do not feel positive and confident. This qualitative study is the first to explore how young psychotherapists experience and perceive their therapeutic work with older patients. To do so, we provide an in-depth perspective of how young (aged 27-35) psychotherapists experience providing psychotherapeutic treatment for older patients (aged over 65). Semistructured interviews were conducted with 20 psychotherapists in training (14 women, six men). They were recruited via psychotherapeutic training institutions and geropsychiatry clinics in Germany. The grounded theory approach was used to analyze the data. We found that the participants had various attitudes toward older adults (respectful/admiring, caring/supportive, doubtful, and open) that were related to individual social and biographic experiences with older adults. The participants' attitudes and personal experiences were also found again in their reported therapeutic behavior toward older patients. The finding further showed that the treatment setting (inpatient vs. outpatient) had an additional impact on the participants' perception of and therapeutic behavior toward older patients. Our findings demonstrated that the participants experienced various challenges and particularities when working with older patients. Young psychotherapists who work with older patients should be supported by psychotherapeutic training institutions through supervision and guidance on how to deal with clinical challenges. Furthermore, it can be valuable for young psychotherapists to critically reflect their attitudes toward older adults and personal motives for their therapeutic behavior toward older patients. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

[Bifocal perspective in the work with families with mentally ill parents]. / Bifokale Perspektive in der Arbeit mit Familien mit psychisch erkrankten Eltern: Training zur Verbesserung von Einstellungen, Wissen und Fertigkeiten für medizinische Fachkräfte.

BACKGROUND: Mentally ill parents pose a risk factor for the transgenerational transmission of mental disorders. Contemporary psychiatry mainly focuses on the individual and patients are not always recognized as being parents. OBJECTIVE: The development and evaluation of a training program for mental health professionals to support a family orientation in psychiatric treatment by using a bifocal perspective, which keeps an eye on the index patient and the family with a focus especially on children, are presented. METHODS: In order to establish the bifocal perspective in attitudes, knowledge and skills, a half-day training program, consisting of a lecture and a seminar was developed. This was carried out as part of the Children of Mentally Ill Parents -Research Network (CHIMPS-NET) consortium at seven locations in Germany in the respective adult, pediatric and adolescent departments of psychiatry. The needs were evaluated before the training using an online questionnaire. The implementation was accompanied by a qualitative analysis of memory protocols of the trainers. RESULTS AND DISCUSSION: The training could be successfully carried out with 120 participants, whereby the target of a comprehensive training of the complete personnel across occupational groups could not be realized, also partly due to the pandemic, and the exercising elements of training could not all be utilized. The evaluation of the questionnaire, which was completed by approximately 50% of the participants showed that the group of participating psychologists and physicians already had a strong family orientation. The qualitative analysis of protocols from all locations documented a strong need for networking across institutions and clear standard procedures, e.g. in dealing with child maltreatment.

Mental Health of Siblings of Children with Rare Congenital Surgical Diseases during the COVID-19 Pandemic.

INTRODUCTION: The COVID-19 pandemic has affected every aspect of our society, particularly vulnerable groups, such as families with children suffering from rare diseases. However, the psychosocial influences of COVID-19 on the healthy siblings of children with rare diseases have not been investigated yet. Thus, the study aimed to evaluate the mental health of healthy siblings of children with rare congenital surgical diseases during the COVID-19 pandemic. MATERIAL AND METHODS: Siblings of children with rare congenital surgical diseases were investigated cross-sectionally between April 2020 and April 2021. Data on mental health were collected using the parent-version of the Strengths and Difficulties Questionnaire (SDQ). RESULTS: Out of 104 families, 81 (77.88%) participated in the survey. Healthy siblings presented with comparable levels of emotional and behavioral difficulties compared with population norms before the COVID-19 pandemic. Compared with studies that surveyed child and adolescent mental health during the COVID-19 pandemic, parents of siblings in this study reported a significantly lower impairment rate. Psychosocial and disease-specific risk factors of the respective outcomes in healthy siblings were identified through regression analysis models. CONCLUSION: In general, health-care professionals should be aware of the possibility of siblings' mental health being at risk. Therefore, screening for psychosocial deficits may be essential in preventing psychiatric disorders in this population, especially during pandemics. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04382820 (registered April 8, 2020).

Risk and Protective Factors Associated With Health-Related Quality of Life of Parents With Mental Illness.

Purpose: Health-related quality of life (HRQoL) can be reduced in parents with mental illness (mental illness) who face the dual demands of disabling symptoms and their impact on family, social, and occupational life. This study aimed at analyzing the influence of various factors on HRQoL in parents with mental illness. Method: Baseline data of the German randomized controlled multicenter project CHIMPS (children of parents with mental illness) was used for analyses. The final sample consisted of n = 208 parents with mental illness and n = 197 children and adolescents aged 8-18 years. HRQoL was assessed with the EQ-5D. Results: Parents with mental illness reported significantly lower global and specific HRQoL than the German reference population. They were least satisfied with aspects that relate to anxiety and depression followed by usual activities, pain and discomfort. Better global HRQoL was primarily associated with self-reported physical and mental health, as well as adaptive coping behavior. Associations with mobility, self-care, usual activity, pain and discomfort, anxiety and depression were analyzed and discussed. Conclusions: HRQoL in parents with mental illness is reduced. Clinical interventions should focus on the alleviation of mental health symptoms and probably somatic symptoms and promote adaptive coping skills.

Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic.

BACKGROUND: COVID-19 has affected our society at large, particularly vulnerable groups, such as children suffering from rare diseases and their parents. However, the psychosocial influences of COVID-19 on these have yet to be investigated. As such, the study's goal was to evaluate the health-related quality of life (HRQoL), quality of life (QoL), and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic and lockdown measures. METHODS: A survey of n = 210 parents of children with rare congenital surgical diseases and a control group of n = 88 parents of children without rare diseases was conducted cross-sectionally between April 2020 to April 2021. Data on HRQoL, QoL, and mental health was collected using standardized psychometric questionnaires for children and parents presenting to the pediatric surgery department at a university hospital. RESULTS: Mothers of children with rare pediatric surgical diseases showed significantly lower QoL and significantly higher impairment in mental health than a control group and norm data. For fathers, this was solely the case for their QoL. Children's parent-reported HRQoL and mental health were partially impaired. Social and disease-specific risk factors of the respective outcomes in affected families were identified through regression analysis models. CONCLUSION: Parents of children with rare diseases report severe psychosocial impairment regarding themselves and their children during the COVID-19 pandemic. Therefore, affected families should receive attention and supportive care in the form of a family-center approach to alleviate the additional burden of the COVID-19 pandemic.

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany.

BACKGROUND: Rare diseases occur in early childhood and have a major impact on the quality of life of the affected children and their families. Their need for psychosocial support is considerable, but psychosocial care in Germany is still far from being part of routine care. We interviewed experts to explore how they describe the current pathways to psychosocial care, potential barriers and problems, and possibilities for improvements. RESULTS: We conducted telephone interviews with 49 experts working in somatic medicine, psychosocial medicine, patient organizations, child and youth welfare, and the educational sector. Interviews were transcribed and analyzed using focused interview analysis. Results document ways of access and facilities used by families to receive psychosocial care. The barriers described by the experts can be summarized on three levels: the family-organizational level, the family-psycho-emotional level, and finally, the structural system level. Accordingly, suggestions for improvement were directed at these levels. CONCLUSION: Based on the experts' perspectives, there is ample room for improvement to facilitate the pathways to psychosocial care for children with rare diseases and their families. Unfortunately, there seems to be a long way to go before psychosocial care will be routinely provided. However, awareness of the issue among different professional groups is high, and numerous suggestions for improvement were made, including continuous expansion of services to all family members, strengthening of low-threshold services, simplifying application procedures, and more cooperation between different funding agencies as well as between different care providers.

Parents With Mental Illness: Parental Coping Behavior and Its Association With Children's Mental Health.

The relevance of coping behavior for the individual's own mental health has been widely investigated. However, research on the association between coping of parents with a mental illness and their children's mental health is scarce. In the current study, we address the role of several parental coping strategies and their relation to child psychological symptoms. As part of the German randomized controlled multicenter study CHIMPS (children of mentally ill parents), parents with mental illness completed questionnaires on illness-related coping and child mental health symptoms. Children's diagnoses of a mental disorder were assessed with diagnostic interviews. The sample comprised n = 195 parents with mental illness and n = 290 children and adolescents aged 4-18 years. We conducted mixed models to investigate the associations of parental coping strategies with internalizing and externalizing symptoms as well as the diagnosis of a mental disorder in children controlling for sociodemographic factors and parental symptom severity. Parental coping characterized by religiosity and quest for meaning was significantly associated with fewer mental health symptoms and lower odds of a mental disorder in children, whereas a depressed processing style was related to increased internalizing problems in the children. Coping behavior in parents with mental illness is a relevant factor for the mental health of their children and should be considered in preventive interventions.

Associations of Family Functioning and Social Support With Psychopathology in Children of Mentally Ill Parents: Multilevel Analyses From Different Rating Perspectives.

Offspring of mentally ill parents is at heightened risk for psychological symptoms. The identification of environmental factors that predict their mental health is crucial for the development of preventive and therapeutic measures. In the current study, we addressed the combined role of family functioning and social support by taking mentally ill patients', their partners', and children's perspectives into account. The cross-sectional sample included n=195 families (195 patients, 127 partners, and 295 children). Family members completed questionnaires related to family functioning, social support as well as parental and child psychopathology. We conducted multilevel analyses to investigate the associations with internalizing and externalizing problems in children. Family functioning and social support were significantly associated with child internalizing and externalizing problems. However, results varied depending on the rating perspective. We found significant interaction effects of family functioning and social support on child psychopathology. The findings point to the importance of family functioning and social support as potential targets for interventions. Findings should be replicated in future longitudinal studies.