Patients and family attitudes about clinical and research sharing of electronic clinical data.

PURPOSE: To access the attitudes of service users about the sharing of health records for research and to foster collaboration between municipal health services and the specialist health services in Norway. METHODS: Members (n ≈ 2000) of the Norwegian mental health service users' organizations (SUO's), ADHD Norway, the Autism Association and the Tourette Association, representing Central Norway, participated in the study, (N = 108, 5.4% response rate). Descriptive statistics were used to evaluate distributions of responses to the questionnaire. RESULTS: Service users reported being aware that municipal health services collaborate with the specialist health service (62%), with mental health care in the specialist health service (57%), and child and adolescent psychiatric services (61%). A large proportion of individuals were aware of the benefits of sharing their health records (93%), have trust in the use of data by health authorities (81%), and were willing to share records to benefit fellow patients (84%). Personal experience (69%) and impressions from mainstream media (55%) had the most influential impact on users' views of the Health Platform, an electronic health communication system. A majority of users had a negative perception of the Health Platform, even though some expect it to become a valuable tool in the future (50%). CONCLUSIONS: Service users are aware of and positive about benefiting others by sharing health records. They trust the health authorities, however, have negative attitudes about the Health Platform, apparently based on personal experiences and media influence. However, service users can see the potential usefulness of the Health Platform in the future.

The construct validity of an abridged version of the general self-efficacy scale for adults with attention-deficit/hyperactivity disorder.

Objectives: The General Self-Efficacy (GSE) scale is a validated self-rated questionnaire increasingly used in mental health research. However, despite several psychometric advantages of the GSE scale, its validity in those diagnosed with attention-deficit/hyperactivity disorder (ADHD) has not yet been examined. Moreover, a shorter version of the GSE scale would contribute to a more rational use of resources in extensive multivariate studies. Therefore, as self-rated scales to measure self-efficacy in this population are lacking, the current study aims to develop a condensed version of the GSE for adults with ADHD. Methods: A group of patient collaborators (user representatives) from an ADHD organization and health professionals shortened the original 10-item GSE scale to six items and evaluated the content validity of the revised scale. Second, 525 potential participants were invited to participate in a cross-sectional study conducted in 2021 (between January 19th and February 7th). Of them, 403 filled out the GSE-6 for ADHD and two scales measuring psychological well-being and mental health (the five-item World Health Organization Well-Being Index, WHO-5, and the four-item Patient Health Questionnaire, PHQ-4). The psychometric properties of the new scale were examined, testing a priori formulated hypotheses. Results: The brief GSE-6 for ADHD displayed good internal consistency with a Cronbach's α of 0.907. No floor or ceiling effect was detected. Exploratory and confirmatory factor analyses supported a one-factor structure. The GSE-6 also showed a moderate positive correlation with the WHO-5 (rs = 0.578) and a moderate negative correlation with the depression and anxiety rating scale PHQ-4 (rs = -0.595). Conclusion: The 6-item GSE for ADHD was evaluated to have good content validity. The scale demonstrated good psychometric properties. The results indicate that the GSE-6 may help assess self-efficacy in adults with ADHD.

Validating the Five-Item World Health Organization Well-Being Index.

Purpose: Research on the psychological well-being of caregivers of children diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD) suggests that the well-being of parents and caregivers has been negatively affected by the COVID-19 pandemic. Although the psychological well-being of caregivers is a major concern, few validated well-being measures exist for caregivers of children diagnosed with ADHD. Therefore, a valid self-report scale is needed to assess well-being during the pandemic. The brief Five-Item World Health Organization Well-Being Index (WHO-5) has previously been used in studies on caregivers. However, its validity in this population remains unknown. This study aimed to evaluate the reliability and construct validity of the WHO-5 with caregivers of children with ADHD. Methods: A cross-sectional anonymous online survey was conducted in Norway. The study recruited caregivers from a community sample during the COVID-19 pandemic. This was carried out to investigate the construct validity by exploring the relationship between well-being, quality of life, social support, self-reported psychological distress, and perceived stress. Results: The findings of unidimensionality and high internal consistency, together with the results from the hypothesis testing, demonstrate the reliability and construct validity of the Norwegian version of the WHO-5 in this population. Conclusions: This study provides the first empirical evidence of the validity and reliability of the WHO-5 from a sample of Norwegian caregivers of children diagnosed with ADHD, with excellent reliability and construct validity. The scale can be used to systematize the measurement of well-being in caregivers because of its brevity and good psychometric properties, making it a valuable resource in research settings and assisting healthcare professionals in their crucial work of caring for caregivers.

Fighting the waves; Covid-19 family life interference in a neurodevelopmental disorder-caregiver population.

INTRODUCTION: The current COVID-19 pandemic interferes with family lives across the world, particularly families of children with neurodevelopmental disorders (NDDs) are at a greater risk for being negatively impacted by the pandemic. Together with representatives from this caregiver population the aim was to explore the interference associated with normal family life caused by the COVID-19 pandemic. METHOD: This is a descriptive study using a cross-sectional design. Following a strategic network sampling strategy, a user-developed national survey was completed by a larger sample (N = 1,186) of parents and informal caregivers of children with NDDs. The survey utilized a combination of both closed and open-ended questions, and a logistic regression analysis was carried out to assess the association between family characteristics, characteristics of the child, and COVID-19 related family life interference. Before carrying out the regression an inductive content analysis of the open-ended question on `How has the isolation affected the family´ was carried out to construct the outcome variable. RESULTS: The initial analysis indicated that the COVID-19 pandemic induced a shift in everyday family life and a lack of guidance and support related to managing the challenges they were facing. Caregivers who reported that COVID-19 had significantly interfered with their family life, were more likely to report having anxious children, and to have experienced an increased number of conflicts at home. The logistic regression showed that both anxious children and increased conflicts considerably increased the risk for reporting family life interference compared to those that reported no increased conflicts or anxious children. DISCUSSION: Considering how the COVID-19 related increased conflicts at home and anxious children threaten the family life of the NDD caregiver population, as an external source of family stress, which might lead to negative impact on their mental and physical well-being, the need for further research in collaboration with user representatives is apparent. Our study suggests that more information should be provided to healthcare providers, social professionals, peers, people with NDDs, and caregivers of people with NDDs about the potential threats that a stressful life event such as the current pandemic can pose to their mental and physical health and their family life.

Attitudes of Mental Health Service Users Toward Storage and Use of Electronic Health Records.

OBJECTIVE: Electronic health records (EHRs) are used for both clinical practice and research. Because mental health service users' views are underrepresented in perspectives on EHR use, the authors examined service users' awareness, attitudes, and opinions about EHR data storage and sharing. METHODS: A mixed-methods, cross-sectional design was used to examine attitudes of 253 Norwegian mental health service users who were recruited online to complete a quantitative and qualitative (free-text) survey about EHR utilization. RESULTS: Most participants were aware that EHRs were stored (95%) and shared (58%). Most thought that patients benefited from EHR storage (84%), trusted authorities with EHR sharing (71%), were willing to share their EHRs to help others (75%), felt they benefited from EHR sharing (75%), and thought EHR sharing was ethical for health care and research (71%). Fewer were aware of EHR sharing for research (36%), and 62% were aware that shared data were anonymized. Of the participants, 69% recognized privacy risks associated with sharing. Lack of transparency and skepticism about anonymization and misuse of EHR data were concerns and perceived risks. Mental health service users thought that EHRs should be shared for policy development (81%), education and training (85%), improving care quality (89%), research (91%), and clinical decision support (81%). CONCLUSIONS: Participants were aware of and supported EHR sharing for research and clinical care. They supported sharing to help others and were willing to fully participate in clinical care and research, as well as to share EHR information for their own care, research, and the care of others.

Effects of a peer co-facilitated educational programme for parents of children with ADHD: a feasibility randomised controlled trial protocol.

INTRODUCTION: Significant numbers of children with attention deficit hyperactivity disorder (ADHD) display problems that cause multiple disabilities, deficits and handicaps that interfere with social relationships, development and school achievement. They may have multiple problems, which strain family dynamics and influence the child's treatment. Parent activation, described as parents' knowledge, skills and confidence in dealing with their child's health and healthcare, has been shown to be an important factor in improving health outcomes. Research suggests that parents need edification to learn skills crucial to the treatment and management of their children's healthcare. Promoting positive parenting techniques may reduce negative parenting factors in families. This study aims to assess the acceptability, feasibility and estimated sample size of a randomised controlled trial (RCT) comparing an ADHD peer co-led educational programme added to treatment as usual (TAU). METHODS AND ANALYSIS: Using a randomised waitlist controlled trial, parents of children aged 6-12 years newly diagnosed with ADHD, and referred to a child mental health outpatient clinic in Mid-Norway, will receive TAU concomitant with a peer co-facilitated parental engagement educational programme (n=25). Parents in the control group will receive TAU, and the educational programme treatment within a waitlist period of 3-6 months (n=25). Parent activation, satisfaction, well-being, quality of life and treatment adherence, will be assessed at baseline (T0), 2 weeks (T1) pre-post intervention (T2, T3) and at 3 months follow-up (T4). Shared decision making, parents preferred role in health-related decisions and involvement, parent-reported symptoms of ADHD and child's overall level of functioning will be assessed at T0 and T4. Such data will be used to calculate the required sample size for a full-scale RCT. ETHICS AND DISSEMINATION: Approval was obtained from the Regional Committee for Medicine and Health Research Ethics in Mid-Norway (ref: 2018/1196). The findings of this study are expected to provide valuable knowledge about how to optimise family education and management of ADHD and will be disseminated through presentations at conferences and publication in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT04010851.