Adaptation of a psycho-educational group programme to improve coping in dementia caregiving: a feasibility study with mixed-methods.

BACKGROUND: As the number of people living with dementia rapidly increases worldwide, the support provided by their informal caregivers remains key to the sustainability of most healthcare systems, this voluntary contribution representing 40% of the costs of dementia worldwide. Informal caregiving in dementia, however, is linked to long periods of chronic stress with frequent and serious negative consequences on the health and quality of life of the caregiver. A psycho-educational group intervention focusing on coping with the daily stress of dementia caregiving ("Learning to feel better… to help better"), developed in French-speaking Canada and showing broad effects on quality of life, was selected with the aim of 1) adapting it to a new cultural context (French-speaking Switzerland) based on identified facilitators and barriers, using a participative approach; and 2) conducting a feasibility study to evaluate whether the adapted programme showed similar or improved feasibility and effects compared to the original Canadian programme. METHODS: A mixed-methods concurrent nested design was used to evaluate the feasibility and the effects on five quantitative core outcomes. Additional qualitative data helped document in depth the acceptability and impact of the intervention. RESULTS: We shortened the programme from 30 to 21 h in total, which resulted in increased accessibility, in terms of facilitated recruitment of participants and inclusion of a broader range of informal caregivers. There were significant reductions in subjective burden (effect size: d = -0.32) and psychological distress (d = -0.48), as well as decreases in the stress reactions of informal caregivers related to the behaviour problems of the persons with dementia (d = -0.57). The qualitative results emphasized the usefulness of providing informal caregivers with structured procedures for efficiently tackling everyday challenges, and of enabling learning through a variety of channels and activities. CONCLUSIONS: Substantial improvements are associated with this 21-h group intervention, organised in 7 sessions of 3 h each, focused on learning more efficient strategies to cope with the daily stress of dementia caregiving. This intervention empowered informal caregivers to master their daily challenges with more confidence, satisfaction and calm. TRIAL REGISTRATION: ISRCTN13512408 (registration date 17.05.2021, retrospectively registered).

Factors associated with homecare coordination and quality of care: a research protocol for a national multi-center cross-sectional study.

INTRODUCTION: The persistent fragmentation of home healthcare reflects inadequate coordination between care providers. Still, while factors at the system (e.g., regulations) and organisational (e.g., work environment) levels crucially influence homecare organisation, coordination and ultimately quality, knowledge of these factors and their relationships in homecare settings remains limited. OBJECTIVES: This study has three aims: [1] to explore how system-level regulations lead to disparities between homecare agencies' structures, processes and work environments; [2] to explore how system- and organisation-level factors affect agency-level homecare coordination; and [3] to explore how agency-level care coordination is related to patient-level quality of care. DESIGN AND METHODS: This study focuses on a national multi-center cross-sectional survey in Swiss homecare settings. It will target 100 homecare agencies, their employees and clients for recruitment, with data collection period planned from January to June 2021. We will assess regulations and financing mechanisms (via public records), agency characteristics (via agency questionnaire data) and homecare employees' working environments and coordination activities, as well as staff- and patient-level perceptions of coordination and quality of care (via questionnaires for homecare employees, clients and informal caregivers). All collected data will be subjected to descriptive and multi-level analyses. DISCUSSION: The first results are expected by December 2021. Knowledge of factors linked to quality of care is essential to plan and implement quality improvement strategies. This study will help to identify modifiable factors at multiple health system levels that might serve as access points to improve coordination and quality of care.

Specific Contributions of Age of Onset, Callous-Unemotional Traits and Impulsivity to Reactive and Proactive Aggression in Youths with Conduct Disorders.

Youths with conduct disorders (CD) are particularly studied for their violent and aggressive behaviors. Many researchers considered aggressive behaviors as being either reactive or proactive. Moreover, factors such as age of CD onset, impulsivity, and callous-unemotional traits, separately, have been related to these different types of aggressive behaviors. However, very few studies addressed the combined contribution of these three factors on proactive and reactive aggression. This question was tested in a sample composed of 43 male adolescents with CD. A single regression analysis including all predictors and outcomes, using Bayesian statistics, was computed. Results indicated that impulsivity was related to reactive aggression, while CU traits were related to proactive aggression. These results suggest first, an important heterogeneity among youth with CD, probably leading to different trajectories and, second, that youths with callous-unemotional traits should receive special attention and care as they are more at risk for proactive aggression.

Good and Bad Days: Fluctuations in the Burden of Informal Dementia Caregivers, an Experience Sampling Study.

BACKGROUND: Informal dementia caregivers (IDCs) are often confronted with important fluctuations in care-related burden, commonly described as "good and bad days." These fluctuations are overlooked by traditional questionnaires focusing on the average experience. The experience sampling method (ESM) is based on the repeated collection of data in everyday life, thereby allowing the description of day-to-day fluctuations in IDC burden, and the identification of their correlates. ESM studies are still scarce among IDCs, with none focusing on day-to-day fluctuations in burden. OBJECTIVES: This ESM study aimed to examine day-to-day fluctuations in the burden of IDCs and test their associations with six moment-to-moment predictors. METHODS: Primary IDCs (N = 26, median age = 68 years, 77% women, 73% spouses) volunteered to answer questions about their daily burdens, patients' memories and behavioral problems (MBP), caregivers' MBP-related distress, psychological distress, self-efficacy and positive affects, and relationship quality; volunteers did this every evening for 2 weeks on a touchpad, resulting in 206 measures. Data were analyzed with multilevel linear regression. RESULTS: Day-to-day fluctuations covered about two thirds of the total variance for most study variables. All six predictors had a significant bivariate relation with daily burden, explaining 15%-32% of its fluctuations, with significant differences between caregivers in the strength of these relations. The best multivariate model explained 51% of the day-to-day fluctuations in burden. It included caregiver MBP-related distress, psychological distress, and relationship quality. DISCUSSION: This innovative study of IDC burden shows that day-to-day fluctuations are an important part of caregivers' real-life experiences and that half of this variability is predicted by currently understudied factors. Inviting caregivers to monitor clinical outcomes daily over 1 or 2 weeks could help tailor interventions to their individual needs and also empower them.

Gender Differences in at Risk Versus Offender Adolescents: A Dimensional Approach of Antisocial Behavior.

The current study investigated gender differences in the main components of antisocial behavior in an at-risk versus an offender group of adolescents. One-hundred and forty-three adolescents divided into two different risk groups [at risk (n = 54) and offenders (n = 89)] were compared according to gender (111 boys and 32 girls). Externalizing symptoms were assessed with the Delinquent and Aggressive subscales of the Youth Self-report Questionnaire, internalizing problems with the Beck Anxiety Inventory and the Beck Depressive Inventory and personality traits with the Barratt-Impulsiveness Scale as well as the Youth Psychopathic Traits Inventory. Results revealed a consistent interaction pattern, with girls presenting higher levels of externalizing symptoms, more motor impulsivity and a more arrogant and deceitful interpersonal style than boys in the at-risk group. In contrast, in the offenders' group, psychopathic traits were more present in boys than in girls. Regarding internalizing problems, girls showed more depression than boys, independently of the risk group. Among offending youths, girls present equally severe externalizing problems, and problematic personality traits as boys. At-risk girls have the highest rates of difficulties across the tested domains and should therefore be specifically targeted for prevention and intervention.

Constructive thinking skills and impulsivity dimensions in conduct and substance use disorders: differences and relationships in an adolescents' sample.

Impact of conduct disorder (CD) and substance use disorder (SUD) on constructive thinking skills and impulsivity was explored. 71 offending adolescents were assessed for CD and SUD. Furthermore, the constructive thinking inventory, the immediate and delayed memory tasks and the UPPS impulsive behaviour scale were administered. Results showed that youths with CD, independently from SUD, presented higher personality impulsivity (urgency) and altered constructive thinking skills (categorical thinking and personal superstitious thinking). Furthermore, trait-impulsivity explained variation in constructive thinking skills. The implications of these results were discussed.

Implicit attitudes and self-concepts towards transgression and aggression: differences between male community and offender adolescents, and associations with psychopathic traits.

Research suggests that implicit attitudes play a key role in the occurrence of antisocial behaviours. This study assessed implicit attitudes and self-concepts related to aggression and transgression in community and offender adolescents, using a new set of Implicit Association Tests (IATs), and examined their association with of psychopathic traits. Thirty-six offenders and 66 community adolescents performed 4 IATs assessing 1) implicit attitudes about a) aggression and b) transgression as good, and 2) implicit self-concepts about a) aggression and b) transgression as self-descriptive. They filled in self-report questionnaires: the Youth Psychopathic Traits Inventory, the Child Behaviour Checklist, and explicit measures of their attitudes and self-concepts towards transgression and aggression. Results showed few differences between community and offender adolescents on implicit attitudes and self-concepts, and unexpected negative associations between some implicit attitudes and psychopathic traits, while the association was positive for the corresponding explicit attitudes. Possible explanations of these findings are discussed.

A randomized controlled trial of the effectiveness of computer-assisted cognitive remediation (CACR) in adolescents with psychosis or at high risk of psychosis.

BACKGROUND: Computer assisted cognitive remediation (CACR) was demonstrated to be efficient in improving cognitive deficits in adults with psychosis. However, scarce studies explored the outcome of CACR in adolescents with psychosis or at high risk. AIMS: To investigate the effectiveness of a computer-assisted cognitive remediation (CACR) program in adolescents with psychosis or at high risk. METHOD: Intention to treat analyses included 32 adolescents who participated in a blinded 8-week randomized controlled trial of CACR treatment compared to computer games (CG). Cognitive abilities, symptoms and psychosocial functioning were assessed at baseline and posttreatment. RESULTS: Improvement in visuospatial abilities was significantly greater in the CACR group than in CG. Other cognitive functions, psychotic symptoms and psychosocial functioning improved significantly, but at similar rates, in the two groups. CONCLUSION: CACR can be successfully administered in this population; it proved to be effective over and above CG for the most intensively trained cognitive ability.

A qualitative exploration of changes and mechanisms of changes in a psychoeducational intervention for family dementia caregivers.

BACKGROUND: 'Learning to feel better… and help better' is a psychoeducational intervention that aims to empower family caregivers of people with dementia by helping them cope better with the daily stress of dementia caregiving. The intervention has been adapted to a Swiss context and evaluated with a mixed-method design, yielding promising results in caregivers, such as a reduced subjective burden and improved self-efficacy. Qualitative findings have provided insight into potentially relevant intermediate changes that must be further explored to better understand how the intervention precipitates the achieved changes. We aim to qualitatively explore such changes, related mechanisms and key intervention components in the context of this intervention. METHODS: A constructivist grounded theory approach was used to achieve this aim. Changes, related mechanisms and key intervention components were identified by exploring the following: 1) longitudinal qualitative data, collected from 13 family caregivers via interviews performed before, during and after the intervention (39 interviews total) and 2) cross-sectional post-intervention interview data collected from 22 family caregivers (22 interviews). RESULTS: Experiencing calmness was the most important change for caregivers in the context of this intervention. The calmness model, developed based on the qualitative analysis, illustrates the intermediate changes that contributed to calmness, such as being able to cope with daily life and experiencing positive interactions with the family member with dementia. Related key intervention components were the coping strategy 'reframing', employed in diverse ways by the caregivers to reduce daily stress, and the didactic method 'active skills' training', which involved active participation by the caregivers and the guidance of a professional group leader. One important factor hampering changes in caregivers was having difficulties accepting the caregiver role or accepting the losses due to dementia. CONCLUSION: The calmness model offers valuable insight into how this intervention can benefit family caregivers and aid in developing interventions targeting similar mechanisms and changes. TRIAL REGISTRATION: ISRCTN13512408 (registration date 17.05.2021, retrospectively registered).

Relationship quality perceived by family caregivers of people with dementia in the context of a psychoeducational intervention: A qualitative exploration.

BACKGROUND: Caring for a person with dementia can be a challenging experience, often associated with chronic stress and a heavy burden on family caregivers. Dementia also impacts the relationship between the caregiver and the person with dementia. The quality of this relationship is, in turn, an important factor influencing the well-being of both dyad members. The psychoeducational intervention "Learning to feel better . . . and help better" has shown positive results regarding family caregivers' subjective burden, psychological distress, and self-efficacy. However, relationship quality has not been addressed in the context of this intervention. METHODS: A longitudinal constructivist grounded theory approach was used to explore relationship quality as perceived by caregivers, possible changes and intervention components facilitating or preventing such changes. Three qualitative, semi-structured interviews (before, during and after the intervention) were performed with 13 family caregivers from three different intervention groups. The resulting 39 interviews were analysed regarding individual caregiver trajectories, per time point for all caregivers and regarding specific caregiver subgroups. FINDINGS: A model focusing on sustaining relationship quality in dementia was developed. It shows strategies that family caregivers develop and apply to facilitate positive interactions and feelings of connectedness with their family members with dementia. It also indicates that mastering such strategies requires reflective skills based on specific knowledge of dementia and coping strategies, which can be enhanced through active skills training, in which caregivers are guided to work on their individual stressful situations. Factors hampering change included difficulties in accepting dementia-related changes. CONCLUSION: Findings suggest that psychoeducation, with active skills training based on caregivers' current daily life situations, providing systematic procedures to handle daily challenges and specific knowledge about the impact of the disease, could support them in developing and applying supportive strategies to sustain or improve their relationship to their family member with dementia.

Treatment motivation in adolescents with psychosis or at high risk: determinants and impact on improvements in symptoms and cognitive functioning, preliminary results.

Low motivation is frequent in chronic disorders such as psychosis and may limit treatment efficacy. Although some evidence supports this view in adults, few studies so far have focused on adolescents. We assessed the impact of baseline symptoms, cognitive deficits and cognitive treatment characteristics on treatment motivation (TM), and examined whether TM affected treatment outcome. Twenty-eight adolescents with psychotic disorders participated in 16 sessions of computerized cognitive remediation or games. TM was assessed for each session. Lower TM was predicted by more severe symptoms at baseline, and was associated with smaller improvements in symptoms and both cognitive and psychosocial functioning at the end of the intervention. Experiencing success in the treatment exercises enhanced TM in all patients.

Reliability, validity and relevance of needs assessment instruments for informal dementia caregivers: a psychometric systematic review.

OBJECTIVE: The objective of this review was to identify reliable and/or valid needs assessment instruments for informal dementia caregivers that are relevant for clinical practice, research and informal caregivers. INTRODUCTION: Informal dementia caregivers report important unmet needs at all stages of the disease. In addition, they often indicate that health care providers insufficiently attend and adapt to their multiple needs. A systematic and patient-centered assessment is needed to address this lack of knowledge and understanding. However, existing quantitative needs assessment questionnaires are limited in terms of psychometric testing. Qualitative measures are time-intensive and difficult to conduct on a large scale, with growing economic pressure. Information about the methodological quality and the characteristics of needs assessment instruments are crucial for clinicians and researchers to make informed decisions about the most reliable and valid tool for their specific purpose. INCLUSION CRITERIA: This review considered studies on multidimensional needs assessment instruments for informal dementia caregivers living at home. Psychometric studies or other types of studies with sufficient data to evaluate methodological quality were included if they considered at least one outcome for reliability or validity. METHODS: Studies in English, French or German and published until February 2019 were searched in four databases: Embase, MEDLINE, CINAHL and PsycINFO. After screening the titles, abstracts or full texts for eligibility, the provisional included studies were assessed for methodological quality with a standardized tool for systematic reviews of measurement properties. After data extraction using a standardized tool, the quality of the measurement properties was rated and compared using predefined quality criteria. RESULTS: Eighteen articles covering 14 different needs assessment instruments were included in the review. Eleven publications focused on the development or the evaluation of an instrument. In addition, a development report, a manual and five studies, not aimed primarily at validation but containing sufficient information about the development or the evaluation of the used instruments, were included. The systematic evaluation of the instruments revealed that half of them had excellent content validity. In contrast, structural validity was rarely examined, and mostly with an insufficient sample size or a questionable analysis. None of the instruments had optimally tested and good internal consistency. Regarding reliability, test-retest agreement was rarely tested and inter-rater agreement was evaluated using controversial procedures. Comparing the different instruments reviewed, the "Partnering for better health - living with chronic illness: dementia" had the best psychometric evidence, and the "Questionnaire of consultation expectations" was also partly supported, while most other instruments presently had limited psychometric soundness. CONCLUSIONS: Despite the good evidence for some psychometric properties, further developments in the field of needs assessment for informal dementia caregivers are needed, particularly regarding structural and construct validity, as well as test-retest reliability and sensitivity to change. To enhance conceptual clarity, the development of an underlying theoretical model of needs should be prioritized.

Reliability, validity and relevance of needs assessment instruments for informal dementia caregivers: a psychometric systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this psychometric review is to identify needs assessment instruments for informal dementia caregivers which are:More specifically, the aim is to present an overview and an evaluation of the available needs assessment instruments, including: i) their psychometrics (reliability and validity) when available, and ii) their relevance according to the instrument characteristics, namely, their purpose, application method, administration burden, number of items and domain structure.

The relationship between dyadic coping and marital quality: a 2-year longitudinal study.

Previous studies have revealed that the ways couples deal with stress in their lives are significantly associated with their marital quality and overall marital functioning. However, there has been little empirical evidence linking dyadic coping with marital quality over time. This study addresses the relationship between dyadic coping and marital quality among 90 couples over a period of 2 years. The results reveal that dyadic coping was significantly associated with marital quality over 2 years. For women, both their own dyadic coping and that of their partner were significant predictors, whereas for men only their own dyadic coping was predictive. The results are discussed with regard to prevention of marital distress.

Improving dyadic coping in couples with a stress-oriented approach: a 2-year longitudinal study.

This study sought to assess the effectiveness of a marital distress prevention program for couples by examining how marital quality, especially marital competencies such as dyadic coping, could be improved by means of a prevention program focusing on the enhancement of coping resources (Couples Coping Enhancement Training). The study consisted of 59 couples in the intervention group and 59 couples in the matched comparison group. The results reveal that it is possible to improve marital quality, especially marital competencies, by means of one short-term intervention lasting 18 hr. However, the effects decreased after 2 years, raising the importance of booster sessions in helping to maintain effects over a longer period of time.

Clinical Utility of the 2 New Scales of the Health of the Nation Outcome Scales for Children and Adolescents (HoNOSCA): A Naturalistic, Prospective Study in a Psychiatric Unit for Adolescents.

OBJECTIVES: The goal of this study was to assess the clinical usefulness of the emotional symptoms (Emo) and externalizing problems (Ext) scales compared with the Total score on the Health of the Nation Outcome Scales for Children and Adolescents (HoNOSCA). METHODS: The HoNOSCA was rated at admission and discharge for 260 adolescent inpatients. The primary outcomes assessed were (a) the sensitivity of the 3 HoNOSCA scores to clinical improvement; and (b) the between diagnoses discriminative value of these scores. RESULTS: Analyses of variances [2 (time: admission vs. discharge) × 5 (diagnostic groups)] revealed a main effect of time for the 3 scores, a main effect of the diagnostic group for the Total and Ext scores, and an interaction effect between time and diagnosis for the Emo score. A moderate correlation was observed between the change in Ext and Emo scores between admission and discharge. DISCUSSION: These 2 new scales of the HoNOSCA demonstrated good clinical utility and the ability to assess different aspects of clinical improvements. A significant discriminative value of both scores was observed. SIGNIFICANT OUTCOMES: The clinical utility of the 2 new scales on the HoNOSCA was established. These 2 new scales provided a sensitive measure of clinical outcome for assessing improvement between admission and discharge on a psychiatric inpatient unit for adolescents, regardless of diagnostic group, and captured additional information about clinical improvements. Adolescents with psychosis and conduct disorders presented with higher externalizing symptoms than those with other disorders, as rated on the HoNOSCA, at admission and discharge. The Emo score differentiated between clinical improvement in patients with psychosis versus eating disorders. LIMITATIONS: The sample in this study represented a homogeneous population of adolescent inpatients, so that further research is needed before these findings can be generalized to outpatients. In addition, the small number of patients in some diagnostic groups did not allow for their inclusion in some of the statistical analyses.

Assessment of parental discipline in daily life.

The use of ecological momentary assessment (EMA) for studying parenting has been rare. We examined the psychometric properties and structural validity of an EMA Parenting Scale based on 32 mothers' reports of their parenting over a period of 10 consecutive days, and explored the acceptance of the scale and compliance with the procedure. The results suggested that the EMA Parenting Scale was well accepted for the assessment of daily parenting, and that it consistently captured the overreactive and lax dimensions of parenting across different episodes of child misbehavior. Moreover, multilevel analyses suggested that the scale was sensitive to change across different parenting episodes, and that it reliably assessed the dimensions at both the personal and situational levels.