Transitions in patterns of caregiver involvement before and during the COVID-19 pandemic: A latent transition analysis.

This retrospective study investigated transitions in patterns of caregiver involvement before and during COVID-19 and their antecedents and consequences. A total of 504 young children (age: M ± SD = 49.92 ± 4.30 months) and their primary caregivers were recruited from the junior classes of 10 preschools in Zhengzhou City, Henan Province, China. Latent profile analysis identified three profiles characterized by (1) high levels of caregiver involvement (HCI), (2) average levels of caregiver involvement (ACI), and (3) low levels of caregiver involvement (LCI). Latent transition analysis showed that caregivers who belonged to the HCI or LCI latent status before COVID-19 tended to transition to the ACI latent status during COVID-19. Higher levels of caregiver depression contributed to a higher probability of transitioning from the HCI to the ACI latent status, while higher levels of household chaos predicted a higher probability of transitioning from the HCI to the ACI latent status and a lower probability of transitioning from the LCI to the ACI latent status. Finally, the transitions in patterns of caregiver involvement were associated with young children's approaches to learning during the pandemic.

Identifying effective moderators of cognitive behavioural trauma treatment with caregiver involvement for youth with PTSD: a meta-analysis.

Children can develop post-traumatic stress disorder (PTSD) and mental health symptoms after traumatic events. This meta-analysis evaluated the influence of moderators of cognitive behavioural trauma treatment (CBTT) with caregiver involvement in traumatized children. A total of 28 studies were included, with 23 independent samples and 332 effect sizes, representing the data of 1931 children (M age = 11.10 years, SD = 2.36). Results showed a significant medium overall effect (d = 0.55, t = 2.478, p = 0.014), indicating CBTT with caregiver involvement was effective in treating PTSD (d = 0.70), with somewhat smaller effect sizes for internalizing, externalizing, social, cognitive and total problems (0.35 < d > 0.48). The positive treatment effect was robust; we found somewhat smaller effect sizes at follow-up (d = 0.49) compared to post-test (d = 0.57) assessments. Furthermore, several sample (i.e. child's age, gender, and trauma event), programme (i.e. the duration of treatment, number of sessions), study (i.e. control condition, type of instrument, informant, type of sample), and publication (i.e. publication year and impact factor) characteristics moderated the treatment outcomes of the child. In sum, the results of our meta-analysis might help to improve the effectiveness of cognitive behavioural trauma treatment for youth with PTSD, and guide the development of innovative trauma interventions that involve caregivers. Implications for theory and practice are discussed.

Caregivers' perceived changes in engaged time with preschool-aged children during COVID-19: Familial correlates and relations to children's learning behavior and emotional distress.

The COVID-19 pandemic and its resulting containment measures have forced many children and their caregivers around the world to spend unprecedented amounts of time at home. Based on a sample of 764 households with preschool-aged children in Wuhan, China, where the pandemic began, this study examined how primary caregivers perceived changes in the amount of time spent engaging with their children (i.e., engaged time) from the start of the pandemic and whether these changes were associated with children's learning behavior and emotional distress. The results showed that primary caregivers generally perceived increases in the amount of engaged time spent on indoor activities with their children but decreases in the amount of engaged time spent playing with their children outdoors. A bigger family size and greater loss of family income during the pandemic were associated with bigger perceived increases in caregivers' engaged time spent on indoor activities, whilst a higher level of parental education was associated with bigger perceived decreases in engaged time spent playing with children outdoors. The family's poorer physical health and higher levels of chaos during the pandemic were related to smaller perceived increases in caregivers' engaged time spent on educational activities. Finally, although bigger perceived increases in caregivers' indoor engaged time (e.g., time spent on educational activities) were associated with higher levels of positive learning behavior and fewer symptoms of anxiety and withdrawal in the children, bigger perceived decreases in outdoor play time were associated with fewer symptoms of anxiety and withdrawal. These findings offer valuable insights into caregivers' allocation of engaged time with their preschool-aged children during the COVID-19 pandemic.

Caregiver Presence and Involvement in a Canadian Neonatal Intensive Care Unit: An Observational Cohort Study.

BACKGROUND: Presence in the neonatal intensive care unit (NICU) is a vital step for caregivers initiating involvement, such as skin-to-skin contact, holding or singing/reading to their newborn. Little is known about caregiver presence and involvement in Canadian NICU's context by caregiver type (mother, father, other), and the association between maternal presence and key maternal and newborn characteristics. PURPOSE: The primary objective was to examine the presence and involvement of family caregivers in the NICU. The secondary objective was to examine the relationship between maternal presence and maternal and newborn characteristics. DESIGN AND METHODS: A prospective observational cohort study in an open bay setting of an Eastern Canadian NICU. Presence (physically present at the newborn's bedside) and involvement (e.g., skin-to-skin, singing/reading) were tracked daily by families in the NICU until discharge. Demographic information was also collected. RESULTS: Participants included 142 mothers and their newborns. Mothers were present 8.7 h/day, fathers were present 4.1 h/day, and other caregivers were present 1.8 h/day in the NICU in the first 34 days. Mothers were involved in care activities 50% of the time they were present in the NICU, whereas fathers and other caregivers were spending 20% and 6% of their time respectively. Regression identified maternal age, distance to home, parity, birthweight, and length of stay to be statistically significant variables related to maternal presence. CONCLUSIONS: There is variation in presence and involvement by caregiver type. Targeted interventions to maintain and increase mothers, fathers and other caregivers' presence and involvement in care throughout their stay in the NICU are recommended.

[The home visit: "If it were only work at the level of the daisies, not much would happen there"]. / Visite à domicile : de l'importance de la supervision.

The home visit is a nursing practice more particularly developed within the framework of the medico-psychological centre. Going to the patient's home to ensure continuity of care is not an easy task. Although approached in a nursing training institute, it cannot be learned. Clinical situations are sometimes explosive or disconcerting, undermining the helpless and inadequately prepared nurse. Supervision of nursing practices can be life-saving and allow everyone to make sense of clinical situations. Feedback from experience.

Can in-hospital or post discharge caregiver involvement increase functional performance of older patients? A systematic review.

BACKGROUND: Regaining pre-hospitalization activity levels is only achieved in 30-50% of older patients. Extra physiotherapy time has been proven to improve functional outcome and shorten length of stay, but is costly. Considering their key role in caring for older people, involving informal caregivers in rehabilitation might further improve functional performance. AIM: To determine if in-hospital or post discharge caregiver involvement can increase functional performance in older adults. The secondary aim was to determine if caregiver involvement can influence, quality of life of patient and caregiver, medical costs, readmission rate, discharge location, and mortality. DESIGN: Systematic review with narrative synthesis. METHODS: The electronic bibliographic databases MEDLINE, Embase, CINAHL, Cochrane and Web of Science were searched for (quasi) experimental and observational studies, with the following inclusion criteria; caregiver involvement regarding functional performance, mean age over 65 years, admitted to a hospital unit and subsequently discharged to their home setting. Risk of bias was assessed with the Rob 2 (randomized trials) and the ROBINS-1 tool (non-randomized studies). RESULTS: Eight studies of an initial 4683 were included: four randomized controlled trials, one prospective cohort study, one non-randomized controlled trial, one subgroup analysis of an RCT and one prospective pre-post study. All but one study included patients with stroke. Three types of caregiver interventions could be distinguished: a care pathway (inclusion of caregivers in the process of care), education on stroke and teaching of bed-side handling-skills, and caregiver-mediated exercises. The one study evaluating the care pathway reported 24.9% more returns home in the intervention group. Studies evaluating the effect of education and bed-side handling-skills reported higher effect sizes for several outcomes with increasing session frequency. All studies with caregiver-mediated exercises showed beneficial effects on functional performance, immediately after the intervention and within 3 months follow-up. CONCLUSION: The findings of this review suggest that involvement of caregivers in the rehabilitation of older adults leads to better functional performance up to 3 months after initiation. However, evidence is low and mainly focusing on stroke.

Are we "missing the big picture" in transitions of care? Perspectives of healthcare providers managing patients with unplanned hospitalization.

BACKGROUND: Healthcare providers play a critical role in the care transitions. Therefore, efforts to improve this process should be informed by their perspectives. AIM: The study objective was to explore the factors that negatively/positively influence care transitions following an unplanned hospitalization from the perspective of healthcare providers. METHODS: A qualitative study using semi-structured interviews conducted between February and September of 2016 at a single academic medical center. We enrolled fifteen healthcare providers from multiple disciplines involved in the management of patients experiencing an unplanned hospitalization. Respondents shared their experiences with care transitions and identified factors within and outside of the discharging health facility that impede or facilitate this process. Transcribed interviews were analyzed using emerging themes from the interviews. RESULTS: We identified six themes and associated subthemes from the interviews on factors that influence care transitions. Three themes focused on factors within the discharging healthcare facility: untailored and overloaded patient discharge information, timing of the post-discharge care conversation, provider-to-patient and provider-to-provider miscommunication. The other three themes were related to external factors including caregiver involvement, having a safe and stable housing environment, and access to healthcare and community resources. Providers discussed how these factors positively/negatively influence the hospital-to-home transition. CONCLUSIONS: Our study identifies factors within and outside the discharging healthcare facility that influence care transitions, ultimately affect patient-centered outcomes and provider satisfaction with delivered care. Strategies aimed at improving the quality of care transitions should address these barriers and actively engage healthcare providers who are pivotal in care transitions.

Fidelity scorecard: evaluation of a caregiver-delivered symptom management intervention.

AIM: To evaluate and quantify the intervention fidelity of a symptom management protocol through implementation of a scorecard, using an exemplar study of caregiver-delivered reflexology for people with breast cancer. BACKGROUND: Studies on caregiver-delivered symptom management interventions seldom include adequate information on protocol fidelity, contributing to potentially suboptimal provision of the therapeutic intervention, hindering reproducibility and generalizability of the results. DESIGN: Fidelity assessment of a 4-week intervention protocol in a randomized controlled trial (RCT) with data collection between 2012 - 2016. METHODS: The National Institutes of Health Behaviour Change Consortium (NIH-BCC) conceptual model for intervention fidelity guided the study. The five NIH-BCC fidelity elements are: (1) dose; (2) provider training; (3) intervention delivery; (4) intervention receipt; and (5) enactment. To illustrate the elements, an intervention protocol was deconstructed and each element quantified using a newly developed fidelity scorecard. RESULTS: Mean scores and frequency distributions were derived for the scorecard elements. For dose, the mean number of sessions was 4·4, 96% used the correct intervention duration and 29% had 4 weeks with at least one session. Provider training was achieved at 80% of the maximum score, intervention delivery was 96%, intervention receipt was 99% and enactment indicated moderate adoption at 3·8 sessions per patient. The sample mean score was 15·4 out of 16, indicating the high overall fidelity. CONCLUSION: Research findings that include description of how fidelity is both addressed and evaluated are necessary for clinical translation. Clinicians can confidently recommend symptom management strategies to patients and caregivers when fidelity standards are explicitly reported and measured.

Impact of home care management on the involvement of informal caregivers by formal caregivers.

This study explores the link between management characteristics of home care agencies and the involvement of informal caregivers in caregiving. Based on a study of policy documents of two agencies and semi-structured interviews with five team managers and 31 formal caregivers, we conclude that, although the importance of involving informal caregivers is emphasized in official documentation, actual contact with informal caregivers is often lacking. Comparison of the work processes of the two agencies shows that contact with informal caregivers and their potential involvement are enhanced by smaller teams, less task division, and clarity about the responsibilities of formal caregivers.

Immediate Effects of a Program to Promote School Readiness in Low-Income Children: Results of a Pilot Study.

Children from low-income backgrounds demonstrate poorer school readiness skills than their higher-income peers. The Kids in Transition to School (KITS) Program was developed to increase early literacy, social skills, and self-regulatory skills among children with inadequate school readiness. In the present study, 39 families participated in a pilot efficacy trial conducted through a community collaboration to examine the feasibility and impact of the KITS program with families from disadvantaged neighborhoods. Participating families were demographically representative of the larger populations in the participating school districts. Children who received the intervention demonstrated significantly greater improvements in letter naming, initial sound fluency, and understanding of concepts about print than their peers who did not participate in the intervention, as well as decreases in aggressive responses to peer provocation and increases in self-regulation skills. Results suggest that a brief, focused school readiness intervention is feasible to conduct with low-income families and may improve critical skills.

Immediate Effects of a School Readiness Intervention for Children in Foster Care.

RESEARCH FINDINGS: School readiness is a strong predictor of adjustment in elementary school and beyond. Children in foster care are at particular risk for academic and social difficulties in school. Limitations in self-regulatory skills and caregiver involvement among these children might contribute to a lack of school readiness. This study presents the immediate effects on school readiness of a targeted, short-term intervention designed to improve children's early literacy, prosocial, and self-regulatory skills during the summer before kindergarten entry: Kids in Transition to School (KITS). Using a randomized controlled trial design, 192 children in foster care were assigned to either an intervention or services as usual comparison condition. Multimethod, multiagent assessments were conducted immediately prior to and following the completion of the intervention. The results from structural equation modeling indicated that the intervention had significant, positive effects on early literacy and self-regulatory skills. PRACTICE: An efficacious, short-term, readily scalable, theoretically-based intervention targeted at specific vulnerabilities for children in foster care may help to improve their school readiness and eventual school adjustment.

Family Engagement in Services During COVID-19: A Mixed-Methods Study of Caregiver and Staff Perspectives.

INTRODUCTION: We examined changes in family engagement before versus during the pandemic in pediatric and family services and perceived facilitators and barriers to family engagement. METHOD: We employed a mixed-methods assessment of staff and caregiver perspectives related to pediatric and family medicine clinics and family resource centers in rural northern New England. We used narrative synthesis to analyze qualitative interviews (n = 29) and descriptive statistics for quantitative surveys (n = 108). RESULTS: Staff felt they were not doing as well at engaging families during versus prepandemic, identifying numerous facilitators and barriers. We found differences in resources used by families before versus during the pandemic. We identified discordant perspectives between caregivers and staff regarding how well clinics and centers identified and responded to family needs. DISCUSSION: Leaders in pediatrics, advanced practice nursing, and related fields can draw on our findings to decide what services and modalities they provide for postpandemic.

Caring for Dementia Caregivers: Psychosocial Factors Related to Engagement in Self-Care Activities.

Caregivers often prioritize the needs of the care recipient and neglect their own health needs. It is imperative to understand the factors related to their self-care practices and engagement in self-care activities. The present study examined the extent to which dementia caregivers engaged in self-care activities, how this varied depending on caregiver characteristics, and whether self-care engagement mediated the relationship between social support and caregiver outcomes. The study utilized baseline data from a diverse sample of dementia caregivers (N = 243) who participated in a randomized trial evaluating a psychosocial technology-based caregiver intervention. Results showed that the dementia caregivers engaged in low levels of self-care activities and that their engagement varied based on the caregivers' background characteristics (age, gender, race/ethnicity, relationship to the care recipient, and employment status). Less caregiver involvement (e.g., less ADL/IADL help provided and more caregiver preparedness) and more social support predicted higher self-care activity engagement. Self-care activity engagement served as a mediator, such that more social support predicted more self-care activities, which, in turn, were associated with more positive perceptions of caregiving and less caregiver burden and depression. The findings suggest a need for interventions that promote self-care engagement among dementia caregivers and underscore the importance of social support and caregiver preparedness to caregivers' well-being.

Medication Decision-Making and the Medicines' Pathway in Nursing Homes: Experiences and Expectations of Involvement of Residents and Informal Caregivers.

BACKGROUND: Information on how residents and their informal caregivers are involved in the medicines' pathway in nursing homes is scarce. Likewise, it is not known how they would prefer to be involved therein. METHODS: A generic qualitative study using semi-structured interviews with 17 residents and 10 informal caregivers from four nursing homes was performed. Interview transcripts were analyzed using an inductive thematic framework. RESULTS: Four themes were derived to describe resident and informal caregiver involvement in the medicines' pathway. First, residents and informal caregivers show behaviors of involvement across the medicines' pathway. Second, their attitude towards involvement was mainly one of resignation, but variation was noted in their involvement preferences, ranging from minimal information to active participation needs. Third, institutional and personal factors were found to contribute to the resigned attitude. Last, situations were identified that drive residents and informal caregivers to act, regardless of their resigned attitude. CONCLUSIONS: Resident and informal caregiver involvement in the medicines' pathway is limited. Nevertheless, interviews show that information and participation needs are present and show potential for residents' and informal caregivers' contribution to the medicines' pathway. Future research should explore initiatives to increase the understanding and acknowledgement of opportunities for involvement and to empower residents and informal caregivers to take on their roles.

The RESPECT-brochure: Development of a tool to inform and empower residents and informal caregivers on the medicines' pathway in nursing homes.

Objective: To develop and evaluate a tool to inform and empower nursing home (NH) residents and informal caregivers regarding the medicines' pathway. Methods: Feedback on the tool's text, drafted by the research team, was collected from a professional organization; the lay-out was designed by an illustrator. The tool was pilot tested in NHs, focusing on feasibility, appropriateness, and meaningfulness. Semi-structured interviews and focus groups with residents, informal caregivers, and healthcare professionals were performed, as well as document analysis. Qualitative data were analyzed inductively. Results: The RESPECT-brochure was developed and described each process of the medicines' pathway. Piloting showed that the tool was well perceived among residents and informal caregivers and offered opportunities to discuss medication-related questions and concerns, but that skills to tailor the conversation, especially given the changing NH population, a matching vision and local champion are required for the tool's uptake. Conclusion: An informative and empowering tool has been successfully developed and pilot tested in NHs. Future research should investigate which strategies for implementation work best and can explore the impact of the tool's use in daily practice. Innovation: The tool is the first in its kind and grants nursing home staff a new strategy to promote person-centered care.

Partnering with patients and caregivers to enrich research and care in kidney disease: values and strategies.

Patient and caregiver involvement broadens the scope of new knowledge generated from research and can enhance the relevance, quality and impact of research on clinical practice and health outcomes. Incorporating the perspectives of people with lived experience of chronic kidney disease (CKD) affords new insights into the design of interventions, study methodology, data analysis and implementation and has value for patients, healthcare professionals and researchers alike. However, patient involvement in CKD research has been limited and data on which to inform best practice is scarce. A number of frameworks have been developed for involving patients and caregivers in research in CKD and in health research more broadly. These frameworks provide an overall conceptual structure to guide the planning and implementation of research partnerships and describe values that are essential and strategies considered best practice when working with diverse stakeholder groups. This article aims to provide a summary of the strategies most widely used to support multistakeholder partnerships, the different ways patients and caregivers can be involved in research and the methods used to amalgamate diverse and at times conflicting points of view.

Interventions Involving Caregivers for Children and Adolescents Following Traumatic Events: A Systematic Review and Meta-Analysis.

Although treatment guidelines recommend interventions entailing caregiver involvement for children and adolescents following traumatic experiences, evidence on their effectiveness is inconsistent. The present systematic review and meta-analysis considered possible moderators of their effectiveness. METHOD: Eligible studies were (quasi-)randomized controlled trials and efficacy trials published in English or German with participants up to the age of 21 years presenting symptoms of mental disorders due to traumatic experiences. The effectiveness of interventions entailing any kind and extent of caregiver involvement had to be investigated by applying evaluated instruments. PubMed, PsycINFO, ERIC, COCHRANE and PSYNDEX were searched. RESULTS: A total of 33 studies with 36 independent samples were retrieved. Child- and parent-reports on PTSD, depression, anxiety, ADHD, internalizing, externalizing symptoms and behavior problems were analyzed where available. The pooled effect size is significant and robust at post-treatment for child-reported PTSD, g = - 0.34 (95% CI = - 0.53; - 0.14), parent-reported PTSD, g = - 0.41 (95% CI = - 0.71; - 0.11), child-reported depression, g = - 0.29 (95% CI = - 0.46; - 0.11), child-reported anxiety, g = - 0.25 (95% CI = - 0.42; - 0.08), and parent-reported internalizing symptoms, g = - 0.27 (95% CI = - 0.47; - 0.07). Female sex and fulfilling diagnostic criteria appeared as potential moderators. The only significant effect size at follow-up is found for child-reported PTSD symptoms 12 months post-treatment, g = - 0.37 (95% CI = - 0.67; - 0.07). CONCLUSIONS: Interventions entailing caregiver involvement revealed greater symptom reductions than control conditions. Determinants of their effectiveness should be examined further.

Investigating the feasibility and effectiveness of a modular treatment program for children and adolescents with depression and interpersonal problems: study protocol of a quasi-experimental pilot feasibility trial (CBASP@YoungAge).

BACKGROUND: Depression is a serious disorder in childhood and adolescence. Affected children and adolescents show significant impairments in various aspects of life. Studies on the effectiveness or efficacy of psychotherapy in depressed children and adolescents are qualitatively very heterogeneous and reveal small effect sizes. There is thus a need to better tailor psychotherapy approaches to these age groups to improve outcomes like parent-child relationship, symptomatology, or quality of life. To address this gap, we designed a modular, individualized treatment program for children and adolescents based on the Cognitive Behavioral Analysis System of Psychotherapy (CBASP) including caregiver involvement. METHOD: This quasi-experimental pilot feasibility trial is a phase 1 to phase 2 study investigating the feasibility and effectiveness of CBASP@YoungAge by including an intervention group (CBASP@YoungAge) and a treatment-as-usual control group. The treatment of depressive symptoms as well as interpersonal problems with primary caregivers are the main targets of CBASP@YoungAge. Personalization is ensured concerning the treatment course, caregivers' involvement, and the patient's age. The primary outcome relates to two areas: the feasibility of the CBASP@YoungAge treatment program in an outpatient context and a change in patients' depressive symptomatology from before to after treatment. We conduct a brief process evaluation after each session in the intervention group to closely monitor the treatment process and examine feasibility from the therapists' and patients' perspectives and mechanisms of symptom change. In addition, we consider interpersonal behavior between children and caregivers, parenting behavior, and monitor the global-health-index in children and parents as secondary outcomes. Pre-, post-, and follow-up data are evaluated. DISCUSSION: This is the first study of a modular-based intervention program for children and adolescents with depression and a clear focus on the interpersonal problems between the depressed young patient and her/his caregiver. It will provide important knowledge on the feasibility and effectiveness of the program and potential benefits of including caregivers in psychotherapy. Based on this study's results, we plan a multicenter, randomized, controlled trial whose long-term aim is to improve the psychotherapeutic care of young patients with depression while preventing persistent courses of depressive disorders. TRIAL REGISTRATION: German Clinical Trials Register, DRKS (identifier DRKS00023281 ). Registered 17 November 2020-Retrospectively registered.

Caregiver-relevant perspectives from a multi-stakeholder collaborative advisory board on adapting a child mental health intervention to be delivered in child-welfare settings.

Adapting evidence based mental health interventions (EBI) to be provided in child welfare (CW) settings by CW workers could reduce barriers to families receiving mental health care. In order to promote implementation success, the adaptation of EBIs should include the perspectives of those who deliver and those who receive the EBI. The following study uses qualitative methods to elicit and analyze caregiver-relevant perspectives and adaption recommendations from CW stakeholders about the 4Rs and 2Ss Strengthening Families Program, an EBI for youth disruptive behavior disorders, to be implemented in CW settings. Recommendations included adjusting curriculum to better fit the culture of recipients and conveying the importance of openness and respect to providers.

Patient perspectives on relatives and significant others in cancer care: An interview study.

PURPOSE: In this study, patient perspectives on their relative's involvement in gynaecological cancer treatment and care are investigated. METHODS: In total 17 women participated in two qualitative research interviews each during their treatment period. By applying a phenomenological-hermeneutic text interpretation methodology, the findings were systematically identified, interpreted, and discussed. This process gave rise to two main themes: "Relatives include more than family members" and "Interactions with relatives and significant others". RESULTS: The findings showed that, besides family members, in particular neighbours and people who had experienced cancer themselves were an important and valuable support to the patients. Help with daily activities and errands, and providing informal company, represented a substantial support in difficult times, and generated a sense of social belonging and the experience of fellowship. Interactions with relatives were influenced by the patients' personal reflections and experiences and posed several positive as well as negative challenges. Firstly, the patients had many concerns about passing on the news of their cancer disease to their social network. Loneliness, in various representations, was a persistent theme, which reflected various experiences of vulnerability. CONCLUSION: Positive family relations represented a unique resource during cancer treatment; however, due to relatives' worries or lack of support, patients could experience strain. This perspective on relatives' involvement - from the patient's point of view - seems to be understudied.