Informal care burden during the COVID-19 pandemic in Flanders, Belgium: The role of perceived threat, personality and resilience.

BACKGROUND: In this study, we investigate how socio-demographic characteristics (age, gender and education) and informal care relationship characteristics (e.g., time spent on care, number of informal caregivers, professional care) are linked with informal care burden during the COVID-19 pandemic. In addition, we expect this burden to differ by personality characteristics, degree of resilience, and-in this specific context-perceived the COVID-19 threat. METHOD: We used the fifth wave of a longitudinal study to identify 258 informal caregivers. These online survey data came from a five-wave longitudinal study in Flanders, Belgium that ran from April 2020 to April 2021. Data were representative of the adult population by age and gender. Analyses include t-tests, ANOVA, SEM and binomial logistic regression. RESULTS: We found that the informal care burden was strongly linked with a socio-economic gradient, time investment changes in care since the start of the pandemic, and whether there was more than one informal caregiver. Personality traits such as agreeableness and openness to experience, and the perceived threat of COVID-19 were also related to care burden. CONCLUSIONS: During the pandemic, informal caregivers were put under extra considerable pressure: restrictive government measures sometimes led to the temporary suspension of some or all professional care for persons with care needs, which may have resulted in a growing psychosocial burden. We recommend that, in the future, the focus should be on supporting the mental wellbeing and social participation of caregivers along with measures to protect caregivers and their relatives from COVID-19. Support structures for informal caregivers should be kept running during crises now and in the future, but it is also important to adopt a case-by-case basis to consider support for informal caregivers.

Parental Perspectives on Adolescent Health-Related Confidentiality: Trust, Responsibility, and Disease Etiology as Key Themes.

PURPOSE: As children progress through adolescence, they become more independent and more responsible regarding their health. This shift in responsibility from the parents to the adolescent poses a challenge for healthcare professionals who must consider both parties. Pediatricians and other healthcare professionals may encounter problems regarding consent and confidentiality. This study aimed to investigate the opinions of Belgian parents of adolescents concerning cases about confidentiality in adolescent health problems. METHODS: A qualitative methodology with semi-structured interviews and a case-based approach was chosen to answer our study aim. Belgian parents of adolescents were recruited voluntarily; 20 parents were interviewed. Parents' opinions on four different cases regarding confidentiality were obtained. Interviews were audio- and video-recorded and transcribed verbatim. Independent coding of the transcripts was conducted. RESULTS: Parents' opinions differ considerably when asked if a physician has to maintain confidentiality toward the adolescent, depending on the content of the case. Opinions appear underpinned by three factors: trust, responsibility of the different parties, and the etiology of the problem. DISCUSSION: This study shows that the nature, severity, and frequency of the medical issue at hand shape the opinions of parents toward patient confidentiality, on top of the trust and responsibility factors also highlighted in previous work. This is in contrast to the Belgian legislation, which focuses on maturity regardless of context.

Interrater reliability of the BelRAI Social Supplement in Flanders, Belgium: Simultaneous rating of community-dwelling adults with care needs during COVID-19.

Background: The BelRAI Screener is a short-form assessment consolidating internationally validated interRAI items focusing on physical and psychological aspects of functioning and problems with activities of daily living. It was fully implemented in the Flemish home care setting as of June 2021. In a biopsychosocial model for developing a personalized and effective care plan social and contextual aspects are considered equally important to biomedical ones. Thus, a social supplement to the BelRAI Screener was collaboratively developed with stakeholders and tested to gather additional information on the social context of community-dwelling adults with care needs. Objective and methods: To examine the interrater reliability of the BelRAI Social Supplement in Flanders, Belgium, an observational study was conducted using a convenience sample. The method of simultaneous rating was used due to strict COVID-19 guidelines at the time and to minimize assessment burden. Fifty two community-dwelling adults requesting home care support were simultaneously assessed by two independent assessors during home visits. Interrater reliability was tested on all 80 items of the BelRAI Social Supplement using observed agreement, kappa coefficients, and intraclass correlation coefficients. Results: The kappa mean (0.74) and median (0.79) values for nominal items, show substantial agreement, while the kappa mean and median values for ordinal items were 0.81 and 0.90, which correspond to almost perfect agreement. Following the traditional cut-off points for the interpretation of the kappa statistic, reliability was almost perfect (κ > 0.81) for 49% of all items, substantial (0.60 < κ ≤ 0.80) for 33%, moderate (0.40 < κ ≤ 0.60) for 8%, and poor (κ < 0.40) for 10%. The majority of items with poor kappa value, showed a high observed agreement, reflecting homogeneity of the sample rather than poor agreement. Conclusion: The strength of kappa agreement for the items in this version of the BelRAI Social Supplement is generally substantial to almost perfect, with high proportions of observed agreement. COVID-19 restrictions had a large impact on the planning and execution of the home visits. A final optimization of the instrument and accompanying manual according to the findings will result in an improved version ready for nation-wide implementation.

Conceptualising relevant social context indicators for people receiving home care: A multi-method approach in Flanders, Belgium.

Despite an increasing awareness of the impact of the social context of a person on personalised care planning, there is currently no generally accepted classification of social context. As a result, home care professionals have a partial understanding of what social context is and how it affects and can even benefit their work. In this study, we define the main themes and concepts of the social context in the home care setting. The goal in this study is twofold. Initially, we want to offer a multidimensional and practical model of social context, founded on the perspectives of care users and professional caregivers in home care. This model of social context, in turn, will be the foundation for the development of a Social Supplement for the interRAI assessment instruments. We conducted nine focus groups in Flanders between September and November 2017. Fifty-four people participated. The focus groups followed a semi-structured format based on themes identified from the literature and three in-depth interviews with experts. Questions focused on defining the main themes of 'social context' and their subcategories. At the end of each discussion, participants were asked to consider which concept could be suitable and essential for a Social Supplement to the current interRAI instruments. Focus groups were recorded, transcribed and analysed using NVivo. We used investigator and theoretical triangulation to ensure the quality of our analysis, and identified five overarching themes of social context; (a) care and support, (b) physical environment, (c) life and care goals, (d) psychosocial well-being and (e) civic engagement. These main themes were mentioned throughout the nine focus group discussions, even though a diverse group of stakeholders participated. This model provides the basis for the development of a Social Supplement for the interRAI assessment instruments in Flanders, Belgium.

Factors associated with caregiver distress among home care clients in New Zealand: Evidence based on data from interRAI Home Care assessment.

OBJECTIVE: To identify factors associated with caregiver distress among home care clients in New Zealand. METHODS: The cohort consisted of 105,978 community-dwelling people aged 65 years or older requiring home care services in New Zealand who had at least one informal caregiver. Bivariate and multivariable logistic regression analyses were used to identify factors associated with caregiver distress. RESULTS: Variables associated with risk of caregiver distress included Depression Rating Scale score, aggressive behaviour symptoms, primary informal caregiver relationship to patient, Cognitive Performance Scale score, Changes in Health, End-stage disease, and Signs and Symptoms Scale score, informal care time, secondary informal caregiver relationship to care recipient, activities of daily living hierarchy scale score and any hospitalisation. CONCLUSIONS: The study has identified important characteristics that are associated with caregiver stress. These results suggest that caregiver distress can be relieved by promoting protective factors and aiming to reduce risk factors among home care clients in New Zealand.

Examining Care Assessment Scores of Community-Dwelling Adults in Flanders, Belgium: The Role of Socio-Psychological and Assessor-Related Factors.

One of the primary objectives of health systems is to provide a fair system by providing a comprehensive and holistic approach to caregiving rather than focusing on a single aspect of a person's care needs. This approach is often embodied by using standardized care assessments across health and social care settings. These assessments are completed by professional assessors and yield vital information regarding a person's health or contextual characteristics (e.g., civic engagement, psychosocial wellbeing, environmental characteristics, informal care). However, these scores may be subject to bias that endangers the fairness of the health system. In this study, we investigate to what extent socio-economic and psychological indicators and assessor-related indicators are associated with BelRAI Screener care assessment scores amongst 743 community-dwelling adults nested within 92 assessors in Flanders, Belgium. Findings indicate that there is significant variance in scores at the assessor-level. Socio-psychological characteristics of clients are associated with scores: being fluent in Dutch and providing informal care are associated with low care dependency, while living with children, feelings of depression, and the presence of an informal caregiver during assessment are associated with high care dependency. We discuss the importance of rigorous assessor training and the potential for socio-psychological factors to contribute to the allocation of welfare benefits in light of the Flemish home care system's potential (lack of) fairness.

Towards a standardized approach of assessing social context of persons receiving home care in Flanders, Belgium: the development and test of a social supplement to the interRAI instruments.

BACKGROUND: Apart from a person's physical functioning, the early identification of social context indicators which affect patient outcomes - such as environmental and psychosocial issues - is key for high quality and comprehensive care at home. During a home care assessment, a person's biomedical and functional problems are typically considered. Harder to define concepts, such as psychosocial well-being or living arrangements, are not routinely documented, even though research shows they also affect functioning and health outcomes. The purpose of this study is to develop and test a concise, integrated assessment (BelRAI Social Supplement) that evaluates these social context indicators for persons receiving home care to complement existing interRAI- instruments. METHODS: The development of the BelRAI Social Supplement is a multi-stage process, based upon the revised MRC-framework, involving both qualitative and quantitative research with stakeholders such as; clients, informal caregivers, care professionals and policy makers. The developmental process encompasses four stages: (I) item generation based on multiple methods and content validation by a panel of stakeholders (II) assessing feasibility and piloting methods, (III) early evaluation, and (IV) final evaluation. Stage II and III are covered in this paper. RESULTS: During Stages I and II, a testable version of the BelRAI Social Supplement was developed in an iterative process. In Stage III, 100 care professionals assessed 743 individuals receiving home care in Flanders between December 2018 and December 2019. Using inter-item correlation matrixes, frequency distributions and regular feedback from the participants, the BelRAI Social Supplement was improved and prepared for Stage IV. The updated version of the instrument consists of four main sections: (1) environmental assessment; (2) civic engagement; (3) psychosocial well-being; and (4) informal care and support. In total, the BelRAI Social Supplement contains a maximum of 76 items. CONCLUSIONS: The BelRAI Social Supplement was reviewed and shortened in close collaboration with care professionals and other experts in Flanders. This study resulted in an instrument that documents need-to-know social context determinants of home dwelling adults.