The social context of community-dwelling adults with care needs. The development of a Social Supplement to the BelRAI Screener and the interRAI Home Care instrument

Population ageing puts significant pressure on the supply and capabilities of regional and national (health) care systems. This trend results, among other things, in a growing demand for outpatient health and social care, particularly home care. Alongside a growing number of older individuals with care needs who (prefer to) stay at home, we are witnessing a in increasingly complex care needs. These converging trends result in a need to update our (fragmented) healthcare systems. High-quality and person-centered care necessitates an evaluation of a person's complex health and environmental characteristics. Currently, professional caregivers often focus on only one aspect of a person's care needs and keep this information within their own organizations. These organizational barriers have contributed to healthcare systems in which collaboration between different services and professionals is difficult, despite the necessity of such interdisciplinary collaborations. In 2005, the Belgian government chose to systematically implement the interRAI instruments in home care and residential care to facilitate the introduction of a uniform, integrated, and person-centered care approach. Unlike other disease- or age-specific assessment instruments, all interRAI instruments use the same terminology and are applicable in multiple care settings. Most items are measured in the same way across all instruments, but there are also specific items for each setting. The interRAI instruments were translated into Dutch, French, and German - Belgium's official languages -, and the collection of instruments applicable across all communities in Belgium was named BelRAI. One such instrument is the comprehensive BelRAI Home Care instrument, which can be used in home care to assess the care needs, capabilities, and preferences of vulnerable individuals. Additionally, a BelRAI Screener was developed to evaluate the most common care needs of adults in home care through five main questions and elaboration modules: (1) Instrumental Activities of Daily Living (IADL), (2) Activities of Daily Living (ADL), (3) Cognitive problems, (4) Psychological problems, and (5) Behavioral problems. In addition to a person's physical functioning and mental state, early identification of social context indicators influencing the person's care needs - such as environmental and psychosocial issues - is essential for organizing and providing efficient and person-centered home care. The primary objective of this doctoral study was to develop an instrument to map the relevant elements of the social context of adult home care clients in Flanders, the northern, Dutch-speaking region of Belgium. This instrument serves as a supplement to the existing BelRAI instruments (BelRAI Screener and BelRAI Home Care). The development of the BelRAI Social Supplement was based on a stepwise process involving both qualitative and quantitative research, carried out in close collaboration with multiple stakeholders. This research design was inspired by the MRC-framework for developing and evaluating complex interventions and described in detail in Chapter 2. In the first phase, themes and questions for the BelRAI Social Supplement were generated based on available scientific and policy literature, in-depth interviews with experts, and focus groups with relevant stakeholders. Social context was conceptualized through five core themes: (i) care and support, (ii) physical environment, (iii) life and care goals, (iv) psychosocial well-being, and (v) civic engagement. Subsequently, determinants suitable for inclusion in the BelRAI Social Supplement were identified. The methodology and results of this first phase are described in Chapter 3. Building on this, a pilot version of the BelRAI Social Supplement was developed. It comprised four modules: (A) Environmental assessment, (B) Civic engagement, (C) Psychosocial well-being, and (D) Informal care and support. In the second phase, a new version of the BelRAI Social Supplement was developed based on preliminary test results. This version was then used in a large-scale test in Flanders in which assessors completed both a BelRAI Screener and a BelRAI Social Supplement for 743 individuals with care needs during home visits. The qualitative and quantitative data collected were used to improve the questions (items), response options (codes), and instructional material (training and manual). These findings are presented in Chapter 4. Using the dataset from the large-scale test, the associations between (1) socio-economic, (2) psychological indicators, and (3) assessor-related indicators with scores on the BelRAI Screener were investigated. This study is detailed in Chapter 5. In the subsequent phase, the revised version of the BelRAI Social Supplement was validated. Qualitative evaluations through focus groups and feedback sessions were conducted to gather the opinions of professional caregivers and other stakeholders. For the quantitative evaluation, 50 individuals with care needs were assessed by two people using the BelRAI Social Supplement to examine inter-rater reliability. The analyses concluded that the instrument generally scored from substantial to almost perfect reliability. Chapter 6 provides an overview of the methodology and results of the evaluative phase. Based on various research methods and stakeholder input, a sixth and final version of the BelRAI Social Supplement was established. This version comprises four modules and contains a minimum of 41 and a maximum of 72 items, depending on skipped items. It has been implemented in Flemish home care since June 2022. To conclude, I offer several recommendations for researchers and policymakers: The BelRAI Social Supplement is an information-sharing instrument developed in collaboration with family care and social work services. Unlike the BelRAI Screener, the scores of the BelRAI Social Supplement are not currently used for (regional) care budget allocation. However, various stakeholders explicitly request using the Supplement for budget allocation and "person-centered financing". Future research should explore if and how the BelRAI Social Supplement can be used for budget allocation within the context of Flemish Social Protection. Additionally, future studies should further validate and evaluate version 6 of the BelRAI Social Supplement using the proposed methodology outlined in the fourth phase of this doctoral study. Further research is also necessary to validate the instrument in other regions of Belgium and in other countries. Furthermore, policymakers should closely monitor the implementation of the BelRAI Social Supplement during the initial years. Attention should be given to less common but highly vulnerable groups in home care, such as young families and individuals with mental health vulnerabilities. Some crucial contextual determinants for these groups might be deleted in this last version of the instrument. Finally, sufficient resources and tools should be provided to facilitate communication and coordination among different caregivers (and sectors). For example, user-friendly and reliable software should be made available to caregivers to safely link different records for the same person (e.g., BelRAI assessments and other organization-specific documents). Additionally, investing in continuous education for professionals in home care is essential to ensure the proper and comprehensive use of the BelRAI instruments and their outputs.

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