Home-dwelling frail older adults are often faced with multimorbidity and complex care needs, requiring health and social care systems that support frail older adults to age in place. The objective of this paper was to investigate the types of formal health and social care as well as informal care and social support used by home-dwelling frail older adults; whether they perceive their support as sufficient; and their experience with and preferences for care and support.
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Background
Aging in place is a common goal for home-dwelling older adults [1], requiring health and social care systems that support the older person to continue to live at home [2,3,4]. However, living at home independently can become a major challenge for frail older adults [5], who are often faced with functional limitations, multimorbidity and complex care needs [6, 7]. They depend on health and social care and support, which may involve multiple formal (e.g., professionals, care organizations) and informal caregivers (e.g., family members, neighbors) [8,9,10]. In the community setting, care and support for frail older adults is often fragmented and uncoordinated, leaving them at risk for negative health outcomes [11, 12]. Care should ideally be based on a formal assessment and tailored to older adults’ needs and preferences, as well as integrated [13], whereby interprofessional collaboration and coordination between all relevant caregivers is leveraged to support frail older adults to age in place [14,15,16].
To help the aging population remain living at home despite their high care needs, and to avoid costly institutional care, there will be an increasing need for both health and social care from formal and informal caregivers [8, 9]. Health care services include “acute, chronic, preventive, restorative and rehabilitative care”, delivered by various providers [17], while social care includes a wide variety of services which provide “physical, emotional and social support to help people live their lives” [18]. Formal care at home includes health or social services provided by (mostly) paid and trained professionals, such as home care nurses or household services [19]. Informal care occurs when care is provided without payment or formal training, typically provided by a spouse, children, family and friends or neighbours [10, 19]. Informal care includes assisting with activities of daily living (e.g., bathing and eating), or instrumental (e.g., transportation and finances), assisting with medical or nursing tasks, or providing emotional support [10]. Due to the challenges which result from fragmentation between health and social care, integration has been widely promoted [20,21,22]. Both formal and informal care are well-researched; however, only more recently have researchers and policy-makers considered the intersection of these two approaches to caregiving for home-dwelling frail older adults [19, 23,24,25,26], an area of growing interest [24]. One study suggests that while non-frail older adults used informal care often as a substitute for formal care, frail older adults appeared to use both in compliment [8]. Although formal and informal caregivers should ideally work together, this is another gap recognized in community-based care for older persons [19, 24]. Bridging these “problematic divides” between health and social as well as formal and informal care is important when moving towards care integration [16, 27], i.e., optimally collaborating and communicating on aspects such as shared decision-making and care planning [28, 29], and all caregivers fulfilling their key roles in supporting the older person according to their needs and preferences [5, 16]. Therefore, when planning future care services for the aging population, it is helpful to first understand the specific sources and contributions from formal health and social care as well as informal care and social support used and preferred in future by the frail population. Such insight can help allocate resources and organize services which are coordinated and delivered around the needs and preferences of older adults [4], as well as identify and collaborate with local stakeholders who will become increasingly involved in caring for older adults in the community.
The various individuals involved in providing care and support to help meet the needs of home-dwelling frail older adults have often been studied as “care networks” [5, 8, 26, 30,31,32], or more recently as “care convoys” [23, 33]. Researchers identified the diversity within the structure of care networks or convoys [26], reporting multiple different combinations of informal and formal care use [33, 34], and occasionally explored whether frail older adults perceive their care and support to meet their needs [5, 33]. As shown by Verver et al.’s (2018) study, 33.7% of frail individuals living independently did not have the care and support that they needed e.g., social contacts or domestic help, even though they had more formal care providers and were more likely to have informal care providers involved than their non-frail counterparts [5]. Lambotte et al. (2020) also noted that a frail person’s satisfaction with his/her care convoy did not necessarily mean they had sufficient help, and vice versa [33]. Although these needs are bound to increase over time and would likely need to be iteratively re-assessed, it is important to understand in what ways the care and support of frail older adults are meeting their needs and to detect any gaps. Identifying these gaps and determining how to engage and support those living with unmet needs should be a priority given the risk and vulnerability associated with frailty [35, 36].
The present study is part of the larger INSPIRE (ImplemeNtation of a community-baSed care Program for home dwelling senIoR citizEns) parent study taking place in one canton, Basel-Landschaft (BL), an area in the North-western part of Switzerland. A cantonal care law enforced in 2018 ensued that older adults living at home will have access to a new information and advice center (IAC) for advice related to care and nursing in old age, as well as an assessment of needs, and either mediation of care or potential nursing home referral [37, 38]. The INSPIRE project aims to develop, implement, and evaluate an integrated care model for these IACs [38]. During the development phase, a contextual analysis was conducted which included a population survey [39] followed by interviews with older adults [40] to create an IAC care model which was suited to local health and social needs and preferences. More information on the parent study can be found elsewhere [38,39,40]. Using a quantitative approach, we investigated the type and frequency of formal health and social care as well as informal care and social support that frail older adults are currently using and their future preferences, and to what extent the older adults perceive their support in place meets their current needs. Subsequently, in the qualitative arm, we aimed to gather a more in-depth understanding of their experience and preferences with their care and support, and explore appearance of integrated care concepts (e.g., presence of a named coordinator or multi-disciplinary care team). Using a mixed methods approach, we unified this data to explore the types of care and support used by home-dwelling frail older adults as well as their experience and future preferences.
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Phase 1: Quantitative
Sample
The current study included a sub-sample of frail older adults from the INSPIRE population survey in the parent study. In the population survey, the Groningen Frailty Indicator (GFI) [43, 44] was used to assess the geriatric risk profile of participants (N = 8786; response rate = 30.7%), as the GFI considers frailty to be a multidimensional construct which includes physical, psychological, social, and cognitive domains [44, 45]. Using this broader definition to measure frailty and determine those at risk of institutionalization (for example) based on their geriatric risk profile implies that this sub-sample represents a group experiencing frailty in more diverse areas than solely biomedical indicators [46]. Regardless of whether participants answered all 15 GFI questions, the quantitative arm of the present study included only those with a GFI score of 4 or more (i.e., considered frail), resulting in a sample of n = 2314 frail older adults.
Variables and measurements
We selected variables from the INSPIRE population survey [39] (Additional file 1). Except for sample characteristics, variables are presented according to adapted domains (i.e., Individual with multi-morbidity and their environment, Workforce, and Leadership and governance) and concepts (e.g., needs, social network, use of community services, use of transportation services, informal caregiver support, use of health care professionals, use of care organizations, named coordinator, multi-disciplinary team, individualized care planning) of the SELFIE framework, to stay consistent with the organization of results [28]. The SELFIE (Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, Financing, and performancE) framework has been commonly used in European studies to support development, description, implementation and evaluation of integrated care initiatives, and emphasizes important concepts within integrated care, such as presence of a care coordinator [28].
Socio-demographic information and frailty status
Participants’ socio-demographic characteristics were summarized, including age (year of birth), gender, education level, monthly household income, and household members. Additionally, the geriatric risk profile was determined by the individual’s GFI score. The GFI is a reliable and valid 15-item instrument for frailty screening [43,44,45]. A GFI score of greater than four indicates frailty [44].
Individual with multi-morbidity and their environment
Needs (met/unmet): one investigator-designed question with a “yes/no” option measured whether their support received in everyday life meets their needs.
Social network: availability of social support was assessed using the validated German version of the Brief Social Support Scale (BS6) [47]. There are six items to be rated on a 4-point Likert scale, divided by tangible support (e.g., how often is there someone available to prepare your meals if you are unable to do it yourself) and emotional-informational support (e.g., how often is there someone available who understands your problems). Responses were dichotomized (“never” versus “sometimes”, “often”, and “always”) for the analysis.
Use of community services (formal care) was measured through two questions to capture the types of community services (e.g., meal services, transportation services) needed or used in 2018 and services which would be considered if they become more in need of help in the future.
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Workforce domain
Informal caregiver support in everyday life and preferences for future (if they become more in need of help) was captured through two questions designed by the research team which contained different options for sources of support (i.e., relatives of the same age [e.g., spouse]; younger family members; friends and neighbours; or none).
Whether participants were caregivers themselves was determined through one binary question designed by the research team which asked if they looked after, cared for or supported another person (i.e., children, older persons, or someone with a disability).
Use of health care professionals (formal care) in 2018 was measured using three questions which examined frequency of General Practitioner (GP) visits, specialist visits, and an open-ended question for other medical services used.
Use of care organizations (formal care) was measured through two questions to capture the current care organizations providing regular support in everyday life and care organizations preferred in future if they become more in need.
Statistical methods
Consistent with the INSPIRE population survey in the parent study [39], selected socio-demographic variables were descriptively analysed and reported as frequencies, percentages, medians, and interquartile range (IQR) to describe the sample of survey participants. We also included a description of household members to support interpretation of care use. Frequencies were reported for dichotomized or categorical survey variables. However, many of the survey questions were set-up to allow each participant to give multiple responses per question. For these questions with multiple response options, the proportion of respondents accounted for by each item were reported. When respondents provided inconsistent answers (i.e., provided a contradictory answer to the question), we excluded them from analysis within the respective survey domain (Additional file 2).
To analyze three of the survey variables, use of community services, informal caregiver support, and care organizations, we first dichotomized the responses to indicate whether each type of support was currently used or not. We then selected only those who provided an answer for both current use and future preferences in order to compare them, excluding those who did not provide an answer for future preferences. Following principles of a sensitivity analysis, we analyzed our data with and without the excluded individuals to confirm that the results were not impacted. Finally, we separately analyzed those who did not currently use the support, but provided data on future preferences, to further inform future predictions.
Missing data was assumed to be missing at random for all questions (except formal care services) and therefore excluded, but amount of missing data was reported throughout.
A brief sensitivity analysis was performed to address how we calculated the GFI score. We calculated the total GFI score by summing each score of “0” or “1” to the 15 items that comprise the GFI. We categorized anyone with a GFI score greater than or equal to four as frail, regardless of how many total GFI-items they answered, to avoid losing power. We analyzed to see if the results would have been different had we required an answer to all 15 questions, but values remained consistent.
Analyses were performed using IBM SPSS Statistics (Version 26).
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Phase 2: Qualitative
Sample
Using purposive sampling, semi-structured interviews were conducted in the INSPIRE parent study between September 2020 and August 2021 with eight home-dwelling older adults with multimorbidity, defined as the occurrence of two or more chronic diseases [48]. Furthermore, individuals had to be using health services provided by at least two care organizations, or three or more different health services provided by one organization [40]. In the current study, we included interview data from individuals who indicated frailty based on the PRISMA-7 frailty screening assessment [49] and considered the sample size to be adequate based on information power (n = 7), i.e., whether the sample size was sufficient to contribute knowledge in response to the research question, determined by aspects such as the study aim, sample specificity and whether the study is theoretically-informed [50]. The PRISMA-7 includes seven dichotomous questions, and was completed by the researchers according to the participants’ responses and interactions with them during the interviews, as well as the demographic data collected. The lead author (OY) screened the original interview participants’ anonymous PRISMA-7 scores to identify eligible participants (i.e., scoring ≥3 which is indicative of frailty [49]) for the present study. The PRISMA-7 assessment instead of the GFI was used in the interviews to reduce burden on the participants, given the majority of the information collected through the PRISMA-7 was easily observable by the researchers or already embedded within the interview questions.
Instruments
The interview guide (see Additional file 3) was developed in the parent study to build on the INSPIRE population survey findings and further explore older adults’ health and social needs and experience of their care and support. We incorporated additional concepts which are key to integrated care (e.g., informal caregiver support, a named coordinator) from literature such as the SELFIE framework into the interview guide, to get a sense of the presence of these concepts in their current care [28].
Analysis
Before the anonymous interview transcripts were translated into English (as the lead author was not fluent in German), the original German transcripts were cleaned from all filler words and Swiss-German nuances were translated to High-German. Validation of content was performed only for discrepancies between the two German dialects, or between the German and English languages. Applied Thematic Analysis was then used to analyse the transcripts [51]. First, the lead author (OY) created a research map to establish structural codes based on the domains in the interview guide. Next, the lead author performed structural coding on the data using NVivo [52], to organize the data by the structural codes (i.e., according to the concepts from the interview guide or discussion of the concept during the interview), which led to a coding report for each structural code [53]. Thereafter, content coding was performed, to analyse the data within each structural coding report [53]. A separate codebook was created for each structural code to contain all content codes. For each structural coding report, a memo was written to describe the content codes and help to derive themes.
Techniques to enhance trustworthiness
Given the nature of this study, we considered the following techniques to enhance trustworthiness [54].
Context
The original interviewer made the context of participants’ responses fully available through providing access to the transcripts and a thorough written description of the interview setting. Consistent with participants’ preferences, most interviews took place in the individual homes of the participants in Canton BL, with one interview taking place at a nursing home during a short stay. Some participants had a family member present during the interview, while others were alone. In most cases, there were two INSPIRE interviewers present.
