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Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review

Abstract

Background

As the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs?

Methods

We conducted a scoping review guided by a refinement of the Arksey & O’Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched 7 electronic databases. The data were summarized using thematic analysis.

Results

Thirty-six studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; 5 studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults’ complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC.

Conclusion

The review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults’ needs were their level of education/health literacy and their socioeconomic status.

Peer Review reports

Background

Many older adults live with multiple chronic conditions (MCC), also known as multimorbidity [1, 2]. While there are several definitions of multimorbidity, it is defined in this review as the presence of two or more chronic medical conditions which may negatively impact an individual’s daily living, particularly with higher numbers of coexisting conditions [3]. Older adults living with MCC often rely on the support of informal caregivers to help them manage their daily lives [4, 5]. Caregiving for older adults, without the appropriate supports, can negatively affect an individual’s financial, emotional and psychological wellbeing [6].

Factors related to social and structural determinants of health can further worsen the challenges of managing complex health issues for older adults with MCC [7]. This is especially true for older women, ethno cultural minorities, Indigenous persons, persons with cognitive impairment (CI), persons with lower socioeconomic status (SES), or persons living in rural or remote communities [8, 9]. Currently, not enough is known about the needs of older adults with MCC and their caregivers and how different determinants of health influence their needs as most conceptualizations of multimorbidity focus on the biomedical dimensions of MCC [10].

To date, there are syntheses of existing evidence on the spectrum of multimorbidity and implications for care [11]; occurrence, causes and consequences of multimorbidity [12]; tools to assess patient treatment priorities [13]; interventions to improve outcomes for persons with MCC [14]; and a review of chronic care models to reorganize care for patients with MCC [15]. However, to our knowledge, there is no review on the health and social care needs of community-dwelling older adults with MCC and their caregivers. Therefore, a comprehensive review is needed to inform the development of interventions designed to meet the needs, and hence promote the quality of life, of older adults with MCC and their caregivers.

In light of this gap, we undertook a scoping review to summarize the available research studies on the health and social care needs of community-dwelling older adults with MCC and their caregivers. The review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs):

  1. 1)

    What are the health and social care needs of community-dwelling older adults with MCC and their caregivers?

  2. 2)

    How do social and structural determinants of health – such as gender, socioeconomic status, or level of education – impact the health and social care needs?

The scoping review methodology was chosen because it was 1) flexible in that it allowed for the inclusion of qualitative and quantitative studies [16]; 2) unrestrictive, thus allowing for the exploration of widely varied topics such as patient and caregivers needs, as well as determinants of health [16]; 3) a systematic method for summarizing and identifying gaps in existing literature [16]; and 4) citizen engaged because it includes a stakeholder consultation to inform research and subsequently evidence informed interventions [17].

Methods

The protocol for our scoping review has been published [18] but is briefly summarized below. The scoping review methods framework outlined by Arksey and O’Malley [16] and refined by Levac et al. [17], Colquhoun et al. [19] and Daudt et al. [20] was used. The framework includes six steps: 1) identifying the research questions (listed above); 2) identifying relevant literature; 3) study selection; 4) charting the data; 5) collating, summarizing and reporting the results; 6) consulting with key stakeholders and translating knowledge. Below we briefly summarize each step.

To identify relevant literature, two academic health sciences librarians (APA and MG) prepared the search strategy in consultation with the research team. The databases searched include OVID Medline (1946 to 2017, including Epub Ahead of Print, and In Process & Other Non-Indexed Citations), OVID Embase (1947 to 2017), OVID PsycINFO (1806 to 2017), OVID Social Work Abstracts (1968 to 2017), EBSCO CINAHL Plus with Full Text (1981 to 2017), EBSCO AgeLine (1966 to 2017), and Cochrane Central. The search strategies were translated using each database platform’s command language, controlled vocabulary, and appropriate search fields. MeSH terms, EMTREE terms, APA thesauri terms, CINAHL headings, and text words were used for the search concepts of health and social care needs and priorities, Indigenous populations and multimorbidity.

We applied a modified adult age filter to the Medline strategy [21]. This filter was translated and applied to the other databases. The filters were not validated. Language limits were applied to capture English, French, Dutch, and German articles; and the final searches were completed in May 2017. For the full Medline strategy, see Additional file 1: Table S1. Additionally, we searched the reference lists of included studies. Covidence systematic review software was used to facilitate the review (www.covidence.org).

In terms of preparing the co-authors to assist with the review, the two lead PIs (KM and MP) and the librarian held training sessions with the researchers and stakeholders to ensure they understood definitions of health and social care and were familiar with the inclusion and exclusion criteria and how to use Covidence. During this phase we went through titles and abstracts together (n = 20) to ensure they were prepared. Conflicts were decided upon by the two lead PIs, KM and MP. The definition of social care that guided this review was from the WHO world report on Ageing and Health: Social care address the needs associated with performance of the activities of daily living, connection to one’s social networks such as family, friends and community; access to social programs for supports in poverty, unemployment, old age and disability to optimize social protection [7].

Studies were selected through a two-step process using the selection criteria below. First, each of the titles and corresponding abstracts were independently reviewed by two team members. Then, two reviewers independently assessed the relevant full text articles (see Fig. 1 PRISMA flow chart). In cases of disagreement between reviewers, one of the two principal investigators (MP and KM) resolved the conflict.

Fig. 1
figure1

PRISMA 2009 Flow Diagram

The inclusion criteria included:

  • Studies which reported on health and/or social care needs of older adults living with MCC or on health and/or social care needs of caregivers of older adults living with MCC and/or identified needs/areas for improvement.

  • Any type of primary study (quantitative, qualitative or mixed methods); involving community dwelling older adults aged > 55 years; studies that included a wider age range, but the mean/median age was > 55 years; studies which included a sub-group analysis for this population.

In light of the fact that Indigenous persons experience multiple and complex health conditions at younger ages than other populations, we included all literature that focused on persons 55 years of age or older living with MCC, in order to capture relevant literature related to the care needs of ageing Indigenous persons [22].

The exclusion criteria included:

  • Expert opinions, editorials, and materials that did not include original data.

  • Published in other languages than English, French, Dutch and German

A data abstraction form using Microsoft Excel software was created to guide data extraction. Furthermore, codes representing the World Health Organization’s (WHO) definition of structural and social determinants of health [23] were included to map the studies that identified these determinants as important considerations when identifying needs and preferences of older adults with MCC. The data abstraction form was pilot tested and refined by the researchers (KM, MP, JC) to ensure consistency. Two reviewers independently abstracted the relevant information from the studies, with one researcher confirming the information.

During the testing of the data abstraction process it became clear that the studies focused on needs and preferences of Indigenous older adults and how data were collected were conceptually distinct from those studies focusing on groups of non-Indigenous older adults. Thus, considering these differences, it was decided to separate the review results into two papers and results concerning the needs and preferences of Indigenous older adults with MCC will be summarized in a separate paper. Team members who have experience in Indigenous health research took the lead on the other paper (JW, AC).

Data extracted included: details on the study (type of study, aim of study, origin, response rate etc.), study characteristics (study setting), patient and/or caregiver characteristics (age, gender, ethnicity, location, number and types chronic conditions), involvement of caregiver, health and social care needs, and (if categorized) categories/themes used. Since there was substantial heterogeneity among the included studies, the data were summarized using thematic analysis [24]. Using an iterative process, the first author developed descriptive codes, which were grouped together into a smaller number of categories to draw conclusions. The codes were discussed with the entire team until we reached consensus. Once the codes were agreed upon, the codes and their smaller number of categories were shared with a small group of expert qualitative researchers (JP, VD) and they were revised to minimize bias. This process was repeated to find patterns across the three different sub-groups, older adults, caregivers and HCPs. The quality of the research studies was assessed using the Mixed Methods Appraisal Tool (MMAT) [25]. The MMAT allows inclusion of qualitative, quantitative and mixed methods studies with quality criteria relevant to each study design. As we aimed to provide a comprehensive overview of needs, no study was excluded based on the MMAT score alone.

Finally, in accordance with Step 6 of our scoping review framework, we organized a stakeholder consultation meeting on 22 May 2017. We included older adults with MCC (n = 3), caregivers (n = 3), HCPs (n = 3), representatives of provincial organisations (n = 3), and primary care organizations (n = 2) to provide feedback on the findings and to offer suggestions for next steps. For this meeting we presented the results and asked the stakeholders specific questions related to:1) their thoughts, reflection and opinions on the information presented; 2) if there were any unmet health and social care needs, priorities and preferences of older adults with multiple chronic conditions living in the community and their caregivers, that was not highlighted in our presentation; 3) and additional social determinants of health (such as income, social support networks; education; employment/working conditions; gender; and culture) that may have impacted the health and social care needs of older persons with multiple chronic conditions; 4) and their insights about future research ideas to explore in this topic area. Two groups were developed so more sharing could occur and equal representation from both persons living with MCC and their caregivers and HCPs. The groups were facilitated by the two PIs. Notes were taken by two team members, compared, synthesized and then content analyzed. Their comments were summarized and are presented below. Additionally, to ensure we had stakeholder engagement throughout the project, three of the stakeholders who attended this meeting were selected prior to the funding of the research project. In fact one older adult with MCC and one caregiver provided testimonials during the application phase on the importance of this research. They also assisted with reviewing of abstract titles as we provided training and support for them.

Results

The perspectives of older adults, their caregivers, and their HCPs, were considered when identifying needs of older adults with MCC. The following sections highlight the characteristics of the studies, the details of the study participants across all the studies that were reviewed and the thematic analysis of the findings.

Characteristics of included studies

In this review 34,391 abstracts were retrieved and reviewed by two independent reviewers (see Table 1). 428 articles were selected for full text review and 45 were retained. Of these 9 were focused on Indigenous older adults so for this review, a total of 36 articles were included. Thirty studies were qualitative studies [26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55], four were cross-sectional studies [56,57,58,59], one was mixed method study [60] and one was a secondary qualitative data analysis [61] (Table 1). Twenty two studies were conducted in North America [26, 28,29,30, 33, 35, 37, 38, 41, 43, 46,47,48,49,50,51,52, 55, 57,58,59,60], ten in Europe [31, 32, 34, 39, 40, 44, 45, 54, 56, 61] and three in Australia/New Zealand [27, 42, 53].

Table 1 Characteristics of included studies

We sought information from older adults with MCC, their caregivers and health care providers about needs of older adults with MCC and some researchers included more than one perspective in their studies [26, 31, 34, 38, 40,41,42, 44, 46, 50, 53, 60]. Thirty-four studies included participants with MCC [26, 27, 29,30,31,32,33,34,35,36,37,38, 40,41,42,43,44,45,46,47,48,49,50,51,52,53, 55,56,57,58,59,60,61] and the sample size ranged from 8 [60] to 1274 participants [58] with a total of 3058 participants in the studies. Seven studies included caregivers of older adults with MCC [31, 38, 41, 42, 44,45,46] and the sample sizes varied from 8 [42] to 33 [31] with a total of 137 participants. In the twelve studies that included health care providers [26, 28, 31, 34, 38,39,40,41, 46, 50, 54, 60], the sample sizes ranged from 4 [38, 41] to 59 [60] and a total of 201 HCPs participated. Included papers were published between 2003 and 2017.

Characteristics of the study participants

The mean age of older adults ranged from 55 to 64 in four studies [26, 35, 52, 55], 65 to 74 in nine studies [27, 34, 36, 42, 43, 45, 56, 57, 61], and 75 to 84 in twelve studies [30,31,32,33, 37, 38, 40, 41, 44, 46, 51, 60] (see Table 2). Seven studies reported age ranges [29, 47,48,49,50, 53, 59]. Mean age and age ranges of older adults with MCC are presented in Table 1. The percentage of female older adults with MCC ranged from 6% [49] to 100% [51]. Of the 36 studies included in the review, 22 studies included at least 50% females as their study participants [26, 28,29,30, 32, 33, 36, 37, 39, 43, 45, 48, 50,51,52,53, 56,57,58,59,60,61]. Two studies did not report the proportion of female respondents [34, 54].

Table 2 Characteristics of study participants

MCC was determined mostly (24/32 studies) by health care providers, and/or staff assisting them, or the sample was drawn from clinical data bases and disease trajectories [26, 27, 30,31,32, 34,35,36, 38, 40,41,42, 44,45,46,47,48,49,50, 52, 53, 56, 59, 61]. Five studies did not explicitly state how MCC was established for the sample of patients during the recruitment process, although the inclusion criteria mentioned at least two or more conditions and the appropriate age range for older adults [33, 37, 51, 57, 58]. MCC was self- reported by patients in two studies [29, 43]. Frailty was not mentioned as a condition included in the MCCs.

The mean number of chronic conditions ranged from 2 to 4 in six studies [26, 34, 51, 52, 59, 61], from 5 to 7 in ten studies [30, 33, 37, 38, 41, 43, 46, 49, 55, 56], and 8 or more in one study [36]. Three studies reported range of number of chronic conditions [27, 29, 48]. The most reported conditions included hypertension, cardiovascular disease, chronic pain, osteoarthritis, COPD and cancer. Depression and other mental health conditions were also reported. Nineteen studies did not report the mean number of conditions [27,28,29, 31, 32, 35, 39, 40, 42, 44, 45, 47, 48, 50, 53, 54, 57, 58, 60].

Twenty-two studies reported the ethnicity of the study participants [26, 27, 29,30,31,32,33, 35, 37, 41,42,43, 47,48,49, 52, 53, 55, 57,58,59,60]. Most study participants were Caucasian or white, followed by ‘non-Hispanic’, Hispanic, black and South Asian populations. Other ethnicities were also reported in smaller proportions. Fourteen studies did not report ethnicity of the study participants [28, 34, 36, 38,39,40, 44,45,46, 50, 51, 54, 56, 61].

Nineteen of the 36 studies did not report the socio-economic status of the participants [28, 30,31,32, 34, 37,38,39,40, 42,43,44, 46, 47, 50, 54, 57, 60, 61]. Four studies included the employment status [27, 35, 48, 56], with most participants being unemployed. Income levels were reported from study participants belonging to varied socio-economic levels. Varied education levels were reported for study participants. Amongst all studies reporting education levels, most participants ranging from 35 to 70%, had high school education or higher [27, 29, 30, 33, 35, 36, 38, 41, 46, 48, 49, 51, 55, 56, 59], except for one study reporting education levels of high need adults being lower than the general population in the US [58]. Sixteen out of the 36 studies did not report education of the participants [26, 31, 32, 34, 37, 39, 42,43,44,45, 47, 53, 54, 57, 60, 61].

Living situation was reported with patients living with someone or alone. There was a wide variation in patients with MCC living alone, with a spouse and/or with family. Proportion of persons living with a spouse ranged from 13 to 82% [27, 30, 35, 36, 38, 40, 48,49,50,51, 59], while 30 to 50% of participants were living alone [27, 32, 37]. Urban-rural distribution was not reported by most studies, except one mentioning that there were 15% rural participants [48] and another mentioning that 50% of the clinics were rural [47]. No definitions of rurality were given.

The mean age of caregivers ranged from 69 to 71 [31, 38, 41, 46]. Three studies did not report the mean age of caregivers [42, 44, 45]. Eighty-two percent of the caregivers were female. Seventy-two percent were spouses of the older adults while 21% were adult children. In terms of HCPs, 1 study included nurse practitioners [26], physicians were included in 10 studies [26, 28, 31, 34, 38, 40, 41, 46, 50, 54], nurses were included in 4 studies [34, 39, 45, 50], psychologists were included in 1 study [50], pharmacists were included in 1 study [54], social workers in 1 study [50], and occupational therapists were included in 1 study [60]. The HCPs’ experience working with patients with MCC ranged from 4 months [39] to 36 years [34]. More detailed characteristics of the participants are presented in Table 2.

Quality of the included studies

The quality assessment results are presented in Additional file 2: Table S2, available on line. The quality was moderate to good for most studies. We defined good quality as having a yes on all relevant quality criteria (n = 13), moderate as having items with no/can’t tell and the rest yes for relevant criteria (n = 23). There were no studies ranked as poor, which indicated a no on the majority of relevant quality assessment criteria. This rating scale allowed us to compare the different studies of different quality [62]. The rating scale allowed us to rate studies of different quality. Six studies used convenience samples [34, 39, 46, 56, 59, 60]. It was not always clear how the data were analyzed nor who analyzed the data [26, 29, 31, 61]. Also, it was not always clear how findings were influenced by researchers’ interactions with participants [31, 33, 35, 38, 44, 46, 48, 52, 54, 61].

Thematic analysis of the findings

Five themes emerged from the data and there was convergence on most of the key themes between the older adults, the caregiver and the HCPs (Table 3). They included: 1) Need for information; 2) Need for coordination of services and supports; 3) Need for preventive, maintenance and restorative strategies, 4) Need for training to help manage the older adults’ complex conditions, and 5) Need for person-centred approaches. The few discrepancies within the themes will also be discussed.

Table 3 Overview of identified needs

Need for information

The need for access to information was a theme that emerged the most often in the studies included in the review [26, 32, 38, 40, 45, 53, 56, 61]. Older persons with MCC spoke about the need for more information about their medical conditions. Specifically, they addressed the need for HCPs to use less technical terms and jargon [40], thorough explanations of diagnoses by specialists [40], comprehensive explanation of treatment options [40], and the rationale as to why certain medications were prescribed to them [56]. Patients believed that having a greater understanding of their conditions would help them better manage their conditions and gain greater control over their lives and be empowered [61]. However, many felt they did not have enough information for disease self-management [45]. Some older adults found that self-care required for one condition could make self-care for another condition difficult, as the advice was sometimes incompatible [29].

Patients also reported lack of timely information and poor communication between multiple HCPs [38], and often did not feel like they were being heard which led to distrust and feeling powerless [53]. Likewise, caregivers commented on the poor communication between HCPs and older adults, and because of the lack of seamless sharing of information between various team members and specialists, caregivers felt they needed to step in [31]. Because of the lack of information family members found themselves taking on an advocacy role, needing to participate in acquiring medical and service information as well as medical decision making [31].

HCPs also found accessing information about the older adult challenging [38]. Not being able to access the information made care decisions challenging [26]. They realized that the information patients shared with them was often related to their level of health literacy so selective reporting occurred [26]. HCPs also described issues related to access to information between fellow HCPs. Family physicians found that specialists did not thoroughly inform them about diagnoses, and hence family physicians spent a lot of time trying to understand the patient’s condition on their own and then having to explain it to the patient [40].

From some HCPs and older adults’ perspectives, older adults with dementia, mental health conditions and sensory impairments were found to be at higher risk for having needs not met [31, 32, 39]. Older adults with vision impairment indicated that they had additional challenges to accessing information and were dependent on family and friends to read information they received from their HCPs [32]. HCPs also spoke about older adults with mental health issues such as depression, anxiety and phobias experiencing difficulties accessing speciality services [39]. Moreover, HCPs perceived that older adults with dementia required more care such as reminding them about upcoming appointments and longer appointment times [31]. Caregivers for these patients also required more support as HCPs were concerned about caregiver burnout [31].

Need for coordination of services and supports

Most of the participants reported the lack of coordination of services and supports significantly impacted the daily lives of older adults, caregivers and health care providers. The lack of coordination of services ranged from: lack of access to specialists [35, 36]; long wait times for referrals [56]; conflicting appointments [42]; short appointment time with family physicians [47]; referrals to different specialists with conflicting opinions [42]; duplication of investigations [48]; complicated and unresponsive services [44]; and no opportunity to involve multiple providers in a single discussion [55]. As a result, some patients experienced difficulty with symptom management and adhering to treatment recommendations [38]; and settled into a routine that was at odds with their primary physician’s recommendations [52]. Consequently, patients and caregivers became anxious as they were uncertain whether they were making the right choices [58], and they found themselves serving as the expert without the training [55], and felt isolated, frustrated and alone in resolving their issues [30, 58].

Caregivers mentioned that there was a lack of coordinated services in terms of formal support [31], home care services [46] and health maintenance activities [41] available for older adults. Caregivers expressed the preference for having a point person to arrange care [38] and provide continuity. For those caregivers still working, they experienced difficulties managing the care of their family member [38], but they felt they had no other option [31]. Some caregivers found themselves ensuring their family members kept their appointments, took over medication and nutrition management, and were instrumental in ensuring the person maintained their dignity, particularly at the end of life [41]. Taking on this coordinator role was a source of tension between some older adults and their caregivers as they had conflicting ideas about future plans, and how to stay healthy and safe [46].

HCPs [38, 50, 60] also identified the need for better coordinated services and supports and recommended a case coordinator [60]. Physicians identified that older adults with MCC needed to be seen by other specialists such as psychologists, diabetes educators, or mental health specialists and a coordinator could assist with this task [60] because there were often complex pathways to negotiate in order to be seen by these specialists [50]. Also, some family physicians found coordinating with multiple specialists challenging [38]. Fragmented care between specialists, GPs and pharmacists left pharmacists feeling isolated” (Smith et al. 2010).

As found in many of the articles in the review, the lack of coordination of services led to stress for older adults, caregivers and HCPs [31, 38, 44, 46, 48, 55]. Caregivers described that they had experienced their family members being non-compliant because of the complexity they were facing and the high-risk decisions they felt they had to make, which caused them to feel pressured and hopeless [38]. Because systems were so fragmented, many persons with MCC had to repeat their issues to different providers and with this came increasing levels of frustration, as they sought solutions over and over again [48]. Caregivers also became overwhelmed with the complexity and number of chronic conditions their family member had [55], or if their symptoms worsened [31], and they felt burdened by navigating the health care system to obtain services [46], all of which eventually could lead to burnout especially if the family member of older adults refused the help suggested [46]. As Mason [44] pointed out, being a caregiver was not a choice, and they often experienced physical and emotional stress. Bunn and colleagues (2017) noted a discrepancy between HCPs attempts to coordinate care for older adults with dementia and caregivers’ perceptions of these efforts. HCPs perceived they took extra time for older adults and their caregivers, reminding them about their appointments, and preparing for worsening dementia related issues, whilst family members felt more time was required with their HCPs, better coordination was needed as they felt they had to navigate care such as arranging appointments and sharing of information with different HCPs.

Need for preventive, maintenance and restorative strategies

The need to prevent further deterioration in daily living, maintain current levels of function and restore any lost abilities was articulated by older adults, and echoed by caregivers and HCPs in a few of the studies [27, 41, 45, 46, 49]. Most older adults wanted to prevent the aggravation of their health and chronic conditions [41]. They also articulated the need to maintain current capacity to perform activities of daily living [43] but for many, maintaining lifestyles was difficult [45]. A new diagnosis often motivated older adults to modify their health care behaviors and daily routines [49] such as including physical activity into their daily regime and monitoring their diet [27], however this was difficult for some older adults, and took time and effort [45]. In order to accomplish this modification, a behavior change was often required and if support was offered it was helpful for adoption of the new treatment [45]. For some caregivers, their role included motivating their family member to make these changes, but they struggled with how to do this well and it caused a source of tension between the older adult and their caregiver [46]. Naganathan and colleagues (2016) highlighted discrepancies between caregivers and older adults’ future plans on how to stay healthy and remain at home. There was disagreement on how each participant group perceived their independence and how much support was required to live at home. Family physicians were also not sure on how to handle these differences in perceptions as patients and caregivers often refused additional support which raised concerns about remaining safely at home without caregiver burnout resulting as an outcome.

Physicians in a few of the studies knew that their patients lacked the resources to follow prevention recommendations [28]. There was a recognition by HCPs that for some older adults their inability to buy healthy foods, financial restraints to pay for treatments [29], lack of community resources, or being uninsured held many back from participating in prevention [28]. Additionally, physicians also did not receive reimbursement for preventive counselling [28] nor for the longer appointment times required. Family physicians thus aimed to provide guidance by helping with acute exacerbations of conditions and improving symptoms [41]. In addition, they felt their role included emphasizing supportive services, such as home safety so the older adults could maintain function as long as they could, and to prepare both patients and caregivers for worsening of health when the time would come [41]. However, some physicians found some support services lacking such as home care which was essential to maintaining function of older adults [38].

Need for training to help manage the older adults’ complex conditions

A need identified by all three groups was for training to help manage older adults’ complex conditions and to plan for the future. Older adults wanted more education to understand their disease, how to manage adverse outcomes and when offered, they appreciated support groups and self-directed eLearning [42]. They also wanted training on how to use technology [57]. Older adults also wanted HCPs to receive education on how to approach persons with dual sensory impairment to maintain their dignity [57]. Both older adults and caregivers, perceived a need for more education and training on health literacy and their medications [59].

Health care providers commented that polypharmacy was a challenge and that they wanted more training on different pharmacological options [50]. In addition, some physicians felt they lacked clinical confidence dealing with multiple complex issues, as clinical guidelines focused on one single condition leading to polypharmacy [54].

Need for person-centred approaches

The need for more person-centred approaches to service delivery was highlighted in many of the reviewed articles by older adults and their caregivers [31, 33, 40, 48, 53]. Older adults wanted to be seen as a person and not merely as a number [40]. They highlighted the need for patient-centred communication and to be involved in treatment decisions and feel listened to during their interactions with HCPs. Clarke [33] highlighted that the older adults wanted the primary care provider to build a good trusting relationship with them and to have a more person-centred approach to decision making. Older adults wanted to build and maintain connections and relationships with trusted providers and sought to end relationships with providers they did not trust [48]. Many persons felt that they were not being heard, which led to distrust [53] in the relationship and feeling powerless. In only one study reviewed, HCPs did suggest that personalizing care for persons living with dementia was essential [31] and they made sure to see both the patient and caregiver at each appointment. For those physicians who took a person-centred approach, such as, by taking time and listening to patients, there were repercussions, as often a full waiting room of patients were left in the clinic waiting for their appointments [40].

Structural and social determinants of health

Structural and social determinants were examined to identify how they influenced needs of older adults (see Table 4). Of the social and structural determinants of health included in the selected studies, twelve mentioned education which is often a proxy for health literacy concerns [26, 27, 38, 43,44,45, 47, 50,51,52,53, 56, 58], nineteen mentioned access issues [27,28,29, 32, 35, 36, 38, 40, 41, 44,45,46,47, 50, 52, 54, 56,57,58], and fifteen highlighted the impact of socioeconomic status on needs [27,28,29,30, 34, 35, 42, 43, 49,50,51,52,53, 58, 59].

Table 4 Overview of Social and structural determinants of Health impacting health and social care needs in older adults with multiple chronic conditions

In contrast, only three studies cited the link between living circumstances and health and social needs [42, 50, 52]. Some studies mentioned gender [26, 27, 33, 35, 39, 52, 58], ethnicity [30, 42, 48, 50, 53, 58], living situation [27, 31, 35, 39, 42,43,44, 61] and having a social support network [34, 38, 41, 43, 51,52,53, 58, 61] in relation to the health and social care needs for older adults with MCC. In summary, it would appear that socioeconomic status, education and access to the health care system were the predominant structural and social determinants of health that influenced the needs of older adults with MCC. Gender, ethnicity, living situation and social support received less attention.

Stakeholder consultation

All attendees agreed that the identified themes resonated with their experiences. A concern was expressed that few of the studies included older persons over the age of 85 years and emphasized they may have very different needs as they may likely be housebound. Stakeholders pointed out that there needs to be a discussion with patients and caregivers on goals of care in the final years and advanced care planning factoring in advanced age, number of disease conditions, level of function and frailty. They all agreed that access to services and supports were a concern and expressed that older persons with MCC are treated differently in the healthcare system, for example not gaining access to rehabilitation to restore function, which may be suggestive of ageism. Stakeholders felt that the needs of older adults with MCC are much more complex today as compared to several years ago but the level of staff expertise available to them has not kept pace, as care is often provided by unregulated professionals, especially in the community. Stakeholders agreed that caregivers have unique needs and there is little regard to their capacity and remuneration for the work, leading to caregiver stress. Finally, one older adult with MCC strongly advocated that we stop applying band-aid solutions (i.e., improving communication between health care providers and older adults) and instead, focus on re-inventing how care is organized and delivered.

Discussion

Our scoping review highlighted that, of the 36 studies reviewed, there was convergence between needs of older adults from the perspectives of older adults, caregivers and HCPs. The findings from our review revealed that there is a need for access to information, coordination of services and support, strategies for prevention, maintenance and restoration, training and a focus on person-centred approaches. Our findings also suggest that older adults wish to be seen as a person and not merely a collection of disease conditions. Lack of coordination and access to information was prominently highlighted in the studies as well as the stakeholder consultation. The occurrence across various countries and jurisdictions suggests that fragmented services is a prevalent issues warranting further attention.

Specific to structural and social determinants of health, socioeconomic status was one of the main concerns and it was related to older adults’ ability to pay for treatments [59], and the extra financial burden that MCC had on the costs of transportation, medication, and maintaining a healthy lifestyle. Access to services was also a major determinant and therefore, coordinating services within and across sectors and considering the needs of all individuals is essential to optimize care. Educational level and health literacy were also highlighted by HCPs as a barrier to effective management of MCC [55]. Gender and ethnicity were also cited, as non-English speaking backgrounds also led to difficulties in patient education and self -management [42]. Similarly, in a recent review by Northwood [10], gender, education, and the health system were found to be most commonly cited determinants of social determinants of health that impact persons with MCC. Less commonly cited were living situation, however, living alone and being homebound with MCC were also seen as contributing to developing depression, especially in women [39]. Furthermore, social isolation was a concern and Ryan [58] found that there was a relationship between social isolation and multiple unmet needs for older adults with MCC. Finally, living in rural areas may result in scarcity of personal resources, lack of family support, inadequate transportation, health care provider and service shortages, and insufficient healthy food choices and resources which could undermine management of MCC in community dwelling older adults.

To a certain degree the findings from this review are in line with priorities for improving care set out in the WHO framework for integrated, people centred health services [63]. This review adds specific details about how needs can be met including service coordination, making sure information goes from provider to provider, continuity, improved access, and assistance navigating the system. In sum, what is required is a restructuring of the health and social care system to incorporate an integrated care approach. This type of approach would result in a HCP responsible for the care coordination of a care plan that has been developed with the older adult and their caregiver to address their priorities and thus, would be more person-centred and tailored to their needs, goals and priorities. In addition, it would involve the interprofessional team across sectors that share decision-making and communicate to implement the integrated care plan, coordinating the services from different providers and thus reducing the conflicting advice from multiple providers.

Empowering patients and families to self-manage is an important aspect of the care delivery. Promising integrated care models are currently being tested such as the IMPACT clinic [64] and the Guided Care Model [65]. Stakeholder consultation also suggested the presence of discrimination and social injustice due to advanced age. Incorporating patient-centred outcome measures can strengthen governance and accountability to increase the quality of healthcare for older adults with MCC. Finally, there requires a move from hospital-based and curative care to outpatient and preventive care e.g. establishing interprofessional teams and empowering primary care teams through allocating increased healthcare funding to be able to optimize their resources.

In terms of future direction for research, most of the views of the needs of older adults with MCC were consistent with those of their care giver and HCPs and there were few areas of divergence. Practice and research in the future could focus on ensuring the views of older adults and their caregivers are noted by HCPs as this discrepancy most likely influences outcomes. The study by Naganathan et al. (2016) highlighted a key discrepancy about safety concerns at home and supports required to age at home successfully. More research is required to focus on the dignity of risk and how to provide supports to older adults in their homes that are meaningful to them, and may include more social support interventions such as friendly visitor programs versus a focus only on health care needs. In addition, most of the studies in this review were qualitative in nature and thus no relationships between older adults’ needs with MCC and outcomes were found, nor predictors of these needs. Finally despite focusing on health and social care needs of older adults, few social care needs were identified. This gap points to a promising area for future research.

The strengths of the scoping review include a comprehensive search of electronic data bases carried out by expert health sciences librarians, two reviewers for data abstractions and multiple checks of the source articles. Given the large number and range of older adults with varying types of multiple chronic conditions included in our selected studies, our findings are fairly representative of persons living with MCC. In addition, the convergence of our findings from the three perspectives which resonated with the stakeholder group helps to validate the results. Due to the number and heterogeneity of the studies retrieved, decisions were made to focus on only the ‘needs’ of older adults and not their preferences or lived experience.

Conclusion

Consensus was found among the three perspectives in terms of needs of older adults with MCC. Older adults have needs at the individual, home, and system levels. Issues related to access for information and adequate support and services are pervasive for persons with MCC. Structural and social determinants of health are important to consider when addressing needs and solutions for older adults. Future studies should include developing and testing integrated models of care, and determine if access, information and person-centered approaches utilizing intersectoral strategies can be realized.

Abbreviations

CI:

Cognitive Impairment

HCPs:

Health Care Providers

MCC:

Multiple Chronic Conditions

MMAT:

Mixed Methods Appraisal Tool

SES:

Socioeconomic Status

WHO:

World Health Organization

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Funding

This work was supported by the Canadian Institutes of Health Research (CIHR) SPOR-PIHCI Knowledge Synthesis grant (Funding Reference Number NKS – 150581). It was also supported by: the Saskatchewan Health Research Fund and the Toronto Rehabilitation Institute.

Dr. Puts is supported by a CIHR New Investigator Award. Dr. McGilton is supported by the Walter and Maria Schroeder Institute for Brain Innovation & Recovery.

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The datasets used and/or analyzed during the current study are available from the corresponding author upon request. All data and material will be made available.

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All authors have contributed to the manuscript – KM, MP and EC took the lead in the development of the study and in the interpretation of the results, SV, LY, JC, JP, MA, DM, AC, EP, JW, LH, VM and WW assisted with the data abstraction, AA and MG, the librarian scientists contributed to the search, DS, MK contributed to the stakeholder consultation. All authors contributed to the discussion and final review of the manuscript. All authors read and approved the final manuscript.

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Correspondence to Katherine S. McGilton.

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Additional files

Additional file 1:

Table S1. Medline Search. (DOCX 38 kb)

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Table S2. Quality Assessment using the Mixed Methods Appraisal Tool (MMAT) *. (DOCX 33 kb)

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McGilton, K.S., Vellani, S., Yeung, L. et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatr 18, 231 (2018). https://doi.org/10.1186/s12877-018-0925-x

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Keywords

  • Scoping review
  • Multimorbidity
  • Older adults
  • Caregivers
  • Health care providers
  • Needs