“Picturing a Way Forward”: Strategies to Manage the Effects of COVID-19-Related Isolation on Long-Term Care Residents and Their Informal Caregivers

Abstract

Background and Objectives

Strategies to manage the coronavirus disease 2019 (COVID-19) pandemic included widespread use of physical distancing measures. These well-intended strategies adversely affected long-term care (LTC) residents’ socialization and their caregiving arrangements, leading to exacerbation of social isolation and emotional distress for both residents and their caregivers. This study aimed to understand how these measures affected informal caregivers of people living in LTC homes in Ontario. Strategies to increase socialization and promote social connection during and post-COVID-19 were also explored.

Research Design and Methods

This qualitative study used descriptive and photovoice approaches. Of the 9 potential caregivers identified, 6 participated in the study and shared their experiences and photographic reflections in virtual focus group sessions.

Results

Findings highlighted the increased social isolation experienced by people living in LTC and their caregivers during COVID-19. Caregivers reported pronounced declines in residents’ well-being and were frustrated by challenges connecting with their family members during quarantine. Attempts made by LTC homes to maintain social connections, such as window visits and video calls, did not fulfill the social needs of residents and their caregivers.

Discussion and Implications

Findings underscore a need for better social support and resources for both LTC residents and their caregivers going forward to prevent further isolation and disengagement. Even in times of lockdown, LTC homes must implement policies, services, and programs that promote meaningful engagement for older adults and their families.

The coronavirus disease 2019 (COVID-19) pandemic contributed to over 6.87 million deaths worldwide as of March 15, 2023, including 4,609,277 confirmed cases and 51,624 deaths in Canada (WHO, 2023). During the first wave of the pandemic (March through August 2020), residents of long-term care (LTC) accounted for roughly 81% of all reported COVID-19 deaths in Canada compared with an average of 38% in other countries (CIHI, 2020). The disproportionate toll of the COVID-19 virus and its adverse outcomes on LTC residents was a direct result of longstanding structural shortcomings in the LTC sector, such as inadequate funding, chronic understaffing, lack of education/training for health care providers, overcrowding, congregate setting, poor implementation of inspection, and parallel streams (public/private disparities; Canadian Institute for Health Information [CIHI], 2020). Under these conditions, at-risk older adults (60 years and older) are most susceptible to the infection (Wang et al., 2020). Given the cumulative record of infection rate in LTC, various prevention measures were enforced to control its spread including lockdowns, self-isolation, and visitor restrictions (CIHI, 2020). These measures, however, adversely affected residents’ socialization and their caregiving arrangements, leading to exacerbation of social isolation and emotional distress for both residents and their informal caregivers (also known as care partners; Messina et al., 2022).

Effects of Social Isolation

Increasing evidence suggests that social isolation is a pervasive global phenomenon associated with a wide range of adverse health outcomes for older adults and caregivers. Prepandemic evidence showed increased social isolation (up to 50%) among older adults (Holt-Lunstad et al., 2015; Uchino, 2006), which has been linked to depression, cognitive declines (Holt-Lunstad et al., 2015), and all-cause mortality (Beller & Wagner, 2018). Equally alarming, informal (or unpaid and often family) caregivers also experience significant social isolation, loneliness, and social support deficits (Vasileiou et al. 2017), which negatively affect their mental and physical health, and cause financial strain/burden (Brandt et al., 2022). Informal caregivers of older adults (herein referred to as caregivers) support individuals with multimorbidity including physical, emotional, cognitive, and memory problems, often with little to no services (Price et al., 2020). Consequently, caregivers are more likely to have negative psychological, physiological, and social outcomes (e.g., emotional distress, health deterioration, social isolation) and self-report lower levels of general health and well-being and quality of life compared to noncaregivers (Lambert et al., 2017). The literature highlights multiple factors that place individuals at risk for social isolation including reduced social networks, old age (75+), having physical impairments and/or poor health, loss of independence, and living with low income or in poverty (Buffel et al., 2015). In the context of COVID-19, many social activities ceased as a result of the quarantine and social distancing causing LTC residents and their caregivers, the majority are older adults themselves, to become even more secluded (Hajek et al., 2021).

Undoubtedly, the COVID-19 crisis has increased the risk for social isolation, loneliness, psychological stress, and other adverse health problems among caregivers and has created barriers to their access to health care services and treatment of underlying conditions (United Nations [UN], 2020). A 2021 Canadian study (Hindmarch et al., 2021) reported high levels of social isolation (66%), strain (63%), and reduced quality of life (57%) among caregivers of people living with dementia since the start of the pandemic. Likewise, in a sample of 2,287 caregivers in English-speaking countries (i.e., United Kingdom, Ireland, United States, New Zealand), over 40% of caregivers reported an increase in social isolation, while 13.5% reported a significant change in social isolation during the pandemic (Grycuk et al., 2022). Additionally, a 2021 systematic review of cross-sectional and longitudinal studies from North America and Europe showed an association between caregivers of older adults and risk of loneliness among caregivers, linked to depression and dissatisfaction with social interactions (Hajek et al., 2021). In a sequential mixed-methods study, Bristol and colleagues (2021) examined the effect of the COVID-19 pandemic on family caregivers’ social connections and found that the majority of caregivers (83%) in the United States experienced increased stress and feelings of loneliness (77%) during the pandemic. Emerging evidence from several countries suggests that caregivers are growing increasingly socially isolated since the pandemic—most of which has been attributed to lockdown measures (Hajek et al., 2021; Messina et al., 2022).

Essential Role of Caregivers in Combating Isolation

Informal caregivers (also known as care partners) are essential in supporting activities of daily living and complex health needs of older adults even many who are living in LTC (Hindmarch et al., 2021). Caregivers play a critical role in supporting disease management and coordinating and advocating for the care of LTC residents. In addition to supporting physical care, the vast majority of emotional support and companionship is provided by caregivers (Statistics Canada, 2013). Many caregivers derive positive outcomes from caregiving such as sense of fulfillment, satisfaction, and social support (Buffel et al., 2015; WHO, 2020). Caregivers have been shown to reduce increased pressure on social and health care systems, including lessening staff burden and minimizing infection, hospitalization, and resident mortality (Hindmarch et al., 2021).

At the beginning of the COVID-19 pandemic, however, LTC homes across Canada implemented multiple policies in attempts to mitigate the spread of the virus that restricted nonessential visitors (National Institute on Ageing, 2020). At the national level, evolving guidelines have been set by the Government of Canada to inform and direct operations within LTC homes throughout the pandemic (Government of Canada, 2021). Specific policies and COVID-19 responses in the LTC sector were implemented at the provincial level, however, with some degree of variation in restrictions across Canadian provinces (CIHI, 2021; Graham & Hosseini, 2022). These lockdown policies made it difficult for caregivers, who possess necessary skills, knowledge, and competence, to support their relatives. As the rates of infection rose, many LTC homes could not meet the public health guidelines set forth by the Canadian government and therefore continued with the evolving visitation restrictions (Liu et al., 2020). In mid-March of 2020, there was a strict ban on visitors including family caregivers mandated in LTC homes in Ontario. In addition, group activities and communal dining were canceled, and residents were prohibited from leaving the LTC home property (Stall et al., 2021). Due to growing public scrutiny, visitors were, in some cases, offered virtual and/or outdoor visitations from June to August 2020 until residents were allowed to designate up to two “essential caregivers” (Public Health Agency of Canada, 2020). While the initial lockdown policies in LTC homes were well-intended to control the spread of the virus, the separation surrounding visitor access may have invertedly caused significant emotional harm and exaggerated rates of loneliness and social isolation among both residents and caregivers (Mitchell et al., 2022). In many cases, residents experienced “confinement syndrome,” which led to intense anxiety and lack of stimulation. They were also overprescribed psychoactive medications, which were already being prescribed frequently in LTC prior to the pandemic (Stall et al., 2021).

Maintaining Social Connections

Consistent social support and opportunities to maintain social connectedness are critical to promoting positive physical and emotional health and well-being (Parker et al., 2019). Meaningful social relationships and activities have been shown to improve older adults’ cognitive function and increase independence and overall longevity (Uchino, 2006). Studies (Parker et al., 2019; Robinson et al., 2012) suggest that social support fosters engagement in self-care practices, promotes caregiver health, and mitigates the increasing social isolation experienced by caregivers. Proponents of “caregiving identity theory” have suggested that caregiving role—and their ability to perform that role—comprises a critical aspect of their identity and sense of self (Montgomery et al., 2016). If significant shifts in the caregiving relationship occur, caregivers can experience identity discrepancies—a major source of stress to those providing care (Montgomery & Kosloski, 2013), which could theoretically compound with risks of isolation and loneliness to further harm the caregiver’s overall social health.

To date, little is known about how the COVID-19 visitation restrictions in LTC homes have affected informal caregivers of people living in LTC homes during this interruption in their role and the potential impact of the isolation on their mental health. Most pandemic-related literature has focused on the experiences of formal caregivers (e.g., health care providers) and caregiving in the community contexts and not LTC. There is a need for more knowledge of the experience of caregivers during the COVID-19 to understand their unique needs and vulnerabilities, empower them, learn of the resources they require, and prevent possible long-term consequences for this group in similar crises and future pandemics. To address this need, the present study aims to: (1) merge narratives/stories with photos to better understand how the obligatory physical and social distancing affected caregivers’ ability to care for their family members in LTC homes during the initial phases of quarantine; and (2) explore strategies for increasing socialization and maintaining social connections among residents and caregivers.

Method

Research Design

An interpretive description (ID) design along with the photovoice method was applied to address the study aims. ID is founded on the understanding that reality is subjective, complex, constructed, and contextual (Thorne, 2016). As such, this inductive analytic approach was chosen for the ability to generate understanding of caregivers’ complex experiences of navigating the care of their family member during the pandemic and acquire knowledge that could inform and improve care practices (Thorne, 2016). Additionally, the photovoice method was chosen because it gives caregivers time and creative ways to grapple with challenging concepts as it relates to caregiving and the pandemic (Wang & Burris, 1997). As a participatory research method, photovoice empowers participants by enabling them to develop their own voice and stories around their experiences. See Supplementary Material section for more details about the research methods.

Setting

This study was conducted in a virtual setting including the recruitment of caregivers, with the support of various LTC partners and nonprofit organizations in Southwestern Ontario, Canada, that advocate for and offer resources to individuals with family members and friends in LTC.

Sample and Recruitment

Recruitment began following ethics approval from the local research ethics board (HiREB, #13276). Criterion sampling, a type of purposive sampling, was used to identify a sample of potential participants based on preestablished criteria, as this technique allows the selection of participants who are able to describe their rich experience (Patton, 2015). The preestablished inclusion criteria were informal caregivers 18 years or older (from all demographics background), caring for an older adult living in Ontario LTC, able to communicate and understand English, have no visual or fine motor limitations that would preclude using a tablet camera, and able to provide informed consent. A recruitment e-mail including digital brochures was sent to administrators of the local family and LTC organizations, agencies, and senior centers across Ontario in rural and urban communities for distributed and posters were shared widely through social media platforms (e.g., Twitter). All recruitment materials were written in English using plain language (see Study Protocol for additional information; Boamah, Dal Bello-Haas, et al., 2021).

Data Collection

The study took place between September and December 2021. Data collection and analysis were guided by Wang and Burris’s (1997) three-phase photovoice process: (1) selection of photographs by participants for discussion; (2) participants contextualizing and describing events/images in their own “voice”; and (3) codifying issues and themes arising from the discussion. A prefocus group meeting was held to introduce participants to photovoice methods including ethics of photography in public spaces, and how to use a camera to capture photos (see Boamah et al., 2022; Teti, 2019). All participants were provided with written information about the study and had the opportunity to ask questions and were free to withdraw from the study at any time. Prior to starting data collection, participants provided verbal and written informed consent and we reiterated throughout the process that participation was voluntary, and that information shared would remain confidential.

In the first phase of the photovoice process, participants were asked to reflect on their daily lives and to take photographs of situations, persons, or anything else which they considered meaningful to their experiences during the pandemic. The second phase involved focus group session where caregivers were invited to share their stories through photographs and communicate their experiences using Zoom videoconferencing software, which lasted for approximately 60 min. The focus group session was audiotaped with the prior consent of the participants. As a token of appreciation, participants were mailed a $30 gift card.

Data Analysis

Data were transcribed verbatim and analyzed for thematic content, using NVivo qualitative software (QSR International, 2018). In accordance with Wang and Burris’s three-phase process (codifying issues and themes arising from the discussion), and ID (Thorne, 2016), the data analysis progressed inductively using a constant comparison approach, which included the researchers avoiding premature coding and instead, asked what the data were telling us and what we were learning. This included repeated immersion in the data prior to coding (Thorne, 2016) and looking for similarities and variabilities within the data.

Rigour and Trustworthiness

Multiple strategies were used to uphold Lincoln and Guba’s (1985) trustworthiness criteria (e.g., credibility, transferability, dependability, and confirmability) in qualitative research. The researchers stayed true to the “voices” of participants by quoting their words verbatim, from data collection through data analysis and adhering to the following principles: prolonged engagement (research team members had clinical expertise in LTC work); reflexivity (team bias was mediated through reflection of clinical experiences with the population being studied; Lincoln & Guba, 1985); and peer debriefing (transcripts were reviewed twice against the recordings and analyzed by multiple team members to ensure the credibility and dependability of the data). Investigator triangulation was used to promote credibility of findings by seeking feedback from all members of the research team who held expertise in LTC, or in caregiver, social inclusion/isolation, older adult, and dementia care research. Investigator triangulation also facilitated the validation of data. Well-described and fulsome descriptions of the setting and sample of the study were provided for relevancy of findings to other contexts (Lincoln & Guba, 1985). Prior to initiating the study, the research team used logical processes by completing a comprehensive review of the existing literature to highlight the gaps in the literature.

Results

A total of six caregivers participated in the study. Most participants were female (83.3%) and lived in Ontario, Canada (83.3%). All caregivers in this study were supporting their parents in LTC for a mean length of 2.5 years (range = 1–5.5 years). Four main themes emerged based on a systematic analysis of the participants’ photographs and their descriptions of each photograph. The themes are: (1) seeing a decline in residents’ mental health; (2) feeling frustration in connecting with residents; (3) receiving mixed messages from LTC home; and (4) forging peer support groups. In this study, caregivers often referred to their family members/care recipients as “loved ones”; therefore, both terms will be used interchangeably throughout this paper.

Seeing Decline in Residents’ Mental Health

This theme is related to the loneliness and isolation that caregivers felt their family members/loved ones were experiencing in the LTC homes and the resultant toll on their mental health. Caregivers perceived that the lack of socialization due to pauses in social programming and recreational therapy contributed to an overall decline in residents’ mental health and emotional well-being (see Figure 1). One caregiver explained in the following statement:

“In the last year and a half, I have noticed the most decline, not just in my mother, but in every resident with what transpired with the pandemic and the cutting of all socialization and rec opportunities, which I think was huge. (P-02)” “… I could see that she was getting more and more depressed. And so that was really, really hard to deal with.” (P-06)

Another caregiver recounted an incident where she noticed significant decline in her mother’s general well-being as there were limited staff in the LTC home who can fluently engage her mother in conversations in French, her native tongue. She stated: “… the staff who is looking after her is francophone (French Canadian) and she is proudly wearing her ‘Je parle français [I speak French]’ pin …” (P-04). A staff member wearing a pin that identifies her as a French speaker was perceived by the caregiver as important to providing stimulation and holistic care to French-speaking residents (see Figure 1).

Some caregivers who moved their loved ones into LTC homes during the pandemic perceived that they were stressed, depressed, and in emotional turmoil as caregivers could not visit during the transition period. Residents who lived in LTC before the pandemic were also perceived to have mental and physical decline due to limited opportunities for socialization such as recreational programs. Furthermore, caregivers often reported that they experienced increased distress and that their overall health declined throughout COVID-19. They attributed this to the burden of watching their loved one/family member’s mental and physical health decline and feeling powerless to intervene. Caregivers also reported that they had little input in decision making and opportunities to collaborate on how care should be delivered for residents. One participant stated, “… it [the lockdown] was horrendous because she [mother] was such an emotional mess, and I was an emotional mess and so because of the pandemic I couldn’t help with her transition [to the LTC]” (P-05). Even once lockdown eased and restrictions were lifted, there were still some effects of the pandemic on residents. One caregiver shared a photo of her mother having supper alone in her room with the TV on as she no longer wished to eat in the dining room. This is concerning because it was out of the norm for the resident who enjoyed eating in the dining room with other residents prior to the pandemic. Her daughter expressed that the growing fears of contracting the virus and lack of socialization even in group settings were taking a toll on her mother’s mental health (see Figure 2), by saying:

They’re no longer on lockdowns but for some reason she’s conditioned, she doesn’t want to go to the dining room, so it breaks my heart that every time that I try, and I go. I think the staff try now because they know. (P-03)

The sentiment expressed in the quote above was shared among all the participants in this study. Caregivers recognized the need for their loved ones to socialize with other residents during communal events such as mealtimes, but these types of gatherings were not condoned due to physical distancing mandates. The lockdowns and isolation protocols however became a new normal for residents, which exacerbated their risks and experiences of social isolation.

Feelings of Frustration in Connecting With Residents

Frustration was the most commonly recurring theme. Caregivers expressed a deep sense of frustration in not being able to freely connect with residents during the pandemic. Many caregivers shared photos that they felt portrayed frustration in following strict screening processes and policies for visiting their loved ones/family members. Caregivers claimed that rather than valuing them as essential part of the care team and making it easier for them to visit, there were many obstacles put in place to limit their ability to care for their loved ones. Mandated use of personal protective equipment (PPE) also affected the quality of caregivers’ socialization with their family members (see Figure 3), which was detrimental to their relationships, as one caregiver stated:

When I had a mask and a shield and gown, gloves, and everything. And she’d [mother] be looking at me like why are you dressed like that or why can’t you come closer so I can see you or hear you … it’s hard. (P-05)

COVID rules on isolation and visitation regulations were constantly changing and sometimes lacked clear/practical direction. This uncertainty was perceived to increase frustration in caregivers. In particular, some caregivers expressed that complex rules were difficult to explain to residents. In their experiences, residents with dementia had difficulty understanding why distancing needed to occur or why their family caregiver could not help them move in their wheelchair, for example. A caregiver explained:

I just felt with the COVID rules, there was no clarity … You never knew what was going on. I felt like I was just going forward but, there was no real clear directions … I am supposed to be six feet apart from her which is virtually impossible because how do I wheel her? I found that, it’s just hard. So hard for my mom to understand and she now has dementia and honestly, to be honest with you, it’s hard for me to understand. (P-06)

Another participant expressed the same sense of frustration by stating:

I think of this one [photo—Figure 4] … this was the distance that I had to stay away from her [mom]. So, imagine that was her wheelchair instead of a rocking chair. I couldn’t hold her hand, I couldn’t brush her hair, I couldn’t do anything that—any sort of touch, in the very beginning especially, I was in full hazmat gear when I would go and see her. (P-05)

Caregivers experienced internal conflict in following rules that did not make sense to them or their loved ones. Complying with physical distancing rules was perceived as being less person-centered toward loved ones and negatively affected relationships. Caregivers expressed that LTC staff were more concerned of the potential that they could be carrying the COVID-19 virus rather than the benefits of their visits for residents.

Receiving Mixed Messages From LTC Home

This theme summarizes the emotions and mixed feelings caregivers had about strategies proposed by LTC homes to support and maintain social connections. LTC homes implemented some strategies to ensure that caregivers had opportunities to socialize with their loved ones, including window visits, outdoor visits, and video calls. Figure 5 shows a visit between a caregiver and their loved one in LTC orchestrated through a fence. Caregivers had mixed feelings about these temporary solutions as some were unfamiliar with using videoconferencing and were not offered training or assistance in using technology by the LTC homes. Others found the lack of physical touch as a major barrier to connecting with their family members. There seemed to be a disregard for the contributions that familial social connections and physical touch have on the well-being of both caregivers and residents, as the quotes below indicate:

It was heartbreaking to see a photo of my dad visiting my mother on a rainy day. They were inside a cubicle entrance and there was a plexiglass between them. They are separated, they are married 60 years, but on the other side, there’s a staff member, accompanying her, playing in her hair and my dad can’t do that. (P-04)

I think video calls can replace, but also with the dementia, most people can’t see the difference between video calls and in-person. I’m in a support group for caregivers and one person arranged a video call with other people and a big screen and her mother was trying to give like candies or something to people on the screen. (P-01)

When in-person visits were permitted, masking was still required. For some residents with hearing impairments (e.g., loss or hard of hearing), masking affected their ability to read lips and therefore limited their opportunities for social engagement. One caregiver stated:

My daughter just kind of said it’s so frustrating because we taught [my mom] sort of how to read lips when her hearing declined, so you can’t keep pulling your mask down, but again there’s cameras everywhere and if they see you pulling your mask down, they bring you in and say you know that’s really not safe. And I say, ‘I know I know’. (P-05)

This was a common experience shared among all the participants. Caregivers recognized the importance of using various evidence-based strategies to support communication among older adults with sensory impairments. The rules put in place during the pandemic however had no leniency (or were not able to accommodate) toward enhancing the quality of conversations with residents with sensory impairments.

Forging Peer Support Groups

Engagement in meaningful peer support was discussed as a way for caregivers to maintain social interaction with others. Caregivers expressed the need for more social support especially during the pandemic. The type of support they sought was separate and different from the support of other family members which sometimes led to further stress and conflict. They were seeking to connect with and learn from other caregivers with similar experiences and situation. They looked for opportunities to connect with local organizations and attend webinars. Caregivers perceived that other family members were not always the best support and that the local and national nonprofit organizations (e.g., Family Council Ontario) were a good resource during the pandemic, as one caregiver explained:

I found that I needed some extra support because my siblings were so uncooperative and that was really difficult for me. I kept trying to reach out and include them. Trying to get them to do zoom calls and Facetime. The [non-profit organization] was really helpful for having somebody who I could talk to about coming to terms with that. (P-05)

One beneficial change that occurred during the pandemic was the virtual delivery of support group programs which allowed caregivers to join conveniently from home. The pandemic-related restrictions therefore led to helpful opportunities for social engagement that would be useful also in nonpandemic times. One caregiver expanded on it in the following quote:

Um, I think shortly after the pandemic, the [City 1] [non-profit organization] reached out to me to join a virtual support group once a month. And ever since, I’ve been with them every month which has been great support. And they used to do it in person, and I just didn’t want to do it after work. I used to work in [City 1], and I lived in [City 2], I just didn’t want to spend extra time in [City 2]. (P-01)

The pandemic led to a shift in support programs being delivered virtually. This was a good opportunity for caregivers who were currently working to attend educational and supportive events. Having such events online facilitated attendance by caregivers and reduced the need to commute.

Discussion and Implications

This study is the first photovoice inquiry conducted to address social isolation among informal caregivers (or care partners) during the COVID-19 pandemic. Such a creative and innovate approach was well-suited to exploring caregivers’ experiences in depth in a way that would be difficult to achieve using a traditional qualitative method (Wang & Burris, 1997). Findings generated from the original perspectives of caregivers have expanded our understanding of social isolation and prompted to barriers and challenges that need to be addressed.

Study findings were presented in four overarching themes. Specifically, caregivers expressed feelings of frustration tied to ever-shifting LTC policies, identified discernible decline and distress linked to physical distancing, and felt lasting effects of these policies and circumstances even once policies were lifted and/or loosened. This frustration and stress could be, in part, explained by caregiver identity theory and the disruption that participants experienced in their caregiving identity and relationship. Caregivers’ identities, which are shaped by social norms and expectations, guide caregiver behavior and ultimately caregivers’ assessments of themselves as carers (Montgomery et al., 2016). Lockdown policies, as described by caregivers, contributed to momentous barriers in their ability to provide care to their loved one, ultimately contributing to an “identity discrepancy” and stress (Montgomery & Kosloski, 2013). Caregivers also shared conflicted efforts to better connect them with their family members/friends in LTC homes. In some regard, they were happy to see their loved ones, when possible, but at the same time, they experienced friction and barriers linked to accessibility when attempting to do so. Once again, caregivers experienced stress linked to a discrepancy between their expectations and identities (Montgomery & Kosloski, 2013) as a carer and their actual ability to be an essential caregiver. As a result, participants often sought support from other caregivers or agencies. Altogether these themes build upon emerging literature on the challenges faced by caregivers and LTC residents during COVID-19 (Hindmarch et al., 2021; Mitchell et al., 2022) and highlight the need for enhanced support and consideration for the social well-being of both caregivers and LTC residents going forward.

In alignment with existing literature, several participants described their loved ones in LTC as sad, in distress, and depressed, and that their overall health declined during this time, effects which have also been documented in emerging research (LeVasseur, 2021). Furthermore, caregivers reported that their own social well-being was affected because of the challenges and barriers to visiting residents. This finding also builds upon existing literature documenting the reduced quality of life and increased social isolation experienced by caregivers with loved ones in LTC during COVID-19 (Hindmarch et al., 2021). These impacts are noteworthy and indicate that while COVID-19 and related policies within LTC homes served to minimize the spread of infection, the potentially deleterious effects of reduced social engagement at times extended beyond the institutions and affected caregivers, as well. In the initial phases of the pandemic, infection control measures were prioritized over social well-being and mental health of residents because COVID-19 symptoms were seen much more quickly compared to the emotional and mental harms of social isolation which are more gradual, but can lead to inordinate suffering, and physical and mental decline and possibly premature mortality (Beller & Wagner, 2018; Hindmarch et al., 2021; Holt-Lunstad et al., 2015). Despite the importance of family caregivers in supporting the physical, emotional, and psychological needs of residents, they were not initially considered essential part of the care team and were often portrayed as “visitors” and positioned as “outsiders” in the policies being implemented in LTC. However, with the rise in social isolation since the pandemic, it is imperative that LTC homes adopt a more inclusive, family-centered approach to care whereby caregivers are seen as valuable members of the care team.

Since instituting physical distancing policies and visiting restrictions and beyond, many LTC homes have encouraged virtual engagement between caregivers and LTC residents as a result of government guidelines (see Ministry of Long-Term Care, 2020, for example). Participants in this study reported engaging in virtual visits as an alternative to in-person visits (when feasible), although experienced barriers to meaningful and reliable connection through virtual means. For instance, while videoconferencing and video-calling options are often lauded for their ability to safely maintain connection during a pandemic, many caregivers and LTC residents feel that virtual visiting cannot fully replace face-to-face contact (Mitchell et al., 2022). Indeed, a recent study of LTC stakeholders (e.g., residents, family members, health care workers) found that virtual visits lacked “emotional value” for participants (Saad et al., 2022), supporting our finding that video calling should not be used in place of in-person visiting or physical touch for some LTC residents.

Previous research has indicated that family caregivers can experience immense burden (Adelman et al., 2014) and isolation linked to their roles as carers, and that caregiver supports—especially when group-based—have the potential to positively affect caregivers (Lopez-Hartmann et al., 2012). Particularly during the COVID-19 pandemic, caregivers have benefited greatly from the accessibility of virtual resources provided through community agencies and other organizations, further underscoring the value of communication technologies and web-based services for information access. This finding offers contrast to the limitations experienced during virtual visiting and suggests that virtual connection is valued by caregivers when they can connect with other caregivers or service agencies. While caregivers in this study reported frustrations with the use of video calling as an alternative to in-person visits, they also noted that they benefited from digital caregiving resources and supports, suggesting the need for LTC homes to invest in digital resources that will enable effective communication between residents and their caregivers. The webinars, support groups, and other information accessed by caregivers during the pandemic served to alleviate stressors and isolation linked to visitation policies and other COVID-19 guidelines.

Our findings also highlight the additional challenges and barriers to engagement and social well-being for certain subgroups of LTC residents and their caregivers. Specifically, caregivers in this study articulated specific challenges for their family members with dementia. The ever-changing policies regarding PPE, visits, and social programming proved difficult to navigate for some LTC residents with dementia. Likewise, several participants reported significant accessibility barriers when attempting to engage in virtual visits. This finding aligns with barriers and challenges identified in recent literature and underscores the need for improved accessibility (Dupuis-Blanchard et al., 2021). Moreover, our findings indicate that certain COVID-19 policies, namely masking requirements, challenged LTC residents with hearing impairments in their ability to read lips and effectively communicate with staff and other residents. This challenge has been noted in other recent literature (Ickert et al., 2021; Trecca et al., 2020). These findings indicate a possible compounding disadvantage for certain subgroups as previous research has found that LTC residents with sensory deficits and/or cognitive impairments may have already experienced heightened risk of social isolation in LTC settings before the COVID-19 pandemic began (Boamah, Weldrick, et al., 2021). It is therefore imperative that future practices consider how to best support these subgroups and their caregivers.

Strengths and Limitations

The utilization of an innovative qualitative design helped to capture the voices of caregivers, a group who have played a critical role in supporting LTC residents both before and during the pandemic. The study builds upon emerging evidence to highlight needs, perspectives, and vulnerabilities of caregivers during this time, using a cutting-edge research methodology, such as photovoice. Using photovoice in this study gave voice to participants, stimulated reflections, and in-depth exploration of perspectives and experiences of caregivers, beyond what could have been captured by words alone or in a simple qualitative study. The combined use of visual data (the photo) merged with group sessions (the voice) enhances the inclusion of vulnerable persons/groups who might have difficulties in expressing themselves verbally (Wang & Burris, 1997). Lastly, this method illustrates the “complementary rather than competing values of expert and empirical knowledge” (Roe & Davidson, 2005, p. 430).

While a sample of 5–10 participants is considered sufficient for this type of design, the present study could have benefited from the inclusion of additional voices and perspectives, in particular spousal caregivers, and culturally diverse caregivers and sociodemographic information to ensure a representative sample. This study is limited in that the participants resided in only two Canadian provinces (Ontario and Alberta). Even though responses to COVID-19 in the LTC sector differed by province, it is likely that caregivers from across Canada experienced similar barriers to engagement with their loved ones. To remedy this limitation, future studies are encouraged to recruit participants from other provinces to ensure a wider geographical representation and include participants from diverse cultural and sociodemographic backgrounds.

Study Implications and Conclusions

Findings from this study can be used to inform future efforts in the domains of practice, policy, and research. In terms of practice and policy implications, if not already mandated, LTC homes should designate informal caregivers as “essential” and recognize the critical role that they play as partners in the care and quality of life of residents (Canadian Foundation for Health Improvement, 2020; Hindmarch et al., 2021). Going forward, LTC homes should operationalized the role of essential care provider in a more systemic way by including the “essential caregiver” role (terminology coined in Ontario) in their policies and practices (Canadian Foundation for Health Improvement, 2020). Specific ways that caregivers could be supported include: (1) integrating them into the care team; (2) involving caregivers in operations-level discussions and decisions to better understand how to balance the different challenges linked to resident safety and well-being and caregiver wellness; (3) offering formal PPE training and lifesaving measures to empower them; and (4) including caregivers in prioritization formulas for vaccines, providing them identification card or badge and safe visits during future outbreaks/lockdown and pandemics (Coe & Werner, 2022). LTC homes should ensure that partnerships are formed between LTC staff and caregivers to support the care delivery of residents by updating their care plans and guidelines to incorporate the perspectives of caregivers/care partners.

Greater emphasis should be placed on the mental health of residents in LTC and consider the role that families can play to support their social well-being. Our findings suggest a need for better social support for both LTC residents and caregivers going forward to prevent further isolation and disengagement. Efforts should be taken to consider how social visits between caregivers and family members in LTC can be carried out successfully as pandemic-related policies continue to evolve. Similarly, we recommend that strategies for virtual visiting and support consider diverse accessibility needs (e.g., low technological literacy, dementia, sensory impairments) to ensure that virtual visits are accessible to all LTC residents regardless of prior experience or needs. For caregivers, we recommend that agencies currently providing virtual support to caregivers continue to deliver at least some resources virtually as caregivers are often able to easily access these critical supports more easily than in-person services. As for research implications, future studies should consider whether the experiences of LTC residents and caregivers have changed over the course of the ongoing pandemic. In particular, how the experiences of new LTC residents and caregivers may differ from those who have been in LTC homes since before the beginning of the pandemic. Lastly, researchers ought to investigate the unique experiences and vulnerabilities of subgroups of LTC residents and their family caregivers. LTC home policies and structures have likely disadvantaged some LTC residents (e.g., those with dementia, no family caregiver) over others, and so, efforts should be taken to further elucidate how intersecting identities and vulnerabilities have been differentially affected during this time.

In conclusion, the COVID-19 pandemic has led to a steep decline in opportunities for socialization for residents and their caregivers in the LTC context. Our findings reveal that socialization of residents in LTC homes should be prioritized as part of their care and involve those who know them best—their caregivers (or care partners). During this crucial health crisis and beyond, investing in support systems and enhancing caregivers’ capacity to contribute to the care and meaningful engagement of older adults will reduce the risks of social isolation and improve the overall well-being of society.

Funding

This work was supported by the SSHRC Explore Major Collaborative Project Grant.

Conflict of Interest

None declared.

Data Availability

The data sets generated and/or analyzed during the current study are not publicly available due to privacy and ethical concerns but are available from the corresponding author on reasonable request. The study was not preregistered.

Author Contributions

S. A. Boamah conceived and designed the research methods and helped to draft and revised the manuscript. R. Weldrick assisted with draft and revision of the manuscript. M.-L. Yous collected and analyzed the data and helped to draft the manuscript. H. Gao assisted with data analysis and initial draft of the manuscript. A. Garnett, V. Dal Bello-Haas, and S. Kaasalainen revised the manuscript. All authors read and approved the final manuscript.

Acknowledgments

The authors gratefully acknowledge the caregivers (Susanne LR, Slyvie, MT, WH, AL, JC) who participated in the study.

References