Introduction
Globally, the coronavirus disease (COVID-19) pandemic has had profound impacts on the physical and mental health and overall well-being of older adults, particularly those living in long-term care homes (De Pue et al., Reference De Pue, Gillebert, Dierckx, Vanderhasselt, De Raedt and Van den Bussche2021; Gu & Feng, Reference Gu and Feng2021; Public Health Ontario, 2021). Older adults are susceptible to adverse outcomes when infected by COVID-19 due to their increased likelihood of having pre-existing comorbidities, decreased physiologic reserves, and challenges in communicating their symptoms (e.g., in cases of advanced dementia) (Crimmins, Reference Crimmins2020; Forster et al., Reference Forster, Dhalla, Ghali, Hebert, Leis and Lui2020; Government of Canada, 2020; Mouton, Bazaldua, Pierce, & Espino, Reference Mouton, Bazaldua, Pierce and Espino2001). Between March 1, 2020, and February 15, 2021, COVID-19 outbreaks across Canada resulted in the deaths of over 14,000 older adults living in long-term care, with over 3,000 deaths occurring in Ontario long-term care homes alone (Canadian Institute for Health Information, 2021; Stall et al., Reference Stall, Brown, Maltsev, Jones, Costa and Allen2021).
In an effort to constrain the spread of COVID-19 and reduce mortality, widespread government mandates limiting in-person contacts were instituted. When combined with the concomitantly instituted infection control procedures, the government mandates resulted in profound social isolation for many older adults living in long-term care (Ministry of Long-Term Care, 2020; Williams, Reference Williams2020). These restrictions were in significant contrast to pre-COVID-19 circumstances, whereby many family members (FM) frequently visited in-person to provide care and social engagement to their older adult family members (Schulz et al., Reference Schulz, Rosen, Klinger, Musa, Castle and Kane2014).
As the pandemic proceeded, evidence accumulated, suggesting overall declines in the well-being of older adults in long-term care homes (Ickert, Stefaniuk, & Leask, Reference Ickert, Stefaniuk and Leask2021; van der Roest et al., Reference van der Roest, Prins, van der Velden, Steinmetz, Stolte and De Vries2020). Co-occurring with the mandates that limited family members’ access to older adults were decreases in sleep quality and activity level (De Pue et al., Reference De Pue, Gillebert, Dierckx, Vanderhasselt, De Raedt and Van den Bussche2021). Older adults also described feelings of sadness, loneliness, fear, and frustration (Ickert et al., Reference Ickert, Stefaniuk and Leask2021).
In addition to the decreased well-being of older adults in long-term care homes, family members experienced negative health effects that were associated with these access restrictions (Dupuis-Blanchard, Maillet, Thériault, LeBlanc, & Bigonnesse, Reference Dupuis-Blanchard, Maillet, Thériault, LeBlanc and Bigonnesse2021; Ickert et al., Reference Ickert, Stefaniuk and Leask2021). Family members experienced emotions such as loss, sadness, frustration, grief, and distress due to the inability to visit their older adult living in long-term care (Dupuis-Blanchard et al., Reference Dupuis-Blanchard, Maillet, Thériault, LeBlanc and Bigonnesse2021; Ickert et al., Reference Ickert, Stefaniuk and Leask2021).
Prior to COVID-19, research suggested that social connectedness may be an important contributor to the quality of life, well-being, and mental health of older adults living in long-term care as well as of their family members (Bethell et al., Reference Bethell, O’Rourke, Eagleson, Gaetano, Hykaway and McAiney2021; Kehyayan, Hirdes, Tyas, & Stolee, Reference Kehyayan, Hirdes, Tyas and Stolee2016). Emergent research also suggests that social connectedness may have the potential to mitigate declines in older adults’ mental well-being (McArthur et al., Reference McArthur, Saari, Heckman, Wellens, Weir and Hebert2021).
O’Rourke and Sidani (Reference O’Rourke and Sidani2017) define social connectedness as “a subjective evaluation of the extent to which one has meaningful, close, and constructive relationships with others (i.e., individuals, groups, and/or society)” (p. 3). They suggest that indicators of social connectedness can include caring about others, feeling cared for by others, and having a sense of belonging. They find that mental and emotional well-being is a direct outcome of social connectedness (O’Rourke & Sidani, Reference O’Rourke and Sidani2017).
Taken together, the evidence of access restrictions to older adults in long-term care homes and of concomitant decreases in health and well-being of older adults and their family members suggested a causal link. It appeared that the access restrictions preventing in-person contacts between family members and older adults living in long-term care may have reduced older adults’ social connectedness, and that this might have caused negative mental health and well-being impacts.
The tragic and far-reaching impacts of the COVID-19 pandemic, including the declining health and well-being and even deaths of many older adults living in long-term care, emphasized the need for family members to continuously support their older adults (Hado & Feinberg, Reference Hado and Feinberg2020). Literature suggested that it was important to build and maintain the social connectedness that underpinned the mental health and emotional well-being of older adults living in long-term care and their family members (Hado & Feinberg, Reference Hado and Feinberg2020; Ickert, Rozak, & Masek, Reference Ickert, Rozak and Masek2020).
However, as a result of the governmental social distancing mandates, family members and older adults living in long-term care were abruptly cut off from one another. They were expected to find alternative approaches for social connectedness, and many family members turned to the use of technology such as iPads and smartphones. These approaches were not without challenges. Many family members still missed the closeness that comes with face-to-face interactions and older adults often experienced difficulties in using technology, which frontline staff could not mitigate because of the limited time they had to assist (Ickert et al., Reference Ickert, Rozak and Masek2020; Mitchell et al., Reference Mitchell, Albers, Birkeland, Peterson, Stabler and Horn2022). Experiences during the COVID-19 pandemic from long-term care homes in Edmonton, AB, suggested that the availability and usability of technology, and staff supports for its use, may be key determinants for maintaining social connectedness between family members and older adults living in long-term care homes (Ickert et al., Reference Ickert, Rozak and Masek2020). Other alternative approaches for social connectedness included outdoor visits, window visits, and engaging frontline staff as a go-between for arm’s length social connection. Window or outdoor visits had an in-person element that was beneficial to both older adults and their families, but they remained inadequate for meeting the social connectedness needs of the older adults living in long-term care and their family members (Mitchell et al., Reference Mitchell, Albers, Birkeland, Peterson, Stabler and Horn2022).
To date, much of the research conducted on the impacts of COVID-19 on older adults in long-term care has focused on the physical health consequences for this population but less so on their mental health and well-being (Verbiest et al., Reference Verbiest, Stoop, Scheffelaar, Janssen, van Boekel and Luijkx2022). Although there is recognition that pre-COVID-19, family members often were intimately engaged with their older adults in long-term care as well as with their caregiving (Gaugler & Mitchell, Reference Gaugler and Mitchell2022; Hindmarch, McGhan, Flemons, & McCaughey, Reference Hindmarch, McGhan, Flemons and McCaughey2021; Ickert et al., Reference Ickert, Rozak and Masek2020; Ickert et al., Reference Ickert, Stefaniuk and Leask2021), in Canada limited research has focused on how the COVID-19 pandemic has impacted the family members of older adults in long-term care (Dupuis-Blanchard et al., Reference Dupuis-Blanchard, Maillet, Thériault, LeBlanc and Bigonnesse2021). Since the impacts of COVID-19 pandemic-related access restrictions have affected older adults in long-term care as well as their family members, these family members may offer important perspectives on experiences of social connectedness in long-term care.
To foster a more comprehensive understanding of the experience of social connectedness between older adults living in long-term care and their family members during COVID-19, it is important to build on the few prior studies from limited locations across Canada with further research from additional geographic settings and health system contexts and place their results in the context of a rigorous theoretical framework. Recently, a theoretical framework has been developed that depicts social connectedness as consisting of five dimensions, namely (a) closeness, (b) identity and common bond, (c) valued relationship, (d) involvement, and (e) cared for and accepted (Hare-Duke, Dening, de Oliveira, Milner, & Slade, Reference Hare-Duke, Dening, de Oliveira, Milner and Slade2019; Hare-Duke, Dening, Oliveira, Dewa, & Slade, Reference Hare-Duke, Dening, Oliveira, Dewa and Slade2021). Application of this framework to studies of social connectedness between older adults living in long-term care and their family members may contribute to a deeper understanding of social connectedness in these populations.
To address the research needs described above, the purpose of the current study was to explore family members’ perceptions of the impact that COVID-19 pandemic access restrictions had on the experience of social connectedness between family members and older adults living in long-term care.
Methods
Procedure
This qualitative descriptive study sought to provide a comprehensive and rich description of family member participants’ experiences of social connectedness with older adults living in long-term care during pandemic-related restrictions on in-person visits in ON, Canada (Kim, Sefcik, & Bradway, Reference Kim, Sefcik and Bradway2017; Neergaard, Olesen, Andersen, & Sondergaard, Reference Neergaard, Olesen, Andersen and Sondergaard2009; Sandelowski, Reference Sandelowski2000).
Theoretical Framework
An adapted version of a social connectedness conceptual framework by Hare-Duke et al. (Reference Hare-Duke, Dening, de Oliveira, Milner and Slade2019) was used to guide the study because they included a holistic focus on how to develop interventions to tackle loneliness, rather than simply defining social connectedness and its determinants. Additionally, their framework was evidence-informed by conducting a systematic review and narrative analysis on social connectedness literature. The framework added definitions of some dimensions for social connectedness, such as closeness, involvement, and social support, under the cared for and accepted dimension. Closeness, in relation to this study, was defined as the perception of the bond felt between the older adult living in long-term care and their family member. Involvement was defined as the family member’s perceived level of involvement in socially engaging with their older adult family member living in long-term care. Lastly, the subdimension social support was defined as the family member’s willingness to support the older adult’s well-being. These elements of the framework were used to inform the development of the interview guide used during the in-depth interviews with study participants (Table 1) (Hare-Duke et al., Reference Hare-Duke, Dening, de Oliveira, Milner and Slade2019).
Table 1. Interview guide for family members of OA-LTCH
Ethics
Ethical approval was obtained from University of Western Ontario’s Non-Medical Research Ethics Board [REB # 116510]. Funding was provided by the University of Western Ontario Research Acceleration Plan-COVID Grant.
Data Collection
Sample sizes for qualitative descriptive research vary based on the nature of the phenomenon, including considerations such as how broadly the phenomenon is experienced and the presumed breadth of experiences (Bradshaw, Atkinson, & Doody, Reference Bradshaw, Atkinson and Doody2017). Researchers sought to recruit participants from several regions in ON, Canada, to gain a variety of perspectives and to foster diversity in the sample. Recruitment was achieved through purposeful and snowball sampling methods (Palinkas et al., Reference Palinkas, Horwitz, Green, Wisdom, Duan and Hoagwood2015). Initially, family members were recruited through study information sharing via an e-mailed recruitment poster to the Family Councils of Ontario and through long-term care homes (LTCH). Additional participants were identified by participants who reached out to other families who had older adults living in long-term care and shared the study details and research assistant contact information. After written consent was obtained, in-depth interviews were conducted with study participants using a semi-structured interview guide. Initially, the study interview guide was tested on two participants, at which point the responses were reviewed with the study team, and then the questions were modified as necessary to ensure that the interviews contained appropriate data to answer the research questions. Interviews were conducted between November 2020 and January 2021, using virtual platforms in accordance with public health guidelines for physical distancing. This study coincided with Ontario’s second pandemic wave whereby increased public health restrictions were re-introduced after a relaxing of regulations through the summer of 2020. A total of 21 family members were interviewed, 10 using via secure Zoom technology and 11 by telephone. Interviews were approximately 50 minutes long and were audio-recorded and transcribed verbatim. All participants received a $25 honorarium in recognition of their time and contribution to the research.
Strategies to ensure rigour throughout the study included strategies such as taking the time to introduce the study to participants and develop a relational rapport before proceeding with the semi-structured interview questions (credibility), use of a reflexive journal to make notes immediately following interviews and use of a detailed audit trail (confirmability, dependability, and transferability) to inform understanding of the data collection and analytic phases of the study and inclusion of direct quotes from study participants (Bradshaw et al., Reference Bradshaw, Atkinson and Doody2017).
Analysis
Inductive qualitative content analysis was conducted using NVivo 12 data management software (Neergaard et al., Reference Neergaard, Olesen, Andersen and Sondergaard2009; QSR International, 2020). In accordance with qualitative description, the study data were co-coded to identify initial patterns and themes. Insights and reflections were recorded and any discrepancies regarding generation of overarching themes were resolved (Neergaard et al., Reference Neergaard, Olesen, Andersen and Sondergaard2009). Data collection and analysis were iterative and were concluded when there was sufficient information to address the research question and analytic redundancy was reached (Cleary, Horsfall, & Hayter, Reference Cleary, Horsfall and Hayter2014). All members of the research team provided critical feedback on the development of themes, which ensured a breadth of perspectives and enhanced the study integrity (Neergaard et al., Reference Neergaard, Olesen, Andersen and Sondergaard2009).
Results
Sample
Family member participants totalling 21 were recruited and participated in the study. Of these participants, 20 identified as female (n = 21), and 11 were over the age of 60 years. Most participants were the adult children of an older adult living in long-term care (n = 16). Full demographic information is provided in Table 2.
Table 2. Demographic characteristics of family members
Themes
Four main themes with applicable subthemes were determined through data analysis and are shown in Table 3: lack of connection threatens mental, emotional, and physical health; navigating trust in the unknown; feelings of stress and anxiety for family members; and technology – an asset, but not for everyone.
Table 3. Main themes and subthemes presented from the findings
Lack of connection threatens mental, emotional, and physical health: “Just alive”
In this theme, the participants suggested their inability to connect with their older adult family member living in long-term care may have affected the older adult’s mental, emotional, and physical health. Changes in the emotional and mental health of older adults living in long-term care were noted by study participants and included accelerated disease progression, depression, anxiety, and more. Many family member participants believed this was related to an absence of stimulation, social connectedness, and love from family. One participant suggested being able to visibly see what the lack of connection was doing to their mother: I think the most challenging and heartbreaking part is the decline that I see in my mum now, and I think it’s because of a lack of love from someone that really is her family and loves her (FM06). As a result, participants felt remorse over this time lost with their family member. Several participants noted the accelerated physical decline and expressed fear of the possibility that the older adult may not recover: So it really, really has affected her, and really progressed the disease. I don’t think it should be this far in the disease if it wasn’t for the lockdown, and not letting family members in (FM06). This participant described her perception of how the impact of the restrictions affected the quality of socially connecting with her mother, and it was time they would not get back.
Participants expressed concern regarding the number of older adults living in long-term care who required increased pharmaceutical interventions. This caused frustration amongst participants who noted that new medications the older adults received did not take the place of meeting their mental and emotional needs: She’s on medication for depression, and that’s causing delusions, so she’s on medication for delusions, that works sometimes. And just, mentally and emotionally, she’s not as good as she was like even a year and a half ago (FM13). This participant suggested that the pharmaceutical interventions could not restore her emotional well-being as a substitute for missing social connection with family.
Participants noted that the initial focus of care during the pandemic should have been the mental and emotional health of the older adults rather than their physical health. They felt the social and emotional needs were not prioritized by health leaders and that, consequently, the older adults living in long-term care suffered due to neglect:
For people in long term care, it’s not about the quantity of time they have left, it’s the quality of the time they have left…. I said to my mother, if it was a difference between you living a longer time or having us in there, what you prefer. She said, well I prefer to have you in here. (FM01)
Essentially, the institutional rules shaped how this participant and her mother could socially connect with each other, resulting in their emotional needs being unmet. Study participants shared their concerns that the culture and mindset in LTCH were not suitable to promote fulfilling lives for older adults: I don’t think that the culture there is thinking about anything except keeping these people medically safe, and alive. Just alive (FM15). This participant alluded to the lack of quality of life experienced by older adults during the pandemic, and that more needed to be done to enhance their emotional well-being. Participants were steadfast in their belief that simply keeping older adults alive and physically safe was not sufficient.
Navigating trust in the unknown
This theme emphasizes family members’ struggles to trust that their older adult family members were being properly cared for in their absence. The subthemes include communication and connection to care in the home: grasping for more; lack of contact means lack of control; and separate when together: navigating safety requirements.
Communication with LTCH staff: “Grasping for more.” The participants suggested there was a lack of communication from health care providers on up-to-date information regarding their family members’ well-being living in long-term care, resulting in their feeling disconnected from their family members’ care and experiencing challenging relationships with the staff. The information that families received was often impersonal and infrequent, leaving participants with concerns and questions about the health, safety, and well-being of the older adult living in long-term care. One participant described the lack of connection she felt from the home: We did get…updates, very impersonal emails that were just, ‘We don’t have COVID, we’re testing, these are the visiting rules’ just very matter of fact (FM19). This form of communication lacked emotion and empathy – a necessary tone that may have helped participants feel reassured that the long-term care home staff was providing quality care to their family member in LTCH. In addition, when families did receive calls from long-term care homes, they learned to expect bad news: I only got phone calls and you only get phone calls from long-term care for bad things (FM19). These types of updates meant that study participants often anticipated bad news, which was harmful to their mental health. The emotional distress experienced by participants subsequently negatively impacted their ability to have engaged social interactions with their older adult family members because they were often worrying about their health. Family members craved more communication from the long-term care home, seeing this as a way to remain connected with their family members in LTCH, particularly in the absence of in-person visits: Even if once a month, because we were in such a stringent lockdown, they would have scheduled like a little mini case conference or something, just so you could get an update on how your loved one was doing (FM14). An increase in regular communication between family members and long-term care staff may have helped foster a relationship built on trust and helped reassure family members that their older adult family member was receiving good care.
Family member participants shared the distress they experienced in trying to manage their expectations and the realities of communication (i.e., phone calls, virtual visits) with their older adult family member. Most opportunities to connect with their older adult family member occurred sporadically, which contributed to persistent emotional distress for family members. Participants described how difficult it was to anticipate when the long-term care home would contact them. For instance, one participant explained that better communication from the long-term care staff would have helped her plan her time so she could be available when the staff called to connect her with her mother:
Communicating when we would get a call prior to the call so we could be prepared and available [would have helped]. Not just picking up a phone and calling or getting on the computer and Skyping and I miss a call. But, you know, they were so few and far between… (FM02)
Although many participants were informed ahead of time of when they would be receiving a call, it was a big change from pre-COVID-19 when they could connect with their older adult family member whenever they wished. The lack of flexibility to schedule phone calls or window visits with their older adult family members was stressful for family member study participants and compounded their stress.
In other situations, family members voiced concerns about the older adult to the staff of the long-term care home but felt that these issues were not addressed. This inaction left the family members feeling disempowered and helpless to support their older adult family member. A participant took further initiative in response to the long-term care home’s inaction:
I just made my call yesterday to the Ministry Action Hotline because I have got to a point where I couldn’t stand it anymore. I tried calling them and nobody replied. I want to just find out [if what] the staff [told me], because they told me that all Facebook will be stopped. So I feel like – and I couldn’t reach this nurse, you know – I feel like I’m in the dark now. (FM18)
This participant voiced frustration and resulting distress that protocols could not be determined to help guide communication between family members and the long-term care staff. Furthermore, participants reported that the frequently changing directives and discrepancies of information between the Ministry and the long-term care home caused them great confusion:
You know, the government were saying, yes, let essential caregivers in, but then they said it’s up to the…individual home to actually make the final decision. So, I’m reading the government communication saying yes, you can go in, and the home saying no, you can’t, because we have a potential outbreak. (FM06)
The intermittent lapses in communication, receipt of conflicting messages, and challenges experienced by family member participants when trying to engage with older adults and staff in long-term care had profound impacts on their health and well-being. These participants experienced anxiety, distress, and their ability to trust that the long-term care home was adequately caring for their family member was undermined.
Lack of contact means lack of control. Prior to COVID-19-related restrictions on in-person visits in long-term care homes, some family members regularly provided substantial care and social engagement to the older adult family members who were living there. As a result of pandemic-related visitor restrictions, older adults living in long-term care suddenly depended exclusively upon health providers for their care. Many family member participants struggled to trust that the older adult living in long-term care would be adequately cared for in their absence. For example, one family member participant noted: And you basically had to turn everything over to them, there was no choice, so you had to trust and rely on them to take care of your loved one and do their job. And for me, that’s hard (FM14). The relinquishing of care also impacted family members’ ability to socially connect with their older adult family member because pre-COVID-19, the time spent caring for their family member also provided valuable opportunities for social engagement. Additionally, when family members were physically present in the long-term care home, they were able to better evaluate the health and safety of their family member, something they missed enormously during COVID-19 when in-person visits were paused. Study participants also discussed their frustration over their inability to influence the older adults’ living environment in long-term care:
So a big part of visiting is not just to see the person and speak to them, it’s to make sure that their environment is what it should be and that it’s clean, it’s tidy and that kind of thing and, you know, that they’re comfortable there. So that’s a big part of it. So that was frustrating not – that was a frustrating part of not being able to go in is not seeing what was going on in there. (FM19)
The inability to obtain firsthand evidence that their older adult family member was well-cared for hindered the family member participants’ ability to trust the long-term care staff and meant that they had to try and find other ways to socially connect with their family member. One participant family member indicated that it was very difficult to trust the staff in long-term care, especially when situations arose that suggested that the older adult’s safety was compromised:
So when they locked down I said to the administrator ‘How are you going to keep my mum safe? She’s not safe in her room, she doesn’t understand.’ And he said ‘Oh well, we’ll do our best.’…Got off the phone with him and an hour later I got a phone call ‘Your mother has fallen in her room.’…anyway, another hour later I got a second call; she had fallen again….And I got on the phone to the administrator immediately and said ‘What are you going to do to keep my mother safe? Since we talked this morning, she’s had two falls in her room. She is not safe there.’ (FM02)
Learning that their parent in long-term care had experienced two falls and being unable to see her or even comfort her was emotionally distressing for the family member study participant and further undermined their trust in the LTCH staff.
Family participants found that it was challenging to find ways to socially connect with their older adult family member in the absence of in-person visits. Moreover, the chronic anxiety they experienced related to concerns about basic care provision meant that opportunities for social engagement via phone or tablet were often spent enquiring about basic health needs rather than making meaningful social connections. Adding to family member participants’ worry were their questions and concerns about the infection control practices and adequate provision of personal protective equipment to staff within the long-term care homes: …it just makes me wonder, did they have the right PPE, enough of it or the right one or like how did it happen, and you just always kind of wonder and we’ll, I’ll never know probably (FM16). Family members’ inability to see how long-term care staff practised infection control left them wondering whether procedures were being implemented as intended.
Separate when together: Navigating safety requirements. Family member study participants struggled to remain abreast of frequently changing safety requirements and felt that these measures were detrimental to their relationships with their older adult family member living in long-term care. Mandated safety restrictions such as the use of personal protective equipment, rapid testing, constraints on types of visits all made it challenging for family members to maintain the quality of the relationships they had experienced with their older adult family member pre-COVID. For example, there were mandated safety protocols in place for outdoor visits that included physical distancing and the use of masks, which, compounded by variable weather conditions meant that having a meaningful and rewarding visit was virtually impossible:
We’re six feet away, we can’t touch her, she can’t touch us, she can’t hear us, we have a mask on, she doesn’t understand why we have a mask on. She doesn’t understand probably why she’s sitting outside in the rain or the cold because these visits were scheduled. (FM19)
These limitations on physical proximity affected how family member participants could socially connect with their older adult family member living in long-term care. In addition, visits were prescribed to a specific length by the long-term care home, which impacted family member participants’ ability to partake and truly enjoy the visit. They felt rushed and distracted, which limited their ability to fully engage in a meaningful connection, as discussed by one participant:
And so by the time you got in and you sat down, the clock was ticking…But if there was someone scheduled behind you, of course your 30 minutes, you’d have to sit there and they would give you a warning that you had about five minutes or whatever, you’d have to wrap things up. It wasn’t easy. (FM14)
Furthermore, participants expressed difficulties scheduling visits. With a limited number of time slots available that did not necessarily take into account other obligations such as travel time and work requirements, participants described how they struggled to see their older adult family members living in long-term care as much as they’d like to: Another reason we don’t talk as often, it’s really hard to book. So my brother and I work fulltime and so we could only ever go on the weekends and weekends were booked (FM21).
Even when in-person visits resumed, family member participants felt limited in their ability to connect with their older adult family members living in long-term care due to the need to wear personal protective equipment: And, you know, sometimes I’ll – I try and say something or do something that kind of triggers in her who I am, but it is difficult, yeah, because she just sees another person in PPE (FM06). Even though the family member participants and the older adults living in long-term care were physically close in these situations, they felt emotionally distant. For example, one participant explained how the physical distancing restrictions prevented her from connecting with her mother: You never see a smile because you don’t see the person’s face. And she hasn’t had a hug; I’m not allowed to hug her. I can’t take my mask off, you know. So just the emotional distance, yeah (FM11). Trying to navigate the safety restrictions and maintain a close relationship were challenging for family member participants and their older adult family members living in long-term care.
Feelings of stress and anxiety for family members
The combined experience of being physically separated from the older adult living in long-term care, having limited knowledge of the day-to-day activities within long-term care, and being exposed to disturbing stories and images depicted in the media left many of the family member participants traumatized. Excerpts from interviews indicated that participants were distressed and felt as though their needs were not prioritized. Participants expressed that they were constantly worried about their older adult family member in long-term care. For some participants, the thought of their family members suffering or even dying in their absence left them feeling hopeless and powerless:
It’s just there’s so many levels to the fear, it’s just really, really scary, but overwhelming fear for your loved one in there is what it is. Fear and worry, you just worry, worry and, you know, you wonder what’s going on and your imagination goes overboard, and you think are they being – like are they being looked after, are they being neglected. (FM19)
The participants’ circumstance of being fearful about the well-being of their older adult family members living in long-term care was overwhelming and all-consuming. Their profound experience highlights the juxtaposition of the fear they had that the basic necessities of life were not being met for the older adult alongside their worry that the older adults’ social and emotional health was also being severely impacted by COVID-19-related protective measures. Additionally, simply hearing stories in the media about the grave situations in many long-term care homes prompted feelings of stress and anxiety for family members. Participants were left wondering whether their own older adult family members were facing similar challenges, and they worried about the potential consequences. For example:
But when things started getting really bad around us, like at the two other care homes in the community and in Ottawa and everywhere, it started to get I was fearful that my God she’s going to get it, she’s going to die alone in a bed, in a diaper, not fed, not looked after, nobody to see her. (FM19)
Participants also noted that the impacts of physical distancing measures and restrictions on in-person visits by family members would have lasting repercussions for both older adults living in long-term care and their families: And then from my father again, he’s probably aged ten years this year, because of not – you know, worrying about his wife, and not being able to be there for her (FM06). Participants understood the importance of the physical health and safety of older adults in long-term care, but they felt their own perspectives and situations were disregarded by both government and individual long-term care homes: I mean we had certainly an understanding of what they (the LTCH) were going through but they didn’t understand what we were going through (FM11). Their suffering was profound and potentially far reaching, something that was not acknowledged amid the pandemic.
Technology – An asset, but not for everyone
Prior to the pandemic, family members had ready physical access to the long-term care home and could frequently check on the mental health and emotional well-being of their older adult family member. During times when visitor restrictions were in place, family member participants began to recognize the potential benefits of technology, such as using virtual modalities like tablets, iPads, and smartphones to visually see their older adult family member living in long-term care and to communicate with them as well as with the long-term care home staff. One participant described her experience: For the families, you get to see your loved one and see if they lost weight, if they have bruises, if their teeth look clean, if their hair looks like it’s been washed any time in the last few weeks, if they’re dressed appropriately in terms of like cold, warm, whatever (FM19).
Participants also described how they could indirectly connect with their older adult family members in long-term care through the use of technology. For example, staff in the long-term care home would often share photos or videos through online platforms for family members to see. Although it was a small gesture, participants appreciated these actions that helped them feel closer to the older adult family members:
The [recreation] department would put things on Facebook. So especially like Easter or Mother’s Day or Father’s Day or Canada Day they would put a little thing. You know, they would put a hat on them and then they would take a picture of them or whatever and they would put it on Facebook… (FM19)
Though there were benefits to technology, family member participants felt that devices like phones and iPads could not replace in-person visits: And obviously there – the personal connection is gone. There’s only so much you can do on the phone, you know. So, it’s really hard (FM13). Participants also described some of the factors that made using technology in place of in-person visits challenging such as cognitive limitations, hearing problems, and using technology in a busy and distracting environment. For instance, one participant explained the difficulties of using technology to communicate with her father in long-term care:
The other thing I want to mention about the FaceTime too, because a lot of these seniors have hearing challenges and they were in areas where there was stuff going on which distracted them, I know in the home that my dad was at, it would have been a lot more effective for him to have like a headset or something to put on his ears so he could just filter out that noise and focus on my voice. (FM14)
So, while family member participants appreciated virtual visits as a means for fostering some level of social connection with their older adult family members living in long-term care, they did not think it could not readily take the place of in-person visits. Moreover, the challenges that many older adults experienced when trying to use virtual technology led some family member participants to suggest that virtual visits were more for their behalf so they could check on their family member rather than to benefit the older adult living in long-term care. For example, one participant suggested that virtual technology was not able to support her parent’s emotional well-being:
And we had some phone calls prior to that but like I said, she’s not good with technology because of her dementia so I did not find virtual visits very helpful. I got to see her but I don’t think it helped her in any way. (FM02)
Furthermore, participants acknowledged that long-term care home staff needed to support the older adult during virtual visits. Having a staff member present was vital not just to facilitate the use of technology, but also to provide emotional support to the older adult and their family members, as these visits could be emotionally charged. One participant emphasized the importance and benefit of having a long-term care home staff member present during virtual visits:
And that relationship and that connection was huge, because this lady was a connection between my mom and me. So, as an example, if my mom seemed upset, she would rub her shoulder or hold her hand or, you know, touch her face, you know. And she became my extension to my mom. Like, a direct connection to her. (FM10)
This is an example of how the long-term care home staff in conjunction with virtual technology helped mitigate the restrictions that were impacting social connections between family members and older adults living in long-term care during COVID-19. Long-term care home staff had a pivotal role in helping family members and older adults socially benefit from virtual visits. Family member participants were also deeply appreciative of the physical and emotional care they provided to the older adults in the family members’ absence.
Discussion
This study exploring the impact of physical separation on social connectedness between older adults living in long-term care and their family members contributes to the growing body of COVID-19-related research on older adults in this domain. Early COVID-19 research on older adults within long-term care tended to focus on the physical health impacts of COVID-19 with limited attention given to older adults’ social and emotional health and overall well-being (Verbiest et al., Reference Verbiest, Stoop, Scheffelaar, Janssen, van Boekel and Luijkx2022). The findings of this study extend the literature by presenting family member experiences of social connectedness when there were severely reduced opportunities for in-person engagement between older adults living in long-term care and their family members. Results of in-depth interviews with family members suggest that the limitations on in-person gathering strongly impacted their ability for social connectedness with their older adult family members living in long-term care. Family members reported that the reductions in in-person social connections led to significant emotional distress for the older adults living in long-term care and negatively impacted their overall health. Confirming research findings by Dupuis-Blanchard et al. (Reference Dupuis-Blanchard, Maillet, Thériault, LeBlanc and Bigonnesse2021), the current study outcomes also have implications for the psychological health of family members who reported experiencing pronounced stress and anxiety, which persisted over time, particularly as conditions in long-term care homes deteriorated. Study participants described how their older adult family members changed, declining both physically and mentally. The participants also expressed grave concerns that their inability to provide love and care to their older adult family members hastened the declines in their health they witnessed. This finding is echoed by other research, which revealed that family members noticed significant dementia progression in older adults living in long-term care, as well as physical health decline during COVID-19 (Hindmarch et al., Reference Hindmarch, McGhan, Flemons and McCaughey2021).
The current study’s findings inform multiple constructs of the conceptual framework of social connectedness by Hare-Duke et al. (Reference Hare-Duke, Dening, de Oliveira, Milner and Slade2019). Family member study participants described how their ability to socially connect with their older adult family members in long-term care was directly impacted by access restrictions and system-related issues such as inadequate staffing during the COVID-19 pandemic. These restrictions impacted their ability to achieve closeness with their family member, to be involved with them, and to engage in various types of social support. Social connectedness as constructed by Hare-Duke et al. (Reference Hare-Duke, Dening, de Oliveira, Milner and Slade2019) is applied in the context of social relationships and assumes inherent elements of subjectivity. The study findings suggest that the ability to achieve closeness and involvement between older adults in long-term care and their family members was undermined through constraints on in-person visits and loss of activities that fostered social engagement such as sharing drinks or food. Efforts to circumvent restrictions by using window visits or meeting outside with personal protective equipment were poor substitutes for most participants who were unable to recreate closeness either physically or emotionally with their older adult family members. Impacts of restrictions on in-person engagement were also experienced by family member study participants who described declines in their own health and an inability to find satisfying means to provide social support and to care for their older adult family members in the absence of being with them in-person. Importantly, family members noted that their older adult family members’ well-being was also contingent upon the social relational engagement the older adult had with staff within long-term care, and that loss of regular programs such as recreation therapy also had negative impacts on the older adult. This finding apprises the perspective offered by Hare-Duke et al. (Reference Hare-Duke, Dening, de Oliveira, Milner and Slade2019) that social connectedness depends on multiple dimensions and that successful strategies to support social connectedness must address multiple components such as closeness, being cared for, and social support.
Family members in the current study overwhelmingly suggested that their ability to socially connect with their older adult family members in long-term care was deeply impacted by restrictions on in-person visits and that alternatives strategies such as window visits and technology (e.g., iPads and smartphones) were not sufficient replacements. Some research suggests that restrictions on in-person visits implemented during the COVID-19 pandemic had little impact on some older adults and their family members who already were geographically separated prior to COVID-19. As a result, these family members had well-established alternative virtual strategies using technology and their social–relational situation was less affected by the access restrictions (Ickert et al., Reference Ickert, Stefaniuk and Leask2021). Future research and interventions should focus on helping family members and older adult family members living in long-term care explore and become comfortable with alternative strategies for social connection such as virtual technology, before outbreaks occur that suddenly can constrain in-person engagement.
Several family member study participants expressed strong concerns that, during their absence, the emotional and physical needs of their older adult family members living in long-term care were not being adequately addressed. They also described their intense fear that their older adult family members would die alone from COVID-19. Current research highlights the importance of physical connections suggesting that face-to-face human interactions cannot be entirely replaced by alternative strategies (Giebel et al., Reference Giebel, Cannon, Hanna, Butchard, Eley and Gaughan2020). Moreover, the declines in older adult well-being noted by their family members suggest that there should be a more balanced approach to weighing infection control measures with older adults’ physical and mental health. COVID-19-related research conducted in the Netherlands, where long-term care homes were opened to family visitors, despite widespread infection rates, found added value in having in-person visits from family because they supported the social needs of the older adults living in long-term care (Kemp, Reference Kemp2021). These findings highlight the benefits of balancing pandemic safety with recognition of the need to optimize human connection. In the current study, family member study participants strongly believe that quality of life should be prioritized over quantity of life for their older adult family members, and that missing precious time with family could cause irrevocable harm to their emotional well-being. However, family members struggled with a conundrum. They were torn between wanting to allow visitors into the home to help meet the older adults’ complete physical and emotional well-being and their grave concerns that visitors entering the home might expose their older adult family members to COVID-19 if the homes could not offer adequate protection measures.
The findings of the current study also contribute to the body of literature on long-term care by demonstrating the value of strong relationships between family members and long-term care staff since this relationship can positively affect the experience of social connectedness between older adults and family members. When family members trusted long-term care staff and had a good working relationship with them, they were able to embrace the staff members’ ability to bridge the physical gap that separated them from their older adult family members. This in turn allowed the family members to feel more connected to their older adult family members and feel confident in the staff members’ ability to provide quality care. Prior study findings support the notion that good communication is key to developing a trusting relationship between family members and long-term care home staff (Bauer, Reference Bauer2021; Boogaard, Werner, Zisberg, & van der Steen, Reference Boogaard, Werner, Zisberg and van der Steen2017; Gaugler & Mitchell, Reference Gaugler and Mitchell2022; Utley-Smith et al., Reference Utley-Smith, Colon-Emeric, Lekan-Rutledge, Ammarell, Bailey and Corazzini2009). However, similar to the findings by Dupuis-Blanchard et al. (Reference Dupuis-Blanchard, Maillet, Thériault, LeBlanc and Bigonnesse2021), our results suggest that limited communication between the long-term care home staff and family members undermined family members’ trust in the long-term care home. Furthermore, the provision of limited updates to family members and the inability of the long-term care home staff to support communication between the older adults (e.g., phone, tablet) and family members decreased family members’ trust in the quality of care being provided and further eroded the family members’ well-being. Prior research has shown that prolonged emotional distress can lead to depression in family caregivers (Gallagher & Wetherell, Reference Gallagher and Wetherell2020), which could also negatively impact their ability to foster social connectedness with the older adult living in long-term care.
Family member study participants also discussed barriers that impacted the older adults’ ability to maintain and engage in social connections using alternative approaches to in-person visits. For example, older adults with more advanced dementia were unable to independently use technology, which meant they had to rely on the assistance and availability of long-term care staff. This finding adds to research evidence that suggests that limited knowledge of and ability to use communication technology could lead to feelings of loneliness and isolation during the pandemic (Wang et al., Reference Wang, Li, Barbarino, Gauthier, Brodaty and Molinuevo2020). The current study findings highlight the invaluable role that long-term care staff had in supporting social connections between older adults and their family members. Provision of technology and emotional support to older adults living in long-term care and families throughout visits has shown to be a key role of health providers during the pandemic.
Finally, the findings generated by this study suggest that broader society should be concerned about and advocate for the mental health and emotional well-being of family members of older adults living in long-term care. Family members were often caregivers for older adults living in long-term care prior to the pandemic, providing physical and emotional support (Kemp, Reference Kemp2021; Provincial Geriatrics Leadership Office & Regional Geriatric Programs of Ontario & Canadian Geriatrics Society, 2020). When family caregivers became physically separated and unable to engage in physical care and the provision of social connectedness for the older adult family members living in long-term care, many of these family members suffered mental and emotional consequences such as anxiety, stress, and loneliness (Provincial Geriatrics Leadership Office & Regional Geriatric Programs of Ontario & Canadian Geriatrics Society, 2020). Moreover, the stress experienced by family members also stemmed from physical separation, mistrust of staff members, poor communication from the long-term care home and government, and a persistent sense that they had no control over their situation. Family member study participants felt undervalued and unheard particularly by government and in some cases by long-term care homes throughout the early waves of the pandemic. Their experiences emphasize a greater need for family member engagement in all aspects of older adult care in the long-term care setting.
Strengths and Limitations
The current study had strengths and limitations. A strength was the robust participant interest that enabled researchers to interview a geographically diverse group of family member participants and obtain rich data that inform our understanding of how physical separation impacted social connectedness between older adults and their family members during COVID-19. Additionally, because data collection corresponded with the second wave of the pandemic in Canada, researchers were able to interview participants who have experienced a range of government mandates impacting in-person engagement. Moreover, the current study contributes important findings on the experiences of informal caregivers of older adults living in long-term care, a population that has experienced marginalization and exclusion from policy and research.
Limitations include that the study sample consisted of individuals who were recruited through various family councils throughout ON. While these individuals presented a variety of perspectives, most were the adult children of older adults living in long-term care, which could bias the findings toward a perspective that was particular to their role as caregivers. In future studies, it would be important to engage spousal caregivers of the older adults living in long-term care through alternative recruitment strategies such as newspapers, libraries, and community groups. In addition, the conceptual framework used to situate study findings was developed using measures of social connectedness applied with samples of older adults with mental health disorders. It should be further explored how well these constructs are mapping on older adults living in long-term care. A future study conducted using a framework that situates social connectedness within populations who have age-related conditions such as dementia could help overcome this limitation. Lastly, in considering the findings of this research, it is important to acknowledge that they do not represent the experiences of all family members of older adults living in long-term care. Local responses to the pandemic have varied across ON with resultant outcomes being variable in terms of death rates, outbreak protocol implementation, and overall impact of COVID-19 on older adults living in long-term care homes and their family members (Liu et al., Reference Liu, Maxwell, Armstrong, Schwandt, Moser and McGregor2020).
Implications
This study documents the painful experience of separation that occurred between some older adults living in long-term care and their family members in ON, Canada. The experiences of family members and the social and emotional impacts of physical separation on older adults living in long-term care received limited attention in the early stages of the pandemic. As subsequent waves of the pandemic have progressed, there has been important recognition given to family members as “essential caregivers” and as such they have been granted wider access to provide physical, social, and emotional care and support to older adults living in long-term care. Viewing all family members as “visitors” devalues their role as caregivers and fails to acknowledge that they are often integral to the health and emotional well-being of older adults living in long-term care settings (Kemp, Reference Kemp2021; Tupper, Ward, & Parmar, Reference Tupper, Ward and Parmar2020). This shift to recognize family members as “essential” is congruent with the interests and experiences of participants in this study. Clear and timely policies and procedures around the role of essential caregivers, particularly regarding supporting physical care and their role in social connectedness, are vital to both the older adults living in long-term care and their family members (Ickert et al., Reference Ickert, Rozak and Masek2020).
Additional supports, staff members, training, and adaptations may be necessary to apply technology meaningfully and effectively and support social connectedness between family members and older adults in long-term care. In cases of very advanced dementia, use of technology may not be appropriate, and suitable care plans must be in place to support the social and emotional well-being of this segment of the long-term care population across a range of potential scenarios. While technology utilization will continue to increase among older adults over time, it will not necessarily become ubiquitous.
Future research should explore a variety of approaches to embed essential caregivers within long-term care and create a balance between physical safety from COVID-19 (or other pandemics or epidemics) and the invaluable role that family members have in the day-to-day care of older adults living in long-term care and their ability to engage in meaningful social connections. Further practice guideline development would assist long-term care homes in adopting optimal practice standards in this regard.
Conclusion
The current study aimed to increase understanding of the experiences of social connectedness between older adults living in long-term care homes and their family members who were physically separated during the early waves of the COVID-19 pandemic. The study findings suggest that a loss of physical contact between older adults living in long-term care and their family members severely impacted their ability to socially connect with each other and had a detrimental effect on the mental health and emotional well-being of both parties. Family members of older adults living in long-term care have been profoundly impacted by the sequalae of events that occurred during the early waves of the COVID-19 pandemic. These family members, too, were victims of constantly changing guidelines, fractured communication, and most importantly of their inability to engage in meaningful relationships with their older adult family members from whom they were cut off with no warning or preparation. Their struggles were evident as they expressed feelings of helplessness and an inability to have meaningful social connection with their older adult family members. The current research highlights the importance of supporting both older adults in long-term care and their family members’ mental and emotional health in the context of public health restrictions. In addition, while technology became an important tool for communication between some older adults living in long-term care and their families during the pandemic, its widespread application requires more research to understand its utility and most effective approaches to its implementation across a range of potential scenarios. Overall, many learning opportunities have resulted from the COVID-19 pandemic. The current study highlights the important role of social connection in the health and well-being of older adults living in long-term care and their family members. Future research is needed that investigates strategies to embed social connectedness as a key component used to evaluate the health and well-being of older adults living in long-term care.
Acknowledgements
None.
Competing interest
The Authors declares that there is no conflict of interest.
Funding
The authors disclose receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the University of Western Ontario COVID-19 Catalyst Grant [grant number R6024A03].
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