Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

Addressing the Experiences of Family Caregivers of Older Adults During the COVID-19 Pandemic in Finland

Addressing the Experiences of Family Caregivers of Older Adults During the COVID-19 Pandemic in... This cross-sectional study assessed the experiences of family caregivers of older adults during the COVID-19 pandemic. Participants were recruited (n = 101) between April and December 2019. We applied a mixed-method approach. Quantitative data were analyzed using an independent samples t-test and logistic regression analysis, and qualitative experiences with modified thematic content analysis. The mean age of the family caregivers was 76 years (SD = 7), and 72% were females. Experiences of loneliness and worry during the pandemic were evaluated by self-assessment. Approximately one-third of the participants reported loneliness and worry. These experiences were further associated with female sex, increased psychological distress and depressive symptoms, and decreased physical condition and social relationships. Family caregivers were also worried about the pandemic’s impact on health and well-being. Thus, the COVID-19 pandemic has added an extra psychosocial load to family caregivers. The post-pandemic era requires increased attention to re-evaluating policies and services. Keywords caregiving, COVID-19, loneliness, social isolation What this paper adds •• Our study adds to the existing literature by assessing how social isolation due to the pandemic has affected the well-being of family caregivers who take care of older adults. •• The COVID-19 pandemic and its measures and regulations have created new challenges and needs for family caregivers. •• The pandemic has added extra mental and psychosocial loads to older family caregivers, including worry and a sense of loneliness. Applications of study findings •• There is a need to enhance and re-evaluate the policies and support services regarding socially vulnerable populations. •• Implementing community-based programs, ensuring support services, providing mental health facilities through online services, and implementing a stronger life-course approach in healthcare to maintain family caregivers’ well-being should be considered. Manuscript received: November 2, 2021; final revision received: Department of Oral and Maxillofacial Diseases, Kuopio University March 24, 2022; accepted: March 30, 2022. Hospital, Kuopio, Finland Department of Medicine, Endocrinology and Clinical Nutrition, Kuopio Department of Nursing Science, University of Eastern Finland, Kuopio, University Hospital, Kuopio, Finland Finland Institute of Public Health and Clinical Nutrition, University of Eastern Corresponding Author: Finland, Kuopio, Finland Roosa-Maria Savela, Department of Nursing Science, University of Eastern Institute of Dentistry, School of Medicine, University of Eastern Finland, Finland, Yliopistonranta 1C, Kuopio 70600, Finland. Kuopio, Finland Email: roosa-maria.savela@uef.fi Savela et al. 2 Journal of Applied Gerontology 1813 The coronavirus (COVID-19) pandemic has changed our risk factors include experiences of depression, not being mar- lives and has caused several adverse effects on health and ried/partnered, and partner loss (Dahlberg et al., 2022). In addi- well-being. It is well documented that the impacts have been tion, some researchers have examined the association between significant on individuals’ social relationships, and physical loneliness, social isolation, and family caregiving. For exam- and mental health (Beach et al., 2021; Zaninotto et al., 2022). ple, spousal caregivers might experience more loneliness, The consequences of the pandemic have been noteworthy in depression, and lower life satisfaction than non-caregivers vulnerable populations, increasing existing health inequali- (Wagner & Brandt, 2018). In addition, caregivers of those with ties (Dorn et al., 2020). dementia may have higher odds of depressive symptoms com- COVID-19 can be severe for persons of any age. However, pared to non-caregiving partners, partly mediated by loneliness older adults are at a greater risk of serious illness and death (Saadi et al., 2021). In addition, a prior study indicated that (Verity et al., 2020). Therefore, the pandemic has forced caregivers of those with dementia have greater social isolation measures and regulations to limit the spread of the virus to and increased caregiving stress associated with loneliness protect vulnerable populations. These regulations have (Victor et al., 2021). meant the physical distancing and social isolation of older However, the loneliness and distress of FCs of older adults adults (Armitage & Nellums, 2020; Tuijt et al., 2021). have not been explicitly evaluated in previous intervention However, while physical distancing is effective in infection reviews (Gorenko et al., 2021). Moreover, there is still limited prevention (World Health Organization, 2020), it has caused evidence of FCs’ concerns, loneliness, and social support dur- mental health outcomes. In short, social isolation among ing COVID-19. Some pandemic-related evidence has focused older adults has been defined as a severe public health con- on FCs caring for a person affected by Alzheimer’s disease cern (Armitage & Nellums, 2020). Hence, their social isola- and other forms of dementia (Frangiosa et al., 2020) and tion may lead to poorer mental health and well-being, which assessed differences between subgroups of caregivers and is in turn linked to a decline in physical health and cognition non-caregivers (Park, 2021). Similarly, pandemic-related evi- (National Academies of Sciences, Engineering, and dence has assessed caregivers’ self-efficacy and stress (Sheth Medicine, 2020). Therefore, the situation has increased inter- et al., 2021) and used a quantitative research method to est in the well-being of older family caregivers (FCs). assess the pandemic’s effects (Beach et al., 2021). Partners, relatives, friends, or neighbors to individuals Our study adds to the existing literature by assessing how with physical, mental, or cognitive challenges usually pro- social isolation due to the pandemic has affected the well- vide family caregiving (Schulz et al., 2020). Unfortunately, being of FCs who take care of older adults with various several studies have shown that some caregivers have poorer health conditions. The primary aim was to assess FCs’ expe- health outcomes than non-caregivers. These outcomes riences during the pandemic. We used a mixed-methods include lower quality of life (Välimäki et al., 2016), higher study design and examined FCs’ experiences regarding lone- rates of psychological distress (Schulz et al., 2020), and liness, worry, social support, and related factors. These fac- poorer physical and mental health (National Academies of tors include sociodemographic features (e.g., rural and urban Sciences, Engineering, and Medicine, 2016). municipalities), psychological distress, depressive symp- The pandemic and the resulting social isolation may have toms, and quality of life. worsened FCs’ well-being. Thus, prior evidence shows that loneliness and social isolation are associated with negative Methods health outcomes (National Academies of Sciences, Engineering, and Medicine, 2020). However, social isolation This cross-sectional study used a mixed-method approach to is distinct from loneliness. In brief, social isolation refers to assess FCs’ experiences during the COVID-19 pandemic. This “the objective situation of being alone or lacking social rela- study is part of the randomized population-based multidisci- tionships” (Perlman & Peplau, 1998, p. 571). In contrast, plinary lifestyle, nutrition, and oral health in caregivers loneliness is commonly defined as “the subjective psycho- (LENTO) study (Nykänen et al., 2021). We did not initially pro- logical discomfort experienced by people when their net- pose to assess the effects of COVID-19. However, questions on work of social relationships is significantly deficient in either the experiences of loneliness, worry, and social support were quality or quantity” (Perlman & Peplau, 1998, p. 571). included when the first wave of the pandemic and social isola- Sometimes, loneliness is divided into two key dimensions: tion started in Finland (March 2020). Thus, there was an impres- emotional and social loneliness (Perlman & Peplau, 1982; sion of dramatic changes in the lives of older adults. Weiss, 1973), where emotional loneliness refers to a lack of close emotional attachment, and social loneliness refers to Sample the absence of an adequate social network (Weiss, 1973). Previous evidence shows that loneliness in older adults is We recruited participants between April and December 2019 complex. Several factors, including increasing age, income, from two municipalities in the northern Savo Province, health status, place of residence, and contact with friends and Finland. The inclusion criteria of FCs were those who lived family, affect loneliness (Drennan et al., 2008). Other identified in the municipality of Kuopio (urban municipality) or 1814 Savela et al. Journal of Applied Gerontology 41(8) 3 Figure 1. The STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) flow chart of the study sample. Vesanto (rural municipality), had a valid care allowance We collected both quantitative and qualitative data. granted by municipalities, and took care of a person aged 65 Therefore, the checklists of Strengthening the Reporting of or older. However, FCs who took care of care recipients (CR) Observational Studies in Epidemiology (STROBE) and with end-of-life care were excluded. Otherwise, there were Consolidated Criteria for Reporting Qualitative Research no exclusion criteria regarding the study participants’ maxi- (COREQ) were followed (Tong et al., 2007; Vandenbroucke mum age, morbidity, or cognition. et al., 2007). Data collection began during the first and sec- We recruited participants in collaboration with the munic- ond pandemic waves, between June and December 2020, at ipalities’ social and healthcare workers. Thus, all FCs with a FCs’ households. We used personal protective equipment care allowance are in the municipalities’ registers. The and maintained social distancing during home visits. municipality workers provided addresses of the eligible pop- However, some interviews were also conducted outdoors ulation based on the inclusion criteria. The research team because of the participants’ wishes. sent letters to these FCs. Of the 449 eligible participants, 126 agreed to participate in the study. Of this population, 101 Measurements (80%) answered the COVID-19 questionnaire (Figure 1). Sociodemographic Factors. The study nurse collected infor- mation on the FCs’ background factors, including age, sex Data Collection (female/male), and area of residence (Kuopio/Vesanto). This study collected the quantitative and qualitative data in Finnish. These included questions on sociodemographic fac- Experiences during the COVID-19. We interviewed FCs based tors and validated questions on psychological distress, depres- on their experiences regarding the COVID-19 pandemic. sive symptoms, and quality of life. In addition, researchers We had four dichotomous questions (yes/no), and some of provided questions on experiences regarding loneliness, them were followed by an open-ended question. The four worry, and social support. These questions were not pilot questions were (1) “Have you felt loneliness during the tested. The duration of the interviews was approximately COVID-19 restrictions?” (n = 101), (2) “Has your loneli- 30 minutes. A trained study nurse and other trained members ness increased during the COVID-19 restrictions?” (n = 72, of the research team performed these measurements. response rate 71%), (3) “Are you worried about the situation Savela et al. 4 Journal of Applied Gerontology 1815 Table 1. Characteristics of family caregivers. Sociodemographic Characteristics n = 101 Females, n (%) 73 (72%) Area of living, n (%) Kuopio 91 (90%) Vesanto 10 (10%) Age, mean (SD), years 76 (7) Females 75 (6) Males 78 (7) Experiences regarding the COVID-19 pandemic, n (%) n = 101 Have you felt loneliness during the COVID-19 restrictions? Yes 27 (27%) No 74 (73%) Has your loneliness increased during the COVID-19 restrictions? (n=72) Yes 26 (36%) No 46 (64%) Are you worried about the situation regarding the COVID-19 pandemic? Yes 34 (34%) No 67 (66%) Have you received (social) support during the COVID-19 restrictions? Yes 52 (51%) No 49 (49%) Note. SD = standard deviation. Descriptive statistics for continuous (mean, SD) and categorical variables (n, %). regarding the COVID-19 pandemic? (n = 101) If yes, what Data Analysis specifically?” and (4) “Have you received (social) support Quantitative analysis. First, we performed descriptive analy- during the COVID-19 restrictions? (n = 101) If not, what ses to summarize the results using numbers, percentages, kind of support would you have needed?” The authors used means (M), and standard deviations (SD). Before data analy- these questions to obtain a diverse perspective on FCs’ ses, we examined the normality of data variables using the experiences. Kolmogorov-Smirnov test. Then, statistical comparisons between the characteristics were made using the independent Psychological Distress. The psychological distress of FCs was samples t-test or alternative test (i.e., Mann-Whitney U test). assessed with a valid and reliable General Health Question- In addition, binary logistic regression, expressed in odds naire (GHQ-12), which includes 12 statements on a four- ratios, was performed to identify characteristics and the asso- point scale from 0 (not at all) to 3 (more than usual) (Goldberg ciation of QoL domains with the four COVID-19 questions. & Williams, 1988). The maximum score was 36. Higher The dichotomous answers from the COVID-19 questions scores indicated psychological distress. were the outcomes, and QoL domains and psychological dis- tress were predictors in the binary logistic regression. We Depressive Symptoms. We assessed depressive symptoms of adjusted for age and sex. A p-value of .05 or less was signifi- FCs using the 15-item Geriatric Depression Scale (GDS-15) cant, with a 95% confidence interval (CI). We identified only (Yesavage & Sheikh, 1986) with higher scores indicating a few missing values, without specific patterns. The data mild to severe depression. Therefore, we considered scores analysis was completed using SPSS statistical software from 0 to 4 as normal. (IBM SPSS Statistics for Windows, version 26.0). Quality of Life. FCs were interviewed based on their quality Qualitative analysis of life (QoL) using the World Health Organization Quality of Life (WHOQOL)-BREF questionnaire, a shortened ver- Open-ended answers were analyzed using modified thematic sion of the WHOQOL-100 questionnaire (World Health content analysis (Braun & Clarke, 2006; Vaismoradi et al., Organization, 1998). The WHOQOL-BREF includes 26 2013). This approach was used to identify, analyze, and questions and covers all four domains of QoL: (1) physical report identified patterns (themes) in the data (Braun & health, (2) psychological health, (3) social relationships, and Clarke, 2006). In the first phase of the analysis, open-ended (4) environment. answers were listed and read to understand the content. Then, 1816 Savela et al. Journal of Applied Gerontology 41(8) 5 Table 2. Associations between family caregivers’ four domains of quality of life and the COVID-19 questions. Questions QoL Domains B Sig. OR 95% CI for OR Sense of loneliness Physical 0.038 0.739 1.038 0.832 to 1.296 during the Psychological 0.110 0.493 1.116 0.815 to 1.528 COVID-19 Social −0.276 0.012* 0.759 0.612 to 0.941 Environmental −0.245 0.149 0.783 0.562 to 1.091 Increased sense of Physical −0.084 0.509 0.920 0.717 to 1.180 loneliness during the Psychological 0.053 0.771 1.055 0.737 to 1.511 COVID-19 Social −0.277 0.020* 0.758 0.600 to 0.958 Environmental −0.083 0.658 0.920 0.637 to 1.330 Worry about the Physical −0.212 0.050* 0.809 0.655 to 0.998 situation during the Psychological 0.231 0.124 1.259 0.939 to 1.689 COVID-19 Social −0.001 0.993 0.999 0.825 to 1.211 Environmental −0.266 0.100 0.766 0.558 to 1.052 Receiving (social) Physical −0.056 0.578 0.945 0.775 to 1.153 support during the Psychological −0.277 0.056 0.758 0.571 to 1.007 COVID-19 Social 0.084 0.354 1.088 0.911 to 1.299 Environmental 0.184 0.214 1.202 0.899 to 1.608 Note. Analyses were conducted using binary logistic regression analysis. CI = Confidence Interval. OR = Odds Ratio. QoL= Quality of Life. n = 101. n = 72. *p-value ≤ .05. the data were organized to see patterns in the content; the 21 (p = .041). Most of the FCs were female (72%) and lived in identified codes were used to compare similarities and differ- Kuopio (90%). Based on the descriptive analysis, approxi- ences regarding the answers. Next, one researcher (T.V) mately 27% of FCs experienced loneliness during the pan- formulated the themes based on the initial coding and the demic. However, a sense of loneliness occurred more frequently relation of the codes. The same researcher coded the among female than male FCs (p = .024). Moreover, 34% of interviews and conducted the analyses. Finally, the analysis FCs worried about the pandemic, and 36% experienced an formulated descriptive themes which were translated into increased sense of loneliness. Nevertheless, there were no English for reporting purposes. municipality-based differences in the sense of loneliness or worry. Please see Table 1. Results Quantitative results Description of the Sample The analyses showed that FCs’ sense of loneliness and A total of 101 FCs participated in this study. Their mean age worry were associated with higher scores for depression and was 76 years (SD = 7), and male FCs were significantly older Table 3. Themes and subthemes expressing family caregivers’ worries during the social isolation. Themes Subthemes 1. Impact of unpredictable epidemic Dangers of the COVID-19 Uncertainty 2. Belonging to a risk group Fear of the COVID-19 infection The anxiety of care recipient’s illness The impacts of restrictions 3. Emotional and physical isolation Being alone at home Constant worry Others’ indifferent to the risks of the COVID-19 Savela et al. 6 Journal of Applied Gerontology 1817 psychological distress, and lower scores for physical health occasionally placed CRs in short-term care during the pan- and social relationships in the WHOQOL-BREF. For exam- demic. FCs were anxious that CR could contract COVID-19 ple, higher scores for depression were associated with a during care. Examples of statements made by participants sense of loneliness (p = .029), increased sense of loneliness regarding the potential of getting or spreading COVID-19 (p = .022), and worry (p = .006) during the COVID-19 to CRs included: restrictions. The binary logistic regression analysis showed “I am part of the risk group. My husband is also part of the risk that higher scores for psychological distress (GHQ-12) pre- group, and I am afraid for him.” dicted sense of loneliness (OR = 1.17, 95% [CI 1.00, 1.37]) and worry (OR = 1.45, 95% CI [1.14, 1.85]) (data not “What if I fall ill and infect my husband?” shown). In addition, FCs’ sense of loneliness and worry “What if my spouse contracts the virus and might not survive it?” were associated with a decline in physical health and social relationships in the WHOQOL-BREF. Hence, lower scores The third theme focused on the emotional and physical for the social domain predicted a sense of loneliness (OR = isolation of FCs. Constantly staying at home made FCs feel 0.76, 95% CI [0.61, 0.94]) and increased sense of loneliness lonely. Coping day after day was exhausting and was associ- during the COVID-19 pandemic (OR = 0.76, 95% CI [0.60, ated with the fear of getting depressed. FCs were still longing 0.96]). In addition, lower scores for the physical domain to meet relatives and grandchildren, but the constant worry (OR = 0.81, 95% CI [0.66, 0.99]) predicted the FCs’ worry was present. Other people’s indifference to guidelines and about the situation. The environment or psychological recommendations to stay at home also irritated some FCs. health domains did not predict a sense of loneliness, worry, They responded by naming loneliness and coping when or social support (Table 2). asked what especially worried them. Qualitative results Experiences of support Experiences of worry. The qualitative results were based on The second open-ended question was: “Have you received two open-ended questions. The first open-ended question (social) support during the COVID-19 restrictions? If not, was, ”Are you worried about the situation regarding the what kind of support would you have needed?” Most FCs did COVID-19 pandemic? If yes, what specifically?” FCs’ not require any specific extra support. However, some of the answers were linked to three identified themes (Table 3). FCs would have needed more companionship, days off from The first theme included FCs’ awareness of COVID-19 caregiving, and food delivery at home. and anxiety about its severity. FCs are knowledgeable of threats that infection causes, which further increases uncer- tainty in everyday life. They expressed concern about how Study Integration society and the healthcare sector would manage through the Quantitative and qualitative data provided related evidence. unpredictable pandemic. They also reported that their CR’s For example, both analyses showed similar themes, includ- functional ability worsened during the stay-at-home restric- ing depressive symptoms, fear of depression, psychological tions. Examples of statements made by participants regard- distress, coping, a decline in physical health and social rela- ing their worry included: tionships, and emotional and physical isolation. However, “[Worry about] Spread of the COVID-19 infection and its the qualitative data provided a more detailed description. unpredictability, and the pandemic.” For example, the descriptive analysis revealed that approxi- mately one-third of the FCs were worried about COVID-19. “[Worry about] How will the COVID-19 spread? Will there be The qualitative analysis showed that they were worried another wave?” about loneliness, coping abilities, depression, COVID-19 “[Worry about] A disease that is unprecedented.” infection, and unpredictable consequences of the pandemic. Similarly, quantitative data showed that around 50% of FCs The second theme included FCs’ understanding of being did not receive any support during the pandemic. Again, at risk for COVID-19. They were concerned about getting qualitative data showed that FCs would have needed some the infection themselves or the CR. Hence, in FCs’ minds, services, including days off from caregiving, food delivery the potential risks and fatality of the infection were evi- at home, and companionship. dent. They feared getting a potentially fatal illness them- selves. Several expected concerns also arose among FCs Discussion about contracting the disease; they were fearful of infect- ing loved ones. These thoughts led to common fears about Approximately one-third of FCs reported loneliness and the CRs’ future. Some FCs have reported that their CR worry during social isolation, which were associated with depends on their health and well-being. In addition, FCs female sex, increased psychological distress and depressive 1818 Savela et al. Journal of Applied Gerontology 41(8) 7 symptoms, and decreased physical health and social relation- Community-based Programs. Our evidence shows that FCs ships. Moreover, FCs were aware of the consequences of experienced emotional and physical isolation and a decline in COVID-19. Thus, FCs understood that they were at risk and social relationships. Therefore, FCs should be more strongly were anxious about its severity. They further experienced integrated into society, communities, and support services as emotional and physical isolation. a post-pandemic act. Thus, previous evidence shows that Our evidence shows that the COVID-19 pandemic and its social integration has a protective impact on morbidity and measures and regulations have created new challenges. The mortality (Gerst-Emerson & Jayawardhana, 2015). There- pandemic has added extra mental and psychosocial loads to fore, community-based and intergenerational programs could older FCs. Similar results were found in a longitudinal cohort ensure greater inclusion in society after the pandemic. study of older adults in England (Zaninotto et al., 2022). Their well-being and mental health were affected by A Life-Course Approach. Our evidence showed that some FCs COVID-19. However, social isolation may have influenced experienced depressive symptoms, fear of depression and those already in a vulnerable position. coping abilities, and a decline in physical health. Therefore, In addition, our evidence showed that FCs required more we need more information regarding the abilities, physical companionship and days off from caregiving. This is in line and mental health, and background factors of FCs. Thus, it is with previous evidence showing that the pandemic has necessary to identify their vulnerabilities. This approach increased FCs’ burden compared to the pre-pandemic period requires “a life-course perspective” in healthcare, explicitly (Archer et al., 2021). Our findings suggest that the Finnish recognizing the causal links between exposures and out- government and municipalities have provided limited sup- comes within an individual’s life course (Solar & Irwin, port for FCs to maintain caregiving during the pandemic. 2010). In addition, assessing the social determinants of men- Many services were temporarily discontinued or deteriorated tal health should also be considered (Savela et al., 2022). in Finland. This suspension of services may show a lack of preparedness by the healthcare system to support vulnerable Online Services. The healthcare sector should consider online populations in exceptional circumstances. In addition, there services in the post-pandemic era. For instance, FCs of older may have been limited healthcare guidelines. For example, adults could receive health education, health services, and Finnish municipalities were less likely to provide new online social support through web-based applications. Hence, tech- technologies to support older adults during social isolation nology might increase the effectiveness of caregiving (Eronen et al., 2020). In addition, some online services tai- (Schulz et al., 2020). In addition, the technology could pro- lored for FCs were unsuitable and failed to deliver support vide physical and mental activities for FCs and CRs to during the pandemic (Eronen et al., 2020). maintain their well-being. Strengths and Limitations Recommendations The strengths of this study include validated measurement Policy Strengthening. While the Finnish Support for Informal tools for FCs’ psychological distress, depressive symptoms, Care Act of 2016 states that “The municipality must, if neces- and quality of life. In addition, a trained study team collected sary, arrange welfare and health examinations for the care- data during the social isolation of FCs, and the COVID-19 giver and social and health services that support his or her restrictions were ongoing. This data collection period reduces well-being and care duties” (Act on Support for Informal recall bias in FCs’ experiences regarding their loneliness and Care, 2005), FCs’ rights and support may not be fully cov- worry. The mixed-method research approach also combines ered. Hence, the current Act may lead to the unequal provi- both quantitative and qualitative data, balancing the limita- sion of FC services by different municipalities. Furthermore, tions of each method. In addition, the open-ended questions the statute does not require municipalities to provide ongoing had significant value because the study participants could support or mental health services without FC’s demand or provide more information on their experiences. However, identified needs. However, previous evidence shows that this study also had several limitations. older adults struggle to seek mental health services because of First, this was a cross-sectional study, presenting the study several barriers, namely stigma, poor mental health literacy, participants at one point. This means we cannot draw causal and identification of mental health challenges as a natural part conclusions between FCs’ loneliness and worry and the asso- of aging (Pywell et al., 2020; Titov et al., 2016). Therefore, as ciated factors. In addition, we did not use validated tools to part of the post-pandemic acts, it is necessary to strengthen assess loneliness and worry. Instead, we assessed these experi- the statutes regarding socially vulnerable populations. For ences using a dichotomous answer format, limiting the assess- instance, in Finland, it is necessary to consider removing ment of various dimensions and experiences of loneliness and ambiguity (i.e., “if necessary”) in the Act. Hence, strengthen- worry. We identified this procedure as a significant limitation ing laws related to healthcare services could reduce barriers to of this study. In addition, one researcher translated only the seeking help for mental health and improve social inclusion themes of qualitative analysis into English. Moreover, we may and health equity. have recruited only those FCs who were healthy enough to Savela et al. 8 Journal of Applied Gerontology 1819 take part. In addition, CRs were often present during the inter- Archer, J., Reiboldt, W., Claver, M., & Fay, J. (2021). Caregiving in quar- antine: Evaluating the impact of the Covid-19 pandemic on adult views, which could have affected the FCs’ answers. child informal caregivers of a parent. Gerontology and Geriatric Second, we recognize the challenge of interviewing older Medicine, 7, 1–7. https://doi.org/10.1177/2333721421990150 adults at their homes during the pandemic. Therefore, we Armitage, R., & Nellums, L. B. (2020). COVID-19 and the conse- ensured the subjects’ agreement to continue home visits. In quences of isolating the elderly. The Lancet Public Health, 5(5), addition, the study participants were aware of the study pro- Article e256. https://doi.org/10.1016/S2468-2667(20)30061-X cess and its purposes. They were also familiar with the home Beach, S. R., Schulz, R., Donovan, H., & Rosland, A.-M. (2021). visits by the research team. The research team also had the Family caregiving during the COVID-19 pandemic. The university’s consent to continue the study. Gerontologist, 61(5), 650–660. doi: 10.1093/geront/gnab049. https://doi.org/10.1093/geront/gnab049 Conclusion Braun, V., & Clarke, V. (2006). Using thematic analysis in psychol- ogy. Qualitative Research in Psychology, 3(2), 77–101. https:// FCs have had several negative experiences during the pan doi.org/10.1191/1478088706qp063oa demic. We highlight the need to enhance and re-evaluate the Dahlberg, L., McKee, K. J., Frank, A., & Naseer, M. (2022). A policies and support services, including implementing com- systematic review of longitudinal risk factors for loneliness in munity-based programs, ensuring support services, provid- older adults. Aging & Mental Health, 26(2), 225–249. https:// ing mental health facilities through online services, and doi.org/10.1080/13607863.2021.1876638 implementing a more robust life-course approach in health Dorn, A. van, Cooney, R. E., & Sabin, M. L. (2020). COVID-19 care to maintain FCs’ well-being. exacerbating inequalities in the US. The Lancet, 395(10232), 1243–1244. https://doi.org/10.1016/S0140-6736(20)30893-X Acknowledgments Drennan, J., Treacy, M., Butler, M., Byrne, A., Fealy, G., Frazer, K., Irving, K. (2008). The experience of social and emotional lone- The authors would like to thank all the family caregivers and care liness among older people in Ireland. Ageing and Society, 28(8), recipients who participated in the study. 1113-1132. https://doi.org/10.1017/S0144686X08007526 Eronen, A., Hiilamo, H., Ilmarinen, K., Jokela, M., Karjalainen, Declaration of conflicting interests P., Karvonen, S., Kivipelto, M., Koponen, E., Leemann, L., The author(s) declared the following potential conflicts of interest Londén, P., & Saikku, P. (2020). Social barometer 2020. with respect to the research, authorship, and/or publication of this SOSTE Finnish Social and Health Association article: Tarja Välimäki is a board member of Carers Finland. Frangiosa, T., Biggar, V., Comer, M., & Roniger, A. (2020). Research survey series shows effects of COVID-19 shutdowns Funding on Alzheimer’s community, with especially high stress on care- givers. Advances in Geriatric Medicine and Research, 2(3), The author(s) disclosed receipt of the following financial support e200020. https://doi.org/10.20900/agmr20200020 for the research, authorship, and/or publication of this article: The Gerst-Emerson, K., & Jayawardhana, J. (2015). Loneliness as a pub- LENTO research is funded by Sirkka and Jorma Turunen lic health issue: the impact of loneliness on health care utilization Foundation. The first author received funding from Jenny and Antti among older adults. American Journal of Public Health, 105(5), Wihuri Foundation. 1013–1019. https://doi.org/10.2105/AJPH.2014.302427 Goldberg, D. P., & Williams, P. (1988). A users’ guide to the gen- Ethical approval eral health questionnaire. NFER-NELSON. This research is part of the LENTO (Lifestyle, nutrition, and oral Gorenko, J. A., Moran, C., Flynn, M., Dobson, K., & Konnert, C. health in caregivers) research in collaboration with the University (2021). Social isolation and psychological distress among older of Eastern Finland, Kuopio University Hospital, and the munici adults related to COVID-19: a narrative review of remotely- palities of Kuopio and Vesanto. The Research Ethics Committee of delivered interventions and recommendations. Journal of the Northern Savo Hospital District reviewed the ethical issues Applied Gerontology, 40(1), 3–13. https://doi.org/10.1177/ involved in this research and gave a favorable opinion to carrying out the study. Trial registration: NCT04003493. The study followed National Academies of Sciences, Engineering, and Medicine guidelines determined in the Declaration of Helsinki. Written (NASEM) (2016). Families caring for an aging America. In informed consent was obtained from all study participants. R. Schulz & J. Eden (Eds.). The National Academies Press. https://doi.org/10.17226/23606 ORCID iDs National Academies of Sciences, Engineering, and Medicine, (NASEM) (2020). Social isolation and loneliness in older adults Roosa-Maria Savela https://orcid.org/0000-0003-2177-5609 (2). National Academies Press. https://doi.org/10.17226/25663 Sohvi Koponen https://orcid.org/0000-0002-9874-9188 Nykänen, I., Välimäki, T., Suominen, L., & Schwab, U. (2021). Optimizing nutrition and oral health for caregivers—inter- Supplemental Material vention protocol. Trials, 22(1), 625. https://doi.org/10.1186/ Supplemental material for this article is available online. s13063-021-05589-8 Park, S. S. (2021). Caregivers’ mental health and somatic symp- References toms during COVID-19. The Journals of Gerontology: Series B, 76(4), e235–e240. https://doi.org/10.1093/geronb/gbaa121 Act on Support for Informal Care (2005). Finlex. Pub. L. No. 937 Perlman, D., & Peplau, L. A. (1982). Theoretical approaches to /2005. Ministry of Social Affairs and Health. https://www.finlex. loneliness. In D. Perlman & L. A. Peplau (Eds.), Loneliness: fi/en/laki/kaannokset/2005/en20050937 1820 Savela et al. Journal of Applied Gerontology 41(8) 9 A Sourcebook of Current Theory, Research and Therapy descriptive study. Nursing and Health Sciences, 15(3), 398–405. (Issue January) (pp. 123–134). Springer. http://link.springer. https://doi.org/10.1111/nhs.12048 com/10.1007/978-1-4612-2622-2_1 Välimäki, T. H., Martikainen, J. A., Hongisto, K., Väätäinen, S., Perlman, D., & Peplau, L. A. (1998). Loneliness. In H. S. Friedman Sintonen, H., & Koivisto, A. M. (2016). Impact of Alzheimer’s (Ed.), (2).Encyclopedia of mental health disease on the family caregiver’s long-term quality of life: Pywell, J., Vijaykumar, S., Dodd, A., & Coventry, L. (2020). results from an ALSOVA follow-up study. Quality of Life Barriers to older adults’ uptake of mobile-based mental Research, 25(3), 687–697. https://doi.org/10.1007/s11136- health interventions. Digital Health, 6, 1-15. https://doi.org/ 015-1100-x 10.1177/2055207620905422 Vandenbroucke, J. P., Von Elm, E., Altman, D. G., Gøtzsche, P. Saadi, J. P., Carr, E., Fleischmann, M., Murray, E., Head, J., C., Mulrow, C. D., Pocock, S. J., Poole, C., Schlesselman, Steptoe, A., Hackett, R. A., Xue, B., & Cadar, D. (2021). The J. J., & Egger, M. (2007). Strengthening the Reporting role of loneliness in the development of depressive symptoms of Observational Studies in Epidemiology (STROBE): among partnered dementia caregivers: Evidence from the Explanation and elaboration. PLoS Medicine, 4(10), Article English Longitudinal Study of Aging. European Psychiatry, e297. https://doi.org/10.1371/journal.pmed.0040297 64(1), e28. https://doi.org/10.1192/j.eurpsy.2021.20 Verity, R., Okell, L. C., Dorigatti, I., Winskill, P., Whittaker, C., Savela, R., Schwab, U., & Välimäki, T. (2022). An integrative Imai, N., Cuomo-Dannenburg, G., Thompson, H., Walker, P. review of the social determinants of mental health among G. T., Fu, H., Dighe, A., Griffin, J. T., Baguelin, M., Bhatia, older caregivers. Nursing Open, 9(1), 94–107. https://doi. S., Boonyasiri, A., Cori, A., Cucunubá, Z., FitzJohn, R., org/10.1002/nop2.1094 Gaythorpe, K., & Ferguson, N. M. (2020). Estimates of the Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M., & Monin, J. K. severity of coronavirus disease 2019: a model-based analysis. (2020). Family caregiving for older adults. Annual Review of The Lancet Infectious Diseases, 20(6), 669–677. https://doi. Psychology, 71(1), 635–659. https://doi.org/10.1146/annurev- org/10.1016/S1473-3099(20)30243-7 psych-010419-050754 Victor, C.R., Rippon, I., Quinn, C., Nelis, S.M., Martyr, A., Hart, Sheth, K., Lorig, K., Stewart, A., Parodi, J. F., & Ritter, P. L. N., Lamont, R., Clare, L., on behalf of the IDEAL Programme (2021). Effects of COVID-19 on informal caregivers and Team. (2021). The prevalence and predictors of loneliness in the development and validation of a scale in English and caregivers of people with dementia: findings from the IDEAL Spanish to measure the impact of COVID-19 on caregivers. Journal of Applied Gerontology, 40(3), 235–243. https://doi. programme. Aging & Mental Health 25(7), 1232–1238. org/10.1177/0733464820971511 https://doi.org/10.1080/13607863.2020.1753014 Solar, O., & Irwin, A. (2010). A conceptual framework for action Wagner, M., & Brandt, M. (2018). Long-term care provision on the social determinants of health Social Determinants and the well-being of spousal caregivers: an analysis of 138 of Health Discussion Paper 2 (Policy and Practice). World European regions. The Journals of Gerontology: Series B, Health Organization. 73(4), Article e24–e34. doi: 10.1093/geronb/gbx133. https:// Titov, N., Fogliati, V. J., Staples, L. G., Gandy, M., Johnston, L., doi.org/10.1093/geronb/gbx133 Wootton, B., Nielssen, O., & Dear, B. F. (2016). Treating anxi- Weiss, R. S. (1973). Loneliness: The experience of emotional and ety and depression in older adults: randomised controlled trial social isolation. MIT Press comparing guided v. self-guided internet-delivered cognitive– World Health Organization (1998). WHOQOL: measuring quality behavioural therapy. BJPsych Open, 2(1), 50–58. https://doi. of life. Psychol Med. org/10.1192/bjpo.bp.115.002139 World Health Organization (2020). Guidance on COVID-19 for Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria the care of older people and people living in long-term care for reporting qualitative research (COREQ): a 32-item check- facilities, other non-acute care facilities and home care. list for interviews and focus groups. International Journal World Health Organization. https://apps.who.int/iris/han- for Quality in Health Care, 19(6), 349–357. https://doi. dle/10665/331913 org/10.1093/intqhc/mzm042 Yesavage, J. A., & Sheikh, J. I. (1986). 9/Geriatric Depression Tuijt, R., Frost, R., Wilcock, J., Robinson, L., Manthorpe, J., Rait, Scale (GDS). Clinical Gerontologist, 5(1–2), 165–173. https:// G., & Walters, K. (2021). Life under lockdown and social doi.org/10.1300/J018v05n01_09 restrictions - the experiences of people living with dementia Zaninotto, P., Iob, E., Demakakos, P., & Steptoe, A. (2022). and their carers during the COVID-19 pandemic in England. Immediate and longer-term changes in the mental health and BMC Geriatrics, 21(1), 301. https://doi.org/10.1186/s12877- well-being of older adults in England during the COVID-19 021-02257-z pandemic. JAMA Psychiatry, 79(2), 151–159. https://doi. Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis org/10.1001/jamapsychiatry.2021.3749 and thematic analysis: Implications for conducting a qualitative http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Applied Gerontology SAGE

Addressing the Experiences of Family Caregivers of Older Adults During the COVID-19 Pandemic in Finland

Loading next page...
 
/lp/sage/addressing-the-experiences-of-family-caregivers-of-older-adults-during-VhGsp0hv0S

References (82)

Publisher
SAGE
Copyright
© The Author(s) 2022
ISSN
0733-4648
eISSN
1552-4523
DOI
10.1177/07334648221095510
Publisher site
See Article on Publisher Site

Abstract

This cross-sectional study assessed the experiences of family caregivers of older adults during the COVID-19 pandemic. Participants were recruited (n = 101) between April and December 2019. We applied a mixed-method approach. Quantitative data were analyzed using an independent samples t-test and logistic regression analysis, and qualitative experiences with modified thematic content analysis. The mean age of the family caregivers was 76 years (SD = 7), and 72% were females. Experiences of loneliness and worry during the pandemic were evaluated by self-assessment. Approximately one-third of the participants reported loneliness and worry. These experiences were further associated with female sex, increased psychological distress and depressive symptoms, and decreased physical condition and social relationships. Family caregivers were also worried about the pandemic’s impact on health and well-being. Thus, the COVID-19 pandemic has added an extra psychosocial load to family caregivers. The post-pandemic era requires increased attention to re-evaluating policies and services. Keywords caregiving, COVID-19, loneliness, social isolation What this paper adds •• Our study adds to the existing literature by assessing how social isolation due to the pandemic has affected the well-being of family caregivers who take care of older adults. •• The COVID-19 pandemic and its measures and regulations have created new challenges and needs for family caregivers. •• The pandemic has added extra mental and psychosocial loads to older family caregivers, including worry and a sense of loneliness. Applications of study findings •• There is a need to enhance and re-evaluate the policies and support services regarding socially vulnerable populations. •• Implementing community-based programs, ensuring support services, providing mental health facilities through online services, and implementing a stronger life-course approach in healthcare to maintain family caregivers’ well-being should be considered. Manuscript received: November 2, 2021; final revision received: Department of Oral and Maxillofacial Diseases, Kuopio University March 24, 2022; accepted: March 30, 2022. Hospital, Kuopio, Finland Department of Medicine, Endocrinology and Clinical Nutrition, Kuopio Department of Nursing Science, University of Eastern Finland, Kuopio, University Hospital, Kuopio, Finland Finland Institute of Public Health and Clinical Nutrition, University of Eastern Corresponding Author: Finland, Kuopio, Finland Roosa-Maria Savela, Department of Nursing Science, University of Eastern Institute of Dentistry, School of Medicine, University of Eastern Finland, Finland, Yliopistonranta 1C, Kuopio 70600, Finland. Kuopio, Finland Email: roosa-maria.savela@uef.fi Savela et al. 2 Journal of Applied Gerontology 1813 The coronavirus (COVID-19) pandemic has changed our risk factors include experiences of depression, not being mar- lives and has caused several adverse effects on health and ried/partnered, and partner loss (Dahlberg et al., 2022). In addi- well-being. It is well documented that the impacts have been tion, some researchers have examined the association between significant on individuals’ social relationships, and physical loneliness, social isolation, and family caregiving. For exam- and mental health (Beach et al., 2021; Zaninotto et al., 2022). ple, spousal caregivers might experience more loneliness, The consequences of the pandemic have been noteworthy in depression, and lower life satisfaction than non-caregivers vulnerable populations, increasing existing health inequali- (Wagner & Brandt, 2018). In addition, caregivers of those with ties (Dorn et al., 2020). dementia may have higher odds of depressive symptoms com- COVID-19 can be severe for persons of any age. However, pared to non-caregiving partners, partly mediated by loneliness older adults are at a greater risk of serious illness and death (Saadi et al., 2021). In addition, a prior study indicated that (Verity et al., 2020). Therefore, the pandemic has forced caregivers of those with dementia have greater social isolation measures and regulations to limit the spread of the virus to and increased caregiving stress associated with loneliness protect vulnerable populations. These regulations have (Victor et al., 2021). meant the physical distancing and social isolation of older However, the loneliness and distress of FCs of older adults adults (Armitage & Nellums, 2020; Tuijt et al., 2021). have not been explicitly evaluated in previous intervention However, while physical distancing is effective in infection reviews (Gorenko et al., 2021). Moreover, there is still limited prevention (World Health Organization, 2020), it has caused evidence of FCs’ concerns, loneliness, and social support dur- mental health outcomes. In short, social isolation among ing COVID-19. Some pandemic-related evidence has focused older adults has been defined as a severe public health con- on FCs caring for a person affected by Alzheimer’s disease cern (Armitage & Nellums, 2020). Hence, their social isola- and other forms of dementia (Frangiosa et al., 2020) and tion may lead to poorer mental health and well-being, which assessed differences between subgroups of caregivers and is in turn linked to a decline in physical health and cognition non-caregivers (Park, 2021). Similarly, pandemic-related evi- (National Academies of Sciences, Engineering, and dence has assessed caregivers’ self-efficacy and stress (Sheth Medicine, 2020). Therefore, the situation has increased inter- et al., 2021) and used a quantitative research method to est in the well-being of older family caregivers (FCs). assess the pandemic’s effects (Beach et al., 2021). Partners, relatives, friends, or neighbors to individuals Our study adds to the existing literature by assessing how with physical, mental, or cognitive challenges usually pro- social isolation due to the pandemic has affected the well- vide family caregiving (Schulz et al., 2020). Unfortunately, being of FCs who take care of older adults with various several studies have shown that some caregivers have poorer health conditions. The primary aim was to assess FCs’ expe- health outcomes than non-caregivers. These outcomes riences during the pandemic. We used a mixed-methods include lower quality of life (Välimäki et al., 2016), higher study design and examined FCs’ experiences regarding lone- rates of psychological distress (Schulz et al., 2020), and liness, worry, social support, and related factors. These fac- poorer physical and mental health (National Academies of tors include sociodemographic features (e.g., rural and urban Sciences, Engineering, and Medicine, 2016). municipalities), psychological distress, depressive symp- The pandemic and the resulting social isolation may have toms, and quality of life. worsened FCs’ well-being. Thus, prior evidence shows that loneliness and social isolation are associated with negative Methods health outcomes (National Academies of Sciences, Engineering, and Medicine, 2020). However, social isolation This cross-sectional study used a mixed-method approach to is distinct from loneliness. In brief, social isolation refers to assess FCs’ experiences during the COVID-19 pandemic. This “the objective situation of being alone or lacking social rela- study is part of the randomized population-based multidisci- tionships” (Perlman & Peplau, 1998, p. 571). In contrast, plinary lifestyle, nutrition, and oral health in caregivers loneliness is commonly defined as “the subjective psycho- (LENTO) study (Nykänen et al., 2021). We did not initially pro- logical discomfort experienced by people when their net- pose to assess the effects of COVID-19. However, questions on work of social relationships is significantly deficient in either the experiences of loneliness, worry, and social support were quality or quantity” (Perlman & Peplau, 1998, p. 571). included when the first wave of the pandemic and social isola- Sometimes, loneliness is divided into two key dimensions: tion started in Finland (March 2020). Thus, there was an impres- emotional and social loneliness (Perlman & Peplau, 1982; sion of dramatic changes in the lives of older adults. Weiss, 1973), where emotional loneliness refers to a lack of close emotional attachment, and social loneliness refers to Sample the absence of an adequate social network (Weiss, 1973). Previous evidence shows that loneliness in older adults is We recruited participants between April and December 2019 complex. Several factors, including increasing age, income, from two municipalities in the northern Savo Province, health status, place of residence, and contact with friends and Finland. The inclusion criteria of FCs were those who lived family, affect loneliness (Drennan et al., 2008). Other identified in the municipality of Kuopio (urban municipality) or 1814 Savela et al. Journal of Applied Gerontology 41(8) 3 Figure 1. The STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) flow chart of the study sample. Vesanto (rural municipality), had a valid care allowance We collected both quantitative and qualitative data. granted by municipalities, and took care of a person aged 65 Therefore, the checklists of Strengthening the Reporting of or older. However, FCs who took care of care recipients (CR) Observational Studies in Epidemiology (STROBE) and with end-of-life care were excluded. Otherwise, there were Consolidated Criteria for Reporting Qualitative Research no exclusion criteria regarding the study participants’ maxi- (COREQ) were followed (Tong et al., 2007; Vandenbroucke mum age, morbidity, or cognition. et al., 2007). Data collection began during the first and sec- We recruited participants in collaboration with the munic- ond pandemic waves, between June and December 2020, at ipalities’ social and healthcare workers. Thus, all FCs with a FCs’ households. We used personal protective equipment care allowance are in the municipalities’ registers. The and maintained social distancing during home visits. municipality workers provided addresses of the eligible pop- However, some interviews were also conducted outdoors ulation based on the inclusion criteria. The research team because of the participants’ wishes. sent letters to these FCs. Of the 449 eligible participants, 126 agreed to participate in the study. Of this population, 101 Measurements (80%) answered the COVID-19 questionnaire (Figure 1). Sociodemographic Factors. The study nurse collected infor- mation on the FCs’ background factors, including age, sex Data Collection (female/male), and area of residence (Kuopio/Vesanto). This study collected the quantitative and qualitative data in Finnish. These included questions on sociodemographic fac- Experiences during the COVID-19. We interviewed FCs based tors and validated questions on psychological distress, depres- on their experiences regarding the COVID-19 pandemic. sive symptoms, and quality of life. In addition, researchers We had four dichotomous questions (yes/no), and some of provided questions on experiences regarding loneliness, them were followed by an open-ended question. The four worry, and social support. These questions were not pilot questions were (1) “Have you felt loneliness during the tested. The duration of the interviews was approximately COVID-19 restrictions?” (n = 101), (2) “Has your loneli- 30 minutes. A trained study nurse and other trained members ness increased during the COVID-19 restrictions?” (n = 72, of the research team performed these measurements. response rate 71%), (3) “Are you worried about the situation Savela et al. 4 Journal of Applied Gerontology 1815 Table 1. Characteristics of family caregivers. Sociodemographic Characteristics n = 101 Females, n (%) 73 (72%) Area of living, n (%) Kuopio 91 (90%) Vesanto 10 (10%) Age, mean (SD), years 76 (7) Females 75 (6) Males 78 (7) Experiences regarding the COVID-19 pandemic, n (%) n = 101 Have you felt loneliness during the COVID-19 restrictions? Yes 27 (27%) No 74 (73%) Has your loneliness increased during the COVID-19 restrictions? (n=72) Yes 26 (36%) No 46 (64%) Are you worried about the situation regarding the COVID-19 pandemic? Yes 34 (34%) No 67 (66%) Have you received (social) support during the COVID-19 restrictions? Yes 52 (51%) No 49 (49%) Note. SD = standard deviation. Descriptive statistics for continuous (mean, SD) and categorical variables (n, %). regarding the COVID-19 pandemic? (n = 101) If yes, what Data Analysis specifically?” and (4) “Have you received (social) support Quantitative analysis. First, we performed descriptive analy- during the COVID-19 restrictions? (n = 101) If not, what ses to summarize the results using numbers, percentages, kind of support would you have needed?” The authors used means (M), and standard deviations (SD). Before data analy- these questions to obtain a diverse perspective on FCs’ ses, we examined the normality of data variables using the experiences. Kolmogorov-Smirnov test. Then, statistical comparisons between the characteristics were made using the independent Psychological Distress. The psychological distress of FCs was samples t-test or alternative test (i.e., Mann-Whitney U test). assessed with a valid and reliable General Health Question- In addition, binary logistic regression, expressed in odds naire (GHQ-12), which includes 12 statements on a four- ratios, was performed to identify characteristics and the asso- point scale from 0 (not at all) to 3 (more than usual) (Goldberg ciation of QoL domains with the four COVID-19 questions. & Williams, 1988). The maximum score was 36. Higher The dichotomous answers from the COVID-19 questions scores indicated psychological distress. were the outcomes, and QoL domains and psychological dis- tress were predictors in the binary logistic regression. We Depressive Symptoms. We assessed depressive symptoms of adjusted for age and sex. A p-value of .05 or less was signifi- FCs using the 15-item Geriatric Depression Scale (GDS-15) cant, with a 95% confidence interval (CI). We identified only (Yesavage & Sheikh, 1986) with higher scores indicating a few missing values, without specific patterns. The data mild to severe depression. Therefore, we considered scores analysis was completed using SPSS statistical software from 0 to 4 as normal. (IBM SPSS Statistics for Windows, version 26.0). Quality of Life. FCs were interviewed based on their quality Qualitative analysis of life (QoL) using the World Health Organization Quality of Life (WHOQOL)-BREF questionnaire, a shortened ver- Open-ended answers were analyzed using modified thematic sion of the WHOQOL-100 questionnaire (World Health content analysis (Braun & Clarke, 2006; Vaismoradi et al., Organization, 1998). The WHOQOL-BREF includes 26 2013). This approach was used to identify, analyze, and questions and covers all four domains of QoL: (1) physical report identified patterns (themes) in the data (Braun & health, (2) psychological health, (3) social relationships, and Clarke, 2006). In the first phase of the analysis, open-ended (4) environment. answers were listed and read to understand the content. Then, 1816 Savela et al. Journal of Applied Gerontology 41(8) 5 Table 2. Associations between family caregivers’ four domains of quality of life and the COVID-19 questions. Questions QoL Domains B Sig. OR 95% CI for OR Sense of loneliness Physical 0.038 0.739 1.038 0.832 to 1.296 during the Psychological 0.110 0.493 1.116 0.815 to 1.528 COVID-19 Social −0.276 0.012* 0.759 0.612 to 0.941 Environmental −0.245 0.149 0.783 0.562 to 1.091 Increased sense of Physical −0.084 0.509 0.920 0.717 to 1.180 loneliness during the Psychological 0.053 0.771 1.055 0.737 to 1.511 COVID-19 Social −0.277 0.020* 0.758 0.600 to 0.958 Environmental −0.083 0.658 0.920 0.637 to 1.330 Worry about the Physical −0.212 0.050* 0.809 0.655 to 0.998 situation during the Psychological 0.231 0.124 1.259 0.939 to 1.689 COVID-19 Social −0.001 0.993 0.999 0.825 to 1.211 Environmental −0.266 0.100 0.766 0.558 to 1.052 Receiving (social) Physical −0.056 0.578 0.945 0.775 to 1.153 support during the Psychological −0.277 0.056 0.758 0.571 to 1.007 COVID-19 Social 0.084 0.354 1.088 0.911 to 1.299 Environmental 0.184 0.214 1.202 0.899 to 1.608 Note. Analyses were conducted using binary logistic regression analysis. CI = Confidence Interval. OR = Odds Ratio. QoL= Quality of Life. n = 101. n = 72. *p-value ≤ .05. the data were organized to see patterns in the content; the 21 (p = .041). Most of the FCs were female (72%) and lived in identified codes were used to compare similarities and differ- Kuopio (90%). Based on the descriptive analysis, approxi- ences regarding the answers. Next, one researcher (T.V) mately 27% of FCs experienced loneliness during the pan- formulated the themes based on the initial coding and the demic. However, a sense of loneliness occurred more frequently relation of the codes. The same researcher coded the among female than male FCs (p = .024). Moreover, 34% of interviews and conducted the analyses. Finally, the analysis FCs worried about the pandemic, and 36% experienced an formulated descriptive themes which were translated into increased sense of loneliness. Nevertheless, there were no English for reporting purposes. municipality-based differences in the sense of loneliness or worry. Please see Table 1. Results Quantitative results Description of the Sample The analyses showed that FCs’ sense of loneliness and A total of 101 FCs participated in this study. Their mean age worry were associated with higher scores for depression and was 76 years (SD = 7), and male FCs were significantly older Table 3. Themes and subthemes expressing family caregivers’ worries during the social isolation. Themes Subthemes 1. Impact of unpredictable epidemic Dangers of the COVID-19 Uncertainty 2. Belonging to a risk group Fear of the COVID-19 infection The anxiety of care recipient’s illness The impacts of restrictions 3. Emotional and physical isolation Being alone at home Constant worry Others’ indifferent to the risks of the COVID-19 Savela et al. 6 Journal of Applied Gerontology 1817 psychological distress, and lower scores for physical health occasionally placed CRs in short-term care during the pan- and social relationships in the WHOQOL-BREF. For exam- demic. FCs were anxious that CR could contract COVID-19 ple, higher scores for depression were associated with a during care. Examples of statements made by participants sense of loneliness (p = .029), increased sense of loneliness regarding the potential of getting or spreading COVID-19 (p = .022), and worry (p = .006) during the COVID-19 to CRs included: restrictions. The binary logistic regression analysis showed “I am part of the risk group. My husband is also part of the risk that higher scores for psychological distress (GHQ-12) pre- group, and I am afraid for him.” dicted sense of loneliness (OR = 1.17, 95% [CI 1.00, 1.37]) and worry (OR = 1.45, 95% CI [1.14, 1.85]) (data not “What if I fall ill and infect my husband?” shown). In addition, FCs’ sense of loneliness and worry “What if my spouse contracts the virus and might not survive it?” were associated with a decline in physical health and social relationships in the WHOQOL-BREF. Hence, lower scores The third theme focused on the emotional and physical for the social domain predicted a sense of loneliness (OR = isolation of FCs. Constantly staying at home made FCs feel 0.76, 95% CI [0.61, 0.94]) and increased sense of loneliness lonely. Coping day after day was exhausting and was associ- during the COVID-19 pandemic (OR = 0.76, 95% CI [0.60, ated with the fear of getting depressed. FCs were still longing 0.96]). In addition, lower scores for the physical domain to meet relatives and grandchildren, but the constant worry (OR = 0.81, 95% CI [0.66, 0.99]) predicted the FCs’ worry was present. Other people’s indifference to guidelines and about the situation. The environment or psychological recommendations to stay at home also irritated some FCs. health domains did not predict a sense of loneliness, worry, They responded by naming loneliness and coping when or social support (Table 2). asked what especially worried them. Qualitative results Experiences of support Experiences of worry. The qualitative results were based on The second open-ended question was: “Have you received two open-ended questions. The first open-ended question (social) support during the COVID-19 restrictions? If not, was, ”Are you worried about the situation regarding the what kind of support would you have needed?” Most FCs did COVID-19 pandemic? If yes, what specifically?” FCs’ not require any specific extra support. However, some of the answers were linked to three identified themes (Table 3). FCs would have needed more companionship, days off from The first theme included FCs’ awareness of COVID-19 caregiving, and food delivery at home. and anxiety about its severity. FCs are knowledgeable of threats that infection causes, which further increases uncer- tainty in everyday life. They expressed concern about how Study Integration society and the healthcare sector would manage through the Quantitative and qualitative data provided related evidence. unpredictable pandemic. They also reported that their CR’s For example, both analyses showed similar themes, includ- functional ability worsened during the stay-at-home restric- ing depressive symptoms, fear of depression, psychological tions. Examples of statements made by participants regard- distress, coping, a decline in physical health and social rela- ing their worry included: tionships, and emotional and physical isolation. However, “[Worry about] Spread of the COVID-19 infection and its the qualitative data provided a more detailed description. unpredictability, and the pandemic.” For example, the descriptive analysis revealed that approxi- mately one-third of the FCs were worried about COVID-19. “[Worry about] How will the COVID-19 spread? Will there be The qualitative analysis showed that they were worried another wave?” about loneliness, coping abilities, depression, COVID-19 “[Worry about] A disease that is unprecedented.” infection, and unpredictable consequences of the pandemic. Similarly, quantitative data showed that around 50% of FCs The second theme included FCs’ understanding of being did not receive any support during the pandemic. Again, at risk for COVID-19. They were concerned about getting qualitative data showed that FCs would have needed some the infection themselves or the CR. Hence, in FCs’ minds, services, including days off from caregiving, food delivery the potential risks and fatality of the infection were evi- at home, and companionship. dent. They feared getting a potentially fatal illness them- selves. Several expected concerns also arose among FCs Discussion about contracting the disease; they were fearful of infect- ing loved ones. These thoughts led to common fears about Approximately one-third of FCs reported loneliness and the CRs’ future. Some FCs have reported that their CR worry during social isolation, which were associated with depends on their health and well-being. In addition, FCs female sex, increased psychological distress and depressive 1818 Savela et al. Journal of Applied Gerontology 41(8) 7 symptoms, and decreased physical health and social relation- Community-based Programs. Our evidence shows that FCs ships. Moreover, FCs were aware of the consequences of experienced emotional and physical isolation and a decline in COVID-19. Thus, FCs understood that they were at risk and social relationships. Therefore, FCs should be more strongly were anxious about its severity. They further experienced integrated into society, communities, and support services as emotional and physical isolation. a post-pandemic act. Thus, previous evidence shows that Our evidence shows that the COVID-19 pandemic and its social integration has a protective impact on morbidity and measures and regulations have created new challenges. The mortality (Gerst-Emerson & Jayawardhana, 2015). There- pandemic has added extra mental and psychosocial loads to fore, community-based and intergenerational programs could older FCs. Similar results were found in a longitudinal cohort ensure greater inclusion in society after the pandemic. study of older adults in England (Zaninotto et al., 2022). Their well-being and mental health were affected by A Life-Course Approach. Our evidence showed that some FCs COVID-19. However, social isolation may have influenced experienced depressive symptoms, fear of depression and those already in a vulnerable position. coping abilities, and a decline in physical health. Therefore, In addition, our evidence showed that FCs required more we need more information regarding the abilities, physical companionship and days off from caregiving. This is in line and mental health, and background factors of FCs. Thus, it is with previous evidence showing that the pandemic has necessary to identify their vulnerabilities. This approach increased FCs’ burden compared to the pre-pandemic period requires “a life-course perspective” in healthcare, explicitly (Archer et al., 2021). Our findings suggest that the Finnish recognizing the causal links between exposures and out- government and municipalities have provided limited sup- comes within an individual’s life course (Solar & Irwin, port for FCs to maintain caregiving during the pandemic. 2010). In addition, assessing the social determinants of men- Many services were temporarily discontinued or deteriorated tal health should also be considered (Savela et al., 2022). in Finland. This suspension of services may show a lack of preparedness by the healthcare system to support vulnerable Online Services. The healthcare sector should consider online populations in exceptional circumstances. In addition, there services in the post-pandemic era. For instance, FCs of older may have been limited healthcare guidelines. For example, adults could receive health education, health services, and Finnish municipalities were less likely to provide new online social support through web-based applications. Hence, tech- technologies to support older adults during social isolation nology might increase the effectiveness of caregiving (Eronen et al., 2020). In addition, some online services tai- (Schulz et al., 2020). In addition, the technology could pro- lored for FCs were unsuitable and failed to deliver support vide physical and mental activities for FCs and CRs to during the pandemic (Eronen et al., 2020). maintain their well-being. Strengths and Limitations Recommendations The strengths of this study include validated measurement Policy Strengthening. While the Finnish Support for Informal tools for FCs’ psychological distress, depressive symptoms, Care Act of 2016 states that “The municipality must, if neces- and quality of life. In addition, a trained study team collected sary, arrange welfare and health examinations for the care- data during the social isolation of FCs, and the COVID-19 giver and social and health services that support his or her restrictions were ongoing. This data collection period reduces well-being and care duties” (Act on Support for Informal recall bias in FCs’ experiences regarding their loneliness and Care, 2005), FCs’ rights and support may not be fully cov- worry. The mixed-method research approach also combines ered. Hence, the current Act may lead to the unequal provi- both quantitative and qualitative data, balancing the limita- sion of FC services by different municipalities. Furthermore, tions of each method. In addition, the open-ended questions the statute does not require municipalities to provide ongoing had significant value because the study participants could support or mental health services without FC’s demand or provide more information on their experiences. However, identified needs. However, previous evidence shows that this study also had several limitations. older adults struggle to seek mental health services because of First, this was a cross-sectional study, presenting the study several barriers, namely stigma, poor mental health literacy, participants at one point. This means we cannot draw causal and identification of mental health challenges as a natural part conclusions between FCs’ loneliness and worry and the asso- of aging (Pywell et al., 2020; Titov et al., 2016). Therefore, as ciated factors. In addition, we did not use validated tools to part of the post-pandemic acts, it is necessary to strengthen assess loneliness and worry. Instead, we assessed these experi- the statutes regarding socially vulnerable populations. For ences using a dichotomous answer format, limiting the assess- instance, in Finland, it is necessary to consider removing ment of various dimensions and experiences of loneliness and ambiguity (i.e., “if necessary”) in the Act. Hence, strengthen- worry. We identified this procedure as a significant limitation ing laws related to healthcare services could reduce barriers to of this study. In addition, one researcher translated only the seeking help for mental health and improve social inclusion themes of qualitative analysis into English. Moreover, we may and health equity. have recruited only those FCs who were healthy enough to Savela et al. 8 Journal of Applied Gerontology 1819 take part. In addition, CRs were often present during the inter- Archer, J., Reiboldt, W., Claver, M., & Fay, J. (2021). Caregiving in quar- antine: Evaluating the impact of the Covid-19 pandemic on adult views, which could have affected the FCs’ answers. child informal caregivers of a parent. Gerontology and Geriatric Second, we recognize the challenge of interviewing older Medicine, 7, 1–7. https://doi.org/10.1177/2333721421990150 adults at their homes during the pandemic. Therefore, we Armitage, R., & Nellums, L. B. (2020). COVID-19 and the conse- ensured the subjects’ agreement to continue home visits. In quences of isolating the elderly. The Lancet Public Health, 5(5), addition, the study participants were aware of the study pro- Article e256. https://doi.org/10.1016/S2468-2667(20)30061-X cess and its purposes. They were also familiar with the home Beach, S. R., Schulz, R., Donovan, H., & Rosland, A.-M. (2021). visits by the research team. The research team also had the Family caregiving during the COVID-19 pandemic. The university’s consent to continue the study. Gerontologist, 61(5), 650–660. doi: 10.1093/geront/gnab049. https://doi.org/10.1093/geront/gnab049 Conclusion Braun, V., & Clarke, V. (2006). Using thematic analysis in psychol- ogy. Qualitative Research in Psychology, 3(2), 77–101. https:// FCs have had several negative experiences during the pan doi.org/10.1191/1478088706qp063oa demic. We highlight the need to enhance and re-evaluate the Dahlberg, L., McKee, K. J., Frank, A., & Naseer, M. (2022). A policies and support services, including implementing com- systematic review of longitudinal risk factors for loneliness in munity-based programs, ensuring support services, provid- older adults. Aging & Mental Health, 26(2), 225–249. https:// ing mental health facilities through online services, and doi.org/10.1080/13607863.2021.1876638 implementing a more robust life-course approach in health Dorn, A. van, Cooney, R. E., & Sabin, M. L. (2020). COVID-19 care to maintain FCs’ well-being. exacerbating inequalities in the US. The Lancet, 395(10232), 1243–1244. https://doi.org/10.1016/S0140-6736(20)30893-X Acknowledgments Drennan, J., Treacy, M., Butler, M., Byrne, A., Fealy, G., Frazer, K., Irving, K. (2008). The experience of social and emotional lone- The authors would like to thank all the family caregivers and care liness among older people in Ireland. Ageing and Society, 28(8), recipients who participated in the study. 1113-1132. https://doi.org/10.1017/S0144686X08007526 Eronen, A., Hiilamo, H., Ilmarinen, K., Jokela, M., Karjalainen, Declaration of conflicting interests P., Karvonen, S., Kivipelto, M., Koponen, E., Leemann, L., The author(s) declared the following potential conflicts of interest Londén, P., & Saikku, P. (2020). Social barometer 2020. with respect to the research, authorship, and/or publication of this SOSTE Finnish Social and Health Association article: Tarja Välimäki is a board member of Carers Finland. Frangiosa, T., Biggar, V., Comer, M., & Roniger, A. (2020). Research survey series shows effects of COVID-19 shutdowns Funding on Alzheimer’s community, with especially high stress on care- givers. Advances in Geriatric Medicine and Research, 2(3), The author(s) disclosed receipt of the following financial support e200020. https://doi.org/10.20900/agmr20200020 for the research, authorship, and/or publication of this article: The Gerst-Emerson, K., & Jayawardhana, J. (2015). Loneliness as a pub- LENTO research is funded by Sirkka and Jorma Turunen lic health issue: the impact of loneliness on health care utilization Foundation. The first author received funding from Jenny and Antti among older adults. American Journal of Public Health, 105(5), Wihuri Foundation. 1013–1019. https://doi.org/10.2105/AJPH.2014.302427 Goldberg, D. P., & Williams, P. (1988). A users’ guide to the gen- Ethical approval eral health questionnaire. NFER-NELSON. This research is part of the LENTO (Lifestyle, nutrition, and oral Gorenko, J. A., Moran, C., Flynn, M., Dobson, K., & Konnert, C. health in caregivers) research in collaboration with the University (2021). Social isolation and psychological distress among older of Eastern Finland, Kuopio University Hospital, and the munici adults related to COVID-19: a narrative review of remotely- palities of Kuopio and Vesanto. The Research Ethics Committee of delivered interventions and recommendations. Journal of the Northern Savo Hospital District reviewed the ethical issues Applied Gerontology, 40(1), 3–13. https://doi.org/10.1177/ involved in this research and gave a favorable opinion to carrying out the study. Trial registration: NCT04003493. The study followed National Academies of Sciences, Engineering, and Medicine guidelines determined in the Declaration of Helsinki. Written (NASEM) (2016). Families caring for an aging America. In informed consent was obtained from all study participants. R. Schulz & J. Eden (Eds.). The National Academies Press. https://doi.org/10.17226/23606 ORCID iDs National Academies of Sciences, Engineering, and Medicine, (NASEM) (2020). Social isolation and loneliness in older adults Roosa-Maria Savela https://orcid.org/0000-0003-2177-5609 (2). National Academies Press. https://doi.org/10.17226/25663 Sohvi Koponen https://orcid.org/0000-0002-9874-9188 Nykänen, I., Välimäki, T., Suominen, L., & Schwab, U. (2021). Optimizing nutrition and oral health for caregivers—inter- Supplemental Material vention protocol. Trials, 22(1), 625. https://doi.org/10.1186/ Supplemental material for this article is available online. s13063-021-05589-8 Park, S. S. (2021). Caregivers’ mental health and somatic symp- References toms during COVID-19. The Journals of Gerontology: Series B, 76(4), e235–e240. https://doi.org/10.1093/geronb/gbaa121 Act on Support for Informal Care (2005). Finlex. Pub. L. No. 937 Perlman, D., & Peplau, L. A. (1982). Theoretical approaches to /2005. Ministry of Social Affairs and Health. https://www.finlex. loneliness. In D. Perlman & L. A. Peplau (Eds.), Loneliness: fi/en/laki/kaannokset/2005/en20050937 1820 Savela et al. Journal of Applied Gerontology 41(8) 9 A Sourcebook of Current Theory, Research and Therapy descriptive study. Nursing and Health Sciences, 15(3), 398–405. (Issue January) (pp. 123–134). Springer. http://link.springer. https://doi.org/10.1111/nhs.12048 com/10.1007/978-1-4612-2622-2_1 Välimäki, T. H., Martikainen, J. A., Hongisto, K., Väätäinen, S., Perlman, D., & Peplau, L. A. (1998). Loneliness. In H. S. Friedman Sintonen, H., & Koivisto, A. M. (2016). Impact of Alzheimer’s (Ed.), (2).Encyclopedia of mental health disease on the family caregiver’s long-term quality of life: Pywell, J., Vijaykumar, S., Dodd, A., & Coventry, L. (2020). results from an ALSOVA follow-up study. Quality of Life Barriers to older adults’ uptake of mobile-based mental Research, 25(3), 687–697. https://doi.org/10.1007/s11136- health interventions. Digital Health, 6, 1-15. https://doi.org/ 015-1100-x 10.1177/2055207620905422 Vandenbroucke, J. P., Von Elm, E., Altman, D. G., Gøtzsche, P. Saadi, J. P., Carr, E., Fleischmann, M., Murray, E., Head, J., C., Mulrow, C. D., Pocock, S. J., Poole, C., Schlesselman, Steptoe, A., Hackett, R. A., Xue, B., & Cadar, D. (2021). The J. J., & Egger, M. (2007). Strengthening the Reporting role of loneliness in the development of depressive symptoms of Observational Studies in Epidemiology (STROBE): among partnered dementia caregivers: Evidence from the Explanation and elaboration. PLoS Medicine, 4(10), Article English Longitudinal Study of Aging. European Psychiatry, e297. https://doi.org/10.1371/journal.pmed.0040297 64(1), e28. https://doi.org/10.1192/j.eurpsy.2021.20 Verity, R., Okell, L. C., Dorigatti, I., Winskill, P., Whittaker, C., Savela, R., Schwab, U., & Välimäki, T. (2022). An integrative Imai, N., Cuomo-Dannenburg, G., Thompson, H., Walker, P. review of the social determinants of mental health among G. T., Fu, H., Dighe, A., Griffin, J. T., Baguelin, M., Bhatia, older caregivers. Nursing Open, 9(1), 94–107. https://doi. S., Boonyasiri, A., Cori, A., Cucunubá, Z., FitzJohn, R., org/10.1002/nop2.1094 Gaythorpe, K., & Ferguson, N. M. (2020). Estimates of the Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M., & Monin, J. K. severity of coronavirus disease 2019: a model-based analysis. (2020). Family caregiving for older adults. Annual Review of The Lancet Infectious Diseases, 20(6), 669–677. https://doi. Psychology, 71(1), 635–659. https://doi.org/10.1146/annurev- org/10.1016/S1473-3099(20)30243-7 psych-010419-050754 Victor, C.R., Rippon, I., Quinn, C., Nelis, S.M., Martyr, A., Hart, Sheth, K., Lorig, K., Stewart, A., Parodi, J. F., & Ritter, P. L. N., Lamont, R., Clare, L., on behalf of the IDEAL Programme (2021). Effects of COVID-19 on informal caregivers and Team. (2021). The prevalence and predictors of loneliness in the development and validation of a scale in English and caregivers of people with dementia: findings from the IDEAL Spanish to measure the impact of COVID-19 on caregivers. Journal of Applied Gerontology, 40(3), 235–243. https://doi. programme. Aging & Mental Health 25(7), 1232–1238. org/10.1177/0733464820971511 https://doi.org/10.1080/13607863.2020.1753014 Solar, O., & Irwin, A. (2010). A conceptual framework for action Wagner, M., & Brandt, M. (2018). Long-term care provision on the social determinants of health Social Determinants and the well-being of spousal caregivers: an analysis of 138 of Health Discussion Paper 2 (Policy and Practice). World European regions. The Journals of Gerontology: Series B, Health Organization. 73(4), Article e24–e34. doi: 10.1093/geronb/gbx133. https:// Titov, N., Fogliati, V. J., Staples, L. G., Gandy, M., Johnston, L., doi.org/10.1093/geronb/gbx133 Wootton, B., Nielssen, O., & Dear, B. F. (2016). Treating anxi- Weiss, R. S. (1973). Loneliness: The experience of emotional and ety and depression in older adults: randomised controlled trial social isolation. MIT Press comparing guided v. self-guided internet-delivered cognitive– World Health Organization (1998). WHOQOL: measuring quality behavioural therapy. BJPsych Open, 2(1), 50–58. https://doi. of life. Psychol Med. org/10.1192/bjpo.bp.115.002139 World Health Organization (2020). Guidance on COVID-19 for Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria the care of older people and people living in long-term care for reporting qualitative research (COREQ): a 32-item check- facilities, other non-acute care facilities and home care. list for interviews and focus groups. International Journal World Health Organization. https://apps.who.int/iris/han- for Quality in Health Care, 19(6), 349–357. https://doi. dle/10665/331913 org/10.1093/intqhc/mzm042 Yesavage, J. A., & Sheikh, J. I. (1986). 9/Geriatric Depression Tuijt, R., Frost, R., Wilcock, J., Robinson, L., Manthorpe, J., Rait, Scale (GDS). Clinical Gerontologist, 5(1–2), 165–173. https:// G., & Walters, K. (2021). Life under lockdown and social doi.org/10.1300/J018v05n01_09 restrictions - the experiences of people living with dementia Zaninotto, P., Iob, E., Demakakos, P., & Steptoe, A. (2022). and their carers during the COVID-19 pandemic in England. Immediate and longer-term changes in the mental health and BMC Geriatrics, 21(1), 301. https://doi.org/10.1186/s12877- well-being of older adults in England during the COVID-19 021-02257-z pandemic. JAMA Psychiatry, 79(2), 151–159. https://doi. Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis org/10.1001/jamapsychiatry.2021.3749 and thematic analysis: Implications for conducting a qualitative

Journal

Journal of Applied GerontologySAGE

Published: Aug 1, 2022

Keywords: caregiving; COVID-19; loneliness; social isolation

There are no references for this article.