Older adults' experiences during the COVID-19 pandemic: a qualitative systematic literature review.

OBJECTIVES: Relatively little is known about the lived experiences of older adults during the COVID-19 pandemic. We systematically review the international literature to understand the lived experiences of older adult's experiences during the pandemic. DESIGN AND METHODOLOGY: This study uses a meta-ethnographical approach to investigate the included studies. The analyses were undertaken with constructivist grounded theory. RESULTS: Thirty-two studies met the inclusion criteria and only five papers were of low quality. Most, but not all studies, were from the global north. We identified three themes: desired and challenged wellbeing; coping and adaptation; and discrimination and intersectionality. Overall, the studies' findings were varied and reflected different times during the pandemic. Studies reported the impact of mass media messaging and its mostly negative impact on older adults. Many studies highlighted the impact of the COVID-19 pandemic on participants' social connectivity and well-being including missing the proximity of loved ones and in consequence experienced an increase in anxiety, feeling of depression, or loneliness. However, many studies reported how participants adapted to the change of lifestyle including new ways of communication, and social distancing. Some studies focused on discrimination and the experiences of sexual and gender minority and ethnic minority participants. Studies found that the pandemic impacted the participants' well-being including suicidal risk behaviour, friendship loss, and increased mental health issues. CONCLUSION: The COVID-19 pandemic disrupted and impacted older adults' well-being worldwide. Despite the cultural and socio-economic differences many commonalities were found. Studies described the impact of mass media reporting, social connectivity, impact of confinement on well-being, coping, and on discrimination. The authors suggest that these findings need to be acknowledged for future pandemic strategies. Additionally, policy-making processes need to include older adults to address their needs. PROSPERO record [CRD42022331714], (Derrer-Merk et al., Older adults' lived experiences during the COVID-19 pandemic: a systematic review, 2022).

Exploring the process of adjustment following partner death in younger, widowed individuals: A qualitative systematic review.

Age influences the experience of widowhood and the likelihood of adverse outcomes. This review synthesizes 13 qualitative studies that explored adjustment following the death of a partner at a younger age, within a Western-cultural context. Thematic synthesis identified six analytical themes: unique challenges; identity changes; levels of distress; coping; support; and adapting following the loss. Bereavement challenges younger widow(er)'s life expectations, identity, and friendships. Social support, faith, and access to age-specific support may facilitate positive adjustment. The findings inform the development of effective interventions to support positive adjustment in younger widowhood.

Measurement invariance of the Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder scale (GAD-7) across four European countries during the COVID-19 pandemic.

BACKGROUND: The Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder scale (GAD-7) are self-report measures of major depressive disorder and generalised anxiety disorder. The primary aim of this study was to test for differential item functioning (DIF) on the PHQ-9 and GAD-7 items based on age, sex (males and females), and country. METHOD: Data from nationally representative surveys in UK, Ireland, Spain, and Italy (combined N = 6,054) were used to fit confirmatory factor analytic and multiple-indictor multiple-causes models. RESULTS: Spain and Italy had higher latent variable means than the UK and Ireland for both anxiety and depression, but there was no evidence for differential items functioning. CONCLUSIONS: The PHQ-9 and GAD-7 scores were found to be unidimensional, reliable, and largely free of DIF in data from four large nationally representative samples of the general population in the UK, Ireland, Italy and Spain.

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Health and social care professionals' ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. AIM: To explore health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic.

BACKGROUND: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. CONCLUSIONS: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'.

How does carer resilience change over time and care status? A qualitative longitudinal study.

Objectives: Little research examines trajectories of carer resilience or the factors that facilitate or hinder resilience over time. We use qualitative longitudinal methods to examine trajectories of resilience and which assets and resources are associated with resilience and care status transitions in spousal dementia carers. Method: Based on an original sample of 23 spousal dementia carers (Donnellan, Bennett, & Soulsby, 2015 ), we conducted 13 follow-up interviews, including: 5 continuing home carers, 3 former carers (institutionalised), and 5 former carers (widowed). Results: Five participants remained resilient (stable resilient), three remained non-resilient (stable non-resilient) and four participants became resilient (non-resilient to resilient). Only one participant became non-resilient (resilient to non-resilient). Stable resilience was characterised by continuing individual assets and community resources. Carers who became resilient returned to previous resources, or gained new resources. Conclusion: Institutionalisation and widowhood are not always barriers to resilience; spousal dementia carers can remain or even become resilient over time despite deteriorating health, institutionalisation, or death of the care recipient.

Family close but friends closer: exploring social support and resilience in older spousal dementia carers.

OBJECTIVES: Spousal dementia carers have unique support needs; they are likely to disengage from their existing social networks as they need to devote more time to caring as the disease progresses. Previously we showed that support resources can facilitate resilience in carers, but the relationship is complex and varies by relationship type. The current paper aims to explore social support as a key component of resilience to identify the availability, function and perceived functional aspects of support provided to older spousal dementia carers. METHOD: We conducted 23 in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. RESULTS: Family and friends served a wide range of functions but were equally available to resilient and non-resilient participants. Family support was perceived as unhelpful if it created feelings of over-dependence. Participants were less likely to resist involvement of grandchildren due to their relatively narrow and low-level support functions. Friend support was perceived as most helpful when it derived from those in similar circumstances. Neighbours played a functionally unique role of crisis management. These perceptions may moderate the effect of support on resilience. CONCLUSION: Family and friend support is not always sufficient to facilitate resilience. Support functions facilitate resilience only if they are perceived to match need. Implications of these findings are discussed.

The emotional and practical experiences of formula-feeding mothers.

The majority of infant-feeding research is focused on identifying mother's reasons for the cessation of breastfeeding. The experience of mothers who choose to use formula is largely overlooked in quantitative designs. This study aimed to describe the emotional and practical experiences of mothers who formula feed in any quantity, and examine whether these experiences would vary among different cohorts of formula-feeding mothers according to prenatal feeding intention and postnatal feeding method. A total of 890 mothers of infants up to 26 weeks of age, who were currently formula feeding in any quantity, were recruited through relevant international social media sites via advertisements providing a link to an online survey. Predictors of emotional experiences included guilt, stigma, satisfaction, and defense as a result of their infant feeding choices. Practical predictor variables included support received from health professionals, respect displayed by their everyday environment, and main sources of infant feeding information. Descriptive findings from the overall sample highlighted a worryingly high percentage of mother's experienced negative emotions as a result of their decision to use formula. Multinomial logit models revealed that negative emotions such as guilt, dissatisfaction, and stigma were directly associated with feeding intention and method. The evidence suggests that the current approach to infant-feeding promotion and support may be paradoxically related to significant issues with emotional well-being. These findings support criticisms of how infant-feeding recommendations are framed by health care professionals and policy makers, and highlight a need to address formula feeding in a more balanced, woman-centered manner.

Psychological adaptation to spousal bereavement in old age: The role of trait resilience, marital history, and context of death.

This research examined the effect of marital status and gender on various indicators of psychological adaptation, namely depressive symptoms, loneliness, and life satisfaction. It further explores the role of trait resilience, marital history, and context of death for predicting these outcomes in bereaved individuals. Four hundred eighty widowed individuals aged between 60 and 89 were compared with 759 married peers. Main effects were found for marital status and gender for all indicators. The regression analyses illustrate the multifaceted structure of psychological adaptation. Trait resilience is a key factor in adapting to spousal bereavement, whereas marital history and the context are secondary.

Resilience amongst Older Colombians Living in Poverty: an Ecological Approach.

Older Colombians face significant adversities: poverty, violence and displacement. However, there is evidence that Latinos are often resilient. We examine resilience in older Colombians living in poverty using an ecological framework that identifies three levels: individual; community; and societal. In this paper we examine data from 16 semi-structured interviews with older Colombians that explore resilience within the context of poverty. We analyze our data using three stages: (1) modified grounded theory; (2) assignment of resilience status; (3) identification of components of the ecological framework which contribute to resilience in these participants. The most striking feature is that some participants are able to adapt to their situation, demonstrating resilience, whilst others are not. Individual characteristics such as psychological and material resources contribute to resilience. At the community level, family, social support, participation and cohesion promote resilience. Finally, at the societal level, social and welfare services, finance, religion and social policy, are important factors. These different levels of resilience are co-dependent, and we illustrate how this is so. We suggest that older Colombians living in poverty often demonstrate resilience, but that more can be done to enhance their lives. This includes interventions at the individual and community levels alongside changes in social policy.

What are the factors that facilitate or hinder resilience in older spousal dementia carers? A qualitative study.

OBJECTIVES: Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as 'the process of negotiating, managing and adapting to significant sources of stress or trauma'. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework . METHOD: Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. RESULTS: Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care. CONCLUSION: There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed.

Experiences of UK-based adult transition services for interstitial lung disease in childhood: "There's a lot less cushioning".

Interstitial lung disease in childhood (chILD) is rare and no longer purely a childhood issue as many survive into adulthood, and so have to transition from pediatric to adult healthcare services. Transition is a significant life event that has the potential to impact on physical and mental health outcomes. The European Respiratory Society (ERS) statement on chILD transition highlighted the lack of standardised transition services for chILD transition resulting in a haphazard process. This qualitative study explores how young people and parents in the United Kingdom experienced transition from paediatric to adult healthcare services for chILD. Participants (n = 7) were recruited from chILD patient organisations and online communities. We focused on the experience of transition exploring if there were any information packs or support provided for the transition. Such support may be generic, such as "Ready Steady Go" which provides a systematic approach to transition and disease-specific literature. These latter have not been developed for ILD. Data were analysed by constructivist grounded theory. We present a lived experience of transition with themes of lack of transition preparation and planning, challenges of adapting to adult services, and a changing healthcare scene. Due to the complexity of chILD, parents discussed their need to remain, in part, as an advocate for the young person. Respondents provided recommendations for how transition could be improved along with tips for young people who are new to the transition process, which include educating oneself about the condition, learning medical terminology, and reaching out for support.

An 18-month follow-up of the Covid-19 psychology research consortium study panel: Survey design and fieldwork procedures for Wave 6.

OBJECTIVES: Established in March 2020, the C19PRC Study monitors the psychological and socio-economic impact of the pandemic in the UK and other countries. This paper describes the protocol for Wave 6 (August-September 2021). METHODS: The survey assessed: COVID-19 related experiences; experiences of common mental health disorders; psychological characteristics; and social and political attitudes. Adult participants from any previous wave (N = 3170) were re-invited, and sample replenishment procedures helped manage attrition. Weights were calculated using a survey raking algorithm to ensure the on-going original panel (from baseline) was nationally representative in terms of gender, age, and household income, amongst other factors. RESULTS: 1643 adults were re-interviewed at Wave 6 (51.8% retention rate). Non-participation was higher younger adults, those born outside UK, and adults living in cities. Of the adults recruited at baseline, 54.3% (N = 1100) participated in Wave 6. New respondent (N = 415) entered the panel at this wave, resulting in cross-sectional sample for Wave 6 of 2058 adults. The raking procedure re-balanced the longitudinal panel to within 1.3% of population estimates for selected socio-demographic characteristics. CONCLUSIONS: This paper outlines the growing strength of the publicly available C19PRC Study data for COVID-19-related interdisciplinary research.

Predicting resilience during the COVID-19 Pandemic in the United Kingdom: Cross-sectional and longitudinal results.

Although the COVID-19 pandemic has impacted the psychological wellbeing of some people, there is evidence that many have been much less affected. The Ecological Model of Resilience (EMR) may explain why some individuals are not resilient whilst others are. In this study we test the EMR in a comparison of UK survey data collected from the COVID-19 Psychological Research Consortium (C19PRC) longitudinal study of a representative sample of the United Kingdom (UK) adult population and data from an Italian arm of the study. We first compare data from the third wave of the UK arm of the study, collected in July/August 2020, with data from an equivalent sample and stage of the pandemic in Italy in July 2020. Next, using UK longitudinal data collected from C19PRC Waves 1, 3 and 5, collected between March 2020 and April 2021 we identify the proportion of people who were resilient. Finally, we examine which factors, drawn from the EMR, predict resilient and non-resilient outcomes. We find that the 72% of the UK sample was resilient, in line with the Italian study. In the cross-sectional logistic regression model, age and self-esteem were significantly associated with resilience whilst death anxiety thoughts, neuroticism, loneliness, and Post Traumatic Stress Disorder (PTSD) symptoms related to COVID-19 were significantly associated with Non-Resilient outcomes. In the longitudinal UK analysis, at Wave 5, 80% of the sample was Resilient. Service use, belonging to wider neighbourhood, self-rated health, self-esteem, openness, and externally generated death anxiety were associated with Resilient outcomes. In contrast, PTSD symptoms and loneliness were associated with Non-Resilient outcomes. The EMR effectively explained the results. There were some variables which are amenable to intervention which could increase resilience in the face of similar future challenges.

Testing alternative models and predictive utility of the Death Anxiety Inventory-Revised: A COVID-19 related longitudinal population based study.

The beginning of the COVID-19 pandemic had a profound effect on all aspects of daily life and triggered a swell of anxiety across the world. Some suggest this emotional response to the pandemic can be explained through death anxiety (DA), a transdiagnostic dimension associated with numerous psychological disorders. However, it remains unclear as to whether DA is a unidimensional or multidimensional construct. The primary aim of this study was to examine the underlying structure of the Death Anxiety Inventory-Revised (DAI-R; Tomás-Sábado et al., 2005) and assess its associations with mental health and demographic variables during the COVID-19 pandemic. To achieve these aims, we utilized data from Waves 1 (N = 2205: collected between March 23 and March 28, 2020) and 2 (N = 1406: collected between April 22 and May 1, 2020) of the COVID-19 Psychological Research Consortium (C19PRC), a multi-wave nationally representative study. Results showed that a 4-factor model provided the best fit to the data compared to a unidimensional and 4-factor second-order model. Further analyses showed that DA at Wave 1 was positively associated with somatic symptoms, paranoia, depression, anxiety, and traumatic stress symptoms at Wave 2, supporting previous research that suggests that the fear of death is predictive of psychopathology. Significantly, the factor labelled 'Thoughts about Death' at Wave 1 was the strongest predictor of the five main psychological variables at Wave 2, after statistically controlling for the other latent variables. These findings highlight the transdiagnostic nature of DA and support this important diagnostic construct becoming a measure of mental health more generally within the population. It is hoped that this research will shine a light on those suffering from DA and become a catalyst for increased therapeutic intervention, funding, and research in this area.

Belongingness challenged: Exploring the impact on older adults during the COVID-19 pandemic.

OBJECTIVES: The sense of belonging is a fundamental human need. Enacting it through face-to-face social activities was no longer possible during the COVID-19 pandemic. In this study, we investigate how the sense of belonging, and how it is enacted, changed longitudinally amongst older adults in the UK. In addition, we examine the interplay of the sense of belonging and resilience over time. METHODS: We employed a longitudinal qualitative research design to explore the experiences of older adults during one year of the COVID-19 pandemic (April 2020-April 2021). The analysis was undertaken with constructivist grounded theory. FINDINGS: Before the pandemic older adults were free to engage in social relationships with family and friends, often enacted within social activity groups where they felt valued and gained positive experiences. During the pandemic face to face enactment of belongingness was reduced; adjustments needed to be made to maintain the sense of belonging. The experience of older adults was heterogeneous. We examine three themes. First, how belongingness was enacted prior to the pandemic. Examples include: family holidays, visiting each other, sports activities, eating with friends and family, and visiting cultural events. Second, how participants adapted and maintained their social involvement. Examples include: distanced face-to-face activities; and learning new technology. Third, for some, a belongingness gap emerged and persisted. There was an irretrievable loss of family members or friends, the closure of social groups, or withdrawal from groups as priorities changed. As a consequence, of challenged belongingness, participants expressed increased loneliness, anxiety, social isolation, frustration and, feelings of depression. For many, the disrupted sense of belonging no longer fostered resilience, and some previously resilient participants were no longer resilient.

A network approach to understanding social distancing behaviour during the first UK lockdown of the COVID-19 pandemic.

OBJECTIVE: Given the highly infectious nature of COVID-19, social distancing practices are key in stemming the spread of the virus. We aimed to assess the complex interplay among psychological factors, socio-demographic characteristics and social distancing behaviours within the framework of the widely used Capability, Opportunity, Motivation-Behaviour (COM-B) model. DESIGN: The present research employed network psychometrics on data collected during the first UK lockdown in April 2020 as part of the COVID-19 Psychological Research Consortium (C19PRC) Study. Using a network approach, we examined the predictions of psychological and demographic variables onto social distancing practices at two levels of analysis: macro and micro. RESULTS: Our findings revealed several factors that influenced social distancing behaviour during the first UK lockdown. The COM-B model was successful in predicting particular aspects of social-distancing via the influence of psychological capability and motivation at the macro-and micro-levels, respectively. Notably, demographic variables, such as education, income, and age, were directly and uniquely predictive of certain social distancing behaviours. CONCLUSION: Our findings reveal psychological factors that are key predictors of social distancing behaviour and also illustrate how demographic variables directly influence such behaviour. Our research has implications for the design of empirically-driven interventions to promote adherence to social distancing practices in this and future pandemics.

Is Protecting Older Adults from COVID-19 Ageism? A Comparative Cross-cultural Constructive Grounded Theory from the United Kingdom and Colombia.

The COVID-19 pandemic impacted people's lives all over the world, requiring health and safety measures intended to stop the virus from spreading. This study explores whether an unintended consequence of these measures is a new form of ageism. We explore, using qualitative methods, the experiences of older adults living through the pandemic in the United Kingdom and Colombia. Although there were some small differences between countries, for the most part, the experiences were similar. We found that older adults reported that they were seen as a homogenous group and experienced both benevolent and hostile ageism and a loss of autonomy as a consequence of COVID-19 protection measures. Participants from both countries expressed anger and frustration, and increased anxiety, and felt that their individuality was ignored. We recommend that policy-makers, the media, and wider society consider the impact of such health and safety measures on older adults in preparing for future pandemics and health challenges.

Characteristics of mental health stability during COVID-19: An online survey with people residing in a city region of the North West of England.

BACKGROUND AND AIM: Despite the significant mental health challenges the COVID-19 pandemic and its associated government measures have presented, research has shown that the majority of people have adapted and coped well. The aim of this study was i) to determine the proportion of people with mental stability and volatility during the pandemic in a North West England city region sample and ii) to establish group differences in psychosocial variables. Mental stability and volatility refer to the extent to which individuals reported change in levels of common mental health symptoms over the course of 12 weeks. No change in mental health over the 12 weeks reflected mental stability whilst change in mental health reflected mental volatility. METHOD: A two-wave-online survey (N = 163) was used to explore the psychological and social impact of the pandemic on relatively disadvantaged neighbourhoods within the region. The data collected represents 12 weeks of individual pandemic experience between mid-June and mid-December 2020. A three-level composite common mental health change variable was created combining self-reported anxiety and depression to group stable, volatile, and very volatile individuals in terms of the changeability of their mental health. Kruskal-Wallis with post-hoc tests were used to determine how people with mental stability and volatility differed on factors categorised within an ecological framework of resilience (individual, community, societal, and COVID-19 specific). RESULTS: Individuals categorised as 'stable' in terms of mental health symptoms (63.6%) had better mental and physical health; were more tolerant of uncertainty; and reported higher levels of resilience and wellbeing compared to 'very volatile' people (19.8%). These individuals also reported feeling less socially isolated, experienced a greater sense of belonging to their community which was more likely to fulfil their needs, and were more likely to have access to green space nearby for their recommended daily exercise. 'Stable' individuals did not report worrying any more during the pandemic than usual and tolerated uncertainty better compared to those in the 'volatile' group. IMPLICATIONS: The majority of participants in this sample were mentally stable and coping well with the challenges presented by the pandemic. The resilience of these individuals was related to key place-based factors such as a strong sense of community and useable local assets. The data showcase the role of place-based social determinants in supporting resilience and thereby highlight key preventative measures for public mental health during times of international crisis.