Experiences Of Informal Caregivers Research Articles

A fluctuating intensity of care: A qualitative study on the experiences of informal caregivers of patients with critical limb-threateningischemia.

Informal caregivers play a significant role in providing care for older, often vulnerable, patients, and supporting them as they live with chronic diseases. Due to the rising prevalence of older vascular patients and their use of healthcare, the role of their informal caregivers will become more important. However, little is known about the experiences of informal caregivers of patients with critical limb-threatening ischemia and the impact of informal care on different aspects of these caregivers' lives. In addition, literature does not describe the burden this role brings with it, or lack thereof. Therefore a qualitative study using a phenomenological approach, specifically interpretive phenomenological analysis, was used to gain insight into the experiences of the primary informal caregivers of patients with chronic limb-threatening ischemia. Data were collected via semi-structured interviews and focus groups discussions. Fifteen primary informal caregivers of patients with critical limb-threatening ischemia under the care of the vascular surgeon at a tertiary teaching hospital in the Netherlands were included. Data analysis yielded three themes: the perceived identity of this group of caregivers; the varying intensity of informal care; and the collaboration between informal carers, their care recipients and the professional care provider within the vascular surgery department. In contrast to carers of other chronic diseases, the shifting intensity of care that informal caregivers of critical limb-threatening ischemia patients experience seems to prevent long-term overload. Adapting to that fluctuating situation requires flexibility from healthcare providers within the vascular surgery department. In addition, professionals need to involve informal caregivers in the patient's decision-making process and recognize their role in that process.

Healthcare and social care professionals’ experiences of respite care: a critical incident study

ABSTRACT Introduction Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care can offer support, its accessibility is hindered by organizational challenges and informal caregivers’ delays in using it. The experiences of informal caregivers are well-studied, but the professionals’ experiences of respite care quality and critical incident management are underexplored. Aim To explore professionals’ experiences of critical incidents in respite care, consequences for the persons being cared for, and strategies to manage critical incidents. Materials and methods A qualitative, critical incident technique was used, and three group interviews with a total of 16 professionals were conducted. Results Barriers to quality respite care included communication gaps during care transitions, environmental shortcomings in respite care facilities, lack of support for informal caregivers, and inadequacies in respite care decisions. Strategies to manage critical incidents included individualized care, continuity and communication in care transitions, a conducive environment, support for informal caregivers, and care professionals’ positive approach. Conclusions The study emphasizes the need for focused efforts on communication, continuity, and a supportive environment. Addressing identified challenges and applying suggested strategies will be key to maximizing the potential of respite care as a vital support for care recipients and their informal caregivers.

Exploring the unmet needs and experiences of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis - a qualitative study.

Patients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple symptoms, which can present physical and emotional challenges for both patients and their informal caregivers. Caregivers can experience anxiety, depression, and social isolation negatively impacting their overall wellbeing and resulting in caregiver burden. The needs of this group of caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study Is to explore the unmet needs and experiences of caregivers of patients with ESKD receiving haemodialysis, and to determine the components of a supportive intervention. A qualitative study using semi-structured interviews (n = 24) with informal caregivers. An interpretive qualitative framework was employed to generate a rich understanding of the unmet needs and experiences of caregivers. Data was analysed using thematic analysis. Interviews were transcribed verbatim and data management was assisted through NVIVO version 11. Twenty-four informal caregivers were purposively recruited from two haemodialysis settings within Northern Ireland. Three themes were identified: (1) The negative impact of distress, anxiety, and isolation on caregivers due to their caregiving responsibilities (2) Inadequate information and knowledge about the complexities of renal care (3) The benefits of spiritual beliefs, stress management and peer support in relieving the caregiving burden. Caregivers of patients with ESKD receiving haemodialysis are at increased risk of physical and psychological distress and burden arising from their caregiving role. The unpredictable nature of ESKD and haemodialysis treatment negatively impacts the caregiver experience and adds to the challenges of the role. The information needs of caregivers are not always adequately met and they subsequently lack appropriate knowledge, skills, and guidance to assist them in their caregiving role. Supportive interventions are essential for caregivers to enhance their capability to deliver effective care and improve their quality of life.

Portuguese Caregivers of Persons With Alzheimer's Disease in the Context of the COVID-19 Pandemic: A Qualitative Study of the Grieving Process.

This study addresses the experiences of informal caregivers caring for elderly family members with Alzheimer's disease (AD) during the COVID-19 pandemic. The study includes a sample of eight informal caregivers who were evaluated through a semi-structured interview six months after the death of a loved one they cared for. A thematic content analysis was applied to the interviews and yielded two higher-order domains: (1) Experiencing the AD and the death of a family member and (2) The grieving process during the COVID-19 pandemic. The results provide valuable insights into family caregivers' experiences regarding the profound emotional impact of caregiving and grief during the COVID-19 pandemic. Caregivers maintain their identity even after loss, underscoring the enduring impact of caregiving. The identity as a caregiver impacted coping and grief responses, highlighting the need for tailored interventions.

Cross-country variations in the caregiver role: evidence from the ENTWINE-iCohort study

BackgroundGlobally, economically developed countries face similar ageing demographics and the challenge of a ‘care gap’, yet they vary due to different care and formal support systems, and different cultural and societal norms around illness and care. The aim of this exploratory study was to examine cross-country variations in caregiver motivations, willingness, values, meaning in life, illness beliefs, and experiences of wellbeing, gain, health-related quality of life, burden and depression, across 6 European countries and Israel. Cross-country differences in the above-mentioned informal caregiver experiences are rarely described.MethodsAn online survey (ENTWINE-iCohort) was conducted using validated measures wherever possible. This paper utilises data from 879 caregivers and seven countries (Greece, Italy, the Netherlands, Poland, Sweden, the UK, and Israel).ResultsNo consistent finding supporting the concurrent relationship between caregiver support policies/country culture and caregiver motivations/willingness was found. Caregivers in countries typically characterised by individualist cultures reported lower familism, higher self-enhancement values, and greater perceived illness threat compared to more collectivist countries. Search for meaning was higher in poorer countries than in wealthier countries. Higher negative caregiver experiences (e.g., burden) and lower positive experiences (e.g., wellbeing) were generally observed in countries with underdeveloped caregiver support as compared to countries with more developed formal support systems.ConclusionsCross-country variations can be explained to varying degrees by national policies around care (or their absence) and country cultural contexts. The results emphasise the importance of formal support services for achieving positive caregiver experiences, and help inform the development of policies and measures to support caregivers in Europe and Israel.

Care of People Living with Dementia in Bulgaria: Between Over-Responsibility to the Family and Distrust in Public Health Services and Policies

Abstract Thirty years after the transition to democracy in Bulgaria, there is a lack of social and community support for people living with dementia and for their families and caregivers. Both residential and assisted living facilities in the country have remained both unpopular and underdeveloped, and based on in-depth biographical and expert interviews and focus groups, we shall discuss the subjective experience of informal caregivers of people living with dementia, accumulated in the confined space of home and family. We shall try to show how inconsistent application of the European Union’s social policies as well as the existence of enduring socio-cultural stereotypes relating to parental care places caregivers in passive, but over-responsible and implicitly critical positions towards the management both of public and private services for older people in Bulgaria.

Experiences of informal caregivers of people with dementia in low- and middle-income countries: a systematic review protocol.

This review aims to synthesize the experiences of informal caregivers of people with dementia in low- and middle-income countries (LMICs). Globally, the burden of dementia is increasing disproportionately in LMICs. Informal caregivers play a vital role and face multiple challenges in LMICs. Caregivers often lack awareness and skills to provide adequate care for people living with dementia. Many LMICs have limited resources and caregivers lack support services. Understanding their experiences and perceptions may improve interventions, helping caregivers to better support those living with dementia. Studies from all settings in LMICs will be considered. Qualitative data from qualitative or mixed methods studies that explore caregivers' experiences and perceptions will be included in this review. Participants are informal caregivers of people diagnosed with dementia at any stage, regardless of age, gender, or their relationship with people living with dementia. This review will follow the JBI methodology for a qualitative systematic reviews, with meta-aggregation as the synthesis method. The review will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A 3-step search strategy will be used to locate published and unpublished studies in MEDLINE, CINAHL, Embase, PsycINFO, AgeLine, LILACS, African Index Medicus, ProQuest Dissertations and Theses, Open Dissertations, Web of Science Core Collection, and Google Scholar. There will be no date or language limitations. All studies will be screened against the inclusion criteria and data will be extracted and critically appraised for methodological quality by 2 independent reviewers using JBI tools. Confidence in the final synthesized findings will be assessed using the ConQual approach. PROSPERO CRD42023453814.

Beyond the Burden: A Qualitative Inquiry into the Experiences of Chinese Informal Caregivers for People Living with HIV or AIDS.

Informal caregivers are defined as families or close friends of patients, which take considerable responsibilities for providing care to people living with HIV/AIDS (PLWHA). Although there have been a number of studies in caregiver of PLWHA, research studies that sought to quantify the effects of informal caregiving for the caregivers failed to successfully provide empirical understanding of the nature of caregiving experience. Therefore, this study adopted a qualitative approach to explore the experiences and feelings of caregivers of PLWHA during the long-term care process. The qualitative study was conducted in August 2023 in Beijing, China. Data were collected through individual in-depth semi-structured interviews with informal caregivers of PLWHA. Theme analysis was used to identify themes from the interview transcripts. A total of 21 participants were recruited into our study, 16 were family members of PLWAHA, and 5 were homosexual lover or close friend of PLWHA. Three major themes and ten sub themes were identified by thematic analysis: (1) care burden experience (including 5 sub-themes: negative emotional experience, psychological burden, economic burden, physical health loss and limitation of social interaction); (2) benefit findings from care (including 3 sub-theme: positive emotional experience, perceived social support, health promotion); (3) Demands for caregiving capacity (including 2 sub-theme: inadequate caregiving capacity and inadequate psychological comfort capacity). This qualitative study provides a comprehensive exploration of the experiences faced by informal caregivers of PLWHA in China, uncovering the complex spectrum of psychological, physical, social, and economic challenges inherent in their caregiving roles, while predominantly challenging, caregivers also reported personal growth, increased social support, and emotional fulfillment. The research results could help in developing effective interventions to reduce the caregiver burden and improve their mental health.

Feedback System Analysis of a Multicomponent Intervention on Dyads of Home-Dwelling Persons With Dementia and Their Caregivers: Results From the LIVE@Home.Path Trial.

Proper symptom management, informal caregiver support, and service innovation are required to reduce dementia care burden. The objective of this study is to investigate the effect of the multicomponent LIVE (Learning, Innovation, Volunteering, Empowerment) intervention on caregiver experience of the self-perceived care situation, coordinator performance, and informal care time. We conducted a 24-month multicomponent, stepped-wedge randomized control trial including dyads of people ≥65 years with mild-to-moderate dementia with minimum weekly contact with their informal caregivers in Norway. The intervention was implemented by municipal coordinators over a 6-month period. This study investigates the first 6-month period (September 2019-March 2020) of the trial, due to the coronavirus disease 2019 (COVID-19) pandemic. Primary outcomes are changes in provision of informal care time assessed by Resource Utilization in Dementia Care (RUD) and informal caregiver experience assessed by the Clinical Global Impression of Change (CGIC). We use logistic regression and feedback system analysis to assess the reach of the multicomponent intervention. A total of 280 dyads were included at baseline, mean age of the person with dementia was 81.8 years, and 62.5% were female. After 6 months, the feedback system analysis reveals that the caregivers randomized to the intervention period reported improved caregiver situation (CGIG-T: intervention 0.63 (SD 2.4) vs control -0.43 (SD 1.7), p < .01), even though informal care time for activities of daily living was not reduced (p = .31). Informal caregivers registered a positive change for the Learning, Innovation, and Empowerment components, while no change was found for Volunteer support. Findings illustrate the usefulness of dementia care coordinators that provide regular follow-up. We also show that complex intervention studies benefit from applying feedback system analysis. Meeting the needs of persons with dementia and their caregivers is a complex process that requires coordinated input from health services and user communities. NCT04043364.

Patient Reported Outcome Measurement (PROM) under real-life conditions of non-curable cancer outpatients with the Integrated Palliative Outcome Scale (IPOS) and NCCN-Distress Thermometer – A mixed methods study

ObjectiveProspective cohort study to test the real-life feasibility of longitudinal patient-reported outcome measurement PROM (Integrated Palliative Outcome Scale IPOS, and NCCN Distress Thermometer DT) required for outpatients with non-curable lung or prostate cancer in comprehensive cancer centers. MethodsAssessment with paper-based IPOS and DT was observed for 15 months. We analyzed response to patients' distress (requests for supportive and palliative services) following PROM. Focus groups to comprehensively explore the user experience of patients, informal caregivers and health care professionals (HCP) supplemented the analysis. ResultsNinety-seven percent (125/129) of the patients received a questionnaire once, but quarterly assessment as recommended by certification committees was achieved only in 50% and 31% of prostate and lung cancer patients. Although both instruments were well accepted, only IPOS showed a high content validity, because some patients had difficulties in understanding the DT. Patients felt comfortable with completing the PROM, and HCP found PROM helped to structure the patient encounter. Due to organizational deficiencies in the handling of the instruments and operationalization of reactions to identified distress, the referrals to supportive and palliative services were rare. ConclusionTo facilitate consequences from PROM it should be a standardized intervention rather than assessment alone. InnovationThe patient perspective improves the implementation of PROM under real-life clinical conditions.

Emotional Coping Strategies for Informal Caregivers of Hospitalized Patients: A Study of Distress and Overload.

Informal caregivers constitute a vulnerable population group that has forsaken their activities and life projects with the sole purpose of caring for a dependent individual without receiving any form of compensation in return. Emotionally, this population has been neglected by both the state and family members, exacerbating distress levels among them. The objective is to analyze the impact of emotional coping strategies on the experiences of distress and emotional burden among adult informal caregivers tending to hospitalized individuals. The role of emotional coping strategies in caregiver burden and psychological distress was examined in 460 informal adult caregivers from Guayaquil, Ecuador, who participated in an online survey. The instruments used included the Depression, Anxiety, and Stress Scale (DASS 21), the Zarit Burden Inventory (ZBI), and the Emotional Coping Questionnaire (Cuestionario de Afrontamiento Emocional). The analysis involved a multiple regression to iteratively select variables, aiming to build a simpler and more explanatory model. Employing multiple regression analysis with a stepwise model selection procedure, it was found that 16.5% of the variance in depression, 19.5% of the variance in anxiety, 19.8% of the variance in stress, and 32% of the variance in burden were predicted by specific coping strategies. Additionally, the impact of burden was estimated by the participants' gender, with greater burden observed among males due to societal role expectations. This study underscores the importance of emotional coping in the experience of informal caregivers and suggests that psychological interventions should focus on developing adaptive strategies to manage the stress and emotional burden associated with caregiving.

Beyond the Burden: A Qualitative Inquiry into the Experiences of Chinese Informal Caregivers for People Living with HIV or AIDS [Letter

Beyond the Burden: A Qualitative Inquiry into the Experiences of Chinese Informal Caregivers for People Living with HIV or AIDS [Letter

"Reablement in Flanders: An exploration of the Flemish context.&amp;nbsp;Understanding stakeholders' perspectives."

Background: The primary care sector in Flanders, Belgium, is undergoing an intense period of reform. To incorporate health, well-being and quality of life, care is shifting from acute disease-oriented care to chronic integrated care. There is a need to reform primary care services more directed to community-based service, targeting person-centered care and self-management of people who receive home care and their systems.&#x0D; Reablement is an approach or service model that can be described as a multidisciplinary short term intervention aimed at maintaining and optimizing functional ability and independence of people who receive home care and to promote participation in the local community. The effectiveness of reablement has been researched to a gold standard in different countries worldwide. Results show cost savings, reduced readmission to hospital and to nursing homes as well as increased satisfaction for the professionals and for the people receiving home care. &#x0D; Aim: The purpose of this study is to understand the stakeholder’s perspective on factors that might contribute to a successful and sustainable implementation of reablement in Flanders and factors seen as challenges to deploy this service. By understanding these perspectives, inferences can be made as to whether reablement in Flanders is desirable and feasible.&#x0D; Methods: To perform a context analysis, five focus group interviews were conducted with 35 stakeholders in primary care: patient associations, professional caregivers, health insurance funds, researchers, physiotherapists, occupational therapists, social workers and managers. The focus group interviews were transcribed and an hermeneutical analysis was conducted.&#x0D; Results: The analysis resulted in two main themes: facilitators and challenges for the implementation of reablement in Flanders.&#x0D; Facilitators are: the conviction that multidisciplinary collaboration will be more effective, shared decision making and planning will be encouraged, self management, person centered care, goal oriented and context oriented care will be optimized, continuity of integrated healthcare will be facilitated and the experience of informal caregivers will be better incorporated.&#x0D; Challenges are: lack of a clear definition of reablement in Dutch, people must be intrinsically motivated, the service must be financially and organizationally accessible to all, this approach requires a mindset shift of the healthcare professional, an efficient common communication system is essential and consultation must be financially supported for each person and healthcare professional involved in the service.&#x0D; &#x0D; In general, the goal and the added value of reablement were recognized by everyone as self-evident, but implementation of this service in the current healthcare system in Flanders requires an organizational shift from a supply driven to a demand driven care, a framework for multidisciplinary integrated cooperation and financial support, and sufficient time for both the people who receive home care and the health care professionals. &#x0D; This is the first study involving stakeholders in primary care in Flanders looking at the chances for reablement. Working with primary care providers we now aim to conduct Reable-Labs in different primary care settings in order to provide real life examples and experiences of reablement and its outcomes in the Flemish sector.

EXPLORING THE LIVED EXPERIENCES OF BLACK INFORMAL CAREGIVERS: A SCOPING REVIEW

Abstract Understanding the unique caregiving experiences of Black informal caregivers, most of whom are women, and how they are influenced by the historical and sociopolitical context of the Black experience in the America is critical to building an effective care infrastructure that is inclusive. Gaps in existing literature include a paucity of studies that explore in-group differences in the caregiving experiences of Black informal caregivers as well as a dearth of qualitative studies that center their voices and lived experiences. This scoping review explored current representations of the Black informal caregiving experience in qualitative literature. It sought to address the heterogeneity in the Black caregiver experience through amplification of caregivers’ voices. Specifically, it included studies that focused on varied informal caregiving arrangements which exist for Black informal caregivers who are caring for chronically or terminally ill adults. Overall, 65 studies were selected for full-text review. After data characterization of the full-text articles, nine studies remained and were included in the analysis. Four broad themes were identified: (1) cultural beliefs, (2) religion and spirituality, (3) systemic barriers (healthcare system and care structures), and (4) caregiver health and well-being (physical and mental health). Findings underscore the need for an intersectional lens in exploring the implications of the Black informal caregiving experience. Their cultural and religious/spiritual identities are linked to the historical experience of Black people in the United States. Their caregiving experiences often involve cultural obligations and expectations that create tension between fulfilling caregiver roles and providing for their own health and well-being.

Roles and experiences of informal caregivers of older adults in community and healthcare system navigation: a scoping review

ObjectiveInformal caregivers are playing a vital role in improving the degree to which older adults access community and healthcare systems in a more seamless and timely manner, thereby fulfilling their...

Dementia caregiving in Nigeria: is stigma a motivator for care, a barrier to care, or both?

AbstractBackgroundSome Nigerians struggle to make sense of symptoms resulting from Alzheimer’s disease and related dementias (ADRD). This may not be surprising as there is no word for dementia in its over 500 local languages. Thus, some Nigerians use words to explain ADRD symptoms that may stigmatize people living with dementia and their families.MethodOur qualitative descriptive study while focusing on the everyday understanding of dementia, aims to highlight the influence of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi‐structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria. We analyzed the interview transcripts for themes. Then, the findings were shared with focus groups of 21 adult Nigerians residing in the United States to gain more contextual insight on the initial findings.ResultThe three major themes identified in the study include: 1) misconceptions about ADRD symptoms, 2) stigma as a negative motivator, and 3) stigma weakens family support.ConclusionOverall, we argue that a combination of limited ADRD knowledge and awareness, and traditional beliefs drive ADRD‐related stigmatization. This consequently affects access to caregiving and family support. Strategies such as culturally appropriate ADRD awareness campaigns and formal long‐term care policies are urgently needed. These would help reduce the risk of ADRD‐stigmatization and strengthen informal dementia caregiving in Nigeria.

Experiences of informal caregivers taking care of heart surgery patients after discharge from hospital: a qualitative study

Abstract Background/Introduction Open heart surgery is still the main treatment option for severe coronary and heart valve disease. After discharge from hospital, caregivers of heart surgery patients are given the main responsibility for care of their next of kin at home. There is a lack of studies on caregivers’ experiences with information from health care professionals regarding the discharge to home. Purpose To explore the informal caregivers' information and communication experiences with health care professionals following discharge to home after heart surgery Methods In-depth interviews using a semi-structured interview guide during videotelephony (Facetime), phone or face-to-face onsite interview. The settings were university hospitals in Norway and Denmark respectively and were carried out between November 2022 – January 2023. Data was analyzed in the NVivo software tool following Braun and Clarke`s 6-step thematic analysis process. Results Twelve informal caregivers (10 women, 2 men, mean age 65 years) were interviewed two to four weeks after the heart surgery patient had been discharged to home. Four main themes were identified: i) Lack of information ii) Insecurity, iii) Responsibility without knowledge and iv) Readmission to hospital is a challenge. Shortly after discharge the caregivers realized the consequences of lack of information and knowledge to facilitate for their next of kin` comfort, and how to manage if their symptoms worsened. Several caregivers were afraid, and especially if readmission to hospital due to serious complications were needed (Figure 1). Conclusion(s) Informal caregivers of heart surgery patients lack information from health care professionals, and communication with health care professionals at hospital discharge to gain knowledge, feel secured, and to be prepared for the responsibility for follow-up of their next of kin at home.Figure 1.Caregivers heart surgery pts.

Impact of a COVID-19-Related Lockdown on the Experience of Informal Caregiving in Singapore

Introduction: Lockdowns, while limiting COVID-19 transmission, can affect provision of care by informal caregivers and their caregiving experience. We assessed, among informal caregivers in Singapore, (a) the perceived impact of a 2-month (April to May 2020) nationwide lockdown on their care provision, (b) correlates of different perceptions of the impact of the lockdown on care provision, and (c) association of different perceptions of the impact with negative and positive experiences of caregiving. Methods: In the August 2020 wave of the Singapore Life Panel (SLP; nationally representative, longitudinal monthly survey of Singapore citizens and permanent residents aged 50–70 years at baseline), 1,094 participants identified as informal caregivers reported whether their care provision became easier, remained the same, or became harder during the lockdown, compared to before the lockdown. We used multinomial logistic regression to assess the association of caregiver, care recipient, and caregiving context characteristics with their perceptions. Linear regression models examined the association of their perceptions with negative and positive experience domains of the modified Caregiver Reaction Assessment. Results: Just over one-third (36.1%) of the informal caregivers reported that their care provision became harder during the lockdown compared to before the lockdown. However, nearly one-fifth (18.0%) said that it became easier, and the rest (45.9%) said that it remained the same. Care provision was more likely to be perceived as having become harder among caregivers who were male, of Chinese ethnicity, in worse health, whose care recipients had functional limitations, who did not have caregiving support from cohabiting family members before the lockdown, and who had caregiving support from non-cohabiting family members before the lockdown. The perception that care provision became easier was less likely among caregivers who were of higher age, were unemployed, were socially isolated, and whose care recipients had functional limitations. Caregivers who perceived that care provision became harder during the lockdown were worse-off in negative experiences of caregiving. Conclusion: A nationwide lockdown did not make care provision harder for all informal caregivers. However, informal caregivers for whom it did were more likely to have greater negative experiences of caregiving. The heterogeneity of the impact of lockdowns and the possibility of offering flexibility to non-cohabiting family members who support caregiving should be important considerations when planning for such disruptions.

Journeying Apart: Exploring Informal Caregiver Experiences and Unmet Closures in Caring for COVID-19 Deceased.

The current study investigates the experiences and expectations of informal caregivers who lost their loved ones to the COVID-19 virus. The unusual circumstances of the deaths including physical isolation from their loved ones during the final hours before death significantly impacted their grieving process. In this interpretative phenomenological study, caregivers' experiences are explored through the lens of grief models and Gestalt perspectives. By thematic coding, seven superordinate themes emerged: Inability to accept death, Unfair nature of death, Helplessness, Regret and self-blame, Shattering of assumptive world, Using work as a distraction and Lack of government facilities. The findings of this study suggest that a significant number of informal caregivers continue suffering through the distress caused by the death of their loved ones in the pandemic, highlighting the need for grief counselling interventions for such bereaved informal caregivers.

How the dyads of heart failure patients and their informal caregivers cope with the disease process: a qualitative synthesis

Abstract Funding Acknowledgements Type of funding sources: None. Introduction Heart failure (HF) is a debilitating and progressive condition requiring consistent self-care by patients and their caregivers. Understanding the dyadic coping experience is crucial to inform the development of effective self-care interventions. Existing reviews focused on coping experience of patients or informal caregivers separately, without considering dynamic interaction between patients and caregivers. Purpose This review aimed to synthesize the qualitative studies to understand how patients and their caregivers interact and jointly cope with HF. Methods A systematic literature searching was conducted in nine electronic databases from inception to 11 June 2022. Manual searching of the reference list of relevant articles was also conducted. Articles were eligible if they focused on exploring the dyadic coping experience of HF patient-caregiver dyads aged 18 years or older. The Critical Appraisal Skills Programme tool for qualitative studies was used to assess the methodological quality of included articles. Thematic synthesis was adopted to synthesize the findings. Results Thirty articles were included in the review. Eleven articles were rated as high quality and nineteen as moderate quality. Three analytical themes emerged from the findings: (1) challenges in their changing and shared life experience, (2) conditions shaping dyadic coping experience, and (3) evolving dyadic coping strategies from the illness experience (Figure 1). Patients’ progressive and debilitating disease conditions disrupted the shared lives of the dyads, consequently causing a series of stressors for both to cope with. Dyadic coping of HF is influenced by the interpersonal context (i.e., congruence of illness perception, dyadic relationship and interaction, dyadic coping capabilities) and social context (i.e., professional and informal input). During the coping process, HF dyads utilized constructive or destructive methods of adjusting relationship boundaries, transforming patterns of dyadic coping and regulating emotion in a dyadic context. Besides, the strategies of amplifying positive changes and seeking meaning were critical for dyads to normalize HF in their lives. Conclusion HF imposed multiple stressors on the shared life of the dyads. Under the influence of interpersonal and social context, patients and caregivers co-regulated dyadic coping strategies to respond to dyadic stress, either adaptively or maladaptively. A relationship-focused dyadic approach is needed to optimize the synergy in the dyadic coping process and support dyads to cope with HF.