Experiences Of Informal Caregivers Research Articles

Dementia caregiving during the COVID-19 pandemic: an interpretative phenomenological analysis of caregivers' experiences.

To explore the lived experience of informal dementia caregivers during the COVID-19 pandemic. Interpretative Phenomenological Analysis (IPA) was employed. Eight primary informal caregivers were recruited from a community mental health service for older people when attending in their role as caregiver of a service-user. Semi-structured interviews were conducted at home or in the clinic based on the participants' convenience and preference. IPA was completed following Smith and colleagues framework for analysis. Six group experiential themes, each with a number of subthemes, emerged from the cross-case interpretative analysis: the ambivalent experience of caregiving (subtheme: those complex emotional experiences); navigating lockdown: lived challenges and opportunities (subthemes: the pervasive fear, intensification of existing struggles, being prevented from caring for a loved one, and lockdown as a time for opportunity); transitioning out of lockdown (subthemes: regaining freedom, but restricted freedom after all and being in a lockdown of one's own); the present with COVID-19, but mostly with dementia (subthemes: dementia, a disease that does not pause, and 'takeaways' from the journey); looking into the future (subthemes: embracing COVID-19 and the true needs); and a word on coping (subtheme: managing it all as best one can). Findings demonstrate the significance of the meaning caregivers ascribed to their experiences on their wellbeing and ability to cope in times of COVID-19 and thereafter. Gaining an understanding of the caregivers' unique experiences is crucial to appreciate how to best support them.

Informal caregivers' feeding experiences for children with cancer: a qualitative systematic review protocol.

The objective of this review is to synthesize the experiences of informal caregivers' feeding practices for children with cancer. Changes in eating among children with cancer impact their nutritional status, leading to several negative outcomes. In addition to interventions given by health care providers, informal caregivers' experiences in feeding these children are worth exploring. This review will include qualitative studies or the qualitative component of mixed method studies examining informal caregivers' experiences of feeding children with cancer under 18 years old, published in English or Thai in any year up to the present. This review will follow the JBI approach for qualitative systematic reviews. A full search strategy for MEDLINE (PubMed) was developed from an initial limited search of MEDLINE (PubMed) and CINAHL (EBSCOhost) to identify articles on the topic. The search strategy will be adapted for each database, including Embase (Ovid), MEDLINE (PubMed), CINAHL (EBSCOhost), Cochrane Library (CENTRAL), LILACS (BVS), PsycINFO (Ovid), Web of Science, Scopus, and ThaiJO (TCI). The reference lists of studies included in the review will be hand-searched for additional studies. Sources of unpublished studies and gray literature will also be searched. Two reviewers will separately screen for eligible studies, perform the critical appraisal, and extract data. They will then synthesize via meta-aggregation and summarize the data. The final synthesized findings will be graded using the ConQual approach to establish confidence in the qualitative research synthesis. PROSPERO CRD42024501382.

Experiences of empathy of caregivers caring for persons with dementia: a qualitative systematic review protocol.

The aim of this systematic review will be to explore the experiences of empathy in informal caregivers caring for persons with dementia. Positive caregiving experiences of informal caregivers caring for persons with dementia have many beneficial outcomes, such as improved well-being of both caregivers and care receivers and a higher quality of care for the persons with dementia. Empathy is a factor associated with positive caregiving experiences and is strongly correlated with reduced depression and reduced anxiety in informal caregivers of persons with dementia. Therefore, it is essential to understand the experiences of empathy, especially the caregiver characteristics such as their caring behaviors, relationship with the patient, and cultural beliefs. This review will include studies on the empathy experiences of informal caregivers caring for persons with any type of dementia. It will consider qualitative studies, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, and feminist research. This study will follow the JBI guidance for systematic reviews of qualitative evidence and will use the meta-aggregation approach to synthesise qualitative studies. The search strategy will aim to locate both published and unpublished studies in English, Chinese, and Thai, with no date restrictions. Methodological quality will be evaluated using the standard JBI critical appraisal checklist for qualitative research. The findings will be pooled using the meta-aggregation approach or will be presented in narrative format. PROSPERO CRD42023490472.

Social class and informal caregiving for family members with Alzheimer’s disease: the role of economic capital, cultural health capital, and social capital

This paper explores the multifaceted experiences of informal caregivers providing care for family members afflicted with Alzheimer’s disease, examining how these experiences are influenced by social class, and the role of economic capital, cultural health capital, and social capital. Drawing upon Bourdieu’s theoretical framework, this paper conducts a qualitative thematic analysis to analyze twenty-five semi-structured interviews with caregivers and three interviews with medical professionals. The paper reveals how distinct forms of capital (economic, social, and cultural health capital) shape the caregiving experiences for family members with Alzheimer’s disease. Notably, upper-class caregivers leverage both economic and cultural health capital to ease the burden associated with caregiving, while lower-class caregivers harness social capital. The paper challenges the prevailing deficit model of capital by shedding light on how lower-class caregivers demonstrate resourcefulness in seeking support beyond the health system. However, the findings also underscore a persistent and widening discrepancy in the caregiving experience. The paper concludes with policy suggestions, substantive and theoretical implications, and acknowledgement of methodological limitations.

Exploring the Experiences of Informal Caregivers of HIV Positive Pregnant and Breastfeeding Women on Existing HIV Services in Fako Division, Southwest Region, Cameroon: A Qualitative Study

Exploring the Experiences of Informal Caregivers of HIV Positive Pregnant and Breastfeeding Women on Existing HIV Services in Fako Division, Southwest Region, Cameroon: A Qualitative Study

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, even though they also often lack the 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.

Capturing the perspectives of African American informal dementia caregivers: a phenomenological study

ABSTRACT Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers’ experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers’ experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

Patients and informal caregivers in the lead: a qualitative study on the experiences of patients, informal caregivers, and healthcare professionals with involvement in treatment, e-health and self-management programs

BackgroundA significant proportion of patients and informal caregivers favor an active role in decisions concerning their health. Simultaneously, governments aim to shift treatment from a professional care setting to a community setting, in light of an ageing population, a decreasing number of health workers and allocation of scarce resources. This transition of care solicits patients’ and informal caregivers’ ability to self-manage. Therefore, the Maastricht University Medical Centre + has established the Academy for Patients and Informal caregivers. The aim is to proactively and professionally support patients and their informal caregivers to enhance their self-management. For that, the Academy offers activities in three categories: (1) instruction of nursing techniques, (2) training of e-health competencies and (3) the provision of self-management programs. Both patients with an episodic care need, as well as patients and informal caregivers with chronic illness, are eligible to participate in the Academy’s activities. However, little is known about the experience of these interventions from the perspective of patients, informal caregivers and healthcare professionals.MethodsWe conducted semi-structured interviews with 15 patients, 8 informal caregivers and 19 health care professionals who either participated in, referred to or received patients from the Academy. Topics revolved around self-management and the Quadruple aim, covering topics such as patient experiences, healthcare costs, health and well-being of the population and improving work life for health professionals. Data were analyzed using thematic analysis.ResultsPatients and caregivers experienced an increase in the ability to manage health needs independently, leading to increased mental well-being and self-efficacy. They felt recognized as partners in care, although managing illness needs came with its own burdens. Health care professionals indicated that they felt assured of the quality, uniformity and availability of activities due to its central organization, with instruction nurses finding greater meaning in their work. On the level of health care systems, participants in this study mentioned a decrease in use of formal healthcare, whilst enabling a more equitable division of care.ConclusionStakeholders’ experiences with the Academy for Patients and Informal caregivers indicate that participation contributes to development of self-management, whilst also improving working conditions, reducing the appeal to formal care and advancing equity in healthcare. The burden for patients and informal caregivers is to be considered in future developments.

The Lived Experience of Informal Caregivers of People Who Have Severe Mental Illness and Coexisting Long-Term Conditions: A Qualitative Study.

People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carersand a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influencecaregiver burden. Our PPI panel DIAMONDS Voice provided guidance on this study fromconception, designand development of interview guides and recruitment materialsto final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

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.

A qualitative exploration of the lived experience of informal caregivers of people with severe mental illness and co-existing long-term conditions

IntroductionPeople with severe mental illness (SMI), including schizophrenia and bipolar disorder, experience significant health inequalities and are more likely to develop long-term physical health conditions (LTCs), such as type 2 diabetes and cardiovascular disease. Many people with SMI rely on informal caregivers, typically friends and family, to support their health and enable them to live in the community. Informal caregivers of people with SMI experience high levels of caregiver burden, social isolation, and poor health outcomes. However, it is unclear how co-existing LTCs contribute to the caregiving experience.ObjectivesThe aim of this study was to explore the lived experience of informal caregivers of people with co-existing SMI and LTCs.MethodsWe conducted a qualitative study with informal caregivers of people with co-existing SMI and LTCs in England. We recruited 12 informal caregivers and conducted five semi-structured interviews and two focus groups between December 2018 and April 2019. The interviews and focus groups were audio recorded, transcribed verbatim and thematically analysed.ResultsSMI impacts profoundly on the health and well-being of both service users and their informal caregivers. Service users were described as too unwell with their SMI to engage in self-management of their mental and physical health, with the primary responsibility for these tasks falling to informal caregivers. There were significant barriers to adequate physical healthcare for service users, therefore informal caregivers needed to advocate extensively for their loved ones to ensure access to services. Informal caregivers felt significantly under-supported and struggled with the caregiver burden associated with SMI and LTCs. This burden included the constant monitoring of risk, anxiety around the vulnerability of their loved one, repeated hospitalisations, physical health concerns, lack of respite services, lack of recognition of their role, the guilt associated with paternalistic care, shame and stigma, and the difficulties managing the changeable nature of SMI.ConclusionsInformal caregivers of people with SMI face an additional caregiver burden resulting from co-existing LTCS. This adds substantially to their caring role, yet they do not receive the necessary support, and therefore their own health and wellbeing are negatively impacted. Improved recognition of the role of informal caregivers and additional support, including improved provision of respite services, are needed to improve the well-being of informal caregivers.Disclosure of InterestC. Carswell: None Declared, J. Brown: None Declared, D. Shiers Consultant of: DS is an expert adviser to the National Institute for Health and Care Excellence Centre for Guidelines; the views expressed are those of the authors and not those of National Institute for Health and Care Excellence., P. Coventry: None Declared, N. Siddiqi: None Declared

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.

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.