Listening to Caregivers’ Voices: The Informal Family Caregiver Burden of Caring for Chronically Ill Bedridden Elderly Patients

The informal family caregiver burden (IFCB) for chronically ill bedridden elderly patients (CIBEPs) is a major issue worldwide. It is a significant challenge due to the ongoing increased palliative care in the family setting; therefore, we explored the IFCB of caring for CIBEPs in Thailand. This article utilized a qualitative method, the total interpretive structural modeling (TISM) approach, with purposive sampling of thirty respondents between September and December 2020. The data were analyzed using cross-impact matrix multiplication applied to classification (MICMAC) to determine the relationship between the driving and dependence power of the enabling factors. The IFCB of the palliative care of CIBEPs was associated with primary care, nursing, extrinsic monitoring and complication prevention. The results showed that the IFCB involves taking responsibility, daily workload, follow-up caring, caring tasks, caregiving strain, financial distress, patient support, external support and caregiving strategy; thus, assistance with taking responsibility, extrinsic monitoring and follow-up care daily tasks may reduce the caregiver burden.

Consequences of a Diagnostic Label: A Systematic Scoping Review and Thematic Framework

Objectives: To develop a thematic framework for the range of consequences arising from a diagnostic label from an individual, family/caregiver, healthcare professional, and community perspective.Design: Systematic scoping review of qualitative studies.Search Strategy: We searched PubMed, Embase, PsycINFO, Cochrane, and CINAHL for primary studies and syntheses of primary studies that explore the consequences of labelling non-cancer diagnoses. Reference lists of included studies were screened, and forward citation searches undertaken.Study Selection: We included peer reviewed publications describing the perceived consequences for individuals labelled with a non-cancer diagnostic label from four perspectives: that of the individual, their family/caregiver, healthcare professional and/or community members. We excluded studies using hypothetical scenarios.Data Extraction and Synthesis: Data extraction used a three-staged process: one third was used to develop a preliminary framework, the next third for framework validation, and the final third coded if thematic saturation was not achieved. Author themes and supporting quotes were extracted, and analysed from the perspective of individual, family/caregiver, healthcare professional, or community member.Results: After deduplication, searches identified 7,379 unique articles. Following screening, 146 articles, consisting of 128 primary studies and 18 reviews, were included. The developed framework consisted of five overarching themes relevant to the four perspectives: psychosocial impact (e.g., positive/negative psychological impact, social- and self-identity, stigma), support (e.g., increased, decreased, relationship changes, professional interactions), future planning (e.g., action and uncertainty), behaviour (e.g., beneficial or detrimental modifications), and treatment expectations (e.g., positive/negative experiences). Perspectives of individuals were most frequently reported.Conclusions: This review developed and validated a framework of five domains of consequences following diagnostic labelling. Further research is required to test the external validity and acceptability of the framework for individuals and their family/caregiver, healthcare professionals, and community.

Dukungan Sosial Untuk Meningkatkan Kesejahteraan Psikologis Caregiver Pada Pasien Skizofrenia : Literature Review

Schizophrenia is a condition of inability to think logically. There is a disturbance in motor activity. Caregivers are vulnerable to burdens and stress that can interfere with their role as companions and fuctions in the family. Therefore, social support are needed so that caregivers cab face the stress and burden of caring for schizophrenic patient. The study aimed to determined social supports to Improve The Psychological Well-Being of caregivers of schizophrenia patients based on available evidence. The study used a literature review method. The databased used to search article were PubMed,Science Direct, and GARUDA.there were five article selected based on the suitability of the specified keywords, topic, and inclusion dan exclusion criteria. The articles were published in the 2012-2021 period. The instrument used was the Hawker instrument. There were 5 types of social support found in the articles. Those were social support as a coping streategy, instrumental social support in increasing patient interaction with other, maladaptive coping strategies used by family caregivers, instrumental social support which was positively related to social interaction andshowed lower levels of psychotic symptoms, social support perceived by family caregiver which played and important role as it improved their psychological-well being. These five social support to improve caregiver psychological well-being in schizophrenic patients are obtained from valid scientific avidence. Therefore, they can be used as scientific references to be applied as nursing care intervention.Keywords :Caregiver;schizophrenia;social support;psychological well-being AbstrakSkizofrenia merupakan keadaan dimanapemikiran tidak saling berhubungan secara logis dan adanya gangguan aktivitas motorik. Caregiver rentan mengalami beban dan stress yang dapat menganggu perannya sebagai pendamping dan fungsi dalam keluarga. Sehingga diperlukan dukungan sosial agar caregiver dapat menghadapi stress dan beban dalam merawat pasien skizofrenia.Penelitian bertujuan untuk mengetahui dukungan sosial untuk meningkatkan kesejahteraan psikologis caregiver pasien skizofrenia berdasarkan evidence yang tersedia. Penelitian menggunakan metode literature review. Database yang digunakan untuk pencarian artikel adalah PubMed, Science Direct, GARUDA. Artikel diseleksi berdasarkan kesesuaian dengan kata kunci, topik serta kriteria inklusi dan eksklusi yang ditentukan. Artikel digunakan dalam penelitian berjumlah 5 artikel yang terbit pada rentang waktu 2012-2021. Instrumen yang digunakan adalah instrumen Hawker. Terdapat temuan berupa 5 macam dukungan sosial untuk meningkatkan kesejahteraan psikologis caregiver pada pasien skizofrenia; dukungan sosial sebagai strategi koping, dukungan sosial instrumental meningkatkan interaksi pasien dengan orang lain, pengasuh keluarga menggunakan strategi koping maladaptif, dukungan sosial instrumental berhubungan positif dengan interaksi sosial dan menunjukan tingkat gejala psikotik lebih rendah, dukungan sosial yang dipersepsikan oleh family caregiver berperan penting karena dapat meningkatkan kesejahteraan psikologisnya. Kelimadukungan sosial untuk meningkatkan psikologis caregiver pada pasien skizofrenia ini didapatkan dari bukti ilmiah yang valid sehingga dapat dijadikan referensi ilmiah untuk diaplikasikan sebagai intervensi asuhan keperawatan.Kata kunci: caregiver;dukungan sosial;kesejahteraan psikologis;skizofrenia

Family Caregivers’ Experiences with Tele-Rehabilitation for Older Adults with Hip Fracture

Background: There is a knowledge gap for implementing tele-rehabilitation (telerehab) after hip fracture. We recently conducted a clinical trial (ClinicalTrials.gov Identifier: NCT02968589) to test a novel online family caregiver-supported rehabilitation program for older adults with hip fracture, called @ctivehip. In this qualitative substudy, our objective was to use semi-structured interviews to explore family caregivers experience with the telerehab program. Methods: Twenty-one family caregivers were interviewed between three and six months after the older adults completed @ctivehip. One occupational therapist with research and clinical experience, but not involved in the main trial, conducted and transcribed the interviews. We conducted a multi-step content analysis, and two authors completed one coding cycle and two recoding cycles. Results: Family caregivers who enrolled in @ctivehip were satisfied with the program, stated it was manageable to use, and perceived benefits for older adults’ functional recovery after hip fracture. They also suggested improvements for the program content, such as more variety with exercises, and increased monitoring by health professionals. Conclusions: This work extends existing literature and generates research hypotheses for future studies to test telerehab content and program implementation.

Relationship between dementia severity in older women and family caregivers’ preferences for shared decision making about breast cancer screening

Background/Objective: Mammography is one of the most effective ways to diagnose breast cancer early; however, its perceived benefits are complicated by terminal conditions such as dementia. By undergoing mammography, women with dementia risk treatment complications and false-positive results, which can exacerbate psychological distress. The lack of a standard of care confounds the individual roles of the patient, family caregiver, and physician in the decision-making process. This study evaluates the relationship between dementia severity and family caregiver preferences for shared decision making. Methods: Data were gathered from the Decisions about Cancer screening in Alzheimer’s Disease trial, which uses the Dementia Severity Rating Scale (DSRS) and a revised version of the Control Preferences Scale (CPS) to assess family caregiver preferences for decision-making as a dyad (patient and caregiver) and triad (patient, caregiver, and physician). Two multinomial logistic regression models assessed the relationship between DSRS and CPS categories (active, passive, and collaborative), while controlling for the caregivers’ age, gender, education, relationship to patient, self-perceived income, and race. Both models used the “active” group as the baseline; however, Model 1 examined preferences as a dyad and Model 2 as a triad. Results: Model 1 found a statistically significant association between dementia severity and a collaborative approach (p<0.001), and between dementia severity and a passive approach (p=0.014). For every one-unit increase in DSRS score, the odds of being in the collaborative group decreased by 0.083 and the odds of being in the passive group decreased by 0.085. There was no statistically significant association between dementia severity and decision-making preferences in Model 2. Clinical Significance: The association between dementia severity and family caregiver decision-making preferences supports the need for a standard of care regarding breast cancer screening in women with dementia.

Development and Pilot Implementation of a Patient Oriented Discharge Summary for Critically Ill Patients (PODS-ICU)

Background - Patients leaving the intensive care unit (ICU) often experience gaps in care due to deficiencies in discharge communication. This study aimed to develop an ICU specific patient-oriented discharge summary tool (PODS-ICU) and pilot test the tool for acceptability and feasibility.Methods - Patient-partners, ICU clinicians, and researchers met to discuss ICU patients’ specific informational needs and design the PODS-ICU through several cycles of iterative revisions. Research team nurses piloted the PODS-ICU with patient and family-caregiver participants in two ICUs in Calgary, Canada. Follow-up surveys on the PODS-ICU and its impact on discharge were administered to participants and ICU nurses.Results – Fifteen patient and family-caregiver participants were administered the PODS-ICU. Most participants felt that their discharge from the ICU was good or better (n=13), and some (n=9) participants reported a good understanding of why the patient was in ICU. Most participants (n=12) reported that they understood ICU events and impacts on the patient’s health. ICU nurses reported that the PODS-ICU was “not reasonable” in their daily clinical workflow due to “time constraint”. Conclusions - PODS-ICU improves patients and family-caregivers’ understanding of ICU events and health-implications but requires better integration with existing care processes to be feasible. Patient or Public Contribution – This work involved patient partners (i.e., individuals with lived experience as patients or family-caregivers) in tool development, study design, participant recruitment, and manuscript preparation.

Family Caregiver Training During Medicare Home Health Care: Clinician Perspectives

During Medicare home health care, providers often rely on family caregivers to help meet patients’ care needs. Beginning in 2018, CMS requires home health agencies to provide training to family caregivers. This qualitative study is the first research to examine current patterns of family caregiver training, and related facilitators and barriers, during Medicare-funded home health care. We conducted semi-structured key informant interviews with home health nurses and physical therapists (n=19) from 4 diverse agencies, then performed thematic analysis of interview transcripts using a hybrid inductive and deductive coding approach. Clinicians described family caregiver education as a dynamic and cyclical process: simultaneously providing patient care, training family caregivers, and gathering additional information about patient needs and caregiver capabilities, then adjusting the care plan accordingly. We present a model of this cyclic process and describe its four major stages: Initial Assessment, Education, Reassessment, and Adjustment. Additionally, clinicians identified a range of structural, individual, and interpersonal factors which impact their ability to successfully train family caregivers. We define each factor and, using illustrative quotes from our interviews, elucidate its role as a facilitator and/or barrier to clinicians’ educational efforts. Findings provide the first model of caregiver training during home health care and highlight policy and practice changes to better support clinicians in these efforts; including greater visit flexibility, access to more experienced clinical mentors, and standardized caregiver assessment tools designed for this unique care setting.

Caregiving Through Turbulent Times: Findings From the MIT AgeLab’s Longitudinal Study of Family Caregivers

Nearly one in five Americans is an unpaid family caregiver, and the need for family caregivers is projected to grow over the next several decades in the face of longer lifespans (AARP 2020). Yet the increasing centrality of family caregivers for providing care to an aging population highlights two knowledge gaps: first, the degree and experience of burden and stress caregivers manage around balancing care with other family and work responsibilities; and second, a lack of knowledge about the caregiver journey and the microtasks of care, including how caregivers leverage – or not – different tools, technologies and resources to support the care they provide. To develop a deeper understanding of these questions and others, the MIT AgeLab has built a research panel of over 1200 caregivers providing care to another adult family member. This symposium will present findings from the MIT AgeLab Caregiver Panel, including: 1) an examination of the extent to which family caregivers identify as such and how they feel about their roles; 2) how family caregivers experienced the COVID-19 pandemic both personally and around the care they provide; 3) caregivers’ use of and attitudes toward technology to support the care they provide; and 4) what caregivers identify as their key unmet needs. The session will include a facilitated discussion around the intersection of COVID-19 with caregivers’ technology use, experience of caregiving, and future needs, as well as to identify additional research questions and directions for future research with the MIT AgeLab Caregiver Panel.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial

Background Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads’ emotional functioning and self-efficacy. Methods We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. Discussion DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Trial registration Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349. Date and version identifier 20211209_DIAdIC_Protocol_Article.