Aim: The purpose of this paper is to conceptually define "caregiver willingness" for application to a family member providing care to a critically ill loved one during an intensive care unit (ICU) hospitalization. Background: Delivering care to a family member may have psychological benefits for both the caregiver and the critically ill loved one; however, the willingness of family members to provide care is an elusive concept. Examination of the "caregiver willingness" concept will help to advance nursing science. Design: Walker and Avant's eight step strategy guided identification of the defining attributes, empirical referents, antecedents, and consequences of "caregiver willingness." Data Source: Academic Search Complete, CINAHL, MEDLINE, APA PsycInfo, and Psychology and Behavioral Health Collections were used to search for literature published between 2000 and 2020. Review Methods: A literature search was conducted using keywords, such as "caregiver," "willingness," "willing to care," "family or families or relatives or siblings or caregiver," and "critically ill or intensive care or ICU or critical care." Results: A definition of caregiver willingness was constructed and defined as "a family member or significant other's affirmation or acknowledgment of openness to engage in the physical and/or emotional supportive care of a loved one who is critically ill and cannot perform self‐care." Conclusion: The definition provides a foundation for instrument development to measure caregiver willingness and possible theory expansion for family engagement and caregiving in the ICU.
Introduction: Transitions of care between acute hospital and community settings are points of vulnerability for people with geriatric syndrome. Routinely including informal caregivers into the transition processes may mitigate risk. Guidance for operational aspects of caregiver inclusion is currently lacking in healthcare policy and fails to address the barriers faced by caregivers and healthcare professionals. Methods: A questionnaire and a semi-structured interview were piloted with acute care physiotherapists who facilitate patient discharge into community settings. The questionnaire was analysed using summary statistics and interviews were thematically analysed by researchers, using NVivo 12 software. Results: Questionnaire responses indicated mixed satisfaction with current caregiver integration by the multidisciplinary team. Four themes were shaped in the interviews: inconsistent caregiver engagement, individuals working in a system, an outdated model of care, and invisible care gaps. Discussion: Feedback loops constructed from participant questionnaires and interview responses informed the identification of barriers and solutions. These are system wide and address automated integration, cultural shift, reimbursement models, and flexible structures to enhance informal caregiver participation. Future research is urgently required to translate, implement, and evaluate enhanced caregiver integration to ensure sustainable, person-centred healthcare delivery.
Background: Long-term care, also known as aging services, is evolving to meet the needs of the aging population in the United States, which is increasingly ethnically and racially diverse. The objective of this qualitative multiple case study was to understand how immediate family members experienced the transition of older African American women as they moved into assisted living facilities. Design: Black feminist theory provided a theoretical framework. Narrative interview data were collected from four adult children family caregivers who facilitated the move. Results: Three themes emerged from the content analysis: (a) Transition is not planned in advance and does not happen until a critical event or incident occurs that changes the older adult’s physical, social, or emotional status; (b) The transition was more difficult than had been thought for the older women and their families; and (c) Older adults expect that family members stay connected and involved after the transition, and family members may have similar expectations. Human services professionals may use the results to provide better-informed programs and services for older African American women and their family member caregivers. Conclusion: Social change implications suggest developing a transition model to improve assessment and evaluation processes, promote cultural competence initiatives, and promote a person-centered approach to the transition process in order to begin to identify a framework that might be useful for human services practitioners.
BACKGROUND: Caregivers play a crucial role in taking over the important task of looking after patients post-hospitalisation. Caregivers who are unfamiliar with patients' post-discharge care often experience caregiver stress, while patients may see deterioration in their condition. As caregivers are our core partners in healthcare, it is therefore necessary for patient navigators to recognise, assess and address caregivers' needs or burden as early as on admission to hospital. Patient navigators are trained registered nurses whose main role is to provide patients and caregivers with personalised guidance through the complex healthcare system. OBJECTIVES: This quality improvement study examined the efficacy of using the Zarit Burden Interview as a tool in helping patient navigators recognise caregiver burden early and the effectiveness of targeted interventions on caregiver burden. METHODS: Various quality improvement tools were used. Eighty-six patient-caregiver dyads who met the inclusion criteria were enrolled. Informal caregivers were assessed for caregiver burden using the Zarit Burden Interview during hospital admission (T0) and again at 30 days postdischarge (T1), post-intervention. RESULTS: There was significant improvement in the Zarit Burden mean scores from T0 to T1 reported for the 80 dyads who completed the study, even after adjusting for covariates (T0 mean=11.08, SD=7.64; T1 mean=2.48, SD=3.36, positive ranks, p<0.001). Highest burden identified by most caregivers were the personal strain; trying to meet other responsibilities and uncertain about what to do in caring for their loved one. By recognising the different aspects of caregiver burden early, patient navigators were able to focus their interventions. CONCLUSION: Early recognition of caregiver burden and targeted interventions were found to be effective at reducing caregiver burden in a tertiary hospital.
What Is Known on the Subject: Family members and friends (informal carers) are very important for providing support to people with mental health difficulties. When these carers are included to care planning patients seem to benefit, as they are less likely to relapse.; What the Paper Adds to Existing Knowledge: There are three types of interventions including carers in the patients'transition 1) programmes that offer education in hospital; 2) programmes that involve carers in planning the patients discharge; and 3) programmes that involve carers in hospital care, discharge planning and also follow-up in the community. Interventions including carers that take place both in the hospital and the community have the clearest evidence for benefit on relapse reduction.; What Are the Implications for Practice: Comprehensive interventions have the best evidence for effectiveness but challenges in their implementation and resourcing should be considered. It might worth trying to identify and test simpler interventions focusing on discharge planning that can be used in busy services and require more limited resources whilst providing opportunities for the participation of carers.;
Abstract: INTRODUCTION: Involving informal carers (family and friends of patients) in mental health interventions can lead to positive clinical and psychosocial outcomes such as relapse prevention or treatment adherence.; Aim/question: To explore the evidence on the effectiveness of different models that involve carers in the transition between hospital and community mental health care.; Methods: Five electronic databases (PsycINFO, CINAHL, MEDLINE, Embase and Scopus) and Grey literature (Open Grey and Grey Literature report) were systematically searched. The results were analysed using a narrative synthesis.; Results: Fourteen papers were identified. They described twelve interventions that were categorized into three groups: 1) purely educational programmes in preparation of discharge; 2) programmes that involved carers in planning the transition from the mental health inpatient treatment to community mental health services; and 3) programmes that bridged into the aftercare involving carers in community follow-up. The most comprehensive interventions, i.e. those including psychoeducation, care planning and aftercare follow-up were better evaluated and showed a clearer benefit in improving long-term outcomes and, in particular, reduce re-hospitalization.; Implications for Practice: Comprehensive interventions showed the clearest benefit in improving long-term clinical outcomes of patients. Future research should explore implementation, costs and cost-effectiveness, as comprehensive interventions delivered across different settings are likely to require wide-ranging organizational changes and significant resources.
Background Multiple changes are made to older patients' medicines during hospital admission, which can sometimes cause confusion and anxiety. This results in problems with post-discharge medicines management, for example medicines taken incorrectly, which can lead to harm, hospital readmission and reduced quality of life. Aim To explore the experiences of older patients and their family carers as they enacted post-discharge medicines management. Design Semi-structured interviews took place in participants' homes, approximately two weeks after hospital discharge. Data analysis used the Framework method. Setting and participants Recruitment took place during admission to one of two large teaching hospitals in North England. Twenty-seven participants aged 75 plus who lived with long-term conditions and polypharmacy, and nine family carers, were interviewed. Findings Three core themes emerged: impact of the transition, safety strategies and medicines management role. Conversations between participants and health-care professionals about medicines changes often lacked detail, which disrupted some participants' knowledge and medicines management capabilities. Participants used multiple strategies to support post-discharge medicines management, such as creating administration checklists, seeking advice or supporting primary care through prompts to ensure medicines were supplied on time. The level to which they engaged with these activities varied. Discussion and conclusion Participants experienced gaps in their post-discharge medicines management, which they had to bridge through implementing their own strategies or by enlisting support from others. Areas for improvement were identified, mainly through better communication about medicines changes and wider involvement of patients and family carers in their medicines-related care during the hospital-to-home transition.
Background: The majority of stroke survivors return to their homes and need assistance from family caregivers to perform activities of daily living. These increased demands coupled with the lack of preparedness for their new roles lead to a high risk for caregivers developing depressive symptoms and other negative outcomes. Follow-up home support and problem-solving interventions with caregivers are crucial for maintaining stroke survivors in their homes. Problem-solving interventions are effective but are underused in practice because they require large amounts of staff time to implement and are difficult for caregivers logistically.; Objective: The aim of this study is to test a problem-solving intervention for stroke caregivers that can be delivered over the telephone during the patient's transitional care period (time when the stroke survivor is discharged to home) followed by 8 asynchronous online sessions.; Methods: The design is a two-arm parallel randomized clinical trial with repeated measures. We will enroll 240 caregivers from eight Veterans Affairs (VA) medical centers. Participants randomized into the intervention arm receive a modified problem-solving intervention that uses telephone and web-based support and training with interactive modules, fact sheets, and tools on the previously developed and nationally available Resources and Education for Stroke Caregivers' Understanding and Empowerment Caregiver website. In the usual care group, no changes are made in the information, discharge planning, or care the patients who have had a stroke normally receive, and caregivers have access to existing VA resources (eg, caregiver support line, self-help materials). The primary outcome is a change in caregiver depressive symptoms at 11 and 19 weeks after baseline data collection. Secondary outcomes include changes in stroke caregivers' burden, knowledge, positive aspects of caregiving, self-efficacy, perceived stress, health-related quality of life, and satisfaction with care and changes in stroke survivors' functional abilities and health care use. The team will also determine the budgetary impact, facilitators, barriers, and best practices for implementing the intervention. Throughout all phases of the study, we will collaborate with members of an advisory panel.; Results: Study enrollment began in June 2015 and is ongoing. The first results are expected to be submitted for publication in 2021.; Conclusions: This is the first known study to test a transitional care and messaging center intervention combined with technology to decrease caregiver depressive symptoms and to improve the recovery of stroke survivors. If successful, findings will support an evidence-based model that can be transported into clinical practice to improve the quality of caregiving post stroke.; Trial Registration: ClinicalTrials.gov NCT01600131; https://www.clinicaltrials.gov/ct2/show/NCT01600131.; International Registered Report Identifier (irrid): DERR1-10.2196/21799.
Introduction: Informal caregiving during hospitalization of older adults is significantly related to hospital processes and patient outcomes. Studies in home settings demonstrate that ethno-cultural background is related to various aspects of informal caregiving; however, this association in the hospital setting is insufficiently researched. Objectives: Our study explore potential differences between ethno-cultural groups in the amount and kind of informal support they provide for older adults during hospitalization. Methods This research is a secondary data analysis of two cohort studies conducted in Israeli hospitals. Hospitalized older adults are divided into three groups: Israeli-born and veteran immigrant Jews, Arabs, and Jewish immigrants from the Former Soviet Union (FSU). Duration of caregiver visit, presence in hospital during night hours, type of support (using the Informal Caregiving for Hospitalized Older Adults scale) are assessed during hospitalization. Results are controlled by background parameters including functional Modified Barthel Index (MBI) and cognitive Short Portable Mental Status Questionnaire (SPMSQ) status, chronic morbidity (Charlson), and demographic characteristics. Results: Informal caregivers of "FSU immigrants" stay fewer hours during the day in both cohorts, and provide less supervision of medical care in Study 2, than caregivers in the two other groups. Findings from Study 1 also suggest that informal caregivers of "Arab" older adults are more likely to stay during the night than caregivers in the two other groups. Conclusions: Ethno-cultural groups differ in their patterns of caregiving of older adults during hospitalization. Health care professionals should be aware of these patterns and the cultural norms that are related to caregiving practices for better cooperation between informal and formal caregivers of older adults.
Objective: To understand the management of home care by family caregivers of dependent elderly people after hospital discharge.; Methods: Qualitative research guided by hermeneutics-dialectic, anchored in the theory of communicative action. Data collection took place using a semi-structured interview with 11 participants.; Results: Two categories were constructed: Management of the many types of care by the caregiver and the relationship between family caregiver and health care network. Care and management actions carried out routinely cause major changes in the family caregiver's life. He/she does not recognize planning, home care periodicity or support in required procedures.; Final Considerations: The management of home care for dependent elderly people after hospital discharge is complex, involving physical and emotional overloads, as well as difficulties in getting support from health services. The planning shared between the health team and the family since the discharge is required, and the better visibility of the role of primary care when the patient is assisted by a home care service.
Aim To understand how family caregivers of older adults hospitalized for orthopaedic surgery are integrated by nurses in delirium prevention care. Design Multiple case study. Methods The sample consisted of eight cases. Each case comprised an older adult, a family caregiver, and a nurse. Data were collected from September 2017 - April 2018 through various instruments, including semi-structured interviews and family caregiver logs. Within- and across-case analyses were conducted, based on the model of The Care Partner Engagement developed by Hill, Yevchak, Gilmore-Bykovskyi, & Kolanowski (Geriatric Nursing, 35, 2014, 272). Results Two themes emerged: (a) family caregivers were engaged in caring for the older adults during their hospital stay, though they had differences in terms of views and needs; and (b) family caregivers communicated with nurses but nurses did not recognize their role and did not integrate them much in care. Conclusion The presence and availability of family caregivers, their sense of responsibility towards the hospitalized older adults, and their positive effects on them suggest that family caregivers could be integrated more systematically in a care partnership with nurses. Poor integration of family caregivers in delirium prevention care shows that nurse delirium prevention competencies and their relational skills for communicating effectively with family caregivers need to be developed further. Impact Integrating family caregivers in delirium prevention care for older adults is a challenge for nurses. Family caregivers are engaged during the hospitalization of older adults, though differences and problems exist between the two groups. While there is communication between patients, family caregivers, and nurses, nurses do not recognize the role of family caregivers and hardly integrated them in the delirium prevention care of hospitalized older adults. Nurses must adopt a patient- and family-centred approach. Care and training facilities must make resources available to implement this approach in nursing practice.
Background: Relatives of intensive care unit (ICU) patients play an important role as caregivers and can experience emotional distress, also referred to as post-intensive care syndrome-family. A deeper understanding of what relatives go through and what they need may provide input on how to strengthen family-centred care and, in the end, contribute to the reduction of symptoms of post-intensive care syndrome-family. Method: This is a qualitative descriptive study with semistructured face-to-face interviews after ICU transfers. Findings: A total of 13 relatives of ICU patients participated. Relatives of ICU patients expressed five types of experiences after transfer from the ICU to the general ward: (1) relief, (2) uncertainty, (3) need to be acknowledged in becoming a caregiver, (4) sharing expectations, and (5) need for continuity in care. Relatives experience major uncertainties and prefer to be more actively involved in care and care decisions. Conclusion: Relatives of ICU patients experience gaps in care during the transition from the ICU to a general ward. Nurses can play a crucial role in the need for continuity of care by proactively involving relatives during the care pathway of ICU patients.
Background: The Caregiver Advise, Record, Enable (CARE) Act encourages inclusion of family caregivers in the hospitalization process for patients. Translating the state laws into meaningful changes within the health care delivery system can be challenging and requires time. This study sought to examine early compliance with and implementation of the CARE Act reported by hospitals in the Commonwealth of Pennsylvania.; Methods: We sent an online survey to hospital executives in Pennsylvania in 2017. Descriptive statistics were computed to examine hospital characteristics and used to assess compliance and implementation of the CARE Act tenets.; Results: Most hospitals reported that changes have been and are being made to comply with the CARE Act (90.9%). Hospital executives reported that the family caregiver designation is available in 63.6% of the hospitals and notification of patient discharge is available in 45.5%. Hospital executives reported that family caregiver education and instruction is occurring in 31.8% of all inpatient stays. Hospital executives indicated that they are still developing processes to comply with the legislation and to integrate family caregivers into hospital systems and processes.; Conclusions: Our findings suggest that hospitals are complying with the legislation, while fully operationalizing the components of the CARE Act is a work in progress.
Purpose To identify transitional palliative care (TPC) interventions for older adults with non-malignant chronic diseases and complex conditions. Design/methodology/approach A systematic review of the literature was conducted. CINAHL, Cochrane Library, Embase and Pubmed databases were searched for studies reporting TPC interventions for older adults, published between 2002 and 2019. The Crowe Critical Appraisal Tool was used for quality appraisal. Findings A total of six studies were included. Outcomes related to TPC interventions were grouped into three categories: healthcare system-related outcomes (rehospitalisation, length of stay [LOS] and emergency department [ED] visits), patient-related outcomes and family/carer important outcomes. Overall, TPC interventions were associated with lower readmission rates and LOS, improved quality of life and better decision-making concerning hospice care among families. Outcomes for ED visits were unclear. Research limitations/implications Positive outcomes related to healthcare services (including readmissions and LOS), patients (quality of life) and families (decision-making) were reported. However, the number of studies supporting the evidence were limited. Originality/value Studies examining the effectiveness of existing care models to support transitions for those in need of palliative care are limited. This systematic literature review identified and appraised interventions aimed at improving transitions to palliative care in older adults with advanced non-malignant diseases or frailty.
Background: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs' health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers' health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention's effect. Methods: The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. Discussion: This study addresses 2 independent yet interrelated health care foci-transitional care and palliative care-by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. Trial Registration: ClinicalTrials.gov NCT03339271 . Registered on 13 November 2017. Protocol version: 11.
Background: Caregivers play a crucial role in taking over the important task of looking after patients post-hospitalisation. Caregivers who are unfamiliar with patients' post-discharge care often experience caregiver stress, while patients may see deterioration in their condition. As caregivers are our core partners in healthcare, it is therefore necessary for patient navigators to recognise, assess and address caregivers' needs or burden as early as on admission to hospital. Patient navigators are trained registered nurses whose main role is to provide patients and caregivers with personalised guidance through the complex healthcare system.; Objectives: This quality improvement study examined the efficacy of using the Zarit Burden Interview as a tool in helping patient navigators recognise caregiver burden early and the effectiveness of targeted interventions on caregiver burden.; Methods: Various quality improvement tools were used. Eighty-six patient-caregiver dyads who met the inclusion criteria were enrolled. Informal caregivers were assessed for caregiver burden using the Zarit Burden Interview during hospital admission (T0) and again at 30 days postdischarge (T1), post-intervention.; Results: There was significant improvement in the Zarit Burden mean scores from T0 to T1 reported for the 80 dyads who completed the study, even after adjusting for covariates (T0 mean=11.08, SD=7.64; T1 mean=2.48, SD=3.36, positive ranks, p<0.001). Highest burden identified by most caregivers were the personal strain; trying to meet other responsibilities and uncertain about what to do in caring for their loved one. By recognising the different aspects of caregiver burden early, patient navigators were able to focus their interventions.; Conclusion: Early recognition of caregiver burden and targeted interventions were found to be effective at reducing caregiver burden in a tertiary hospital.
Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care. Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched. Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement. Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility. Encourage health care providers to collaborate with patients with hip fracture and caregivers on decision-making about rehabilitation and recovery goals, discharge planning and safe patient transfer. Assess the needs of patients with hip fracture and caregivers before, during and after a care transition to deliver patient and family-centered care across multiple care settings. Provide patients with hip fracture and caregivers standardized information-exchange tools to increase timely, accurate exchange of information during care transitions. Encourage formal discussions about roles and responsibilities in the transitions in care process among patients with hip fracture, caregivers and health care providers.
BACKGROUND: In the European Union (EU), informal caregivers provide 60 per cent of all care. Informal caregiving ranges from assistance with daily activities and provision of direct care to helping care recipients to navigate within complex healthcare and social services systems. While recent caregiver surveys document the impact of informal caregivers, systematic reviews show that they have unmet needs. Because of the political desire to reduce the length of hospital stays, older patients are discharged from the hospital 'quicker and sicker' than before. The transition between different levels of the healthcare system and the period after hospital discharge is critical for elderly patients. Caregivers' perspectives on the quality of older patients' care journeys between levels of the healthcare system may provide valuable information for healthcare providers and policymakers. This study aims to explore older patient's informal caregivers' views on healthcare quality in the hospital and in the first 30days after hospitalisation. METHOD: We conducted semi-structured individual interviews with 12 participants to explore and describe informal caregivers' subjective experiences of providing care to older relatives. The interviews were then transcribed and analysed thematically. RESULTS: The analysis yielded the overarching theme 'Informal caregivers - a health service alliance - quality contributor', which was divided into four main themes: 'Fast in, fast out', 'Scant information', 'Disclaimer of responsibility' and 'A struggle to secure professional care'. The healthcare system seemed to pay little attention to ensuring mutual understandings between those involved in discharge, treatment and coordination. The participants experienced that the healthcare providers' main focus was on the patients' diseases, although the health services are supposed to view patients holistically. CONCLUSION: Based on the information given by informal caregivers, health services must take into account each person's needs and preferences. To deliver quality healthcare, better coordination between inter-professional care teams and the persons they serve is necessary. Health professionals must strengthen the involvement of caregivers in transitions between care and healthcare. Future work should evaluate targeted strategies for formal caregivers to cooperate, support and empower family members as informal caregivers.
Australia faces the challenge of an ageing population. The incidence of people with dementia unable to live in the community is expected to rise leading to demands on care facilities to provide specialised care. This paper reports on the effect a purpose-built Memory Support Unit has on multiple participants during the transition from home, or an aged care residence, to high level dementia care. The aim of this research was to understand the effect of a purpose-built Memory Support Unit on the experiences of those with dementia who are transitioning into this environment, their family or carers and staff. A qualitative descriptive methodology was adopted to frame the research. Face-to-face interviews were conducted with nine family members, two residents and three Registered Nurses. A purpose-built Memory Support Unit may have a positive effect on the older person, their families, carers and staff, thus improving the experience of all participants as the older person transitions into dementia care. Optimising design of the physical environment may foster a more person-centered orientation to care and positive outcomes for residents, family members or carers and staff. Purpose built environments may have a meaningful subjective effect on the wellbeing of older people during the transition from their residence to permanent dementia care, their family, carers and staff. It is recommended that architects, funding agencies and aged care providers engage with the growing body of evidence that purpose-built environments, such as the Memory Support Unit, to enhance the quality of the experience of those transitioning to high level dementia care, their family or carers and staff.
Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. Design: Longitudinal qualitative study with thematic analysis. Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges. Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.
Objective: development and validation the content of a nursing care protocol with educational interventions for family caregivers of elderly people after stroke. Methods: a methodological study conducted in three stages: (1) protocol development through literature review; (2) pretest with multidisciplinary team, analyzed with literature articulation; (3) protocol validation by the Delphi Technique. Results: the protocol was structured in the following areas: Disease Guidelines; Emotional Support; Using the Health Care Network; Diet; Airways; Medications; Hygiene; Skin Care; Disposal; Dressing/Undressing; Positioning and Transfer; Fall Prevention. In the pretest, eight experts assessed protocol clarity and content. In validation, there were two rounds by the Delphi Technique. The validated protocol consisted of 12 domains, containing 42 items and 240 care guidelines. Conclusion: the protocol qualifies the transition of care after hospital discharge assisting nurses in home care practice.
Background and Purpose: A hip fracture is an unexpected traumatic event. Caregivers of patients with an acute hip fracture have only short time to learn the new skills of postoperative care and handling of the patient. This sudden responsibility changes the life of the caregivers who perceive a higher level of preoccupation about the care of their family member/friend. The objective of this study was to develop and test feasibility for a post-hip fracture inpatient instructional workshop for caregivers of older adults with hip fracture and to establish their knowledge of hip fracture recovery and perceptions of the utility and satisfaction with the workshop. Methods: This 2-part study was conducted at the University Hospital of Granada, Spain, from September 2016 to April 2017. We invited caregivers of patients (60 years of age or older) hospitalized for a surgically treated fall-related hip fracture to attend an informational and skill development hospital-based workshop (60-90 minutes in duration) on post-discharge management strategies. Following the workshop, we invited caregivers to complete a questionnaire to obtain their knowledge about care after hip fracture and their perceived concerns. Furthermore, we requested that they provide feedback on workshop utility and satisfaction (0-10 points) and suggestions for improving the workshop. Results and Discussion: We delivered 42 workshops over an 8 month period. One hundred three caregivers attended the sessions and enrolled in the study, mean (SD) age: 52.1 (12.8) years. Sixty-nine percent of the caregivers were women. Caregivers' main concern was apprehension for delivering physical care to their family member/friend (75%), followed by lack of time (42%). Caregivers who were employed were 3.16 times as likely to be concerned about time availability to provide care for their family member/friend. The median (Q1, Q3) of both workshop utility and satisfaction was 10 (10, 10), minimum-maximum: 7 to 10. Conclusions: Caregivers in this study stated that the workshop was useful and satisfactory. Because caregivers play such a vital role in recovery after hip fracture, providing knowledge and skill development as part of health care delivery may support more person-centered care.
Background: Post-acute home health-care (HHC) services provide a unique opportunity to train and support family caregivers of older adults returning home after a hospitalization. To enhance family-focused training and support strategies, we must first understand caregivers' experiences.; Objective: To explore caregivers' experiences regarding training and support for managing older adults' physical functioning (PF) needs in the post-acute HHC setting.; Method: We conducted a qualitative descriptive study using semi-structured telephone interviews of 20 family caregivers. Interviews were recorded, transcribed, and analyzed using conventional content analysis.; Results: We identified the following primary categories: facilitators to learning (eg, past experience, learning methods), barriers to learning (eg, learning on their own, communication, timing/logistics, preferred information and timing of information delivery), and interactions with HHC providers (eg, positive/negative interactions, provider training and knowledge).; Conclusion: Caregivers were responsive to learning strategies to manage older adults' PF needs and, importantly, voiced ideas to improve family-focused training and support. HHC providers can use these findings to tailor training and support of family caregivers in the post-acute HHC setting.
Caregivers of patients often provide key support for patients after hospitalization. This qualitative metasynthesis describes caregiver perspectives about care coordination for patients discharged from the hospital. A literature search of Ovid Medline and CINAHL completed on May 23, 2018, identified 1,546 studies. Twelve articles were included in the final metasynthesis. Caregiver perspectives about care coordination were compiled into overall themes. A subanalysis of studies in which patients were discharged with home health services was completed. Five main themes emerged related to caregiver perspectives on care coordination after hospitalization: (a) Suboptimal access to clinicians after discharge, (b) Feeling disregarded by clinicians, (c) Need for information and training at discharge, (d) Overwhelming responsibilities to manage appointments and medications, and (e) Need for emotional support. Findings from this metasynthesis suggest the need for clinicians to engage with caregivers to provide support, training, and communication after hospital discharge.
Background: Regaining pre-hospitalization activity levels is only achieved in 30-50% of older patients. Extra physiotherapy time has been proven to improve functional outcome and shorten length of stay, but is costly. Considering their key role in caring for older people, involving informal caregivers in rehabilitation might further improve functional performance. Aim: To determine if in-hospital or post discharge caregiver involvement can increase functional performance in older adults. The secondary aim was to determine if caregiver involvement can influence, quality of life of patient and caregiver, medical costs, readmission rate, discharge location, and mortality. Design: Systematic review with narrative synthesis. Methods: The electronic bibliographic databases MEDLINE, Embase, CINAHL, Cochrane and Web of Science were searched for (quasi) experimental and observational studies, with the following inclusion criteria; caregiver involvement regarding functional performance, mean age over 65 years, admitted to a hospital unit and subsequently discharged to their home setting. Risk of bias was assessed with the Rob 2 (randomized trials) and the ROBINS-1 tool (non-randomized studies). Results: Eight studies of an initial 4683 were included: four randomized controlled trials, one prospective cohort study, one non-randomized controlled trial, one subgroup analysis of an RCT and one prospective pre-post study. All but one study included patients with stroke. Three types of caregiver interventions could be distinguished: a care pathway (inclusion of caregivers in the process of care), education on stroke and teaching of bed-side handling-skills, and caregiver-mediated exercises. The one study evaluating the care pathway reported 24.9% more returns home in the intervention group. Studies evaluating the effect of education and bed-side handling-skills reported higher effect sizes for several outcomes with increasing session frequency. All studies with caregiver-mediated exercises showed beneficial effects on functional performance, immediately after the intervention and within 3 months follow-up. Conclusion: The findings of this review suggest that involvement of caregivers in the rehabilitation of older adults leads to better functional performance up to 3 months after initiation. However, evidence is low and mainly focusing on stroke.
Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers' level of collaboration with nurses was significantly associated with their preparedness for caregiving.
Older adults with COVID-19 who survive hospitalizations and return to their homes confront substantial health challenges and an unpredictable future. While understanding of the unique needs of COVID-19 survivors is developing, components of the evidence-based Transitional Care Model provide a framework for taking a more immediate, holistic response to caring for these individuals as they moved back into the community. These components include: increasing screening, building trusting relationships, improving patient engagement, promoting collaboration across care teams, undertaking symptom management, increasing family caregiver care/education, coordinating health and social services, and improving care continuity. Evidence generated from rigorous testing of these components reveal the need for federal and state policy solutions to support the following: employment/redeployment of nurses, social workers, and community health workers; training and reimbursement of family caregivers; widespread access to research-based transitional care tools; and coordinated local efforts to address structural barriers to effective transitions. Immediate action on these policy options is necessary to more effectively address the complex issues facing these older adults and their family caregivers who are counting on our care system for essential support.
Aims The purpose of this study was to validate patient's primary caregiver and their nurse's perception of patient discharge readiness assessment and their association with postdischarge medical consumption. Design The study employed a descriptive research, prospective longitudinal study design. Method The study was performed in a ward of a medical centre in Taipei, Taiwan, from June 2017–May 2018. Obtained data were analysed using an independent t test, one‐way ANOVA and logistic regression approach. Results/findings The number of comorbidities and the number of days of hospital stay were positively associated with post discharge emergency room visits. Caregiver readiness for hospital discharge had significant negative correlation with patient's 30‐day readmission. Both caregiver and nurse readiness for the hospital discharge scale score were not factors associated with the patients' 30‐day emergency room visit. Conclusion Based on the research findings, to assess the discharge readiness as perceived by caregivers at patients' discharge is recommended. Impact Caregiver and nurse scores on readiness for hospital discharge showed a significant positive correlation. The higher the score of a caregiver's readiness for a patient's hospital discharge, the lower the 30‐day readmission rate. Family‐centred care enables patients to safely pass though the transition phase from hospital to community and reduces the postrelease consumption of medical resources. The discharge readiness perceived by caregivers should be included in any decision‐making
The role played by family caregivers in delivering long-term care is crucial: they enhance the quality of care perceived by the patients and support the shift to out-of-hospital care. However, taking care of a relative entails a huge burden that usually begins with the patient’s hospital discharge and may mean that caregivers become patients in need of care as well. Owing to socio-demographic trends, informal caregiving is the most important source of care in community settings; hence targeting the caregivers’ burden properly is crucial. This study explores how action research (AR) can be used to develop new hospital practices to manage the burden borne by family caregivers when patients are discharged from hospital. The 7-month-long action research reported in this paper consisted of three stages (burden identification, burden sharing, and burden management) and it was conducted in a teaching hospital in Rome (Italy). Both quantitative (surveys) and qualitative (focus groups and simulation sessions) techniques were used to engage participants. The AR demonstrates that there is a feasible way in which hospital managers can address proactively the caregivers’ needs in the hospital discharge process, to the advantage of the patients and the entire community.
This article describes our recommendation for adapting hospital-based RED (Reengineered Discharge) processes to skilled nursing facilities (SNFs). Using focus groups, the SNFs’ discharge processes were assessed twice additionally, research staff then recorded field notes documenting discussions about facility discharge processes as they related to RED processes. Data were systematically analyzed using thematic analysis to identify recommendations for adapting RED to the SNF setting including (a) rapidly identifying, involving, and preparing family/caregivers to implement a patient focused SNF discharge plan; (b) reconnecting patients quickly to primary care providers; and (c) educating patients at discharge about their target health condition, medications, and impact of changes on other chronic health needs. Limited SNF staff capacity and corporate-level policies limited adoption of some key RED components. Transitional care processes such as RED, developed to avoid discharge problems, can be adapted for SNFs to improve their discharges.
Objectives: To describe unmet needs of caregivers of hospitalized older adults during the transition from hospital back home, and identify subgroups with different needs. Methods: Patients and family caregivers were recruited from an acute care hospital in Montreal, Canada. Measures included Instrumental Activities of Daily Living (IADL), Hospital Anxiety and Depression Scale (HADS), Zarit burden scale, and Family Inventory of Needs. Dimensions of unmet needs were explored with principal component analysis; regression tree models were used to identify subgroups with different unmet needs. Results: A total of 146 patient-caregiver dyads were recruited. Three categories of caregiver unmet needs were identified: patient medical information; role clarity and support; and reassurance. Caregiver subgroups with highest unmet needs were those with high burden of care plus depressive symptoms (n = 46) and those caring for patients with low IADL scores (n = 10). Discussion: Caregivers with high burden and depression are those with the greatest unmet needs during the care transition.
Background Hospital to home transition care is a most stressful period for stroke survivors and their caregivers to learn self-management of stroke-related health conditions and to engage in rehabilitation. Health coaching has been identified as a strategy to enhance self-management of poststroke care at home. However, interventions in this field that are informed by a health coaching framework are scarce. This study will address a gap in research by testing the hypothesis that a nurse-led health coaching intervention can improve health outcomes for stroke survivors and their family caregivers in hospital to home transition care. Methods This is a single-blind, two-arm parallel randomized controlled trial of a nurse-led health coaching program versus routine care situated in two tertiary hospitals in Chongqing, China. Stroke survivors and their primary family caregivers will be recruited together as "participant dyads", and the estimated sample size is 140 (70 in each group). The intervention includes a 12-week nurse-led health coaching program in hospital to home transition care commencing at discharge from the hospital. The primary outcome is changes in self-efficacy of stroke survivors at 12 weeks from the baseline. The secondary outcomes are changes in stroke survivors' and quality of life, functional ability, stroke-related knowledge, the number of adverse events, and unplanned hospital admissions, and caregivers' self-efficacy and caregiver-related burden at 12 weeks from the baseline. The outcomes will be measured at 12 weeks and 24 weeks from the baseline. Discussion This study will examine the effect of nurse-led health coaching on hospital to home transition care for stroke survivors and their caregivers. It is anticipated that findings from this trial will provide research evidence to inform policy, and resource and practice development to improve hospital to home transition care for stroke survivors and their caregivers.
Purpose: This study aims to determine whether the combination of visiting frequency of the family caregiver and frailty status has an additive effect on the incidence of dependency among hospitalized older patients. Methods: We analyzed the prospective cohort data of hospitalized older patients (65 years and older) with internal medical problems. The main outcome showed patients’ dependency from admission to a month after discharge. We investigated the visiting frequency of family caregivers and the frailty status and categorized respondents into 4 groups: group 1, visiting frequency 3–7 times a week and non-frailty; group 2, visiting frequency 0–2 times a week and non-frailty; group 3, visiting frequency 3–7 times a week and frailty; or group 4, visiting frequency 0–2 times a week and frailty. We used the Cox proportional hazards regression to estimate the hazard ratios (HR) and confidence intervals (95% CI) of relationships between the combination of visiting frequency and frailty status, and dependency. Results: A total of 182 participants who completed the follow-up were analyzed. During the follow-up period, 45 participants (24.7%) showed some dependency. The hazards regression showed that the low visiting frequency group with presence of frailty had the most increased dependency, compared to other groups (adjusted HR 8.61 [95% CI 3.38–21.98]). Conclusions: The coexistence of low visiting frequency and the presence of frailty influenced dependency more strongly than each factor alone. These findings suggest that the combination of visiting frequency and frailty status is a useful predictor for future dependency.
The purpose of the current study was to examine the role and activities of family caregivers for older relatives during hospitalization. The Family Care Actions Index was completed by 293 family caregivers of hospitalized older adults. Results indicated that the scope of caregiving activities extended beyond providing care to the patient and included working together with the health care team. Activities requiring interaction with providers, such as care coordination, planning, evaluation, and oversight, were frequently performed by family caregivers. Family caregivers are assuming a greater role during the hospital stay of older relatives. Partnering with family caregivers provides hospital staff an opportunity to improve care, outcomes, and satisfaction.
Background: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. Methods: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. Discussion: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. Trial registration: ClinicalTrials.gov (NCT02915939, prospectively registered).
The transition for young adults with disabilities from high school to gainful employment is often difficult. This transition is even harder for students from minority or marginalized backgrounds, including young adults who identify as Latino. As the Latino population increases in the United States, it is imperative that the transition from high school to employment becomes more effective for Latino young adults with disabilities. Using a portion of Bronfenbrenner's Model of Human Development as a framework, we explore the experiences of Spanish-speaking Latina caregivers of young adults with disabilities to better understand the contextual and environmental factors that influence family systems as young adults with disabilities prepare to transition from high school to adulthood. Our findings highlight important factors in the micro-, meso-, exo-, and macrosystems, including the importance of family and community, distrust of authority, and the impact of discrimination. Implications for practice and future research are discussed.
Background and Objectives: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home.; Research Design and Methods: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening.; Results: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare.; Discussion and Implications: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.
Practice recommendations and policies (e.g., CARE Act) emphasize identifying and training a family caregiver during a patient's hospitalization, but engagement of caregivers is not standard in the USA. To inform caregiver engagement, we highlight (1) the frequency of cancer patient hospitalizations as well as (2) the caregiving characteristics and perceptions of inclusion in care and receipt of training among caregivers for patients who had been hospitalized. To further highlight this group of cancer caregivers, we compare to (1) cancer caregivers for patients who had not been hospitalized; (2) caregivers for patients with a primary condition other than cancer who had been hospitalized; and (3) caregivers for patients with a primary condition other than cancer who had not been hospitalized This secondary analysis is drawn from the National Alliance for Caregiving's (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. A higher percentage of the cancer caregivers compared to non-cancer caregivers reported multiple hospitalizations for their care recipient over the previous year. Many cancer caregivers for patients who had been hospitalized reported high objective burden (68%) and that caregiving was highly stressful (49%). A majority of these caregivers (60%) indicated that a healthcare provider had asked them what they needed to assist the patient, while fewer (34%) were asked about their needs to take care of themselves, which, though low, was significantly higher compared to caregivers of patients with a primary condition other than cancer that had been hospitalized. The most frequently endorsed training method for the cancer caregivers of patients who had been hospitalized was "being shown how to do a skill by a qualified person" (67%) followed by "performing a skill while a qualified person watches" (57%). Findings suggest that the oncology context might be more advanced in terms of engaging and supporting caregivers, but that improvement is still needed. Furthermore, these findings identify preferred training methods among those who have been in the hospital context as a caregiver.
Background: Hospitalization for a cancer diagnosis and treatment may trigger stressful experiences for patients and family caregivers.; Objectives: The purpose of this study was to identify patients' and caregivers' perceptions of stressors during hospitalization and evaluate their education needs.; Methods: A descriptive correlational research design was used to determine whether there is any correlation between the stress perceptions of patients and family caregivers and their need for additional education on health-related issues.; Findings: Patients reported experiencing mild to extreme stress for sleep deprivation, pain, tube and line restrictions, and financial issues. In addition to these stressors, family caregivers also perceived that waiting for test results was a main reason for stress in patients. A positive significant correlation was found between the total sample mean stress scores of patients and their need for additional education on health-related issues.
In India, family caregivers (FCs) play a major role in providing care to their older kin during hospitalization. This article explores the challenges encountered by them while providing care in a public hospital. It draws upon empirical insights obtained through interviews with 54 FCs and field observations. The findings show that the hospital was not congenial for FCs and exposes the factors impeding their caregiving role. FC experience was found to be highly complex and fraught with multiple practical challenges during admission, in-hospital treatment, and at discharge. All these had repercussions on various aspects of their own life and well-being like poor health outcomes, financial stress, and social isolation. The article concludes that the needs, preferences, and challenges of the FCs need to be considered to make hospitals conducive for FCs of older people.
Patients with chronic illness often require ongoing support postdischarge. This study evaluated a simple-to-use, mobile health-based program designed to improve postdischarge follow-up via (1) tailored communication to patients using automated calls, (2) structured feedback to informal caregivers, and (3) automated alerts to clinicians about urgent problems. A total of 283 patients with common medical diagnoses, including chronic obstructive pulmonary disease, coronary artery disease, pneumonia, and diabetes, were recruited from a university hospital, a community hospital, and a US Department of Veterans Affairs hospital. All patients identified an informal caregiver or "care partner" (CP) to participate in their postdischarge support. Patient-CP dyads were randomized to the intervention or usual care. Intervention patients received weekly automated assessment and behavior change calls. CPs received structured e-mail feedback. Outpatient clinicians received fax alerts about serious problems. Primary outcomes were 30-day readmission rate and the combined outcome of readmission/emergency department (ED) use. Information about postdischarge outpatient visits, rehospitalizations, and ED encounters was obtained from medical records. Overall, 11.4% of intervention patients and 17.9% of controls were rehospitalized within 30 days postdischarge (hazard ratio [HR]: 0.59; 95% confidence interval [CI]: 0.31–1.11; p = 0.102). Compared to intervention patients with other illnesses, those with pulmonary diagnoses generated the most clinical alerts (p = 0.004). Pulmonary patients in the intervention group showed significantly reduced 30-day risk of rehospitalization relative to controls (HR: 0.31; 95% CI: 0.11–0.87; p = 0.026). The CP intervention did not improve 30-day readmission rates overall, although post hoc analyses suggested that it may be promising among patients with pulmonary diagnoses.
The sixth update of the Canadian Stroke Best Practice Recommendations for Transitions and Community Participation following Stroke is a comprehensive set of evidence-based guidelines addressing issues faced by people following an acute stroke event. Establishing a coordinated and seamless system of care that supports progress achieved during the initial recovery stages throughout the transition to the community is more essential than ever as the medical complexity of people with stroke is also on the rise. All members of the health-care team engaged with people with stroke, their families, and caregivers are responsible for partnerships and collaborations to ensure successful transitions and return to the community following stroke. These guidelines reinforce the growing and changing body of research evidence available to guide ongoing screening, assessment, and management of individuals following stroke as they move from one phase and stage of care to the next without "falling through the cracks." It also recognizes the growing role of family and informal caregivers in providing significant hours of support that disrupt their own lives and responsibilities and addresses their support and educational needs. According to Statistics Canada, in 2012, eight million Canadians provided care to family members or friends with a long-term health condition, disability, or problems associated with aging. These recommendations incorporate aspects that were previously in the rehabilitation module for the purposes of streamlining, and both modules should be reviewed in order to provide comprehensive care addressing recovery and community reintegration and participation. These recommendations cover topics related to support and education of people with stroke, families, and caregivers during transitions and community reintegration. They include interprofessional planning and communication, return to driving, vocational roles, leisure activities and relationships and sexuality, and transition to long-term care.
As the population ages and medical therapies advance, more individuals are living in the community with complex health conditions. These individuals, as well as their clinicians, often assume their family members and friends will be capable of, and willing to, provide the caregiving work necessary to continue living at home. There is an ethical problem in this assumption that unpaid community care will be provided by family or friends. Using the Hunt and Ells Patient-Centered Care Ethics Analysis Model for Rehabilitation (2013), this article explores the ethical considerations involved in the hospital discharge planning of a fictional case involving a middle-aged, male stroke patient who is in a strained marriage. We discuss the ethical merits and concerns of the various discharge options. We conclude with recommendations to avoid assumptions that family or friends will provide unpaid care after a hospital discharge. We share advocacy suggestions for improving community supports for caregivers and those with long-term care needs.
Introduction: There is an increasing reliance on informal caregivers to continue the care of patients after discharge. This is a huge responsibility for caregivers and some may feel unprepared for the role. Without adequate support and understanding regarding their needs, patient care may be impeded. This study aimed to identify the needs valued by caregivers and if there was agreement between acute care nurses and caregivers in the perception of whether caregiver needs were being met. Methods: We conducted face-to-face interviews with 100 pairs of acute care nurses and caregivers. Participants were recruited from inpatient wards through convenience sampling. Questionnaires included demographic data of nurses and caregivers, patients' activities of daily living, and perception of caregiver needs being met in six domains of care. Independent t-test was used to compare mean values in each domain, and intraclass correlation coefficient was used to compare agreement in perception. Results: Caregivers valued reassurance the most. Three domains of care needs showed significant differences in perception of caregiver needs being met:reassurance (p = 0.002), honesty and timeliness (p = 0.008), and kindness and genuine care (p = 0.026). There was poor agreement in all six domains of caregiver needs being met between nurses and caregivers. Conclusion: Although caregivers valued reassurance the most, there was poor agreement between acute care nurses and caregivers in the perception of caregiver needs being met. Hence, more attention should be paid to the caregiver's needs. Further studies can examine reasons for unmet caregiver needs and interventions to improve support for them.
Background: Post-intensive care syndrome-family (PICS-F) refers to acute and chronic psychological effects of critical care on family members of patients in intensive care units (ICUs). Evidence suggests that increased distress during the ICU stay increases risk of PICS-F. Sensation Awareness Focused Training (SĀF-T) is a new, promising stress management intervention, but the feasibility of such training during the ICU stay for family caregivers who are acting as the surrogate decision-maker for patients who are undergoing mechanical ventilation is unknown.; Objectives: To assess feasibility and acceptability of SĀF-T to inform a future larger randomized controlled trial.; Methods: This randomized controlled trial of SĀF-T (n = 5) versus a control (n = 5) group was conducted at a level 1 trauma center. Participants assigned to SĀF-T completed 1 session daily for 3 days. Measures included enrollment rate, data completion rate, acceptability of SĀF-T, and symptoms of PICS-F. Scales used included Perceived Stress, Hospital Anxiety and Depression, Impact of Event, and National Institutes of Health Toolbox Emotion Battery.; Results: Mean age was 58 (SD, 12) years; 70% of participants were female. Predetermined feasibility criteria were met in enrollment rate (67%), outcome measures completion rate (> 90%), and SĀF-T acceptability (100% of doses completed during the ICU stay) without adverse events. Stress scores after SĀF-T were significantly lower than scores before SĀF-T (z = -3.5, P = .01).; Conclusions: SĀF-T intervention during the ICU stay is feasible, acceptable, and may improve family caregivers' post-ICU outcomes. Larger clinical trial to assess the effectiveness of SĀF-T in preventing PICS-F seem warranted.
Background: Delayed hospital discharge occurs when patients are medically cleared but remain hospitalized because a suitable care setting is not available. Delayed discharge typically results in reduced levels of treatment, placing patients at risk of functional decline, falls and hospital‐related adverse events. Caregivers often take on an active role in hospital to mitigate these risks. Objective: This scoping review aimed to summarize the literature on patient and caregiver experiences with delayed hospital discharge. Search strategy: Seven electronic databases and grey literature were searched using keywords including alternate level of care, delayed discharge, patients, caregivers and experiences. Inclusion criteria: Included articles met the following criteria: (a) patient or caregiver population 18 years or older; (b) delayed discharge from a hospital setting; (c) included experiences with delayed discharge; (d) peer‐reviewed or grey literature; and (e) published between 1 January 1998 and 16 July 2018. Data extraction: Data were extracted from the seven included articles using Microsoft Excel 2016 to facilitate a thorough analysis and comparison. Main results: Study themes were grouped into five elements of the delayed discharge experience: (1) overall uncertainty; (2) impact of hospital staff and physical environment; (3) mental and physical deterioration; (4) lack of engagement in decision making and need for advocacy; and (5) initial disbelief sometimes followed by reluctant acceptance. Conclusion: This review provides a foundation to guide future research, policies and practices to improve patient and caregiver experiences with delayed hospital discharge, including enhanced communication with patients and families and programmes to reduce deconditioning.
Background: Despite growing attention to the positive meaning from ICU survivorship, little is known about positive experience among family caregivers of ICU survivors.; Objectives: To explore positive aspects of caregiving in family caregivers from patients' ICU admission to 4-month post-ICU discharge.; Methods: A secondary analysis of data from 47 family caregivers of ICU patients who self-reported the measure, Positive Aspects of Caregiving (PAC, 11-item, score range 11-55).; Results: Family caregivers rated their experience as positive overall across the time points (mean 42.42-44.95). Trends of higher mean PAC scores were observed in caregivers who were older than 50 years of age, parent or sibling of patients, not working, had religious background or preference, and had no financial difficulty. Better social support and psychological responses were associated with PAC.; Conclusion: In our sample, family caregivers of ICU survivors rated their caregiving experience as positive during the ICU and post-ICU periods.
Introduction: Family caregiver-provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers' experience relating to their end-of-life (EOL) communication and needs for hospice care transition.; Methods: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data.; Results: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver-provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient's terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care.; Conclusion: Timely EOL communication between caregivers and the providers is key to the patient's optimal transition to hospice care. Providers need to be aware of the caregivers' informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.
Objective To evaluate the effectiveness of family-engaged multidimensional team planning and management for patients with severe stroke and low functional status and to identify factors predictive of improved outcome at 1 month after admission. Methods We retrospectively evaluated 50 patients who underwent family-engaged multidimensional rehabilitation for recovery from severe stroke due to primary unilateral cerebral lesions. The rehabilitation consisted of three phases: comprehensive multidimensional assessment, intensive rehabilitation, and evaluation. Functional Independence Measure (FIM) scores were calculated and used to predict the patients’ status at discharge. Results Although all FIM scores significantly improved after 1 month of rehabilitation, the motor FIM (mFIM) score improved the most (from 20.5±1.0 to 32.6±2.0). The total FIM (tFIM) and mFIM scores continued to improve from the first month to discharge (mean mFIM efficiency, 0.33). The high-efficiency patient group (mFIM efficiency ≥0.19) had a significantly higher discharge-to-home rate (44% vs. 13%), lower frequency of hemispatial neglect, and more severe finger numbness than the low-efficiency patient group (mFIM efficiency <0.19). The regression analyses revealed that besides lower mFIM and cognitive FIM scores at admission, unilateral spatial neglect, systemic comorbidities, and age were predictive of worse 1-month outcomes and tFIM scores (conformity, R²=0.78; predictive power, Akaike information criterion value=202). Conclusion Family-engaged multidimensional team planning and management are useful for patients with severe stroke and low functional status. Furthermore, FIM scores at admission, age, unilateral spatial neglect, and systemic comorbidities should be considered by rehabilitation teams when advising caregivers on the probability of favorable outcomes after rehabilitation.
Importance: Patients hospitalized for chronic obstructive pulmonary disease (COPD) exacerbations have high rehospitalization rates and reduced quality of life.; Objective: To evaluate whether a hospital-initiated program that combined transition and long-term self-management support for patients hospitalized due to COPD and their family caregivers can improve outcomes.; Design, Setting, and Participants: Single-site randomized clinical trial conducted in Baltimore, Maryland, with 240 participants. Participants were patients hospitalized due to COPD, randomized to intervention or usual care, and followed up for 6 months after hospital discharge. Enrollment occurred from March 2015 to May 2016; follow-up ended in December 2016.; Interventions: The intervention (n = 120) involved a comprehensive 3-month program to help patients and their family caregivers with long-term self-management of COPD. It was delivered by nurses with special training on supporting patients with COPD using standardized tools. Usual care (n = 120) included transition support for 30 days after discharge to ensure adherence to discharge plan and connection to outpatient care.; Main Outcomes and Measures: The primary outcome was number of COPD-related acute care events (hospitalizations and emergency department visits) per participant at 6 months. The co-primary outcome was change in participants' health-related quality of life measured by the St George's Respiratory Questionnaire (SGRQ) at 6 months after discharge (score, 0 [best] to 100 [worst]; 4-point difference is clinically meaningful).; Results: Among 240 patients who were randomized (mean [SD] age, 64.9 [9.8] years; 61.7% women), 203 (85%) completed the study. The mean (SD) baseline SGRQ score was 62.3 (18.8) in the intervention group and 63.6 (17.4) in the usual care group. The mean number of COPD-related acute care events per participant at 6 months was 1.40 (95% CI, 1.01-1.79) in the intervention group vs 0.72 (95% CI, 0.45-0.97) in the usual care group (difference, 0.68 [95% CI, 0.22-1.15]; P = .004). The mean change in participants' SGRQ total score at 6 months was 2.81 in the intervention group and -2.69 in the usual care group (adjusted difference, 5.18 [95% CI, -2.15 to 12.51]; P = .11). During the study period, there were 15 deaths (intervention: 8; usual care: 7) and 339 hospitalizations (intervention: 202; usual care: 137).; Conclusions and Relevance: In a single-site randomized clinical trial of patients hospitalized due to COPD, a 3-month program that combined transition and long-term self-management support resulted in significantly greater COPD-related hospitalizations and emergency department visits, without improvement in quality of life. Further research is needed to determine reasons for this unanticipated finding.; Trial Registration: ClinicalTrials.gov Identifier: NCT02036294.;
The purpose of this study is to explore the needs of family members at the bedside of stroke patients (n = 12) admitted to an inpatient rehabilitation facility (IRF). Family members' needs were determined through semistructured interviews, "Draw a Bridge" art therapy technique, and the Family Inventory of Needs. Family members described a family-centered approach to care that addressed the following needs: assistance with preparing for discharge, staff caring for family members, communication about the plan of care and what to expect postdischarge, and trusting the care provided by IRF staff. Art therapy revealed that stroke was a crisis with many unmet needs for the interviewer to explore. Descriptive statistical analysis of the Family Inventory of Needs revealed that both met and unmet needs were consistent with the interviews and the interpretations of the drawings. These findings inform the need for interventions during IRF to enhance communication, support, and effective caregiver education amidst the crisis of stroke.
Objective: to evaluate the relation between sociodemographics factors, stress and burden of care of family caregivers of patients at a psychiatric hospital admission.; Method: quantitative study, with a cross-sectional correlation design. A total of 112 family caregivers participated, older than 18, in a Brazilian psychiatric hospital. A sociodemographic questionnaire was used to collect data, the Zarit Burden Interview and LIPP Adult Stress Symptom Inventory.; Results: burden of care in family caregivers at a psychiatric hospital admission was significantly associated with stress (p=0.000). The psychological symptoms of stress predicted severe burden. Most caregivers presented a moderate or severe burden, with 52.7% in the resistance phase of stress; 66.1% presented psychological symptoms.; Conclusion: results show the alarming situation of caregivers of patients from a psychiatric hospital, evidencing their own vulnerability to illness. Indeed, the during admission in a psychiatric hospital, not only patients need care, but also their caregivers.
Aims and objectives To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. Background The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. Design An interpretative qualitative design. Methods Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. Results Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: “a deep sense of loss,” “an overwhelming process,” “parents making transitions happen,” “a shock to the adult healthcare system” and “the unbearable pressure.” Nurses were often seen as instrumental to counteracting some of these challenges. Conclusions There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. Relevance to clinical practice Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.
OBJECTIVES: To review the evidence evaluating the effectiveness of informal caregiver interventions to facilitate the recovery of older people discharged from the hospital. DESIGN: Systematic review and meta-analysis. SETTING: Hospital and community. METHODS: Published and unpublished randomized and nonrandomized controlled trials assessing the effectiveness of informal caregiver interventions to support the recovery of older people discharged from the hospital were identified (to March 2019). The primary outcome was patient health-related quality of life (HRQOL). Secondary outcomes included patient function, caregiver burden, caregiver HRQOL, psychological distress, adverse events, and health resource use. Studies were critically appraised and meta-analyzed. PARTICIPANTS: Adults who had been admitted to the hospital. RESULTS: A total of 23 studies were eligible (4695 participants). The indication for hospital admission was stroke in 21 trials (91%). Interventions consisted of training and/or skills-based programs, with or without home visits/telephone follow-up. Caregiver interventions for patients following stroke may provide no benefit for patient HRQOL at 12 months (standardized mean difference =.29; 95% confidence interval = -.12 to.69; low-quality evidence). Caregiver interventions demonstrated benefit for caregiver burden and both patient and caregiver anxiety at 12 months. No consistent effect was found on functional outcomes, depression, HRQOL, adverse events, or health resource use measures. CONCLUSIONS: Informal caregivers who receive training to facilitate the recovery of older people discharged from the hospital following stroke may have a lower burden and reduced anxiety at 12 months compared with those who do not. However, the evidence was moderate to low quality. Further study is warranted to explore whether caregiver interventions can be modified for nonstroke populations such as those with hip fracture.
Background: The process of moving patients from a hospital to a home or another care setting, also called transitional care, can lead to unwanted complications and negative outcomes. The term “transitional care” involves a wide range of conditions and services to ensure the continuity of care and prevention of unwanted consequences in vulnerable individuals, who are affected by any changes in care settings or caregivers. Objectives: The purpose of this concept analysis is to clarify the concept of transitional care by considering its application in different studies and its changes over time. Design: A concept analysis. Data sources: Literature from 2008 to 2018 were sought using Medline, PubMed, Google Scholar and Cochrane databases with terms "transitional care", “transitional care” OR "care transitions", “transitional care” AND "nursing", “transitional care” AND "discharge planning”. Review methods: Rodgers' evolutionary concept analysis method was used to clarify the antecedents, attributes and consequences. Results: The 46 eligible articles were fully studied and findings were categorized into antecedents, attributes and consequences. Transitional care antecedents were classified into three categories: patient/family/caregivers related factors, factors related to hospital system (inpatient care), and social factors. The defining attributes include patient-oriented transitional care, transitional care with a hospital-based approach and transitional care with a community-based approach. Consequences categorized into patient-related consequences, family/caregiver-related consequences, and hospital-related consequences. Conclusion: The results of the analysis of the transitional care concept have shown that this concept is not limited to care provided by nurses at discharge, and that its proper implementation requires considering many factors including the status of patients and their families, different members of the healthcare team, and environmental and social conditions and facilities. A proper understanding of transitional care not only specifies the role of care providers, but also creates a basis for designing an evidence based care program.
Objectives: Caregivers of hospitalized older adults experience elevated levels of stress and are at risk of poor health outcomes. There is a lack of screening tools based on self-reported caregiver variables incorporating both protective and risk factors, for early identification of at-risk caregivers. This study reports the development of a caregiver-centric screening tool to identify risk of depression at admission and predicts 3-month risk of depression and quality of life amongst caregivers of older adults with an unplanned admission. Design, Setting and Participants: This prospective cohort study was conducted in the medical wards of a tertiary-care hospital from July 2015 to May 2017. We recruited family caregivers of patients aged 65 years and above who fulfilled the following criteria: a) unplanned admission, b) not residing in nursing homes; and c) requiring assistance in activities of daily living. Measurements: We examined 11 candidate caregiver variables (mastery, burden and nine demographic variables). Risk of depression (score ≥8 on Hospital Anxiety and Depression Scale (HADS-D) depression subscale) was the primary outcome, and was assessed during the index admission. Logistic regression models were used to identify risk factors and risk scores (weights). The total risk scores were then stratified into three risk levels. Predictive validity of the screening tool was assessed using 3-months post-discharge risk of depression and health-related quality of life (HRQoL). Results: The study included 274 caregiver-patient dyads. The mean (SD) age of the caregivers was 59 (10) years with 33.6% caregivers screening positive for risk of depression. The final model comprised three caregiver variables: mastery, burden and education. The total risk scores ranged from 0 to 6 and showed good discrimination (AUC:0.82, 95% CI: 0.77 to 0.87). Caregivers were classified into low-risk (0–1 points), intermediate-risk (2–4 points), and high-risk (5–6 points) groups, with corresponding rates of risk of depression (HADS-D≥8) of 10.7%, 44.6% and 73.3%, during admission. Relative risk rates of the intermediate- and high-risk group using the low-risk group as reference were 4.16 and 6.84 respectively. At 3-months post-discharge, the rates of caregivers at risk of depression or having poor HRQoL also increased corresponding to the three risk levels as per baseline, supporting the predictive validity of the tool. Conclusions/Implications: The caregiver-centric tool is a novel, practical, self-administered, relatively brief caregiver-centric instrument that can be used for rapid screening and stratification of caregivers at risk of depression. Uniquely, the tool comprised of assessment of protective factor (mastery) in addition to risk factors to provide a holistic assessment of the caregiver. It can be incorporated as part of older adults’ admission evaluation so that prompt intervention can be rendered to their at-risk caregivers.
Purpose: This study addressed the experiences of older caregivers of cancer patients in the 2 weeks following a hospital discharge. It sought to understand the challenges they face in providing supportive care to patients at home. Methods: Qualitative descriptive interviews with a narrative approach were conducted with each caregiver at 1 and 2 weeks following the patient’s discharge from the hospital. A thematic analysis approach was used to identify the themes that emerged from the caregiver interviews. Results: Caregivers were primarily Caucasian (77%), were mostly 68 years of age or older (62%), and were primarily caring for a spouse (69%). Three key themes emerged from the qualitative analysis: caregiver and patient wellness are connected, caregivers’ struggle with control issues, and challenges in communication with health professionals. Conclusions: These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.
Background: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers.; Objective: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge.; Design: Cross-sectional.; Participants: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013.; Main Measures: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences.; Key Results: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress.; Conclusion: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.
Background: Active involvement of relatives has the potential to improve postoperative patient outcomes by prevention of complications sensitive to basic care and unplanned readmissions. The aim of this study was to assess the feasibility of a program in which relatives participated in postoperative care.; Methods: A pragmatic feasibility trial conducted at the surgical ward of a University hospital in the Netherlands. Patients undergoing esophageal or pancreatic resection with a relative who was willing and able to participate formed the intervention group (n = 20). A control group (n = 20) received usual postoperative care. The program consisted of the following: (1) information; (2) shared goal setting; (3) task-oriented training; (4) participation in basic care, focusing on mobilization, breathing exercises, cognitive activities and oral hygiene; (5) presence of relatives during ward rounds; and (6) rooming-in. Feasibility criteria were adherence to basic care, caregiver burden, and satisfaction of patients, family, and healthcare professionals.; Results: All participants completed the program. Patients in the intervention group mobilized more (estimated difference for walking 170 meters per day, P = .037, and for sitting 109 minutes per day, P < .001), and showed more adherence to breathing exercises (estimated difference per day 1.4, P = .003), oral hygiene (estimated difference 1.52, P = .001), and cognitive activities (estimated difference 2.6, P < .001). Relatives'Care-Related Quality of Life instrument score did not deteriorate over time (P = .64); 96% of relatives would recommend the program and 92% felt better prepared for discharge. Patients in the intervention group were more satisfied with hospital admission. Healthcare professionals valued the program positively.; Conclusion: This program is feasible and is positively appreciated by patients, family, and healthcare professionals. Patients following the program showed more adherence to basic care activities.
Problem/background: Post-discharge healthcare for patients with neurological conditions is indicated to be suboptimal. Aim: To capture hospital discharge experiences and ramifications among patients with neurological conditions, and informal caregivers, and their recommended solutions. Methods: A modified World Café was held November 2016. A facilitator moderated structured group discussions about post-discharge challenges, displayed real-time in GroupMap. Using the software's voting, ratings of priority challenges/issues and solutions were tabulated to identify whole group consensus. Findings: Eleven adults with neurological conditions (five females) and four adult informal caregivers (three females) participated. Major post-discharge challenges were: (i) inadequate self-management instruction, (ii) feeling discharged too early, (iii) family pressured to support patient without capacity, (iv) financial impact, (v) difficulties accessing social services, (vi) social isolation, (vii) inadequate support services, and (viii) poor communication with, and between, healthcare providers. Top-ranked solutions were: (i) counseling services at symptom onset, (ii) community neurological nurse referrals to, and liaison with, services, (iii) improved communication with general practitioner, (iv) community neurological nurse facilitating financial assistance, and (v) social worker in pre-diagnostic period facilitating financial assistance and support. Discussion: Peridischarge, patients and informal caregivers face a complexity of information and services, and struggle to self-manage conditions, experiencing burden that jeopardises their health and wellbeing. Proposed solutions to post-discharge challenges emphasise self-management, psychosocial support, care coordination, health system navigation, and communication. Conclusion: Generic community neurological nurses could link hospital and community-based services. Research is required regarding which translational and after hospitalisation care model improves care coordination and continuity, and care recipients’ capacity.
The experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis. Three themes emerged: The Value of Experience: Deciding on Admission and Defending One's Criteria; Living on Two Sides of the Same Coin; and Maintaining Contact. Results provide insight into female caregivers' experiences of NH admission, which may improve relationships established between female family caregivers and NH staff and help inform the decisionmaking process.
Background Researchers have shown that hospitalisation can decrease older persons’ ability to manage life at home after hospital discharge. Inadequate practices of discharge can be associated with adverse outcomes and an increased risk of readmission. This review systematically summarises qualitative findings portraying older persons’ experiences adapting to daily life at home after hospital discharge. Methods A metasummary of qualitative findings using Sandelowski and Barroso’s method. Data from 13 studies are included, following specific selection criteria, and categorised into four main themes. Results Four main themes emerged from the material: (1) Experiencing an insecure and unsafe transition, (2) settling into a new situation at home, (3) what would I do without my informal caregiver? and (4) experience of a paternalistic medical model. Conclusions The results emphasise the importance of assessment and planning, information and education, preparation of the home environment, the involvement of the older person and caregivers and supporting self-management in the discharge and follow-up care processes at home. Better communication between older persons, hospital providers and home care providers is needed to improve the coordination of care and facilitate recovery at home. The organisational structure may need to be redefined and reorganised to secure continuity of care and the wellbeing of older persons in transitional care situations.
Objective : To conduct a formative evaluation of a transitional intervention for family caregivers, with assessment of feasibility, acceptability, appropriateness, and potential benefits. Methods : The intervention aimed to provide emotional support, information on community resources, and information and support for development of coping skills for the caregivers of patients aged 65 and older who were to be discharged home from an acute medical hospital admission. We used a one-group, pre- and three-month post-test study design. Results: Ninety-one patient-caregiver dyads were recruited. Of these, 63 caregivers (69%) received all five planned intervention sessions, while 60 (66%) completed the post-test. There were significant reductions in caregiver anxiety and depression following the intervention, and high rates of satisfaction. Discussion: This transitional intervention should be further evaluated, preferably with a control group, either as a stand-alone intervention or as one component of a comprehensive transitional intervention for older patients and their caregivers.
Objective: To investigate the safety and effectiveness of augmenting physiotherapy with family-assisted therapy, to inform a future, fully powered trial.; Design: Parallel pilot randomized controlled trial.; Setting: Transition Care Program.; Participants: Thirty-five older adults with multimorbidity, recently hospitalized, with a mean age of 84.1 years (SD = 6.1 years) and mean Modified Barthel Index of 67.8 units (SD = 19.2 units), and 40 family members.; Interventions: The control group ( n = 18) received usual physiotherapy care. The experimental group ( n = 17) received usual physiotherapy care and family-assisted therapy from a family member trained by a physiotherapist.; Main Measures: Primary outcomes were falls-related self-efficacy measured by the Short Falls Efficacy Scale - International and falls during the intervention period. Secondary outcomes included daily steps, EQ-5D-3L (three-level version of the EuroQoL five-dimensional health-related quality of life questionnaire) and ICECAP-O (ICEpop CAPability measure for Older people), Modified Barthel Index and Modified Caregiver Strain Index.; Results: There were no between-group differences for falls-related self-efficacy. Relative to the control group, the experimental group was observed to have a reduced risk of falling (relative risk = 0.38, 95% confidence interval (CI) = 0.09-1.60) and a reduced falls rate (incidence rate ratio = 0.22, 95% CI = 0.04-1.20) was of borderline statistical significance. The experimental group walked a mean of 944 daily steps more than the control group (95% CI = 139-1748) and had a significant reduction in activity limitation. There were no between-group differences for quality of life or caregiver strain.; Conclusion: Augmenting physiotherapy with family-assisted therapy is feasible for older people transitioning from hospital to the community. A fully powered randomized controlled trial is indicated.
Many people with dementia eventually require residential aged care, frequently preceded by a hospital admission. Family carers often find the process challenging and disempowering, as they are expected to move their family member to residential aged care quickly. This article reports on findings from a small Australian qualitative study focusing on the provision of information, support and resources, and discusses the findings in relation to person-centred care and critical social work. Social workers completed an online survey and participated in focus groups, and carers were interviewed. The research found that carers valued the information, support, and resources provided by social workers and other hospital staff. They needed time to adjust to the dementia diagnosis and wanted a supportive person to talk to about the written information. The social workers wanted an improved approach to the preparation and communication of information, and a more consistent approach to family meetings. There is a need to further develop and articulate the role of hospital social workers in supporting the transition to residential aged care for people with dementia and their family carers. What is valued by family carers is personal support; a team approach from the hospital; up-to-date, concise information; and guidance from a caseworker. Early diagnosis of dementia, more information about the progression of dementia, and advanced care planning would be of assistance.
Approximately 5% of the UK population live with serious mental health problems. Data show that informal caregivers of people with mental illness provide care for the highest number of hours compared to other illness and the economic cost of this care is highest in the UK when compared internationally. People living with serious mental health problems make transitions between different intensities of service as their needs fluctuate, including referral, admission, transfer or discharge. Although caregiving is associated with both stress and positive reward, service transitions are particularly associated with increased stress. This review aimed to investigate what is known about the experiences of informal caregivers during mental health service transitions. An integrative qualitative synthesis was conducted following searches in six bibliographic databases and of the grey literature. Studies published in English between 2001 and 2017 were included if the study focus was on serious mental health problems, the experiences of caregivers and service transitions. Eleven studies were included, appraised using the Mixed Methods Appraisal Tool and synthesised, resulting in four themes: (a) Caregiver information, (b) Caregiver involvement in decisions about care and treatment, (c) Accessing services, (d) Being a caregiver. Caregivers' experiences were similar during transitions to their usual caregiving role but they faced more challenges and their experiences were amplified. Concerns about confidentiality created barriers to information sharing. Continuity of professionals across transitions was helpful. Caregivers struggled to deal with their own conflicting emotions and with the behaviours of the person yet rarely received help. The review findings point to a need for continuity of professionals across service transitions, co-designed and delivered training for professionals and caregivers about information sharing, greater understanding of barriers to implementation of family interventions and interventions that address emotional needs of caregivers.
Background: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice.; Objectives: To identify the information needs of informal home hospice caregivers.; Design: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis).; Participants: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization.; Measured: Participants' information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition.; Results: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides.; Conclusion: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers.
Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive, and emotional impairment. Because of traditional Chinese culture and the limited development of the primary healthcare system, most stroke survivors are cared for and live with their family after hospital discharge. However, previous literature shows a lack of qualitative studies on family caregivers' experience of caring for their relatives in China.; Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke survivors in China.; Methods: An explorative design was used wherein qualitative semi-structured interviews were conducted with family caregivers in China. Family caregivers were selected from one city and three communities using a purposive sampling method until no new data were generated (n = 26). A thematic analysis was used for the data analysis in this study.; Findings: Family caregivers' experience was described as living on the edge, which pulled their lives in multiple directions, created an unstable situation, and reduced their well-being and health. The participants believed they had total responsibility and felt that this was expected from both themselves and society. Little external understanding and insufficient support was emphasised, resulting in the caregivers feeling all alone, drained by caring, and like prisoners in their own lives. The family caregivers had to face all of the family events and make all of the decisions by themselves. They expressed love for their family members with stroke, but this was often overshadowed by feelings of sadness, depression, sensitivity, and anger. This resulted in an inability to see how things could improve and in the family caregivers being uncertain about the future.; Conclusion: All of these findings increased understanding and added knowledge of this topic that has been seldom studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers since their relatives had a stroke to further identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers to relieve them from caring for their relatives with stroke and maintaining the quality of their own lives.
In numerous countries, lay (family) caregivers are the primary providers of care for community-dwelling patients with a tracheostomy.; Purpose: The purpose of this descriptive study was to determine health care practices and the burden on family caregivers for patients with a tracheostomy living at home.; Methods: The research population included 50 caregivers (average age 55.60 ± 1.39 years; 25 [50%] female) who provided care to 50 patients (average age 63.50 ± 1.72 years; 35 [70%] male) who were discharged from the otorhinolaryngology clinic of an education and research hospital in Turkey. Patient and caregiver characteristic data and tracheostomy care practices were collected via face-to-face interviews between caregivers and researchers using paper-and-pencil questionnaires. The 18-item Zarit Caregiver Burden Interview also was completed; responses to statements are rated on a scale of 0-4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always. Total scale scores range from 0 to 88; higher scores indicate greater burden. Data were transferred into a statistical analysis program.; Results: The mean score for the Zarit Caregiver Burden Scale was 42.44 ± 1.93, inferring caregivers were moderately burdened. Caregiver burden scores were significantly higher among female caregivers, caregivers without health insurance, caregivers requiring help, caregivers with chronic illness, more daily care time (hours), and duration of total care (months). Patient burden scores were significantly higher among persons requiring provision of daily nebulization and oxygen therapy, external cannula cleaning, and daily patient care.; Conclusion: This study illuminates the burdens faced by lay/family caregivers of patients with a tracheostomy and identifies for community health clinicians the challenges, care requirements at home, and burden of family caregivers that must be addressed.
Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community.; Methods: A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (n = 19) and their family members' (n = 16) experiences.; Results: The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness.; Conclusions: The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators. Implications for Rehabilitation Family caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community. The potential negative effects of caregiving could threaten the sustainability of these critical supports. Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role.
Kennedy talks about the importance of family caregivers. Among other things, making sure that family caregivers are prepared prior to discharge in understanding the family members diagnosis and what it means for ongoing care, how to provide care, and what changes signal the need for professional intervention.
Background/objective: Chronic emotional distress (e.g., depression, anxiety, post-traumatic stress) is common after stroke and interdependent between patients and their informal caregivers. We measured stroke survivors', caregivers', and neurocritical care nurses' views of primary drivers of distress during the stroke experience, and needs and preferences for the structure, topics, mode of delivery, and timing of an intervention to promote emotional recovery.; Methods: We conducted semi-structured interviews with 24 patient-caregiver dyads within the Neuroscience Intensive Care Unit (Neuro-ICU). Additionally, we conducted two focus groups with 15 nurses. Interviews and focus groups were audio-recorded, transcribed, and coded using NVivo 11 (QSR International) software.; Results and Conclusions: The challenges and impacts of stroke most commonly reported by dyads were: uncertainty about future health, fear of recurrent strokes, negative emotions, and role changes post-stroke. Dyads and nurses agreed that resiliency skills such as mindfulness/focusing on the present, problem solving, gratitude/optimism, self-care, interpersonal communication and developing a supportive team of family, friends, and medical staff are beneficial to optimize recovery. The potential barrier to intervention delivery was accessibility, due to challenges of time and travel to appointments. Participants agreed that starting the intervention at hospitalization and continuing via live video after discharge is an ideal delivery modality. Stroke survivors, caregivers, and Neuro-ICU nurses believe that a resiliency skills-based intervention to prevent chronic emotional distress is necessary and urgent. This qualitative study provides valuable information on the challenges faced by dyads, intervention topics to prioritize, and strategies to maximize feasibility, acceptability, and effect.
The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge. The Further Enabling Care at Home (FECH) program was developed as a nursing outreach intervention designed to systematically address support needs of family caregivers of older people after hospital discharge to sustain their home-based caregiving. The objective of this study was to explore the experiences of informal caregivers who participated in the FECH program after an older family member’s discharge from hospital.
Background: Family caregivers provide the foundation for long-term home care of stroke survivors. The overwhelming stress associated with caregiving hinders the ability of family caregivers to utilise their internal and external resources to cope with this situation, thereby placing their own health at risk. We conducted a randomised controlled trial of a strength-oriented psychoeducational programme on conventional stroke rehabilitation for family caregivers. Objectives: To evaluate the effectiveness of a strength-oriented psychoeducational programme on the caregiving competence, problem-solving coping abilities, caregiver’s depressive symptoms, caregiving burden and resources (family functioning, social support) and physical health (such as caregiving-related injury), as well as potential placement of stroke survivors. Design: A prospective multi-centre and single-blinded randomised controlled trial stratified by survivors’ history of stroke. Setting and participants: Adult stroke patients and their family caregivers were recruited from the medical wards of a regional acute and two rehabilitation hospitals in the Eastern New Territories of Hong Kong. Methods: The design of the trial was based on the relational/problem-solving model. Family caregivers of stroke survivors who had been admitted to the study hospitals completed a set of questionnaires before randomisation, immediately, one- and three-months post-intervention. The control group received usual care, whereas the intervention group received an additional 26-week strength-oriented psychoeducational programme (two structured individual face-to-face pre-discharge education sessions on stroke and its associated caregiving skills and six biweekly post-discharge telephone-based problem-solving coping skills training sessions). Data were analysed using the generalized estimating equation and multiple regression models and chi-square tests. Results: We recruited 128 caregiver–survivor dyads. The intervention group demonstrated significantly greater improvements throughout the study (p < 0.01) in terms of caregiving competence, problem-solving coping abilities and social support satisfaction. This group also displayed significantly greater improvements in terms of family functioning (p < 0.05) at one-month post-intervention, an increased number of social support (p < 0.001) and a lower level of burden at three-month post-intervention. However, there was no significant effect on enabling stroke survivors to remain in their home. Post-hoc analysis showed a significant and indirect effect of problem-solving coping abilities, which suggested its mediating effect on caregiving competence of stroke caregivers. Conclusions: Findings suggest that incorporating a strength-oriented psychoeducational programme into the existing stroke rehabilitation protocol can foster a healthy transition to caregiving among family members of stroke survivors.
Background: there are many people with advanced cancer who are cared for in the community, though little is known about patients' and family members' lived experiences during discharge from hospital to home. Objectives: to describe the experiences of the patient-family caregiver dyad during the transition from hospital to home at a National Cancer Institute in Colombia. Methods: a descriptive phenomenological approach was taken for this study. Results: Forty-one nominal codes emerged, comprising seven themes that describe the experience of the individual in palliative care and their family caregiver during the transition from hospital to home care. Conclusions: the patient-family caregiver dyad have to deal with symptoms while being confronted with the prognosis and progression of the disease at home. The economic costs in acquiring supplies needed for proper care provision are considerable. In addition there are administrative fees from consultations and accessing the health services. Emotional and spiritual support for the dyad is required.
WHAT IS KNOWN ON THE SUBJECT?: Existing literature provides insight into the general experience of carers of people with a mental illness. Previous studies have found that carers experience a range of emotions when looking after their relatives with a mental illness. However, experiences of carers as they engage with the healthcare system is largely absent from the literature. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper identified the experiences of carers when their relatives are experiencing a crisis or acutely unwell. Carers found themselves in the middle between mental health services and their relatives. Strategies employed by carers to ensure their relatives receive adequate care were identified from this study. This paper identified how carers needed to become more assertive in order to receive adequate care for their relatives, and this finding has implications for any future carer education. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The participants identified the need to work more collaboratively with carers of people with a mental illness as they seek treatment for their relatives in order to achieve better health outcomes for the patients. Improved health service engagement of carers was seen by participants to assist them to better care for their relative. The study also found that there needs to be a clearer definition as to what constitutes mental health crisis and how carers are able to intervene during this period. Services could provide clear information concerning crisis services and in particular triage.
Traumatic injury frequently leads to an abrupt change in physical and psychological functioning; informal caregivers play a significant role in the recovery process in the hospital and at home. The purpose of this study was to describe the range of stressors and burdens experienced by orthopedic trauma family caregivers in the acute care setting, as well as responses and strategies employed. Qualitative, in-depth interviews were conducted in the hospital with 12 family caregivers of severely injured orthopedic trauma patients. Interviews were audiotaped, transcribed, and analyzed to identify the range of experiences and common themes. Data were organized into 4 categories: stressors and needs; barriers; resources; and response. Stressors and barriers included the confusion and turmoil of life in the hospital, exposure to tragedy, difficulty obtaining and understanding information, and a sense that the family was not considered an integral part of the care plan. Factors influencing caregiver coping included access to the patient, provider communication, caregiver internal and external resources, and the presence of staff assisting in negotiation of the complex and unfamiliar hospital system. Understanding the caregiver experience enables nursing providers to build trust and offer effective support and guidance; caregiver-centered systems of information from admission to discharge may facilitate adaptation and improved caregiving.
The aim of this study was interpret the existential construct of family caring following Acute Coronary Syndrome. Family support is known to have a positive impact on recovery and adjustment after cardiac events. Few studies provide philosophically-based, interpretative explorations of carer experience following a spouse's ischaemic event. As carer experiences, behaviours and meaning-making may impact on the quality of the support they provide to patients, further understanding could improve both patient outcomes and family experience. Fourteen spouses of people experiencing Acute Coronary Syndrome in Sydney, Australia were engaged in a single, semi-structured interview. Interviews were audio-recorded and transcribed verbatim. Data were analysed using hermeneutic interpretation within a Heideggerian phenomenological framework. Acute Coronary Syndrome disrupts lived temporality, and the projected potential for carers' being-alongside. Carers experienced an existential uncertainty that arose from difficulty in diagnosis, and situated fear as an attuned, being-towards-death. They constructed protective strategies to insulate their partner and themselves from further stress and risk, however, unclear boundaries for protection heightened carer anxiety. The existential structure of care included one of two possible Heideggerian modes: leaping-in care was a dominating mode that required a high level of carer vigilance leaping-ahead care was a metaphorical walking alongside, as carers gave back control, freeing opportunities for the person to 'own' care. Supporting carers through the intensive phase of leaping-in care, and equipping them for informed leaping-ahead care should be a focus in both the acute and post-discharge care phases.
Objective: To evaluate patient post-intensive care syndrome (PICS-P) and caregiver burden 3 months after discharge from the Intensive Care Unit (ICU) and determine the impact of different components of PICS-P upon caregiver burden. Design: A prospective observational study was conducted over 26 months (January 2013–February 2015). Setting: Medical-surgical ICU and follow-up consultation in Portugal. Patients or participants: Patients discharged after a minimum of 2 days in the ICU. Caregiver inclusion criteria: not paid, written and spoken Portuguese, and agreement to participate in the study. Main variables of interest: In ICU: Patient gender, age, severity of illness (SAPS II) and length of ICU stay. At 3 months caregiver burden, physical (reduced mobility, weakness acquired in the ICU) and psychological components of PICS (anxiety, depression, post-traumatic stress disorder). Results: A total of 168 caregivers completed the survey (response rate of 69%). A low degree of overburden was reported by 34.5% of caregivers, while 15.5% showed moderate to high levels of overburden. Patient anxiety and depression 3 months after ICU discharge significantly influenced the presence of caregiver burden (p=0.030 vs p=0.008). When physical components of PICS-P were evaluated, no influence on caregiver burden was observed. Patient demographics, severity of illness and length of stay also failed to influence caregiver burden. Conclusions: The presence of psychological components of PICS-P 3 months after ICU seems to have a negative impact upon caregiver burden. On the other hand, physical problems showed no important impact upon caregiver overburden.
Purpose: As the population ages, older adults are more often living with functional limitations from chronic illnesses, such as stroke, and require assistance. Because stroke occurs suddenly, many stroke family caregivers in the United States are unprepared to assume caregiving responsibilities post-discharge. Research is limited on how family members become ready to assume the caregiving role. In this study, we developed a theoretical model for improving stroke caregiver readiness and identifying gaps in caregiver preparation. Design and Methods: We interviewed 40 stroke family caregivers caring for 33 stroke survivors during inpatient rehabilitation and within 6 months post-discharge for this grounded theory study. Data were analyzed using dimensional analysis and constant comparative techniques. Results: Caregivers identified critical areas where they felt unprepared to assume the caregiving role after discharge from inpatient rehabilitation. Steps to improve preparation include (a) conducting a risk assessment of the patient and caregiver; (b) identifying and prioritizing gaps between the patient’s needs and caregiver’s commitment and capacity; and (c) developing a plan for improving caregiver readiness. Implications: The model presented provides a family-centered approach for identifying needs and facilitating caregiver preparation. Given recent focus on improving care coordination, care transitions, and patient-centered care to help improve patient safety and reduce readmissions in this population, this research provides a new approach to enhance these outcomes among stroke survivors with family caregivers.
Purpose of the Study: To describe skilled nursing facility (SNF) nurses’ perspectives on the experiences and needs of persons with dementia (PwD) during hospital-to-SNF transitions and to identify factors related to the quality of these transitions. Design and Methods: Grounded dimensional analysis study using individual and focus group interviews with nurses (N = 40) from 11 SNFs. Results: Hospital-to-SNF transitions were largely described as distressing for PwD and their caregivers and dominated by dementia-related behavioral symptoms that were perceived as being purposely under-communicated by hospital personnel in discharge communications. SNF nurses described PwD as having unique transitional care needs, which primarily involved needing additional discharge preplanning to enable preparation of a tailored behavioral/social care plan and physical environment prior to transfer. SNF nurses identified inaccurate/limited hospital discharge communication regarding behavioral symptoms, short discharge timeframes, and limited nursing control over SNF admission decisions as factors that contributed to poorer-quality transitions producing increased risk for resident harm, rehospitalization, and negative resident/caregiver experiences. Engaged caregivers throughout the transition and the presence of high-quality discharge communication were identified as factors that improved the quality of transitions for PwD. Implications: Findings from this study provide important insight into factors that may influence transitional care quality during this highly vulnerable transition. Additional research is needed to explore the association between these factors and transitional care outcomes such as rehospitalization and caregiver stress. Future work should also explore strategies to improve inter-setting communication and care coordination for PwD exhibiting challenging behavioral symptoms.
Purpose: This qualitative study explored how stroke survivors' spouses described their own self-management, their partner's self-management post-stroke and how they had been supported in developing self-management.; Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34-79 years of age. A constant comparative framework was used for the analysis.; Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful.; Conclusion: Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses' skills in caregiving and supporting self-management, stroke survivors' spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke. Implications for Rehabilitation Spouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management. Stroke survivors' spouses need support in their own emotional and role management. Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses.
Background: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress.; Aim: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving.; Methods: This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed.; Results: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem.; Conclusions: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.
Aims: This study aimed at evaluating whether training on practical skills involved in providing care reduces the burden experienced by informal caregivers and improves their general health condition.; Background: A substantial number of informal caregivers lack skills to deliver poststroke assistance to older people after hospital discharge, which leads to burden situations as well as mental and physical health deterioration of the former.; Design: A quasi-experimental design.; Methods: This study involved 174 informal caregivers of older people who overcame a stroke. The control group (N = 89) received the usual type of care delivered in healthcare units. The experimental group (N = 85) adopted the InCARE programme for 1 week (T0), 1 month (T1) and 3 (T2) months and received telephone support by counselling caregivers on the subsequent 3rd, 6th, 8th and 10th weeks to hospital discharge. It aimed at facilitating the caregiver's adjustment to the demands of a poststroke stage and at increasing knowledge and practical skills to support the decision-making. Data collection occurred between February-December 2014 at the Community Home Care Services in northern Portugal.; Results: The experimental group obtained significantly better results regarding practical skills as well as lower burden levels and a better general mental health condition when compared with the control group 1 (T1) and 3 (T2) months after intervention.; Conclusion: Findings suggest that our programme improved practical skills, helped reduce burden levels with better scores and improvement regarding general mental health condition of informal caregivers.
Objectives: To determine the effect of integrating informal caregivers into discharge planning on postdischarge cost and resource use in older adults.; Design: A systematic review and metaanalysis of randomized controlled trials that examine the effect of discharge planning with caregiver integration begun before discharge on healthcare cost and resource use outcomes. MEDLINE, EMBASE, and the Cochrane Library databases were searched for all English-language articles published between 1990 and April 2016.; Setting: Hospital or skilled nursing facility.; Participants: Older adults with informal caregivers discharged to a community setting.; Measurements: Readmission rates, length of and time to post-discharge rehospitalizations, costs of postdischarge care.; Results: Of 10,715 abstracts identified, 15 studies met the inclusion criteria. Eleven studies provided sufficient detail to calculate readmission rates for treatment and control participants. Discharge planning interventions with caregiver integration were associated with a 25% fewer readmissions at 90 days (relative risk (RR) = 0.75, 95% confidence interval (CI) = 0.62-0.91) and 24% fewer readmissions at 180 days (RR = 0.76, 95% CI = 0.64-0.90). The majority of studies reported statistically significant shorter time to readmission, shorter rehospitalization, and lower costs of postdischarge care among discharge planning interventions with caregiver integration.; Conclusion: For older adults discharged to a community setting, the integration of caregivers into the discharge planning process reduces the risk of hospital readmission.
Medical devices, or instruments or tools to manage disease, are increasingly used in the home, yet there have been limited evaluations of how older adults and caregivers safely use these devices. This study concerns a qualitative evaluation of (1) barriers and facilitators of appropriate use, and (2) outcomes of inappropriate use, among older adults at the transition from hospital to home with skilled home health care (SHHC). Guided by a human factors engineering work system model, the authors (1) conducted direct observations with contextual inquiry of the start-of-care or resumption-of-care SHHC provider visit, and (2) semi-structured interviews with 24 older adults and their informal caregivers, and 39 SHHC providers and administrators. Five requirements for the appropriate use of home medical devices were identified. A systems approach integrating the hospital with the SHHC agency is needed to make the use of home medical devices safer.
Purpose: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery.; Methods: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed at four points during 1 year following hip fracture surgery in a regional hospital in southern Spain. The perceived caregiver burden was assessed using the Caregiver Strain Index (0-13 points).; Results: The mean (Standard Deviation) age of the 172 caregivers was 56 (13) years, of which 133 (77%) were woman and 94 (55%) were daughters of the patient. Seventy-nine of the 172 (46%) caregivers perceived a high level of burden (≥ 7 points on the Caregiver Strain Index) at the hospital. The corresponding numbers with perceived high level of burden at 1-month, 3-months, and 1-year were 87 (50%), 61 (36%), and 45 (26%) caregivers. A low pre-fracture functional status, post-operative complications, older age of patients, and younger age of caregivers negatively influence caregiver burden at 1-year.; Conclusions: The main caregiver is predominantly female and is most often the daughter of the patient. New treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden. Implications for rehabilitation The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing her burden of care should be included as one of the objectives of rehabilitation treatment. The caregivers of hip fracture patients must be considered as part of the treatment during the patient's recovery period, and patient handling training should be provided to the caregivers of hip fracture patients during the hospital stay to prepare the process of going back home. The caregivers of older patients, those with a low pre-fracture functional level, and of those who suffered post-operative complications, should receive more attention prior to hospital discharge and receive more assistance at home to reduce caregiver burden.
Aims and objectives: To identify barriers and facilitators to engagement of people with dementia and family carers in planning for discharge from hospital. Background: Hospital discharge can be particularly challenging for older people with dementia. To assist in the development of bespoke discharge processes that address the unique needs of older people with dementia, an integrated review of the literature was undertaken. Design and methods: A four‐stage integrative review framework guided the review. Three search strategies were employed: a computerised database search, a hand search of reference lists and forward citation searching. Paired members of the research team reviewed eligible full‐text papers. The methodological quality of each paper was assessed using the Mixed‐Methods Assessment Tool, followed by data extraction and completion of summary tables. Within and across study analysis and synthesis of study findings was undertaken using thematic synthesis. Results: Fifteen papers were included in the review. Most identified barriers to collaborative discharge processes related to distributed responsibility for discharge, risk averse approaches to discharge, limited family carer confidence, and limited validation of assumptions about family competency to manage at home. Facilitators included supported clinician and family carer engagement, and maintaining independence for activities of daily living. Relevance to clinical practice: Reflective analysis of discharge decisions, focused on risk and possible risk aversion, can assist teams to evaluate the quality of their discharge decisions. The use of formal communication strategies such as a patient/family‐held journal of the hospital experience and a structured family meeting early in the hospital admission can enhance family engagement in discharge planning. Prevention of functional and cognitive decline is emerging as critical to improving hospital discharge outcomes.
Background Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. Objective To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community. Design Lead and co-researchers conducted semi-structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post-discharge and one semi-structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co-researchers. Two focus groups of study participants, facilitated by co-researchers, met to shape and finalize recommendations. Setting and participants Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in-patient for at least 1 week returning to the community, who had a carer consenting to be in the study. Results Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services. Discussion and conclusions Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities.
Background: Delayed hospital discharge (also known as Alternate Level of Care or ALC) is a global health care quality issue with negative implications for people (e.g., functional decline) and the health care system (e.g., costly interruptions in hospital flow and procedures). ALC disproportionately impacts people with cognitive impairment, and insight into the needs and experiences of this specific sub population and their carers is lacking. The purpose of this study was to understand the hospital experience of carers (e.g., family members) of patients with ALC and cognitive impairment who were waiting for long-term care from the hospital. Methods: This is a qualitative descriptive study entailing 12 semi-structured interviews with 15 carers of patients with ALC from three hospitals in Northwestern Ontario. Interviews were conducted between October 2015 and February 2016. Two reviewers thematically analyzed the interview data. Results: Five core themes were identified from the interview data: patient over person, uncertain and confusing process, inconsistent quality in care delivery, carers addressing gaps in the system, and personalization of long-term care. Conclusions: Waiting for long-term care from the hospital is a stressful and uncertain time for family carers. ALC is an 'in-between' phase when patients and carers may be at their most vulnerable yet receive the least care from the formal care system. Carers provide critical insight into the needs and behaviors of patients as well as processes that need to be improved to enhance their experience. Such insights will help health systems internationally as they grapple with the issue of ALC whilst trying to optimize engagement with patients and their families.
Background: Carers are family members or friends who support people with a mental health problem without being paid. Carer involvement in mental health treatment has been consistently supported by research evidence and promoted by policies but its implementation rates are poor. Particularly when patients are treated in inpatient units, carers often report being left without information or being excluded from decisions about treatment. In this study we have explored, along with staff perspectives, views of patients and carers who had a recent experience of inpatient mental health care on how to improve the implementation of carer involvement in inpatient care. Methods: Sixteen focus groups were held with carers, patients and clinicians in London, United Kingdom. We included staff working in inpatient units and patients and carers who had experience of inpatient care in the last five years. Data from focus groups were analysed using thematic analysis. Results: Eighty six participants in total (31 service users, 22 carers and 33 clinicians) attended the focus groups. Participants identified that generally, carer involvement should happen as soon as possible after admission, although this may be challenging in some cases. Carer involvement should include receiving information, participating in decisions about care and discharge and receiving emotional support by staff. When carers are involved, their personal knowledge of the patient's condition should be utilised. Challenges to carer involvement may include problems with identifying carers during a mental health crisis, obtaining valid patient consent, sharing appropriate information, and contacting and engaging carers. Additionally, it was perceived that all the ward staff need to be actively engaged in order to make carer involvement happen and this cannot be left only to specifically trained clinicians. Conclusions: These findings identify basic components that all family interventions in inpatient units should have. Further studies are needed to explore how and if purposively designed clinical interventions can improve carer involvement in inpatient treatment and, consequently, patient outcomes.
Background: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge. Aim: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. Design: Qualitative. Setting/participants: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted. Results: Current barriers to supporting carers at hospital discharge were an organisational focus on patients' needs, what practitioners perceived as carers' often 'unrealistic expectations' of end-of-life caregiving at home and lack of awareness of patients' end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition. Conclusion: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers' support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.
Background: Transcatheter aortic valve implantation (TAVI) is the treatment of choice for frail, older adults with severe symptomatic aortic stenosis. Although research about long-term clinical outcomes is emerging, there is limited evidence from the perspectives of patients and family caregivers on their perceived benefits and challenges after TAVI. Aims: The aim of this study was to describe older adults and family caregivers’ perspectives on undergoing TAVI at one year post-procedure. Methods: Qualitative description was the method of inquiry. A purposive sample of 31 patients and 15 family caregivers was recruited from a TAVI programme in western Canada. Semi-structured interviews were conducted with participants one year after TAVI. Data were analysed thematically. Results: All participants were satisfied with the decision to undergo TAVI. There were three central themes. First, recovery was experienced in the context of aging and comorbidities, which was shaped by patients’ limited options for care and post-procedure symptom burden. Second, reconciling expectations with reality meant that, for some patients, symptom burden remained prevalent and was also influenced by others’ expectations. Third, recommendations for recovery related to having information needs met, keeping informed of evolving care processes, and addressing individualised needs for support. Conclusions: The perspectives of participants provide a valuable contribution to the literature about undergoing TAVI. Clinicians need to be attentive to patients’ expectations of benefit and temper these with consideration of the individual’s broader health situation to provide treatment decision support. Patients and family caregivers also need adequate teaching and support to facilitate safe transition home given the shift towards early discharge after TAVI.
Introduction: Stroke causes disability that affects the life of patients, their relatives and the society in general. Global healthcare policies, suggest the sooner possible discharge of stroke patients from hospitals, but the transition to home is a stressful experience for family caregivers who are suddenly faced with the responsibility of homecare provision. Sufficient international evidence suggest that a pre-discharge educational program for preparing family caregivers could lead to better care, less complications and better quality of life, but Cyprus still do not provide such a program. Objectives: To challenge the current healthcare practices regarding the care of elderly patients with stroke and to propose an innovative training program that will be provided by the nurses during the pre-discharge period to family caregivers. Methodology: The proposed innovation is discussed around an overview of the international literature regarding the family caregivers' education in the improvement reforms that are being pursued with the new national health system of Cyprus. Additionally, it is suggested that the Ministry of Health should create discharge services of elderly stroke patients in each hospital with the creation of a Discharge Coordinator role, who could coordinate the proposed innovation, while he/she could also inform staff on how to provide the training program to family caregivers.discharge planning and the Lewin's change theory, since the development and implementation of the innovation as a whole is based on this theory. Results: International literature highlights that family caregivers have a diversity of responsibilities at home but also unmet training needs. If these needs are not met, they may cause burden to caregivers, thus impeding their capacity to provide safe homecare to patients. Considering the significance of post-discharge homecare to the elderly patients with stroke, a proposed training program was designed for family caregivers, in an effort to motivate nurses in Cyprus to provide this preparation. Conclusions and recommendations: An attempt should be made as for the proposed innovation to be included in the future planning of the care of stroke patients as part of the improvement reforms that are being pursued with the new national health system of Cyprus. Additionally, it is suggested that the Ministry of Health should create discharge services of elderly stroke patients in each hospital with the creation of a Discharge Coordinator role, who could coordinate the proposed innovation, while he/she could also inform staff on how to provide the training program to family caregivers.
In this cross-sectional study, we evaluated the quality of discharge documentation for stroke patients discharged home. Participants were stroke patients discharged from a regional tertiary acute and rehabilitation hospital in Australia from 2014 to 2015. Compliance with expected discharge documentation and its relationship with readmission was measured using an audit instrument for stroke patients (n = 54), and a post-discharge survey of carers was conducted. There were deficits in the documentation of the mechanism of stroke (70%), functional assessments (58%), pending test results (39%), types of support services required after discharge (35%), and patient/carer meetings with the multi-disciplinary stroke team (20%). Readmission was associated with lower compliance scores for information provided to patients or their carer. The survey results suggested that carer burden was high for carers of stroke patients discharged home. Documentation of carer/family meetings with the stroke team, functional assessments, medications, and adequate support services needs to be improved. General practitioners and carers need this information, so that they can address the post-discharge needs of these vulnerable patients.; © 2017 John Wiley & Sons Australia, Ltd.
Aims and Objectives: To describe the family caregivers' caregiving experience for stroke survivors and to identify the determinants of caregiving burden over 6 months.; Background: Sociocultural factors influence the caregiving experience in China. However, little is known about the dynamic changes occurring in Chinese caregivers' burden and its determinants.; Design: This is a prospective longitudinal study.; Methods: A total of 328 participants (164 stroke survivors and 164 family caregivers) from the neurological units of three hospitals in Shiyan were examined during a 6-month period at 1-2 days before discharge (T1) and 3 weeks (T2), 3 months (T3) and 6 months (T4) postdischarge using the Short Portable Mental Status Questionnaire, Multidimensional Scale of Perceived Social Support, Caregiver Strain Index and the Center for Epidemiological Studies-Depression.; Results: Of the 209 dyads recruited, 164 completed all data collection phases, with 69% of the female caregivers aged 56.04 (SD = 4.0; range = 22-80) years. Caregivers reported higher mean burden at T1 (7.35 ± 2.9) but slightly decreased over time at T4 (6.34 ± 3.4), had borderline mean depressive symptoms only in T1 (9.71 ± 3.2) and T2 (9.02 ± 3.8) and had moderate mean social support throughout the 6-month period. Determinants of caregiving burden were stroke survivors' physical dependence, caregivers' age, caring hours per day, depressive symptoms and social support, which explained 46.8%-55.0% of the total variance (p < .05).; Conclusion: Caregivers' burden remains a serious problem in the first 6 months. It is an increasing hazard, especially for those at an advanced age who have depressive symptoms and care for severely dependent stroke survivors requiring more caring hours.; Relevance To Clinical Practice: Nurses need to be aware of and understand caregivers' cultural values and beliefs about family obligations when considering an intervention to support them in their role at home.; © 2017 John Wiley & Sons Ltd.
Background: Chronic Obstructive Pulmonary Disease (COPD) is a leading cause of hospitalizations. Interventional studies focusing on the hospital-to-home transition for COPD patients are few. In the BREATHE (Better Respiratory Education and Treatment Help Empower) study, we developed and tested a patient and family-centered transitional care program that helps prepare hospitalized COPD patients and their family caregivers to manage COPD at home.; Methods: In the study's initial phase, we co-developed the BREATHE transitional care program with COPD patients, family-caregivers, and stakeholders. The program offers tailored services to address individual patients' needs and priorities at the hospital and for 3 months post discharge. We tested the program in a single-blinded RCT with 240 COPD patients who were randomized to receive the program or 'usual care'. Program participants were offered the opportunity to invite a family caregiver, if available, to enroll with them into the study. The primary outcomes were the combined number of COPD-related hospitalizations and Emergency Department (ED) visits per participant at 6 months post discharge, and the change in health-related quality of life over the 6months study period. Other measures include 'all cause' hospitalizations and ED visits; patient activation; self-efficacy; and, self-care behaviors. Discussion: Unlike 1-month transitional care programs that focus on patients' post-acute care needs, the BREATHE program helps hospitalized COPD patients manage the post discharge period as well as prepare them for long term self-management of COPD. If proven effective, this program may offer a timely solution for hospitals in their attempts to reduce COPD rehospitalizations. Copyright © 2017 Elsevier Inc. All rights reserved.
This article is the fifth in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The fifth video can be accessed at http://links.lww.com/AJN/A79
Background: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients’ perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care.
Aim: This paper explores the meanings of family caring for care recipients by drawing on older adults’ perspectives about the impact of hospital admission on established family caring relationships.
Design: Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design.
Setting: Interviews were conducted in older adults’ place of residence in northwest England between June 2009 and July 2010.
Participants: Participants were 27 older adults living with heart failure (n = 13) or lung cancer (n = 14), aged 69–89 years (mean 79 ± 4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions.
Findings: For community-dwelling older adults, family carers are conceptualised as ‘conductors’; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults’ hospital admission, family carers find themselves in the role of ‘second fiddle’, their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients’ behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults’ wellbeing across settings.
Conclusions: Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults.