Maintaining distance from a necessary intrusion: A postcolonial perspective on dying at home for Chinese immigrants in Toronto,Canada

PurposeThe purpose of this study was to describe and examine how meanings of home condition negotiations of care for Chinese immigrants with advanced cancer receiving palliative home care in Toronto, Canada.MethodThis focused ethnographic study drew on the tenets of postcolonial theory to examine the social and material circumstances associated with dying at home for Chinese immigrants. Eleven key informants were recruited, in addition to 4 cases comprised of a Chinese immigrant care recipient, primary family caregiver, and home visiting nurse. Individual, open-ended interviews were conducted with each participant, along with observations of home visits.ResultsPalliative care was not viewed strictly as an intrusion that was thrust upon the home without permission or invitation, but an insertion into the routines of the home that was necessary because care recipients recognized the need for palliative care providers to help navigate the system and negotiate dying at home. Consequently, care recipients and family caregivers also sought to minimize the intrusions of palliative care by preserving everyday routines and engaging with family and friends.ConclusionsAlthough the study was focused on Chinese immigrants, the findings resonate with and speak more broadly to the contextual, systemic, social, and material circumstances associated with dying at home for immigrants with advanced cancer. Nurses providing palliative home care to immigrants may begin to critically examine assumptions of “cultural” beliefs about cancer and end-of-life care and look beyond identifying ethno-specific practices, but come to recognize how nurses are implicated in a culture of palliative care.     

Supportive nursing care for family caregivers – A retrospective nursing file study

BackgroundFamily caregivers enable patients to be cared for and die at home whereas nurses aim to support the family caregivers of these patients. Information on how this support is provided and how this is documented in nursing files is largely lacking.AimTo gain insight in nurses' reports on the supportive care for family caregivers.MethodsWe studied 59 nursing files of adult patients who had received hospice home care in the Netherlands from 4 home care organisations between August 2017 and October 2018. Information on supportive nursing care for family caregivers was retrieved from the nursing files based on a prestructured form. Data was quantitatively and qualitatively analysed.Results54 out of 59 nursing files contained information about family caregivers; 40 files contained nursing diagnoses on family caregivers and in 26 files nursing interventions on supportive care for family caregivers were reported.ConclusionOnly half of the nursing files contained information about supportive nursing care for family caregivers. Complete nursing documentation of provided care to family caregivers is needed.     

A New Italian Questionnaire to Assess Caregivers of Cancer Patients' Satisfaction With Palliative Care: Multicenter Validation of the Post Mortem Questionnaire-Short Form

ContextCaregiver satisfaction with palliative care is a crucial indicator of its effectiveness. In light of the lack of validated or reliable Italian instruments, the Post Mortem Questionnaire-Short Form (QPM-SF), a self-report questionnaire, has been developed to assess home and inpatient hospice care.ObjectivesThe present study was designed to evaluate the psychometric properties of QPM-SF and assess for differences in quality of palliative care between hospice and home care settings.MethodsA total of 584 caregivers of terminal cancer patients completed QPM-SF one month after the death of the care recipient. To assess test-retest reliability, a subgroup of 50 caregivers completed the questionnaire a second time, one month later.ResultsQPM-SF showed good internal consistency and temporal stability and a four-factor structure: “Integrated home care,” “Hospice,” “Physical care-Information-Global evaluation,” and “Needs.”ConclusionQPM-SF may be considered a valid, reliable, and well-accepted self-report instrument for examining and implementing palliative care interventions.     

Safety of Care by Caregivers of Cancer Patients

ObjectivesTo describe common areas of threats to patient safety and quality of care when caregivers provide care. Recommendations for caregivers to enable them to provide safe care are included.Data SourcesResearch-based articles and reports.ConclusionThe literature is limited in discussion on home safety issues for caregivers. Non cancer-specific literature provides some direction for recommendations for nurses to guide caregivers.Implications for Nursing PracticeThe home environment is an unregulated and uncontrolled site, and the safety risks families take are unknown. Professionals should assess the caregiver's knowledge and ability when providing caregiving guidance to ensure the patient is receiving safe and quality care. Nurses need to stress the importance of providing safe quality care and provide education and community resources.     

Cuidados e implicaciones en los cuidadores de pacientes quirúrgicos en el domicilio

ObjectiveTo identify the care given by informal caregivers to patients who underwent abdominal surgery in the Consorci Hospitalari of Vic (Barcelona). To compare the responsibility burden for those caregivers in all the different stages of the surgical process. To determine the consequences of the care itself on the caregiver's health and to identify the factors that contribute to the need of providing care and the appearance of consequences for the caregivers in the home.MethodologyA longitudinal observational study with follow-up at admission, at discharge and 10 days, of 317 non-paid caregivers of patients who suffer underwent surgery. The characteristics of caregivers and surgical patients were studied. The validated questionnaire, ICUB97-R based on the model by Virginia Henderson, was used to measure the care provided by informal caregivers and its impact on patient quality of life.ResultsMost of the caregivers were women, with an average age of 52.9 ± 13.7 years without any previous experience as caregivers. The greater intensity of care and impact was observed in the time when they arrived home after hospital discharge (p < 0.05). The predictive variables of repercussions were being a dependent patient before the surgical intervention (β = 2.93, p = 0.007), having a cancer diagnosis (β = 2.87, p < .001) and time dedicated to the care process (β = 0.07, p = 0.018).ConclusionsCaregivers involved in the surgical process provide a great amount of care at home depending on the characteristics of patients they care for, and it affects their quality of life.     

The Prevalence and Types of Complementary and Integrative Health Therapies Used by Caregivers of Patients with Cancer

ObjectiveTo assess rationale for usage and types of complementary and integrative health therapies used as self-care by unpaid cancer caregivers.Data SourcesCINAHL, PubMed, PsycINFO, Embase, and Alt HealthWatch.ConclusionSix articles provide updated information on caregiver preferences and desires relative to use of complementary and integrative health therapies. Findings largely focused on patients; whereas perceptions of caregivers were secondary.Implications for Nursing PracticeGiven shifts in cancer care from clinics to home, clinicians can increase their effectiveness through a better understanding of the caregiving experience, allowing for delivery of supportive, personalized interventions. Such support may include evidence-based complementary and integrative health therapies for caregivers.     

El impacto de cuidar en el bienestar percibido por mujeres y varones de mediana edad: una perspectiva de género

ObjectiveTo explore the relationship between middle-aged caregivers’ gender and the impact of caregiving on their health and families in the current socioeconomic context in Spain.MethodThis study, which has a postfeminist perspective, was performed in the island of Majorca (Spain). Individual interviews in the home and focus groups with male and female caregivers belonging to three different generations were conducted.ResultsParticipants’ narratives about the impact of caregiving on caregivers’ perceived well-being revealed complex themes such as difficult relationships among caregivers and their families as well as conflicts with the person receiving care. The emotional impact was more intense in female than in male caregivers. The perceived impact and adaptive strategies utilized by caregivers were framed within the gender patterns and roles assigned by patriarchal societies.Gender and generation influence perceptions of the impact of caregiving on physical and psychological health, family dynamics, paid work, leisure activities, and social relationships among caregivers. The implications of these results for public policy and nursing practice and research are discussed.     

Associations Between Hospice Care and Scary Family Caregiver Experiences

ContextHospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.ObjectivesTo examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.MethodsSecondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.ResultsHospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.ConclusionHospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.     

Cancer Caregivers’ Prognostic and End-of-Life Communication Needs and Experiences and their Impact

ContextFamily caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers’ communication experiences or the impact of these experiences on patients and caregivers at EOL.ObjectivesInvestigate cancer caregivers’ communication experiences and potential impact on patient and caregiver outcomes.MethodsSemistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes.ResultsCaregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating—often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers’ and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers’ abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement.ConclusionCaregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients’ communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.     

TPN update: making each visit count

Caring for patients on TPN is a challenge for the home care nurse. These patients may present with either a short- or long-term need for TPN but in either case, the impact on daily life related to administration and monitoring of this complex infusion therapy is significant for both patients and their caregivers. The risks and complications of TPN can be serious. Nurses must possess expert knowledge of TPN administration and a high level of competence in assessment and monitoring of patients on TPN. Patients and caregivers will learn technical procedures in the home that produce anxiety in graduate nurses! The nurse must also possess skill and confidence in teaching patients to effectively administer, manage, and incorporate TPN infusion therapy into their lives.     

Effectiveness of an educational intervention to reduce the burden on home care workers and facilitating factors: A pre-post study

AimsTo determine if a training program, aimed at home care workers, for caring for the elderly and for providing their own self-care is effective for reducing workers burden in the short and long terms and to identify the associated variables that can influence burden across 12 months.BackgroundAn increasing number of older adults rely on home care workers as a complement to the care received from family caregivers. However, these workers do not usually have any formal training in nursing care and occasionally suffer burden.DesignA pre- and post-intervention study with a follow-up at 12 months including 86 participants.MethodsAn 85-hour training course, which included a practical module lasting 35 h, was offered on five separate occasions between 2014 and 2017 in Barcelona (Spain). The care burden was measured according the Zarit Burden Interview and care knowledge and perceived difficulty performing care tasks were assessed. We also gathered data on the physical and psychological status of the care recipients.ResultsThe educational intervention was effective after training (−7.45% p = .020) and although the initial burden on caregivers did not worsen significantly despite spending 12 months caring for people with moderate physical and psychological dependence, the decrease in the burden was not maintained over time. Associated variables that can influence the burden over 6 months were the caregivers’ baseline perception of lacking knowledge and/or having no difficulty with care tasks. The variable that could influence overburden in caregivers at 12 months was becoming ill before the intervention.ConclusionsFor the first time, the effectiveness of home workers-specific training has been demonstrated: a reduction in the perceived burden was observed immediately following training completion, but this reduction was not sustained at 6/12 months. The practical interpretation is that a remedial/follow-up training course may be needed. Whether difficulty in providing care or having sufficient knowledge and having an illness influence self-care maintenance requires further verification.     

A cluster randomized trial of a primary palliative care intervention (CONNECT) for patients with advanced cancer: Protocol and key design considerations

BackgroundThe addition of specialty palliative care to standard oncology care improves outcomes for patients with advanced cancer and their caregivers, but many lack access to specialty care services. Primary palliative care—meaning basic palliative care services provided by clinicians who are not palliative care specialists—is an alternative approach that has not been rigorously evaluated.MethodsA cluster randomized, controlled trial of the CONNECT (Care management by Oncology Nurses to address supportive care needs) intervention, an oncology nurse-led care management approach to providing primary palliative care for patients with advanced cancer and their family caregivers, is currently underway at 16 oncology practices in Western Pennsylvania. Existing oncology nurses are trained to provide symptom management and emotional support, engage patients and families in advance care planning, and coordinate appropriate care using evidence-based care management strategies. The trial will assess the impact of CONNECT versus standard oncology care on patient quality of life (primary outcome), symptom burden, and mood; caregiver burden and mood; and healthcare resource use.DiscussionThis trial addresses the need for more accessible models of palliative care by evaluating an intervention led by oncology nurses that can be widely disseminated in community oncology settings. The design confronts potential biases in palliative care research by randomizing at the practice level to avoid contamination, enrolling patients prior to informing them of group allocation, and conducting blinded outcome assessments. By collecting patient, caregiver, and healthcare utilization outcomes, the trial will enable understanding of the full range of a primary palliative care intervention's impact.     

The experience of family caregivers caring for a terminal patient at home: A research review

IntroductionOne of the key aspects of the care of terminal patients is care delivered in their own home. Increasingly, the process of dying is moving from hospitals to homes. Although this process is directly related to the support of the social health environment, the involvement of family caregivers is essential. Given the impact that caring for a terminally ill family member has on people’s lives, it is necessary to comprehend their personal experience in a holistic way.ObjectiveTo reveal the experience of family caregivers who are caring for a terminal patient in their home.DesignA qualitative systematic review of articles published from 2000 to 2015 was conducted between March and September of 2015. The following databases were consulted: CINAHL, PubMed, PsycINFO, Cochrane Library, SciELO and Dialnet. After applying the selection criteria, 12 relevant studies were identified. Subsequently, two of the reviewers jointly performed a qualitative content analysis of them.ResultsThe analysis permitted the caregivers’ experiences to be grouped into five themes: 1) Learning the diagnosis: uncertainty about the future and the prospects of death; 2) Feeling the physical and emotional burden of care; 3) Experiencing a limited life; 4) Redefining the relationship with the person being cared for; and 5) Valuing the importance of the support of the environment.ConclusionsThis review shows that caring for a family member with advanced illness in the home has a great impact on the personal realm of the caregiver and in the relationship he or she maintains with the ill family member. Being involved in the process of dying translates into a prodigious physical and psychological effort, together with a substantial limitation on the normal development of their own life. Additionally, the caregiver must face and establish a new relationship with the family member, in accordance with the new ethos, without the help of a formal structure providing the necessary support. These results may help to focus attention on family caregiver needs and to develop the knowledge necessary to meet the current demands of end-of-life health care in the home.     

End-of-Life Care in Italian Hospitals: Quality of and Satisfaction With Care From the Caregivers' Point of View—Results from the Italian Survey of the Dying of Cancer

ContextA number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.ObjectivesThe aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.MethodsThis is a mortality follow-back survey of 2,000 cancer deaths representative of the country. Caregivers were interviewed about patients' experiences by using a tailored version of the View of Informal Carers—Evaluation of Services questionnaire.ResultsValid interviews were obtained for 84% (n = 364) of the cancer patients who died in hospital. Most Italian cancer patients dying in hospital suffered from a number of untreated or poorly treated symptoms, and only a few reported an acceptable control over physical suffering. Moreover, only two-thirds of patients and one-third of caregivers received basic information on therapies and care. About one-third of the caregivers expressed dissatisfaction with the health care received. The probability of being satisfied was more likely for caregivers of patients living in the north of Italy; caregivers of patients who had not experienced or were only slightly distressed by fatigue; and caregivers who were generally satisfied with hospital facilities and when the health care professionals had provided appropriate information to both patients and caregivers.ConclusionThis study revealed poor quality of EOL care in Italian hospitals, with almost one-third of the caregivers expressing their clear dissatisfaction. A national policy is, therefore, urgently called for to improve the quality of EOL care in Italian hospitals.     

The burden of diarrhea in the intensive care unit (ICU-BD). A survey and observational study of the caregivers’ opinions and workload

BackgroundDiarrhea as a common complication affects 14% patients in our intensive care unit. Risk factors for diarrhea and its clinical consequences for patients are well known, but the impact of diarrhea on caregivers’ workload remains undocumented.ObjectivesThis study aims at establishing the impact of diarrhea on costs and human burden in intensive care unit caregivers.DesignA survey and observational study.SettingsA mixed 36-bed medical and surgical intensive care unit.ParticipantsAll intensive care unit caregivers (nurses and nursing aides).MethodsA questionnaire was designed by a multidisciplinary team and completed by intensive care unit caregivers analyzing the clinical and human impact of diarrhea on their workload. Time measurements for the management of liquid stools were performed. Human related costs of diarrhea were analyzed according to caregivers’ years of clinical experience.ResultsQuestionnaires were completed by 146 of 204 intensive care unit caregivers (75% nurses; 73% nursing aides). Dealing with diarrhea patients is a painful aspect of their work (69% nurses) with tiredness as main feeling and a source of conflict or misunderstanding among caregivers. The mean time measurement for managing one liquid stool in 50 diarrhea episodes was 17 min and 33 s, involving an average of 1.4 nurses and 0.8 nursing aides. Average human resources cost burden was 26.60 CHF per liquid stool.ConclusionDealing with diarrhea increases workload for intensive care unit caregivers with consequences on their well-being. Human related costs of diarrhea are substantial and highlight the economic burden of diarrhea episodes in the intensive care unit. A multidisciplinary approach and specific protocols could positively impact the burden of diarrhea in the intensive care unit.Trial registrationClinical Trials gov NCT01922570.     

A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation

Abstract

Purpose: Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Methods: Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Results: Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. Conclusions: A comprehensive, systematic caregiver assessment to understand the caregiver’s concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role.

• Implications for Rehabilitation

• Stroke is a sudden event that often leaves stroke survivors and their families in crisis.

• The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation.

• Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver.

• Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.