Objectives: This study examines different combinations of informal and formal care use of older adults and investigates whether these combinations differ in terms of need for care (physical and psychological frailty) and enabling factors for informal and formal care use (social and environmental frailty).
Methods: Using cross-sectional data from the Belgian Ageing Studies (survey, N = 38,066 community-dwelling older adults), Latent Class Analysis (LCA) is used to identify combinations of informal and formal care use. Bivariate analyses are used to explore the relationship between the different combinations of care use and frailty.
Results: Latent Class Analysis (LCA) identified 8 different types of care use, which vary in combinations of informal and formal caregivers. Older adults who are more likely to combine care from family and care from all types of formal caregivers are more physically, psychologically and environmentally frail than expected. Older adults who are more likely to receive care only from nuclear family, or only from formal caregivers are more socially frail than expected.
Conclusions: Older adults with a higher need for care are more likely to receive care from different types of informal and formal caregivers. High environmental frailty and low social frailty are related with the use of care from different types of informal and formal caregivers. This study confirms that informal care can act as substitute for formal care. However, this substitute relationship becomes a complementary relationship in frail older adults. Policymakers should take into account that frailty in older adults affects the use of informal and formal care.
Objectives: To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications.
Data Sources: Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer.
Conclusion: The evidence base is growing; however, more studies are needed to test the effectiveness of technology.
Implications for Nursing Practice: Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.
Palliative care initiatives strive to control symptoms and improve the quality of care for individuals with heart failure (HF) and their informal caregivers. Yet, caregiving is stressful for many caregivers and requires a delicate balancing act between providing quality care and maintaining other responsibilities. Support services are a crucial component of palliative care. Yet, little is known regarding what support services HF caregivers need to assist with caregiving duties. Thus, the purpose of this study was to identify support services informal caregivers perceive would be useful in caring for individuals with heart failure in the home. This secondary analysis was part of a cross-sectional, descriptive, exploratory study which included 530 heart failure caregivers, using an online self-report instrument. Content and quantitative data analyses were conducted. Caregivers were primarily Caucasian (n = 415; 78.3%) male (n = 270; 50.9% male), with an average age of 41.4 (±10.4) years. Individuals with heart failure were mostly male (n = 297; 56.0%), age 54.3 (± 14.8) years of age and had New York Heart Association Class I-II heart failure (n = 375; 70.7%). Needed support services identified by caregivers related to cost effective heart failure support, caregiver information/education/training, and caregiver support. These services had two or more components. Caregivers of individuals with heart failure experience complex problems in the home that require important services to enhance palliative care. Exploring ways to provide these important support services will assist in the development of interventions to reduce negative outcomes and enhance heart failure palliative care.
Introduction : Soixante pour cent des personnes atteintes de la maladie d’Alzheimer vivent à domicile. Le maintien à domicile a un impact positif sur l’évolution des troubles du malade. L’aidant naturel en est un acteur indispensable, mais le retentissement sur sa santé est majeur. Le médecin généraliste a un rôle d’évaluation et d’anticipation sur le risque d’épuisement de l’aidant, défini par les pouvoirs publics. Un des outils proposés par la Haute autorité de santé (HAS) est la consultation dédiée au cours du suivi des aidants. L’objectif de l’étude était d’évaluer la place de cette consultation dédiée et son contenu en médecine générale.
Matériel et méthodes : Il s’agissait d’une étude épidémiologique descriptive auprès d’aidants de patients atteints de la maladie d’Alzheimer suivis par des médecins généralistes de la Somme, de mai à juillet 2018.
Résultats : 19 médecins généralistes ont participé, ce qui a permis d’interroger 49 aidants. 6,1 % des aidants naturels ont bénéficié d’une consultation dédiée. La mise en place des aides professionnelles est souvent réalisée. L’évaluation du fardeau de l’aidant et l’orientation de celui-ci vers les structures dédiées sont rarement réalisées.
Discussion : L’exploration des besoins et des difficultés en médecine générale dans l’anticipation du risque d’épuisement de l’aidant est nécessaire. Elle permettrait d’apporter des outils adaptés et d’améliorer la prévention du risque d’épuisement de l’aidant, qui met en péril le maintien à domicile du patient.
Conclusion : Le développement d’une approche préventive des aidants et de l’utilisation des aides dédiées à ceux-ci est primordial pour améliorer la qualité de vie du patient et de son entourage.
BACKGROUND: Caregivers of patients with cancer experience high levels of caregiver-related strain and burden (CGSB). Cancer caregiving is complex and can change dramatically depending on the cancer trajectory. Often, this experience leads to poor health outcomes for the caregiver.
OBJECTIVES: This review appraises the evidence on CGSB published from 2007 to October 2017.
METHODS: 128 interventional studies found in PubMed® and CINAHL® were appraised and categorized based on the Oncology Nursing Society's Putting Evidence Into Practice schema.
FINDINGS: Psychoeducation, supportive care/support interventions, and cognitive behavioral interventions are recommended to decrease CGSB. Caregiver skill training, couples therapy, decision support, mindfulness-based stress reduction, multicomponent interventions, and palliative care are likely to be effective. The evidence is not established for 13 interventions. Despite the proliferation of studies focusing on CGSB, studies with stronger designs and larger samples are needed.
This study was designed to promote enhanced self-efficacy and decreased stress levels for family caregivers at a hospice care hospital, thus increasing their quality of life. This is achieved through group flower arranging sessions. The objectives are to (a) enhance self-efficacy scores for family caregivers of Calvary patients, (b) decrease stress levels for family caregivers of Calvary patients, and (c) disseminate results to other hospices. The results show that the flower arranging sessions resulted in significantly increased self-efficacy and decreased stress and associated problems for the caregiver participants. Implications and suggestions for future research are discussed.
Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities.
Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life.
Design: A qualitative design with a phenomenological approach was adopted.
Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities.
Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment.
Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust.
Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers' reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples' communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication's influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.
Background: Alexithymia, or difficulty identifying and describing emotions and sensations, contributes to an increased risk of chronic pain, and low help-seeking.
Objective: To investigate whether family caregivers of advanced cancer patients visiting a palliative care department had alexithymia, and whether this was related to their pain intensity, personalized pain goals, and help-seeking for chronic musculoskeletal pain.
Design: A single-center cross-sectional survey.
Measurements: Pain intensity was evaluated using a numerical rating scale. Pain improvement was evaluated against personal goals. Alexithymia was assessed using the Toronto Alexithymia Scale-20 (TAS-20), and anxiety and depression using the Hospital Anxiety and Depression Scale.
Setting/Subjects: Of 320 family caregivers visiting the palliative care department, 152 (47.5%) had chronic musculoskeletal pain; all 152 were included in the study.
Results: Alexithymia was observed in 36.2% of participants. Participants with higher scores on the TAS-20 tended to have higher pain intensity scores and personal pain goal scores. TAS-20 score had the strongest correlation with personal pain goals, with a correlation coefficient of 0.555 (p < 0.001).
Conclusions: Pain intensity in family caregivers with alexithymia tended to be high. These participants set higher personal pain goals (lower goals for symptom improvement) than those without alexithymia. We found no difference in personal pain goal response between family caregivers with and without alexithymia. When we examine pain in family members with alexithymia who are caring for cancer patients, we need to recognize that they may set higher personal pain goals and seek less help.
Objective: We aimed to clarify the content of different types of regrets or lack of regret, and the frequency of feeling regret among family caregivers who assisted their relatives during their end of life stage.
Method: Seventy primary informal caregivers in Israel were interviewed (17 spouses, 52 children, and 1 cousin) concerning their regret about the end of life of their deceased relative, including a general question about regret and questions about regret concerning life-sustaining treatments. After calculating the frequency of regrets and lack of regret, we conducted a qualitative analysis, using a thematic approach to identify themes and interpret data.
Results: A majority of caregivers (63%) expressed regret and about 20% expressed ambivalence involving both regret and denial of regret. Regrets pertained to care given, suffering experienced, and the caregiver's behavior towards, and relationship with the deceased, including missing opportunities to express love and caring toward relatives. Caregivers viewed almost 30% of 75 administered life-sustaining procedures as misguided. Most regrets involved inaction, such as not communicating sufficiently, or not fighting for better care.
Conclusion: This article provides a comprehensive description of EoL regrets, and helps clarify the complexity of regrets, lack of regrets, and ambivalence concerning regrets, though the study is limited to one country. Analysis suggests the need for public education concerning the EoL process, and for changes within the health care system to improve communication, to improve understanding of the needs of the terminally ill, and to provide more instruction to family caregivers to help them understand EoL.
PURPOSE: The quality of the relationship between oncologists and cancer patients has been associated with caregiver bereavement outcomes, but no studies have examined whether the perceived quality of the relationship between cancer caregivers and oncologists is associated with caregiver experiences of end-of-life care or psychological adjustment after the patient's death.
METHODS: We conducted secondary analyses of data collected in the Values and Options in Cancer Care (VOICE) study, a randomized controlled trial of an intervention that improved communication between oncologists and patients/caregivers (n = 204 dyads). At study entry, we assessed caregivers' experiences with the oncologist using four items from the Human Connection Scale. Following patients' deaths, we assessed bereaved caregivers' experiences with end-of-life cancer care (Quality of Death; Peace, Equanimity, and Acceptance in the Cancer Experience [PEACE]; Caregiver Evaluation of the Quality of End-of-Life Care [CEQUEL]; and modified Decision Regret scales) and psychological adjustment (Prolonged Grief Disorder-13 and Purpose in Life scales). We conducted multivariable regressions examining prospective associations between caregiver experiences with the oncologist at study entry and outcome variables.
RESULTS: Data were collected from 105 caregivers of patients who died during the course of the study. Positive experience with the oncologist was prospectively associated with better experiences of end-of-life care, as reflected in better quality of death (estimate = 0.33, SE = 0.14, p = 0.02), PEACE (estimate = 0.11, SE = 0.05, p = 0.04), and decisional regret (estimate = - 0.16, SE = 0.06, p = 0.01). Caregivers' experience with the oncologist was not significantly associated with indicators of psychological adjustment.
CONCLUSION: Caregivers' early experiences with oncologists may affect their experiences of the patient's end-of-life care.
Health information and communication are key elements that allow patients and family members to make decisions about end-of-life care and guarantee a death with dignity.
Objective: To understand caregivers' experiences regarding health information and communication during the illness and death of family members.
Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were caregivers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and five discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive reading was carried out along with a second reading. The most relevant units of meaning were identified, and the categories were extracted. The categories were then grouped in dimensions and, finally, the contents of each dimension were interpreted and described given the appropriate clarifications.
Results: Four dimensions of the dying process emerged: differences in caregivers' perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change.
Conclusions: Poor management of health information and communication at the end of life increased the suffering and discomfort of patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.
Ce chapitre est l'une des contributions de conférenciers intervenus lors d'une journée d'études de l'Ecole de Propédeutique à la Connaissance de l'Inconscient intitulée "Deuil et séparation". L'auteure est intervenue sur le deuil blanc d'une personne atteinte de la maladie d'Alzheimer. Elle définit ce qu'est le deuil blanc, ses répercurssions psychiques tant chez le malade que chez ses proches aidants.
OBJECTIVE: Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care.
METHODS: This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes.
RESULTS: Four themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP.
CONCLUSIONS: ACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.
Background: Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO.
Methods: This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers.
Results: Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8–506) and for those 17 on HPN was 156 days (range 46–506).
Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state.
Conclusions: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.
Background: Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home.
Methods: This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state.
Discussion: The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process.
BACKGROUND: This study considers the specific context of the end of life, in particular the agony phase, and the experience of sharing the body observation competence with the relatives of dying patients, in order to consider the effect of such psychological intervention.
METHODS: The research was conducted in two phases: during the pre-exitus period (days or hours before the death of the patient) six relatives received some information .on the phenomenology of agony; during the post-exitus, they participated in semi-structured interviews, which were audio-recorded and transcribed with the purpose of extracting relevant aspects of their experience with their terminally-ill relative. The Interpretative Phenomenological Analysis (IPA) was used to cluster the emerged experiences by thematic analysis, which was performed using the Atlas.ti 7 software.
RESULTS: The relatives' verbatim representation is clustered in three areas of thematic prevalence: context and choice of the hospice, phenomenology of agony and psychological support. The first area shows how essential the choice of the hospice was for the patient. Even if the hospice is perceived as a place of death, it allows to manage the pain and simultaneously relieves the caregiver's burden. The second area describes the process of perception of body changes during agony. Finally, the third area outlines how giving elements to recognise the progression of the dying body and suggestions on the functional behaviour around the agonising patient may fill the cultural lack of practical experience regarding dying.
CONCLUSIONS: The results require further investigation, starting from the positive feedback on the efficacy of a specific support model called "human protocol".
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.