Search

Background: Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members' experiences and support needs., Aim: To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU)., Design: Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis., Setting/participants: Ten family members of adult COVID-19 patients in the ICU., Result: Seven key themes represented family members' experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19's effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members' feelings about the patient's diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones., Conclusion: The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family's burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.

Objective: The aim of this study was to develop learning objectives and identify content for a core communication and health literacy curriculum designed to optimize the role of informal cancer caregivers (family or friends)., Methods: A three-step process was conducted: (a) two-round online Delphi method process with experts (n = 9) in cancer caregiving to gain consensus on curriculum learning objectives; (b) online survey of oncology providers (n = 32) to generate potential content and rate importance of domains; and (c) focus group of cancer caregivers (n = 6) to explore caregiving experiences and curriculum content topics., Results: Overall, 17 learning objectives and 53 topics were identified for a cancer caregiver communication and health literacy curriculum. Feedback from cancer caregivers did not produce any new topics yet confirmed topics generated by experts and providers. The curriculum identified as essential has been organized under the following headings: finding cancer information; assessing and integrating information; working with health care providers; getting help; talking with the care recipient; recognizing the care recipient's needs; and planning for caregiver self-care., Conclusions: This theoretically grounded study systematically identified seven curriculum topic areas and content unique to caregivers and included input from key stakeholders. The next step is to develop the program for dissemination and to test its impact on caregiver and patient outcomes., (© 2020 John Wiley & Sons, Ltd.)

Background: A growing body of research has identified health-related quality-of-life effects for caregivers and family members of ill patients (i.e. 'spillover effects'), yet these are rarely considered in cost-effectiveness analyses (CEAs)., Objective: The objective of this study was to catalog spillover-related health utilities to facilitate their consideration in CEAs., Methods: We systematically reviewed the medical and economic literatures (MEDLINE, EMBASE, and EconLit, from inception through 3 April 2018) to identify articles that reported preference-based measures of spillover effects. We used keywords for utility measures combined with caregivers, family members, and burden., Results: Of 3695 articles identified, 80 remained after screening: 8 (10%) reported spillover utility per se, as utility or disutility (i.e. utility loss); 25 (30%) reported a comparison group, either population values (n = 9) or matched, non-caregiver/family member or unaffected individuals' utilities (n = 16; 3 reported both spillover and a comparison group); and 50 (63%) reported caregiver/family member utilities only. Alzheimer's disease/dementia was the most commonly studied disease/condition, and the EQ-5D was the most commonly used measurement instrument., Conclusions: This comprehensive catalog of utilities showcases the spectrum of diseases and conditions for which caregiver and family members' spillover effects have been measured, and the variation in measurement methods used. In general, utilities indicated a loss in quality of life associated with being a caregiver or family member of an ill relative. Most studies reported caregiver/family member utility without any comparator, limiting the ability to infer spillover effects. Nevertheless, these values provide a starting point for considering spillover effects in the context of CEA, opening the door for more comprehensive analyses.

Objective: The aim of this study is to illustrate an evidence-based and theoretically informed mhealth resource (smartphone app) designed to provide communication support for informal cancer caregivers (friends or family members)., Methods: An eight-step process was conducted: (a) review of existing print resources, (b) selection of theoretical framework for content development, (c) integration of stakeholder feedback and literacy assessment into an alpha print model, (d) review of existing mhealth resources, (e) development of prototype, (f) assessment of caregiver acceptability (n = 5), (g) assessment of quality and perceived impact by cancer providers (n = 26), and (h) acceptability testing with caregivers (n = 6)., Results: Key stakeholders were integrated throughout development and user testing of this iOS smartphone app. The smartphone app consists of talking tips and resources for caregiver communication with the patient, family, far away family, and health care providers, as well as general information sharing features., Conclusions: This study demonstrates feasibility and development of an evidence-based and theory-driven mhealth resource to support caregiver communication about cancer. This is the first theory-driven mhealth application created to support the communication burden experienced by cancer caregivers. A larger study is needed to establish the efficacy of the app as an intervention for caregivers., (© 2018 John Wiley & Sons, Ltd.)

Background: Family caregivers are a key communication source for nurses, and there is a need to provide communication skill building for caregivers., Objective: A pilot study was conducted to determine feasibility and use of a communication coaching telephone intervention aimed at improving caregiver confidence in communication and reducing psychological distress., Methods: A printed communication guide for caregivers and a 1-time communication coaching call delivered by a research nurse were provided to caregivers. Recruitment and attrition, implementation and content of coaching calls, caregiver outcomes, and satisfaction with intervention were analyzed., Results: Twenty caregivers were recruited across 4 cohorts-diagnosis, treatment, survivorship, and end of life-with recruitment greater than 70%. Caregiver calls averaged 37 minutes, and most caregivers reported communication challenges with family members. Caregiver action plans revealed a need to develop communication skills to ask for help and share information. Caregivers reported satisfaction with the print guide, and 90% of caregivers followed through with their action plan, with 80% reporting that the action plan worked. Caregiver confidence in communication with healthcare providers was improved, except for caregivers of cancer survivors., Conclusions: Recruitment and attrition rates demonstrate feasibility of the intervention. Caregivers reported that the communication coaching telephone intervention was considered valuable and they were able to implement a communication action plan with others., Implications for Practice: Lessons were learned about intervention content, namely, that nurses can help caregivers learn communication strategies for asking for help, sharing cancer information, and initiating self-care.

Objectives: To describe a family caregiver communication typology and demonstrate identifiable communication challenges among four caregiver types: Manager, Carrier, Partner, and Lone., Data Sources: Case studies based on interviews with oncology family caregivers., Conclusion: Each caregiver type demonstrates unique communication challenges that can be identified. Recognition of a specific caregiver type will help nurses to adapt their own communication to provide tailored support., Implications for Nursing Practice: Family-centered cancer care requires attention to the communication challenges faced by family caregivers. Understanding the challenges among four family caregiver communication types will enable nurses to better address caregiver burden and family conflict., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Objective: Although spiritual care is considered one of the pillars of palliative care, many health-care providers never receive formal training on how to communicate about spirituality with patients and families. The aim of this study was to explore the spiritual care experiences of oncology nurses in order to learn more about patient needs and nurse responses., Methods: A survey was circulated at a communication training course for oncology nurses in June 2015. Nurses recalled a care experience that included the initiation of a spiritual care topic and their response to the patient/family. Data were analyzed using thematic analysis., Results: Nurses reported that communication about spirituality was primarily initiated by patients, rather than family members, and spiritual topics commonly emerged during the end of life or when patients experienced spiritual distress. Nurses' experiences highlighted the positive impact spiritual conversations had on the quality of patient care and its benefit to families. Spiritual communication was described as an important nursing role at the end of patients' lives, and nonverbal communication, listening, and discussing patients' emotions were emphasized as important and effective nurse communication skills during spiritual care conversations. Approximately one-third of nurses in the sample reported sharing their own personal spiritual or religious backgrounds with patients, and they reported that these sharing experiences strengthened their own faith., Conclusion: It is evident that patients want to discuss spiritual topics during care. Study findings illustrate the need to develop a spiritual communication curriculum and provide spiritual care communication training to clinicians.

Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paediatrics and help nurses develop skills for communicating about spirituality, this research examined the spiritual needs of families based on nurses' experiences with families of seriously ill children. Nurses' experiences revealed that families' anger with God, blame/regret, forgiveness, and ritual and cultural traditions are salient spiritual needs requiring effective nurse communication skills to support families of ill children.

Objectives: The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers., Methods: Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized., Results: A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure., Conclusions: Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type., (Copyright © 2015 John Wiley & Sons, Ltd.)

Background: Caring for an ill or disabled family member imposes a well-documented burden on the caregiver. The benefits of a health intervention may be underestimated if "spillover" effects on family members are not captured, resulting in inaccurate conclusions of economic evaluations., Objective: To provide an estimate of, and to summarize measurement approaches for, the spillover disutility of illness on family members, relatives, and caregivers, through a systematic review of the literature., Methods: The medical (PubMED), psychology (PsycINFO), and economics (EconLit) literatures were searched from inception through February 2012 for published studies measuring spillover disutility of illness on family members and caregivers. Inclusion criteria were (1) studies using preference-based measures of health-related quality of life, and (2) studies reporting spillover disutility, or (3) studies reporting data from which a spillover disutility could be inferred., Results: Fifteen studies were included in this review: seven reported estimates of spillover disutility and eight reported data from which disutility could be inferred. Three studies found no disutility associated with spillover, whereas 12 found measurable effects as large as -0.718 (and two found evidence of positive spillover in subsets of their samples). Generic (indirect) utility instruments were primarily used to measure spillover, including the EQ-5D, QWB, and HUI (n = 13), though two studies used modified versions of the time trade-off technique. Illnesses studied included childhood disorders (e.g., spina bifida, congenital malformations), diseases of the elderly (e.g., Alzheimer's disease and dementia), physically disabling conditions (e.g., arthritis, multiple sclerosis), and medical conditions such as cancer and stroke. The persons affected by spillover included parents, grandparents, spouses/partners, other family caregivers, and household members., Conclusions: There is a limited literature on the spillover disutility of illness on family members and caregivers, providing some specific estimates of a generally small, negative effect for particular conditions and individuals. Measurement methods vary across studies and a consensus approach has not yet been reached. Evidence suggests that the inclusion of spillover effects in economic evaluations would increase the relative effectiveness of interventions that address conditions with spillover compared to those without, though such differential benefits may be limited to such specific circumstances.

Objective: Spillover effects of illness on family members can be substantial. The objective of this study was to identify the domains of family members' health and well-being that are affected when a relative has a chronic health condition., Methods: Semi-structured telephone interviews were conducted in February 2012 with 49 individuals whose relatives had any of five chronic health conditions (arthritis, cancer, Alzheimer's disease/dementia, cerebral palsy, and depression), purposively sampled to include different relationships with the ill relative (parent, child, spouse). Subjects were queried on whether and how having an ill relative affected their health and well-being; they were also asked about their caregiving responsibilities and the relative's health. Interview data were analyzed using thematic analysis., Results: Family members in our sample reported experiencing psychological and non-health effects from having an ill relative, and secondarily somatic effects. Effects on emotional health were most commonly reported as psychological spillover; non-health effects frequently included changes in daily activities and provision of caregiving. Spouses of patients reported the broadest range of spillover domains affected and adolescents of ill parents the fewest. Family members reported experiencing effects that were perceived as both positive and negative., Conclusions: Spillover of illness onto family members encompasses a wide range of domains of health and well-being, extending beyond those included in many existing health-related quality of life measures. Outcomes measurement efforts should be expanded to adequately capture these health and well-being outcomes for analysis, to ensure that the benefits of interventions are accurately estimated and conclusions are valid.