A metasynthesis study of family caregivers' transition experiences caring for community-dwelling persons with advanced cancer at the end of life.

BACKGROUND: Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. AIMS: To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. DESIGN: Sandelowski and Barroso's methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. DATA SOURCES: Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. RESULTS: A total of 72 studies were included in the metasynthesis. Family caregivers experience a "life transition" whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. CONCLUSION: The findings provide a framework to guide the development of supportive programs and future research.

Conversion of Karnofsky Performance Status (KPS) and Eastern Cooperative Oncology Group Performance Status (ECOG) to Palliative Performance Scale (PPS), and the interchangeability of PPS and KPS in prognostic tools.

AIM: The aim of our study was to assess whether the Karnofsky Performance Status (KPS), the Eastern Cooperative Oncology Group (ECOG) Performance Status, and the Palliative Performance Scale (PPS) are interchangeable individually or within two prognostic tools: the Palliative Prognostic Score (PaP) and the Palliative Prognostic Index (PPI). METHODS: We performed a subset analysis of a prospective comparative study of functional and prognostic tools and clinician prediction of survival. We studied 955 patients with advanced life-limiting illnesses (cancer and noncancer) in the acute care and community settings. We used a descriptive statistical model and Spearman's rank correlation to assess these interchangeabilities. RESULTS: There is a direct positive linear relationship between the KPS and the PPS, and a direct negative linear relationship between these tools and the ECOG. Exchange of the KPS and the PPS was possible within the PaP and the PPI. CONCLUSION: The PPS and the KPS can be used interchangeably as functional tools and within prognostic tools. The ECOG is interchangeable with the PPS and the KPS, but this interchangeability is population-specific.

Interventions for Grieving and Bereaved Informal Caregivers: A Scoping Review of the Canadian Literature.

Background: The palliative approach to care is playing a larger role in the healthcare of older adults in Canada. Within (hospice) palliative care, informal caregivers play a crucial role as part of the interdisciplinary care team. Ensuring high quality palliative care includes providing effective grief and bereavement supports for them. Objective: This study aimed to identify current interventions addressing the grief and bereavement experiences of informal caregivers of geriatric patients in the Canadian (hospice) palliative/end-of-life care realm. Methods: A scoping review was undertaken using Arksey and O'Malley's framework. Seven electronic health and social science databases were searched. In addition, several stakeholder organizations' websites were reviewed to identify grey literature sources. Interventions that took place in Canada, were in English, and explored grief and bereavement supports for informal caregivers in an adult/geriatric (hospice) palliative care setting were included. After full text review, data were extracted and charted. Major themes were established following thematic content analysis. Results: Within a total of 18 sources, three themes were identified: (1) Classification of intervention, (2) Format of intervention, and (3) Intervention target. Method of delivery and type of intervention for grief and bereavement supports were aligned with the international literature. There is a need for large-scale evaluations of interventions and informal caregivers should be engaged in this process. Practitioners should be encouraged to direct bereavement interventions toward grieving caregivers, and to collaborate with them to improve access to these interventions. Policy makers should provide additional funding for grief interventions for informal caregivers. Conclusions: It is important to better understand the needs of informal caregivers experiencing grief and bereavement. Interdisciplinary collaborations will be necessary to develop, evaluate, and scale future interventions.

Support for Informal Caregivers in Canada: A Scoping Review from a Hospice and Palliative/End-of-Life Care Lens.

Objective: Informal caregivers (ICs) providing care for those at the end-of-life face physical, psycho-social, emotional, and/or financial challenges. However, there is a paucity of research towards the effectiveness of available interventions for this vulnerable population. The purpose of this scoping review was to investigate the availability and efficacy of interventions for ICs providing hospice and palliative/end-of-life care in Canada. Methods: Using Arksey and O'Malley's five step framework, a scoping review was conducted in the spring of 2020. Key electronic healthcare, social sciences, and grey literature databases were searched. Relevant publications from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis was conducted to summarize all key findings. Results: Initial searches yielded 145 results out of which 114 distinct articles were obtained. De-duplication and final screening yielded 28 sources which met inclusion criteria (22 peer-reviewed articles [78%] and 6 grey sources [22%]; 12 qualitative papers [42%]). Through thematic content analysis, four major themes were identified: [1] Direct financial support, [2] Direct psycho-sociospiritual support, [3] Indirect patient information provision/education, and [4] Indirect patient support. Conclusions: Healthcare practitioners should provide information on patient care and financial aid to ICs. Policies should aim to expand eligibility for and access to financial aid, in particular the Compassionate Care Benefits (CCB). Future research should focus on exploring other interventions, such as physical activities, to better support this vulnerable population. The results from this review will help inform and improve the well-being of ICs providing end-of-life care in Canada and beyond.

The Grief and Bereavement Experiences of Informal Caregivers: A Scoping Review of the North American Literature.

Background: Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers' experiences of grief and bereavement. Objective: To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods: Using Arksey and O'Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results: 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion: Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions: Understanding the nuances of informal caregivers' experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.

Informal Caregiving for People With Life-Limiting Illness: Exploring the Knowledge Gaps.

Background: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Methods: Scoping review of the literature following Arksey and O'Malley's framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Results: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. Conclusions: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.

Gaps in Hospice and Palliative Care Research: A Scoping Review of the North American Literature.

BACKGROUND: The demand for hospice and palliative care is growing as a result of the increase of an aging population, which is most prominent in North America. Despite the importance of the topic and an increase in hospice and palliative care utilization, there still are gaps in research and evidence within the field. AIM: To determine what gaps currently exist in hospice and palliative/end-of-life care research within the context of a North American setting to ensure that future directions are grounded in appropriate evidence. METHODS: Using Arksey and O'Malley's scoping review framework, six peer-reviewed, and four grey electronic literature databases in healthcare and the social sciences were searched in mid-2019. 111 full-text articles were retrieved, with 25 articles and reports meeting the inclusion criteria. Major themes were identified through thematic context analysis: (1) clinical, (2) system access to care, (3) research methodology, and (4) caregiving-related research gaps. RESULTS: Findings include strategies for engaging stakeholder organizations and funding agencies, implications for other stakeholder groups such as clinicians and researchers, and highlight implications for policy (e.g., national framework discussion) and practice (e.g., healthcare provider education and training and public awareness). CONCLUSION: Reviewing and addressing targeted research gaps is essential to inform future directions in Canada and beyond.

Screening and Initiating Supportive Care in Patients With Heart Failure.

Background: Patients with heart failure (HF) experience a major symptom burden and an overall reduction of quality of life. However, supportive care (SC) remains an under-utilized resource for these patients. Among the many existing barriers to integrating SC into routine care, identifying patients with SC needs remains challenging. The Kansas City Cardiomyopathy Questionnaire (KCCQ) is an important predictor of SC needs in patients with HF. Methods and Results: We used the shortened version KCCQ-12 as a screening tool for SC need in our ambulatory HF patient population using a KCCQ-12 summary score of <29 as the cut-off. Of the 456 patients who completed the KCCQ-12, 41 (9%) were predicted to have SC needs. Demographics, medical history, biochemical parameters, echocardiographic assessment and medical treatment were similar between the two groups of patients. However, patients with KCCQ-12 <29 were more symptomatic based on both New York Heart Association (NYHA) classification and American Heart Association (AHA) staging with a higher prevalence of depression. We established a multidisciplinary SC clinic and the profile and outcomes of patients with SC needs that were referred and followed at our SC clinic were also evaluated. Twenty-three patients were referred to our SC clinic: 2 died before being seen, 1 refused SC and 20 received SC. Of these 20 patients, 11 died and 9 are currently being followed. Median survival after starting the SC clinic is 3 months. In the original SC cohort of 23, 17 patients had available KCCQ-12 summary scores. However, only 6 out of 17 (35%) had KCCQ-12 scores <29, indicating the need for additional assessment tools in this patient population. Conclusions: The magnitude of unmet supportive care needs in patients with HF is significant. While the KCCQ-12 questionnaire is a useful tool to identify patients with SC, serial clinical evaluation, establishment of a SC clinic and prompt referral are essential for patients needing supportive care.

The role of antibiotics in the management of infection-related symptoms in advanced cancer patients.

UNLABELLED: We prospectively evaluated the effect of antibiotic treatment on infection-related symptoms in patients with advanced cancer, in addition to assessing infection characteristics. METHODS: A questionnaire was completed for enrolled patients using a personal digital assistant. Pre-antibiotic and post-antibiotic treatment Edmonton Symptom Assessment Scale (ESAS) scores were evaluated. Patient and the patient's physician identified infection-related symptoms experienced by the patient, which were documented under the "other" category on the ESAS. Pre-antibiotic and post-antibiotic scores of the patient and physician for the identified infection-related symptoms were evaluated. RESULTS: Twenty-six patients on a tertiary palliative care unit with 31 episodes of infection were included for analysis. Patients' pre- and post-antibiotic ESAS scores revealed a small improvement in all variables except anxiety. Patient assessment of symptoms related to infection showed a small improvement in all symptoms, with dsyuria being statistically significant. Physician assessment revealed a slight improvement for all the symptoms, although only cough was statistically significant. A general comparative physician assessment of patient outcome following antibiotic treatment suggested symptom improvement in 48.4% of patients. However, 50% of patients died within a week of antibiotic discontinuation. CONCLUSIONS: Antibiotic treatment appears to offer a mild improvement in infection-related symptoms. Patients reported the greatest improvement in dysuria, and physicians, in cough. Despite this symptomatic improvement, one quarter of the patients died within one week of antibiotic administration. Further comparative studies to evaluate symptomatic benefit, patient burden, and cost/benefit of antibiotic therapy in the treatment of infections in advanced cancer patients are required.