The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review

ObjectiveThe purpose of this study is to explore the evidence surrounding educational videos for patients and family caregivers in hospice and palliative care. We ask three research questions: 1. What is the evidence for video interventions? 2. What is the quality of the evidence behind video interventions? 3. What are the outcomes of video interventions?MethodsThe study is a systematic review, following Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) guidelines. Researchers systematically searched five databases for experimental and observational studies on the evidence supporting video education for hospice and palliative care patients and caregivers, published in 1969–2019.ResultsThe review identified 31 relevant articles with moderate-high quality of evidence. Most studies were experimental (74 %), came from the United States (84 %) and had a mean sample size of 139 participants. Studies showed that video interventions positively affect preferences of care and advance care planning, provide emotional support, and serve as decision and information aids.ConclusionA strong body of evidence has emerged for video education interventions in hospice and palliative care. Additional research assessing video interventions’ impact on clinical outcomes is needed.Practice implicationsVideos are a promising tool for patient and family education in hospice and palliative care.     

Effects of eHealth for patients and informal caregivers confronted with cancer: A meta-review

BackgroundeHealth can be defined as information provision about illness or health care and/or support for patients and/or informal caregivers, using the computer or related technologies. eHealth interventions are increasingly being used in cancer care, e.g. to support patients and informal caregivers in managing symptoms and problems in daily life.ObjectivesTo synthesize evidence from systematic reviews on the effects of eHealth for cancer patients or their informal caregivers.Materials and MethodsA systematic meta-review, in the sense of a systematic review of reviews, was conducted. Searches were performed in PubMed, Embase, CINAHL, PsycINFO, and the Cochrane Library. All steps in the review process were either performed by two reviewers independently or checked by a second reviewer. Disagreements were resolved by consensus.ResultsTen systematic reviews were included. All reviews focused on the effects of eHealth for patients and none on effects for informal caregivers. Except for one review of high methodological quality, all reviews were of moderate methodological quality. Evidence was found for effects on perceived support, knowledge levels, and information competence of cancer patients. Indications of evidence were found for health status and healthcare participation. Findings were inconsistent for outcomes related to decision-making, psychological wellbeing, depression and anxiety, and quality of life. No evidence was found for effects on physical and functional wellbeing.ConclusionThere is evidence for positive effects of eHealth on perceived support, knowledge, and information competence of cancer patients. For effects on other outcomes in cancer patients, findings are mainly inconsistent or lacking. This meta-review did not find relevant reviews focusing on or including the effects of eHealth on informal caregivers, which seems a rather unexplored area.     

Living with mesothelioma: A systematic review of patient and caregiver psychosocial support needs

ObjectivePractice guidelines emphasize the importance of investigating psychosocial distress in mesothelioma patients and family caregivers. We aimed to synthesize research on the psychosocial support needs of mesothelioma patients and their family caregivers.MethodsWe conducted a systematic review with a narrative synthesis and quality assessment. The review process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.ResultsMEDLINE, EMBASE, Scopus, PsychArticles, and PsycINFO were searched until December 2020 and 37 studies in English met inclusion criteria. Most (n = 24) included mesothelioma patients as a very small proportion of their cancer samples. A narrative synthesis was conducted on the 13 studies including only mesothelioma patients (n = 297) and/or caregivers (n = 82). Patients and caregivers want improvements in the diagnosis delivery and access to palliative care. Patients want emotional support, patient-centered treatment, improved information about illness progression and death, and to meet others with mesothelioma. Caregivers want one-on-one practical and emotional support. Study quality varied.ConclusionsFew studies focus on the psychosocial support needs relevant to mesothelioma. Mesothelioma patients and family caregivers highlight targeted psychosocial care as an unmet need.Practice ImplicationsEfforts are required to design and test psychosocial interventions for this vulnerable and overlooked group.Protocol RegistrationPROSPERO (registration number CRD42020167852).     

Collective caregivers: A novel examination of health literacy management approaches

ObjectiveHealth literacy and communication skills are necessary for family caregivers who often work in pairs, known as collective caregiving. Health literacy management is a relational process where communication between caregivers can be a barrier or pathway to improving or co-creating health literacy. The purpose of this study was to examine how collective caregivers manage health literacy.MethodsSemi-structured interviews were conducted separately for 42 caregiving pairs (n = 84). The interview guide was developed using a cancer caregiver health literacy framework. Caregiving pairs were placed into one of three collective caregiving communication patterns (absolute concordant, semi-concordant, absolute discordant). Interviews were audio-recorded, transcribed, and a thematic analysis was performed by independent coders.ResultsThe analysis revealed three different health literacy management approaches: a defined approach where caregiver roles were clearly designated (absolute concordant pairs); a contrasting approach where one caregiver was the health literacy expert (semi-concordant pairs); an independent approach characterized by individual information seeking, processing, and patient/provider engagement (absolute discordant pairs).ConclusionsHealth literacy support should address aspects of the family system such as caregiver-caregiver communication which influence variance in health literacy management.Practice implicationsOur study can inform provider communication and healthcare interventions aimed at supporting health literacy for caregivers.     

Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals

ObjectiveMost patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions.MethodsGoogle searches were performed using lay search strings, to imitate how a cancer caregiver may locate information. Relevant webpages were included if they were directed at caregivers and from a reputable health organisation. Qualitative content analyses were performed on the included webpages.Results22 webpages were included and 8 were directed at caregivers of cancer patients. Six key categories of information were identified: preparing for consultations, helping during consultations, advocating for the patient, decision-making, communicating in hospital settings, and communicating with family and friends.ConclusionA range of online resources were found to guide family caregivers, particularly cancer caregivers, on involvement in consultations. However, few provided information to caregivers on complex situations such as treatment decision-making, advocating for patient’s needs, and communicating in a hospital setting.Practice implicationsClinicians can actively refer family caregivers to online resources that support caregiver communication in medical settings.     

‘You have a swelling’: The language of cancer diagnosis and implications for cancer management in Kenya

ObjectiveTo examine the ramifications of language as a vehicle of communication in the Kenyan healthcare system.Methods(1) A review of literature search on language access and health care in Kenya, using Scopus, Web of Science, Ebscohost, ProQuest and Google Scholar electronic databases. (2) Two illustrative case studies from a Nairobi based qualitative research project on family cancer caregivers’ experiences.ResultsEvidence from the case studies shows that language barriers may hinder understanding of cancer diagnoses and consequently, the nature of interventions sought by family members as informal caregivers of cancer patients.ConclusionFindings demonstrate the significance of language in understanding cancer diagnosis as a basis for treatment seeking behaviour and specifically in light of the critical role played by informal caregivers in under resourced health care contexts.Practice implications(1) The assumption that English and Swahili are adequate in communication in Kenyan health care contexts ought to be reviewed. (2) Further research and assessment of language needs as a basis for training of language interpreters in the Kenyan health care system is a necessity.     

A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise?

ObjectiveSocial support interventions for caregivers of persons with dementia (PwD) are important because informal carers often rely on their social networks for support. This systematic review synthesises findings from research on social support interventions, and examines their methodological quality and effectiveness on caregiver social support and well-being variables.MethodsA systematic literature search utilised five databases. Papers were selected when the primary aim of the intervention was to improve social support. Quality of papers was assessed by the Level of Evidence grade and the criteria list from the Cochrane Back Review Group.Results39 papers were identified and classified into 4 social support intervention categories: befriending and peer support, family support and social network interventions, support groups, and remote interventions using the internet or telephone. Content, intensity, uptake, effectiveness and quality of interventions varied widely. In general, the level of evidence was low. Most studies measured effect on well-being variables, while few examined social support outcomes. Multi-component social support interventions were most effective. Evidence suggested, also a caregiver benefit from remote interventions. Generally, results were inconsistent; some papers demonstrated beneficial results, while others demonstrated no improvement on social support and well-being variables. Social support outcomes were more positively evaluated when qualitative outcome measures rather than quantitative measures were used.ConclusionsAlthough multi-component social support interventionsmay improve caregiver well-being, there is insufficient evidence to conclude whether a change in social support is the underlying mediating factor. The inclusion, validation and operationalization of caregiver social support measures deserve more attention.     

Hope against hope: exploring the hopes and challenges of rural female caregivers of persons with advanced cancer

Background

This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges.

Methods

Twenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi’s (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled ‘hope against hope.’

Results

The journal entries highlighted: the caregivers’ hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and ‘hope against hope’ describes how hope persists even when there is no hope for a cure.

Conclusions

This research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers.

     

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

ObjectiveTo examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience.MethodsNationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed.ResultsHealth professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers’ satisfaction with own health.ConclusionCaregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it.Practice implicationsBuilding health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.     

Decision-making support among racial and ethnic minorities diagnosed with breast or prostate cancer: A systematic review of the literature

ObjectiveTo describe the types of decision-making support interventions offered to racial and ethnic minority adults diagnosed with breast or prostate cancer and to draw any associations between these interventions and patient-reported quality of life (QoL) outcomes.MethodsWe conducted literature searches in five bibliographic databases. Studies were screened through independent review and assessed for quality. Results were analyzed using inductive qualitative methods to determine thematic commonalities and synthesized in narrative form.ResultsSearches across five databases yielded 2496 records, which were screened by title/abstract and full-text to identify 10 studies meeting inclusion criteria. The use of decision aids (DAs), trained personnel, delivery models and frameworks, and educational materials were notable decision-making support interventions. Analysis revealed six thematic areas: 1) Personalized reports; 2) Effective communication; 3) Involvement in decision-making; 4) Health literacy; 5) Social support; and 6) Feasibility in clinical setting.ConclusionEvidence suggests decision-making support interventions are associated with positive outcomes of racial and ethnic minorities with patient-reported factors like improved patient engagement, less decisional regret, higher satisfaction, improved communication, awareness of health literacy and cultural competence.Practice implicationsFuture decision-making interventions for racial and ethnic minority cancer patients should focus on social determinants of health, social support systems, and clinical outcomes like QoL and survival.     

What are we doing to support informal caregivers? A scoping review of caregiver education programs in cancer care

ObjectivesThe cancer system is experiencing a rise in cancer prevalence, a workforce shortage, and is resource-stretched. In this environment, informal caregivers (unpaid family caregivers of cancer patients) are required to take on expanded care roles and experience the debilitating effects of caregiver burden. Education programs are increasingly being developed to support caregivers. The aim of this review is to summarize what is known about these programs.MethodsA scoping review was conducted from May 2019 to January 2020. The literature search yielded 34,906 articles.Results119 articles were included, and ninety-two (77%) were focused on in-person psychoeducational programs.ConclusionMost caregiver programs have a unidimensional focus on psychoeducational training, demonstrating a need for more comprehensive programming to address the full spectrum of caregiver needs.Practice implicationsClinicians and educators must collaborate to create accessible, equitable education programs that comprehensibly address the needs of unpaid family caregivers beyond addressing psychological aspects of cancer care. This will ensure that a broader range of patients and caregivers are equipped with the knowledge and skills needed to cope with a cancer diagnosis, navigate the health system and to maintain their quality of life.     

Self-management support programs for persons with Parkinson’s disease: An integrative review

ObjectiveTo identify the characteristics of self-management programs for persons with Parkinson’s disease and the evidence for their effectiveness.MethodsAn integrative literature review was conducted. Studies describing the provision or outcomes of self-management interventions for persons with Parkinson’s disease and published in English were included. Two reviewers independently screened and evaluated articles. Interventions were described and compared, and evidence was presented using The Traffic Lighting system.ResultsEighteen interventions were identified, representing a variety of group- and individual-based interventions that differed in structure, components, and outcomes. Notably, 89% were designed specifically for persons with Parkinson’s disease and 39% combined self-management support with other therapies. Evidence to support specific self-management programs for persons with Parkinson’s disease was limited. However, a moderate quality systematic review and a good quality RCT supported self-management for improving specific domains of quality of life.ConclusionsA variety of interventions have been designed to support self-management by persons with Parkinson’s disease. More research is needed to identify key active ingredients and determine which programs are most effective.Practice implicationsSelf-management programs embedded within rehabilitation are promising. Clinicians should ensure programs include goal setting and problem solving and consider the inclusion of caregivers and peer support.     

Nurse-led health coaching programme to improve hospital-to-home transitional care for stroke survivors: A randomised controlled trial

ObjectiveTo evaluate the effects of a nurse-led health coaching programme for stroke survivors and family caregivers in hospital-to-home transition care.MethodsA total of 140 dyads of stroke survivors and their family caregivers were recruited and randomly assigned to either the intervention group (received a 12-week nurse-led health coaching programme) or the usual care group. The primary outcome was self-efficacy, and secondary outcomes were quality of life (QoL), stroke-related knowledge, and caregiver-related burden. The outcomes were measured at baseline, 12 and 24 weeks.ResultsStroke survivors in the intervention group demonstrated a significant improvement in self-efficacy at 12 weeks (x?: 24.9, 95%CI: 20.2–29.6, p < 0.001) and at 24 weeks (x?: 23.9, 95%CI: 19.2–28.6, p < 0.001) compared to the usual care group. Findings also demonstrated significant increases in stroke survivors’ QoL, stroke-related knowledge, and reduction in unplanned hospital readmissions and caregiver-related burden. There were no statistically significant changes in other outcomes between the two groups.ConclusionThe nurse-led health coaching programme improved health outcomes for both stroke survivors and their caregivers.Practice ImpactionFindings from the study suggest that nurse-led health coaching should be incorporated into routine practice in hospital-to-home transitional care for stroke survivors and their caregivers.     

The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis

Objective

To evaluate the effectiveness of psychosocial interventions for family caregivers on their psychosocial and physical wellbeing, quality of life, and the use of healthcare resources by stroke survivors.

Methods

Electronic English and Chinese bibliographic databases were searched (inception to January 2012) for clinical trials. Two reviewers independently selected and appraised study quality. When possible, data from randomized controlled trials (RCTs) were statistically pooled. Otherwise, a narrative summary was used.

Results

Eighteen studies (psychoeducation and social support group) were included. Pooled analysis of two individual psychoeducation programs showed a small effect on improving family functioning (SMD: −0.12; 95% CI: −0.23 to −0.01; p = 0.03). Caregivers receiving psychoeducation that aimed at equipping caregivers with the skills of problem-solving, caregiving, and stress-coping appeared to have a more positive influence on the caregivers’ psychosocial wellbeing and a reduced use of healthcare resources by stroke survivors.

Conclusion

Evidence on the effects of psychosocial interventions was limited. More RCTs of multifaceted psychoeducation programs are needed to further examine the optimal dose and format.

Practical implications

To support caregivers across the stroke trajectory, the core skills of problem-solving and stress-coping should be included in the psychosocial interventions.     

Oncology team members' perceptions of a virtual navigation tool for cancer patients

ObjectivesThe Internet has become an important source of health information for patients and health care providers (HCPs) alike. Whereas studies have begun to document the effects of the internet on health behaviors and outcomes, surprisingly few studies have explored HCPs’ perceptions of the internet as a key resource accessed by patients. However, as HCPs are seen as pivotal in guiding patients toward these resources, it is timely to study their perceptions. Therefore, the present inquiry explores HCPs’ views of a recently developed high quality virtual navigation tool called the Oncology Interactive Navigator? (OIN).DesignUsing a qualitative approach, in-depth interviews were conducted with 16 members of a multidisciplinary colorectal oncology team and volunteers at a large Cancer Centre in Montreal, Quebec, Canada.ResultsContent analysis revealed emerging themes centering on key benefits including: perceptions of a highly accessible, comprehensive high quality repository of cancer information; a means to further enhance HCP-patient communication and trust; and a significant catalyst to patient–family communication and support. Perceived drawbacks included patient (e.g., socio-demographic profile) and system's (e.g., professional roles and time constraints) characteristics that may limit OIN? full implementation and uptake.ConclusionsThe findings underscore the relevance of virtual navigation tools to ensure optimal person-centred care in cancer. Findings also suggest how virtual tools such as the OIN? can best be used in practice as well as they guide strategies to adopt to optimize implementation of similar innovations in health care.     

Challenges and approaches to involving family caregivers in primary care

ObjectiveOlder adults are commonly accompanied to routine medical visits. This study identifies challenges and explores approaches to managing patient-family interactions in primary care.MethodsSemi-structured interviews were conducted with primary care clinicians and staff (N = 30) as well as older adult patients and family caregivers (N = 40). Interviews were analyzed using content analysis.ResultsThree major challenges to patient-family interactions were identified: navigating patient autonomy and family motivation to participate; adjudicating patient-family disagreements; and minimizing obtrusive behaviors by caregivers. Three approaches to managing patient-family interactions were identified. Collaborating involved non-judgmental listening, consensus-building, and validation of different perspectives. Dividing involved separating the patient and family member to elicit confidential information from one member of the dyad. Focusing involved re-directing the conversation to either the patient or family member while minimizing input from the other. Approaches varied by patients’ cognitive status and overall health condition. In general, patients and caregivers expressed the most positive attitudes toward collaborating and patient-directed focusing approaches.ConclusionPrimary care clinicians use varied approaches to managing their interactions with patient-family dyads. Patients and caregivers generally prefer those approaches that involve collaborative rather than individual discussions.Practice implicationsFindings suggest the potential for the development of communication-focused interventions to promote positive clinician-patient-family interactions.     

Self-reported physical and mental health of older adults: the roles of caregiving and resources

Objectives

This study examined factors associated with self-reported physical and mental health, focusing on caregiving status and the availability of social supports and financial resources.

Methods

Two bivariate analyses were performed to examine the sociodemographic characteristics as well as perceived health outcomes among caregiving and non-caregiving participants. Two-equation probit models were used to determine independent predictors of self-reported physical and mental health, using data from 1071 community-based adults (≥60 years). An additional bivariate analysis was conducted to investigate the characteristics of caregivers who reported better physical health.

Results

Approximately 17% (n = 183) of respondents reported being caregivers, and those in caregiving roles tended to be ethnic minorities, married, and have telephone communication with family or friends on a daily basis. Better physical and mental health outcomes were common for caregivers and non-caregivers who reported having more resources (e.g., higher income, better preparedness for future financial need, higher satisfaction with transportation and housing, and no limitation of usual daily activities). However, sociodemographic and social support factors were not significantly associated with physical and mental health among caregivers, unlike their non-caregiver counterparts. In the probit model, caregivers were more likely to be physically healthy compared to non-caregivers (Coefficient = 0.34; p-value = 0.031). Compared with healthy non-caregivers (n = 631), healthy caregivers (n = 141) tended to be ethnic minorities, married, and have telephone communication with family or friends on a daily basis.

Conclusions

Findings suggest that preparing resources and maintaining strong social support systems may foster health status among older family caregivers.