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Preparedness is defined as a caregiver’s readiness for the caregiving roles, such as fulfilling the physical and emotional requirements of the patient, planning care, and managing the stressors.1,2Preparedness consists of 2 domains: emotional and practical preparedness.3,4 Emotional preparedness covers coping with a broad range of emotions from burden in the caregiving process to the loss of the patient. Practical preparedness includes adapting to necessary changes in daily life, such as assuming the new household, financial, and other daily responsibilities. Both emotional and practical preparedness for the caregiving process may balance the negative impacts of caregiving.5 Studies have reported that the caregivers who felt prepared experienced fewer worries during caregiving.6,7 In addition, increasing the caregivers’ preparedness to care is associated with a lower burden.8,9 Scherbring10 reported that every 1-unit increase in the preparedness to care resulted in a decrease of approximately 17% in the caregiver’s burden. Considering its effect on caregiver burden, the preparedness to care is of critical importance for family members who care for patients in need of long-term support.2
Cancer patients need long-term care because of numerous symptoms, including pain, fatigue, sleep issues, depression, anxiety, and stress.11–13 The symptom burden results in the cancer patients encountering difficulties in their daily activities, such as eating, walking, and even communicating. Therefore, the dependence of cancer patients on family caregivers increases.14,15 Family caregivers have to put several efforts into supporting the daily requirements of patients, decrease their symptom burden, and endure the stress of having a loved one experiencing a life-threatening disease.7,16 The family caregivers have essential responsibilities, including symptom management, medication monitoring, transportation, care coordination, and emotional support.17,18 The family caregivers endeavoring to fulfill both familial and caregiver roles may face several problems associated with their own physical and psychological health, daily-life activities, work life, social activities, and recreation.19,20 The family caregivers may feel highly burdened during the illness period as they deal with several challenges associated with loss and death during the palliative care period.9,21 Usually, the caregivers experiencing these physical and psychosocial problems initially define caregiving as a daunting task.22 According to recent studies, the caregivers reported feeling heavily burdened and having poor preparedness to care.1,2 The lack of caregiver preparedness to provide complex care may increase their physical problems, such as lack of sleep and fatigue. These physical problems decrease their well-being and overall quality of life.6,8 In addition, when the physical and psychological well-being of the caregivers is reduced, the status of the patients also worsens.3 In particular, the patients with caregivers unprepared for care can experience higher symptom burden, anxiety, and stress due to inadequate symptom management and emotional support.3,22
To foster beneficial effects of the preparedness to care on caregivers and patients, several interventions are required for better management of the care process and to increase the level of caregiving preparedness.10 These interventions that are aimed at increasing the readiness among the caregivers are important during the illness period for both patients and caregivers.1,23 Interventions include educational, supportive, self-care, and psychoeducational programs conducted by a nurse-led or an interdisciplinary team.5,7,24 Although the educational, supportive, and self-care programs are named differently in studies, they are very similar in content.23,25,26 These interventions address the roles of caregivers, information about the disease and treatments, symptom management, prevention of infection, nutrition, and coping with stress.26,27
Psychoeducation is an evidence-based therapeutic intervention for caregivers that provides information and support to better understand and cope with illness.28 Psychoeducation for caregivers aims to promote psychological well-being, resolve existential issues, prepare for the ill relative’s death, and the grief process.5 Overall, the content of these educational, supportive, self-care, and psychoeducational interventions is intended to increase the preparedness of caregivers in alignment with certain theoretical frameworks. Studies usually use the theoretical framework of Andershed and Ternestedt29 for caregiving interventions for family members.5 This framework defines family caregivers’ roles in palliative caregiving and focuses on knowing, being, and doing. Knowing is essential for family caregivers and is linked with an awareness of the patient’s critical status and the roles of caregivers. Being is associated with the management of the caregiver’s own emotion as well as the patient’s. Doing consists of the practical aspects of caregiving. The overall aim of this theoretical framework is to promote preparedness for caregiving among family caregivers through interventions.29
To the best of our knowledge, the literature contains a few intervention studies evaluating the preparedness to care among caregivers.5,24,26 A systematic review investigating the effects of nursing interventions on family caregivers of end-of-life patients emphasized that interventions applied to caregivers have a significant effect on increasing preparedness to care.30 However, the effect of the interventions applied to caregivers and their preparedness to care is not clear due to some differences in the intervention content, duration, and sample characteristics. Future studies involving interventions for caregivers need to take into account content and duration of the intervention. It is essential to present interventions aimed at increasing the preparedness of caregivers from a holistic perspective.
This meta-analysis attempts to provide an overview of the effects of interventions on the preparedness of caregivers of cancer patients. The objectives of this meta-analysis were as follows: (1) to summarize the interventions applied to the caregivers of cancer patients on their preparedness to care, (2) to reveal the effects of these different interventions on the preparedness to care, and (3) to determine the methodological quality and evidence level of the included studies. The results of this meta-analysis provide evidence-based recommendations for the interventions on the preparedness to care aimed for caregivers of cancer patients.
Methods Study DesignA meta-analysis study design was adopted. This study was reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-analyses guidelines. The Participants, Intervention, Comparison, and Outcome (PICO) strategy was applied to formulate the research questions.31 The family caregivers of the cancer patients formed the participants (P) of the present meta-analysis. The interventions (I) included all the educational, supportive, self-care, and psychoeducational interventions, and all the studies applying or not applying the comparison (C) strategy. Preparedness to care was accepted as the outcome (O) variable. According to this PICO strategy, the formulated research questions were as follows: “Are the interventions applied to the family caregivers effective on the preparedness to care?” and “If effective, what is the level of effectiveness of these interventions on the caregivers’ preparedness to care?”
Search StrategyScienceDirect, Scopus, Cochrane Central Register of Controlled Trials, Web of Science, MEDLINE, and PubMed were searched for relevant studies published between 2000 and 2020 years. The search strategy involved using the following MeSH terms and keywords for all the databases: (1) “Caregivers” OR “Carers” OR “Family caregivers” OR “Spouse caregivers,” AND (2) “Oncology” OR “Cancer” OR “Neoplasm” OR “Neoplasia” OR “Tumors” OR “Malignancy,” AND (3) “Preparedness.” The initial literature review for the present meta-analysis was performed between July 2020 and August 2020, and the search strategy was repeated during September 2020 to October 2020 to update the meta-analysis before publication (Supplemental Digital Content 1, https://links.lww.com/CN/A39).
Inclusion and Exclusion CriteriaThe inclusion criteria were as follows: (1) studies involving caregivers of cancer patients of any diagnosis and at any stage of cancer; (2) studies conducted with adults older than 18 years; (3) studies that reported the caregivers’ preparedness to care with no limitations in the assessment scales; (4) studies that included intervention for the preparedness to care such as educational, supportive, self-care, and psychoeducation; (5) studies published in English and between the years 2000 and 2020; and (6) studies with an experimental design (including randomized controlled trials [RCTs], non-RCTs, and 1-group pretest-posttest design studies). The exclusion criteria were as follows: (1) studies designed as a review, case study, cross-sectional study, or qualitative study; (2) gray literature including studies published in non–peer-reviewed journals and those not controlled by commercial publishing organizations; (3) thesis, expert opinions, letters, and conference papers; and (4) unpublished studies. As the present review focused on the studies designed specifically for assessing the preparedness to care among the family caregivers of cancer patients, the scales that assessed quality of life, symptoms, or psychosocial status were not included.
Data ExtractionThe Endnote X8 reference-management software package was used to aggregate citations from all databases in this review. After discarding the duplicate studies, the titles and abstracts of all the studies were screened according to the inclusion criteria by 2 investigators. Subsequently, all the full-text articles were reviewed independently by the 2 authors according to the inclusion and exclusion criteria. The data from the included studies were collected into a previously prepared data collection form, which included the following titles: first author, publication date, country, study design, type of patients, inclusion criteria, sample size, age of caregivers, gender of caregivers, intervention type, duration of intervention, intervention strategies, control strategies, training providers, scales, assessment times, and results. Any discrepancies in the extracted data were resolved through discussion.
Quality AppraisalThe levels of evidence were classified according to the evidence level hierarchy adopted by the Joanna Briggs Institute,32,33 which includes 7 levels from 1 to 7. Evidence level 1 includes a systematic review or meta-analysis of all the relevant RCTs. Evidence level 2 presents the results from a well-designed RCT. Evidence level 3 comprises the findings of well-designed non-RCTs. Evidence level 4 considers case-control or cohort studies. Evidence level 5 includes a meta-analysis of descriptive and qualitative studies. Evidence level 6 contains the results of qualitative or descriptive studies. Finally, evidence level 7 includes reports and/or opinions of the experts. The present meta-analysis included studies at evidence levels 2, 3, and 4. The methodological quality was assessed using the Quality Assessment Tool for Quantitative Studies of the Effective Public Health Practice Project and is used to assess intervention studies, including RCTs, non-RCTs, and pretest-posttest studies. This tool contains 6 items, including the design, selection bias, blinding, confounders, method of data collection, and withdrawal from the study. Each item on the tool is scored as “strong,” “moderate,” or “weak.” The global rating for each study is obtained. The studies with no weak scores indicate a strong methodological quality, the studies with 1 weak score indicate a moderate methodological quality, and the studies with 2 or more weak scores indicate poor methodological quality.34,35 The quality of the included studies was evaluated independently by the 2 authors, and a consensus was achieved through discussion.
OutcomeThe effects of interventions on the preparedness to care of the caregivers of cancer patients were analyzed. All the included studies used the Preparedness for Caregiving Scale designed originally by Archbold et al.4 This scale assesses the caregiver’s perception of their preparedness to manage the roles and stresses of caregiving. The scale contains 8 items, each of which is scored from 0 to 4. The total score, obtained by summing the individual scores for all the items, ranges from 0 to 32. A high score indicates greater feelings of preparedness to care. This scale has acceptable reliability when administered to the caregivers of cancer patients, as evidenced by the Cronbach’s α coefficient of 0.72 reported previously.4 Henriksson et al36 reported a Cronbach’s α coefficient of 0.90 for this scale in a sample of caregivers of patients receiving palliative care.
Data SynthesisThe outcomes were analyzed using the Comprehensive Meta-Analysis software version 3.0 (Biostat, Englewood, New Jersey). The Q statistic and I2 statistics were used to evaluate heterogeneity. The I2 statistics values were categorized into no (0%-25%), low (25%-50%), moderate (50%-75%), and high (75%-100%) heterogeneity. A fixed-effects model was used to present the studies in the case of I2 ≤ 50% and P > .1; otherwise, a random-effects model was applied. In addition, the τ2 statistic was used to complement the assessment of heterogeneity and reveal the variance among the studies. The standardized mean difference (SMD) with a 95% confidence interval (CI) was used to report the effect size. Cohen’s d was adopted as the measure of the effect size for each study and was weighted by the sample size of that study. These d values were then averaged to calculate the overall effect size. The d value was converted to a z value. Moreover, forest plots were prepared to visualize the effect size and the SMD with 95% CI. Publication bias was examined visually using funnel plots. An asymmetrical funnel plot represents a potential publication bias. The Egger regression test was applied to test the asymmetrical funnel plot. Subgroup analysis and meta-regression were performed to assess any potential moderating variables. The subgroup analysis and meta-regression were performed according to the sample size, age, gender, duration of the intervention, the training providers, intervention setting, and the type of intervention.
Results Study SelectionA total of 1975 studies were obtained upon searching the databases, of which 1454 were duplicates. The titles and abstracts of the remaining studies were screened according to the inclusion and exclusion criteria, and 503 studies were excluded for not fulfilling the inclusion criteria. The full texts of the remaining 18 studies were reviewed according to the inclusion criteria, and 7 studies were excluded because these did not evaluate the caregivers’ preparedness to care. The remaining 11 studies were finally included in the present meta-analysis (Figure 1).
Figure 1: Study flow diagram.
Study CharacteristicsMost of the selected studies were from Australia (n = 5), whereas the remaining ones were conducted in the United States (n = 4), Sweden (n = 1), and the United Kingdom (n = 1). Four of the studies were designed as an RCT, whereas the remaining ones were designed as a 1-group pretest-posttest (n = 5) or non-RCT (n = 2). Approximately half of the studies (n = 6) included caregivers of cancer patients. Eight studies did not focus on a specific cancer type and included caregivers of patients with different cancer types, such as lung, breast, and colon cancer. Three studies focused on a specific cancer type, including 2 studies with caregivers of non–small-cell lung cancer patients26,37 and on1 study with caregivers of high-grade glioma patients.24 The sample size of the studies ranged from 31 enrolled23,24 to 354 enrolled,26 which further decreased (ranging between 22 and 344) because of attrition during the intervention (Table 1).
Table 1 - Characteristics of Reviewed Studies Study (Year) Country Study Design Type of Patients Inclusion Criteria Sample Age, Mean (SD), y Gender 1. Hudson et al28 (2005) Australia A randomized controlled trial Palliative care patients - Aged at least 18 yEight of the studies invited the caregivers to the clinic for the training process, whereas 3 studies involved home visits for the education of caregivers.23,28,40 Telephone interviews were conducted in 3 studies to identify the requirements of the caregivers or to decide a suitable date for the home visit.24,28,40 The training sessions were conducted in groups in 3 of the studies,5,38,39 whereas interventions in the remaining 8 studies were based on individual sessions. The duration of the interventions in the studies varied from 3 days39 to 12 weeks.24,37 Most of the studies (n = 5) included a psychoeducation program, whereas the other studies conducted an educational program (n = 3), a supportive program (n = 2), or self-care support for the caregivers (n = 1). The content of the interventions included symptom management, prevention of infection, maintenance of nutrition, and several emotional support topics for the patients, besides focusing on the important roles of caregivers in managing the care process, self-care of the caregivers, preparedness for their relative’s death, and support services to assist the caregivers. Certain interventions also emphasized stress management among the caregivers and, therefore, trained the caregivers in deep breathing, progressive muscle relaxation, and pleasant imagery.7,28 In the 6 studies that included a control group, the control groups were provided with standard care, including information regarding emergency visits, palliative care services, and standardized training (Table 2).
Table 2 - Intervention Strategies and Results of Reviewed Studies, Continued Study (Year) Intervention Duration of Intervention Intervention Strategies Control Strategies Training Providers Scales Assessment Times Results 1. Hudson et al28 (2005) A psychoeducation program 4 wk - The intervention consisted of 2 home visits and a phone call between the 2 visits.Abbreviation: PCS, Preparedness for Caregiving Scale.
Four of the studies had the evidence level of 2 (indicating a well-designed RCT), whereas 2 studies26,37 had the evidence level of 3 (representing well-designed non-RCTs). The remaining studies (n = 5) had an evidence level of 4 (representing cohort or case-control studies). The methodological quality of the included 11 studies was assessed, and the global rating of only 2 studies7,40 was evaluated as “strong,” whereas 5 studies were rated as “moderate.” The remaining 4 studies23–25,39 were rated as “weak” due to not limiting confounders, no blinding, and high dropout rates. In all included studies, a detailed explanation regarding the study was provided to the caregiver participants, which minimized selection bias. The assessment of the design of the studies revealed that 4 studies were of strong quality and 7 studies were of moderate quality. Whereas 8 of the selected studies reported that the confounding factors, such as age, gender, economic status, and duration of caregiving, which could affect the study outcomes, were limited, the remaining 3 studies did not provide any such information.23–25 Moreover, 2 of the studies involved blinding the data collectors,7,40 whereas no blinding was performed in the remaining 9 studies. In all the studies, data were collected and scored using scales that were valid and reliable. In terms of withdrawals and dropouts, 3 studies were evaluated as having a strong quality5,24,26 and 7 studies had a moderate quality. One study39 was determined to be of weak quality due to high rates of withdrawals and dropouts (Table 3).
Table 3 - The Evidence Level and Methodological Qualities of Studies Study (Year) Evidence Levela Methodological Qualityb Selection Bias Study Design Confounders Blinding Data Collection Method Withdrawals and Dropouts Global Rating 1. Hudson et al28 (2005) Level 2 Strong Strong Strong Weak Strong Moderate Moderate 2. Hudson et al38 (2009) Level 4 Strong Moderate Strong Weak Strong Moderate
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