Caregivers Of Adult Patients Research Articles

Resilience and related factors in caregivers of adult cancer patients: a systematic review

Background: This systematic review aimed to investigate resilience and its related factors in caregivers of adult patients with cancer. Materials and methods: A systematic search of online electronic databases including Scopus, PubMed, Web of Science, Iranmedex, and Scientific Information Database (SID) was performed using keywords extracted from Medical Subject Headings such as “Psychological Resilience”, “Caregiver”, and “Cancer” from the earliest to 6 June 2023. The quality of the studies included in this review was evaluated using the appraisal tool for cross-sectional studies (AXIS tool). Results: A total of 2735 caregivers of cancer patients participated in 15 studies. The majority of the studies found that caregivers of cancer patients had high levels of resilience. Factors related to the resilience of cancer patients’ caregivers included caregivers’ social support, caregivers’ quality of life, patients’ resilience, caregivers’ family function, patients’ performance, caregivers’ age, caregivers’ health status, caregivers’ self-esteem, caregivers post-traumatic growth, caregivers religious, caregivers hope, caregivers positive affect, patients age, patients social support, patients resilience support, patients quality of life, caregivers’ anxiety, caregivers’ depression, caregivers’ burden, caregivers level of education, caregivers financial problem, caregivers memory, caregivers negative affect, caregivers post-traumatic stress disorder, maternal distress, and patients post-traumatic stress disorder. Conclusion: Therefore, healthcare administrators and policymakers can enhance the resilience of caregivers and the quality of care they provide by instituting ongoing training initiatives focused on evaluating mental well-being and implementing coping strategies for managing stress and depression.

Assessing caregiver burden in advanced kidney disease: protocol for a systematic review of the measurement properties of instruments and tools

IntroductionCaregiver burden is a significant issue in the care of patients with advanced kidney disease. Its assessment is crucial for evaluating the needs of caregivers and for the development of...

The parents aren't alright, either: Commentary on Wilksch (2023).

Eating disorders (EDs) present high costs to the individual and society, and need for services far surpasses their availability. Caregivers are often on the "front lines" of managing their child's illness yet may have very little support to sustain them in this role. It is well-established that caregiver burden related to EDs is high, although most research has focused on caregivers of adult patients. Wilksch describes the need for additional attention to caregivers of children and adolescents with EDs, given the elevated psychological, interpersonal, and financial burden incurred on this segment of the population. In this commentary, we describe three major gaps in service delivery and research that may exacerbate caregiver stress: (1) limited exploration of "nontraditional" delivery modalities that could enhance access to care; (2) lack of research into viability of caregiver peer coaching/support models including respite resources; and (3) scarcity of accessible ED training for healthcare providers (particularly physicians) which increases length to receipt of competent care as families search for well-trained providers and/or languish on waitlists. We propose prioritizing additional research in these areas to help alleviate caregiver burden associated with pediatric EDs, and facilitate delivery of prompt, comprehensive, and competent care to support optimal prognosis.

Effect of early palliative care on caregivers of adult patients with chronic diseases: A systematic review and meta-analysis of randomized controlled trials

The aim of this research was to examine the effects of early palliative care on individuals who provide care for adult patients with chronic diseases. From the earliest date until November 1, 2022, the databases of Scopus, PubMed, Web of Science, Iranmedex, and Scientific Information Database were thoroughly searched using purpose-related keywords. To rate the caliber of randomized control trials and quasi-experimental research, the Joanna Briggs Institute (JBI) critical evaluation checklist was utilized. A total of 800 patients with chronic disease were included in five studies. This study demonstrated that early palliative care treatments had a similar impact on caregivers' quality of life (QoL) as routine care and delayed palliative care interventions (ES: -0.01, 95%CI: -0.20 to 0.17, Z=0.15, I2:0.0%, P=0.88). As compared to the normal care group, the early care group's caregivers' depression was modestly reduced by the intervention, but this difference was not statistically significant (ES: -0.06, 95%CI: -0.36 to 0.23, Z=0.43, I2:0.0%, P=0.67). Early palliative care reduced caregiver anxiety, however, the difference between the intervention group and the group receiving standard care was not statistically significant (ES: -0.25, 95%CI: -0.64 to 0.15, Z=1.23, I2:0.0%, P=0.22). Caregivers' burdens were reported based on three dimensions demand, stress, and objective. Results found the intervention caused a non-significant decrease in the demand dimension (WMD: -0.48, 95% CI: -1.13 to 0.17, Z=1.44, I2:0.0%, P=0.15) and a significant decrease in the stress dimension (WMD: -0.65, 95% CI: -1.26 to -0.04, Z=2.09, I2:0.0%, P=0.04), in the intervention group compared to the routine care. In contrast, the intervention did not affect the objective dimension (WMD: 0.30, 95%CI: -0.48 to 1.08, Z=0.76, I2:0.0%, P=0.45) in the intervention group than in routine care. Therefore, it is suggested that more interventional studies be conducted in this area in the future.

Third party disability of family members of adults with dysphagia.

Third-party disability (TPD) has been studied in multiple patients including those with aphasia and hearing loss. Only one study has been done in relation to caregivers of adults with dysphagia. Third-party disability has been analysed using the International Classification of Function and Disability (ICF) framework. This study, therefore, used the ICF model to explore TPD of caregivers of adults with dysphagia for the context of Johannesburg in South Africa. To describe how caregivers experience TPD when caring for adults with a dysphagia in Johannesburg. Data were collected from five primary adult caregivers, who were all family members, from government clinics in Johannesburg. This article reports the findings from the interviews that were analysed thematically using a top-down analysis approach. Caregivers experienced challenges related to TPD mostly related to difficulties of being able to do activities of daily living for themselves, their household chores and attending social engagements. The use of body structure and function from the ICF model was not overtly applicable to the caregiver population. A new visual representation has been suggested to highlight the key themes to augment the social and psychological changes as seen on the ICF framework and demonstrated the specific interaction that these factors had on one another. Third-party disability is present in caregivers of patients with dysphagia. Healthcare workers need to be aware of the impact that this can have when preparing home management strategies. This newly devised representation can assist in creating a locally relevant patient-centred care approach but requires future input. This article has provided greater insight into TPD in caregivers of adult patients with dysphagia in an urban African context. It has led to new information that can be used as an adjunct to the ICF model when understanding this phenomenon.

Quality of Life of Family Caregivers of Critically Ill Patients With Cancer Before and After Intensive Care Unit Admission Measured by EQ-5D 3-Level: A Longitudinal Prospective Cohort Study

ObjectivesAdmission to the Intensive Care Unit (ICU) is considered a distress journey with an increased demand and cost for informal caregiving. This study aimed to generate utility values through assessing the quality of life (QoL) of family caregivers using the EQ-5D-3L measure before and after ICU admission of their family members. MethodsA 1-year prospective cohort study (January 2017 to February 2018) was conducted at a comprehensive cancer center in Jordan. Caregivers of adult patients who were in the ICU for ≥ 24 hours were included. The QoL was assessed using the EQ-5D-3L instrument. Caregivers’ health profiles were described, and single summary index value for their health status were calculated before ICU admission and were compared with 1-week, 1-month, and 3-month utility index scores after ICU discharge. Predictors of the change of caregivers’ QoL were also reported. ResultsDuring the study period, 126 caregivers completed the QoL assessment at baseline. The mean age ± SD of the cohort was 55 years ± 14, and 52% were males. The mean utility scores ± SD were 0.70 ± 0.32, 0.73 ± 0.29, 0.71 ± 0.31, and 0.78 ± 0.31 at baseline, 1 week, 1 month, and 3 months after discharge, respectively. A significant relationship between the patient’s Acute Physiology and Chronic Health Evaluation (APACHE II) score and the change in caregiver’s utility score index after 3 months was reported. ConclusionsImprovement in caregivers’ QoL has been seen 3 months after ICU discharge. Patients’ APACHE II score at baseline is a predictor of the change of caregivers’ QoL 3 months after discharge.

Factors Associated with Burden in Caregivers of Patients with End-Stage Kidney Disease (A Systematic Review).

Background: Caring for a patient with end-stage kidney disease (ESKD) is highly stressful and can impact negatively on the physical and psychological well-being of caregivers. To accurately assess caregiver burden (CB), health care providers (HCPs) need to identify characteristics associated with an increase in CB. Aim: The aim of this review is to explore CB in caregivers of adult patients with ESKD and to identify characteristics associated with any increase in CB. Method: A comprehensive literature search was completed using five electronic databases. Medline, Embase, CINHAL, PsycINFO, and Scopus. The Joanna Briggs Institute checklist (JBI) was used to quality appraise full text papers included in the review. No time limit for the date of publication of studies was employed, to enable the inclusion of more extensive literature. Results: A total of 38 relevant studies from 18 countries were identified and included in the review. A variety of patient and caregiver factors can impact positively or negatively on CB, including socio-demographic factors of patients and caregivers, disease-related factors, situational and relational factors, environmental factors, and psychological factors. Conclusion: This review provides awareness to HCPs of the important factors associated with CB, when assessing or targeting interventions for caregivers experiencing burden.

Direct and Indirect Costs Among Caregivers of Patients With Major Depressive Disorder and Suicidal Ideation or Suicidal Attempt

Objective: To compare direct and indirect costs among caregivers of patients with major depressive disorder (MDD) and suicidal ideation and/or suicide attempts (MDSI) versus caregivers of patients with MDD alone versus caregivers of patients without MDD or suicidal ideation and/or suicide attempts (controls).Methods: Cohorts were based on caregivers of adult patients with MDSI, MDD alone, and controls. Patients were identified by Workpartners employer database ICD-9/ICD-10 codes (January 2010 to July 2019) and were spouses or domestic partners of employees (caregivers). Twenty controls and 20 MDD-alone caregivers were matched to each MDSI caregiver on sex, age, and index year. All caregiver-patient pairs had 6 months pre/postindex information and met additional inclusion/exclusion criteria. Patient and caregiver medical and prescription claims and caregiver absenteeism (payment/time) were analyzed. Direct costs (medical, prescription) and indirect costs (absence payments by benefit type) were analyzed using separate, 2-part stepwise regression models and controlling for demographics, job-related variables, region, index year, and Charlson Comorbidity Index score.Results: 570 MDSI caregiver-patient pairs and 11,400 matched MDD-alone and control pairs were identified. MDSI and MDD-alone caregivers had higher medical costs compared with controls ($5,131 and $4,548 versus $3,885, respectively; P < .0001). Prescription costs were highest among MDSI caregivers, followed by MDD-alone and control caregivers ($1,852, $1,425, and $1,005, respectively; P < .001). MDSI caregivers had the highest total indirect costs. MDSI patient medical and prescription costs were highest, followed by MDD-alone and control patients.Conclusion: MDSI caregivers had significantly greater direct and indirect costs compared with MDD-alone and non-MDD caregivers.

Interventions to Enhance Resilience Among Family Caregivers: A Systematic Review

Long-term caregiving can negatively impact caregivers’ physical and psychological well-being and are associated with increased morbidity and mortality among caregivers. A more positive caregiving experience is associated with increased coping skills and resilience. Caregiver-targeted interventions designed to promote caregivers’ resilience may lead to improved caregivers’ well-being, the quality of caregiving, and care recipients’ outcome. However, a comprehensive evaluation of effective interventions that enhance resilience among caregivers is lacking. Therefore, the purpose of this study is to critically evaluate existing training programs to inform clinical practice and future program design. A literature review was conducted to search available articles published before June 2018 in databases including PubMed, CINAHL, PsycINFO, and Scopus. Search strategies used index and keyword methods. The inclusion criteria were peer-reviewed, research studies published in English that evaluated an intervention primarily aimed to improve family caregivers of adult patients’ resilience or had a primary outcome of resilience. Seven studies fit the criteria identified. Six studies used psychosocial therapy and one used pharmacological therapy to promote caregivers’ resilience. Several effective resources were identified, such as counseling, self-help manuals, psychoeducation, cognitive behavioral therapies, and the use of an antidepressant. All studies reported positive improvements in caregivers’ outcomes and six studies reported caregivers had improved resilience after receiving interventions. However, most interventions require health professionals to train patients and caregivers for multiple sessions. Future studies should develop feasible, effective, and less labor-intensive interventions, such as self-help manuals, telehealth interventions, or interventions delivered during routine visits.

Pharmacotherapeutic follow-up form for caregivers of patients with refractory schizophrenia

Introduction: Schizophrenia is one of the most relevant mental disorders in public health, causing great distress for the patient and his/her family members. The persistence of symptoms characterizes refractoriness of the disease that is treated with clozapine considered the gold standard in treatment, but its adverse reactions can be as intense as the symptoms of the disorder. Objective: To develop a pharmacotherapeutic follow-up form for caregivers of adult patients with schizophrenia would refract from the use of clozapine. Methods: The search for the articles was carried out in the government databases and websites from November 15, 2018 to January 15, 2019, published from 2012. Result: Thirty-seven articles were found, excluding 20 articles, including in this review 17 articles, 2 books, 4 clinical protocols and 1 drug monograph. Conclusion: The proposal to develop the pharmacotherapeutic follow-up form is to identify adverse reactions that may influence the treatment of pharmacological treatment and reduce the unwanted effects of treatment as a consequence to improve the patient's quality of life.

Regret and unfinished business in parents bereaved by cancer: A mixed methods study

Background: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. Aim: The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief. Design: This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items. Setting/Participants: The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior. Results: Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p ⩽ 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business–related distress were associated with distress while caregiving and prolonged grief symptoms. Conclusion: Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.

Development of a National Caregiver Health Survey for Hematopoietic Stem Cell Transplant: Qualitative Study of Cognitive Interviews and Verbal Probing.

BackgroundRoadmap 1.0 is a mobile health app that was previously developed for caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT). Formative research targeted toward its end users (caregivers) can help inform app design and development, allowing additional components to be incorporated into the app, which can then be tested in a future randomized controlled trial.ObjectiveThis study aimed to create a methodologically rigorous national survey that would help inform the development of Roadmap 2.0.MethodsWe conducted a prospective, qualitative research study that took place between November 18, 2018, and February 7, 2019, in a blood and marrow transplant unit within a large academic medical institution in the midwestern part of the United States. Cognitive interviews, including think-aloud and verbal probing techniques, were conducted in 10 adult caregivers (≥18 years) of patients who had undergone HSCT.ResultsMost participants were female (9/10, 90%), white (9/10, 90%), married (9/10, 90%), employed at least part time (6/10, 60%), caregivers of adult patients (7/10, 70%), and had some college education (9/10, 90%) and an annual household income of $60,000 or higher (6/10, 60%). All but one interview was audio-recorded, with permission. Overall, participants were engaged in the cognitive interview process of the draft survey, which included 7 topics. The interviews highlighted areas wherein survey items could be further refined, such as offering more response choices (eg, “NA”) or clarifying the type of transplant (eg, autologous or allogeneic) or context of transplant care (eg, pre-HSCT, during HSCT, post-HSCT, inpatient, and outpatient). Apart from these findings, the items in demographics, caregiving experiences, technology, positive activities, and mood were generally interpreted as intended. On the basis of the transcript data and field notes by the interviewer, items within self-efficacy (Caregiver Self-Efficacy Scale) and coping (Brief Coping Orientation to Problems Experienced inventory) questionnaires generated more confusion among interviewer and participants, reflecting difficulties in interpreting the meaning of some survey items.ConclusionsThis study incorporated the four cognitive aspects of survey methodology that describe the question-answering process—(1) comprehension, (2) information retrieval, (3) judgment and decision making, and (4) responding—by using the think-aloud and probing techniques in cognitive interviews. We conclude that this methodologically rigorous process informed revisions and improved our final questionnaire design.International Registered Report Identifier (IRRID)RR2-10.2196/resprot.49188

Population-Based Profile of Mental Health and Support Service Need Among Family Caregivers of Adults With Cancer.

We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30. Support service needs comprised caregiving classes, service access, support groups, counseling, and respite care. Multivariable linear regression models were performed adjusting for sociodemographics and sampling weights. A total of 1,831 caregivers were included in the study, representing approximately 1.1 million cancer caregivers in the 18 US states, distributed with the following intensity: 122 (8.3%) caregivers reported care at high hours/long duration, 213 (13.1%) high hours/short duration, 329 (18.4%) low hours/long duration, and 910 (60.2%) low hours/short duration. Mean MUDs was 6 (SE, 0.5). The highest reported unmet service need was help with service access (48.4%). Higher caregiving intensity and support service need were associated with more MUDs ( P < .05), with a significant interaction ( P = .02) between caregiving intensity and unmet support service needs. High hour/long duration caregivers reporting any unmet needs had a mean of 15 versus 8 MUDs for those with no unmet needs. High-intensity cancer caregiving was associated with poor mental health, especially for those reporting support service needs. Developing strategies to optimize support service provision for high-intensity cancer caregivers is warranted.

Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT

Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC). A total of 130 dyads (260 subjects) composed of AYAs 14–20years old with cancer and their family decision maker (≥18years old) will be recruited from pediatric oncology programs at Akron Children's Hospital and St. Jude Children's Research Hospital. Dyads will be randomized to either the FACE-TC intervention or Treatment as Usual (TAU) control. FACE-TC intervention dyads will complete three 60-minute ACP sessions held at weekly intervals. Follow-up data will be collected at 3, 6, 12, and 18months post-intervention by a blinded research assistant (RA). The effects of FACE-TC on patient-family congruence in treatment preferences, quality of life (QOL), and advance directive completion will be analyzed. FACE-TC is an evidenced-based and patient-centered intervention that considers QOL and EOL care according to the AYA's representation of illness. The family is involved in the ACP process to facilitate shared decision making, increase understanding of the AYA's preferences, and make a commitment to honor the AYA's wishes.

Effects of caregiver burden on quality of life and coping strategies utilized by caregivers of adult patients with inflammatory bowel disease.

BackgroundWhile previous studies have evaluated caregivers’ quality of life (QOL), burnout, and stress amongst across a variety of chronic illnesses, few such studies have been related to inflammatory bowel disease (IBD).MethodsCaregivers accompanying adult patients with IBD at 6 tertiary centers were enrolled. They completed self-administered surveys related to QOL and burden, including the QOL scale, Zarit Burden Interview (ZBI), and Brief COPE.ResultsOf the 200 consecutive caregivers asked to participate, 162 (81.0%) enrolled and completed the survey. A total of 43.8% caregivers reported having a high level of burden as measured by the ZBI. Factors predictive of a high burden included female gender, younger age of caregiver, household income <$30,000, having more than one dependent in the household, caring for a patient with active disease and higher disease severity, and a personal history of psychiatric illness. Over one third of the caregivers reported a maladaptive coping pattern. The caregiver factors predictive of maladaptive coping skills included male gender, lack of involvement in a support group, a personal history of psychiatric illness, and living in a different household from the patient.ConclusionsA large proportion of caregivers of IBD patients experience a high level of caregiver burden and reduced QOL. Participation in religious/spiritual activities and support groups appeared to reduce perceived caregiver burden and improve QOL. This study suggests there is an unmet need to address the caregiver burden of adult IBD patients.

Perception of the quality of life of family caregivers of adults with cáncer.

Objective. To describe the perception of the quality of life of family caregivers of adult individuals with cancer. &#x0D; Methodology. Descriptive study conducted in 2008 with a convenience sample of 209 caregivers of adults with cancer who attended oncology units in Medellín, Colombia. The instrument proposed by Ferrell et al., was used to measure the quality of life of the family member caring for the patient, which evaluates quality of life through 37 items that integrate their meaning in the: physical (5 items), psychological (16 items), spiritual (9 items), and social (7 items) well-being. The evaluation of each item is conducted through a Likert-type scale from 1 to 4. Interpretation of the total score and by subscale is an inverse relationship between the score and the deterioration of the caregiver’s state. &#x0D; Results. The participants perceive as most affected the dimensions from the physical (83.2%), psychological (80.9%), and social well-being (75.6%) quality of life scale. The spiritual dimension was the least affected (9.1%). &#x0D; Conclusion. Caregivers of adult patients with cancer have a negative perception of their quality of life. Nursing should participate to support these caregivers

Sa1300 Effects of Caregiver Burden on Quality of Life and Coping Strategies Utilized by Caregivers of Adult Patients With Inflammatory Bowel Disease

Sa1300 Effects of Caregiver Burden on Quality of Life and Coping Strategies Utilized by Caregivers of Adult Patients With Inflammatory Bowel Disease

Parent self-efficacy for managing pain in seriously ill children and adolescents nearing end of life

Using data from a multi-site study of parent-child symptom reporting concordance, this secondary analysis explored the role of parent self-efficacy related to pain management for seriously ill school-age children and adolescents. In the initial study, 50 children and adolescents who were expected to survive 3 years or less were recruited along with their parent/primary caregiver. Parent self-report data were used in this secondary analysis to describe parent self-efficacy for managing their child's pain, caregiver strain, mood states, and perception of the child's pain; to explore relationships among these variables; and to determine predictors of greater self-efficacy. Parents expressed a wide range of self-efficacy levels (Chronic Pain Self-Efficacy Scale; possible range 10-100, mean 76.2, SD 14.7) and higher levels on average than reported previously by family caregivers of adult patients. Caregiver Strain Index scores were markedly high (possible range 0-13, mean 8.1, SD 3.8) and inversely correlated with self-efficacy (r = -0.44, p = 0.001). On the Profile of Mood States parents reported more negative moods (t = 4.0, p < 0.001) and less vigor (t = -5.0, p < 0.001) than adults in a normative sample, yet vigor rather than mood disturbance predicted self-efficacy. With the exception of child age, self-efficacy was not associated with demographics (child gender, ethnicity, household income, parent age, education, family size) or with the diagnostic groups (primarily cardiac and oncologic) comprising the sample. Younger child age, less caregiver strain, more parent vigor, and parent perception that child is without pain predicted more than half of the variance in parent self-efficacy (R2 = 0.51). Findings advance knowledge of parent self-efficacy in managing the pain of a child with life-threatening illness. Results can be used to design supportive interventions enhancing parents' caregiving roles during their child's last stages of life.