Self-perceived Burden Research Articles

Caregiving responsibilities and burden among older people by HIV status and other determinants in Uganda

Older caregivers have major caregiving responsibilities in countries severely affected by the HIV epidemic, but little is known about their own health and well-being. We conducted this study to assess the association of caregiving responsibilities and self-perceived burden with caregivers' health, HIV status, background characteristics and care-receiving among older people in South Western Uganda. Men and women aged 50 years and older were recruited from existing cohort studies and clinic registers and interviewed at home. Health was measured through a composite score of health in eight domains, anthropometry and handgrip strength. Summary measures of caregiving responsibilities and self-reported burden were used to analyse the main associations. There were 510 participants, including 198 living with HIV. Four fifths of women and 66% of men were caregivers. Older respondents with no care responsibility had poorer scores on all health indicators (self-reported health score, body mass index and grip strength). Having a caregiving responsibility was not associated with poorer health status or quality of life. Notably, HIV-infected people, whether on antiretroviral treatment (ART) or not, had similar caregiving responsibilities and health status as others. The self-reported burden associated with caregiving was significantly associated with a poorer health score. One third of female caregivers were the single adult in the household with larger caregiving responsibilities. Many of these women are in the poorest wealth quartile of the households in the study and are therefore more likely to need assistance. Physical and financial supports were received by 70% and 63%, respectively. Those with larger caregiving responsibilities more frequently received support. Caregiving responsibilities were associated with better health status, greater satisfaction and quality of life. Older HIV-infected people, whether on ART or not, had similar caregiving responsibilities and self-reported health status as other older people.

Clinical research in influencing factors of self-perceived burden among patients with cerebral infarction

Objective To explore the influencing factors of self-perceived burden(SPB) among patients with cerebral infarction.Methods A total of 108 patients were included in the study,they were investigated by a self-designed demographic questionnaire and Self-Perceived Burden Scale(SPBS).Chisquare analysis,t test and multiple regression analysis were used to explore the influencing factors of SPB.Results The SPB of patients with cerebral infarction was (36.72±4.23) points.Self-care ability,hemiple-gia,language barriers and times of hospitslization were the influencing factors of SPB according to the mul-tiple regression analysis.Conclusions The patients with cerebral infarction have obvious SPB,which is influenced by multiple factors.Nurses should take proper measures to alleviate the patients' SPB. Key words: Self-perceived burden; Cerebral infarction; Influencing factors

Chronic pain and the interpersonal theory of suicide.

Chronic pain is a known risk factor for suicide. To date, however, few studies of people with chronic pain have tested specific predictions about suicidal ideation that are derived from theory. The interpersonal theory of suicide proposes that the psychological constructs of thwarted belongingness and perceived burdensomeness are unique and independent precursors to suicidal ideation. We tested this hypothesis in a clinical sample of patients with chronic pain. A total of 303 patients of a chronic pain rehabilitation program completed measures of pain severity, duration, and disability; cognitive-affective measures of depression and catastrophizing; and interpersonal measures of relationship distress and self-perceived burden to others. The latter measures were included as indices of the belongingness and burdensomeness constructs. Participants also rated two items pertaining to suicidal ideation. In a multiple regression analysis, both distress in interpersonal relations (β = 0.12, p = .037) and self-perceived burden to others (β = 0.25, p < .001) were significant predictors of suicidal ideation, even after adjusting statistically for demographic characteristics, pain severity and duration, functional limitations, catastrophizing, and depression. These findings suggest that the interpersonal theory is relevant to understanding elevated rates of suicidal ideation among people with chronic pain, and may have broader applicability to other populations with chronic illness or disability.

Effectiveness of occupational therapy in Parkinson’s disease: study protocol for a randomized controlled trial

BackgroundOccupational therapists may have an added value in the care of patients with Parkinson’s disease whose daily functioning is compromised, as well as for their immediate caregivers. Evidence for this added value is inconclusive due to a lack of rigorous studies. The aim of this trial is to evaluate the (cost) effectiveness of occupational therapy in improving daily functioning of patients with Parkinson’s disease.Methods/DesignA multicenter, assessor-blinded, two-armed randomized controlled clinical trial will be conducted, with evaluations at three and six months. One hundred ninety-two home-dwelling patients with Parkinson’s disease and with an occupational therapy indication will be assigned to the experimental group or to the control group (2:1). Patients and their caregivers in the experimental group will receive ten weeks of home-based occupational therapy according to recent Dutch guidelines. The intervention will be delivered by occupational therapists who have been specifically trained to treat patients according to these guidelines. Participants in the control group will not receive occupational therapy during the study period. The primary outcome for the patient is self-perceived daily functioning at three months, assessed with the Canadian Occupational Performance Measure. Secondary patient-related outcomes include: objective performance of daily activities, self-perceived satisfaction with performance in daily activities, participation, impact of fatigue, proactive coping skills, health-related quality of life, overall quality of life, health-related costs, and effectiveness at six months. All outcomes at the caregiver level will be secondary and will include self-perceived burden of care, objective burden of care, proactive coping skills, overall quality of life, and care-related costs. Effectiveness will be evaluated using a covariance analysis of the difference in outcome at three months. An economic evaluation from a societal perspective will be conducted, as well as a process evaluation.DiscussionThis is the first large-scale trial specifically evaluating occupational therapy in Parkinson’s disease. It is expected to generate important new information about the possible added value of occupational therapy on daily functioning of patients with Parkinson’s disease.Trial registrationClinicaltrials.gov: NCT01336127.

Qualitative study on the self-perceived burden of patients receiving continuous ambulatory peritoneal dialysis at home

Objective To investigate the reality of self-perceived burden (SPB) of patients receiving continuous ambulatory peritoneal Dialysis (CAPD) at home.Methods Semi structured interviews were conducted on 12 CAPD patients,who were chosen by purposive sampling from May 4 to 24,2012 in one peritoneal dialysis center of Chengdu.And data was analyzed by content analysis method.Results Two themes appeared alternately in CAPD patients' life experience:Emotional shackles-disease as a drag on the family,loss of self-worth,dark clouds over the family,and hopelessness; Search and struggle-giving oneself the power to survive,looking for emotional outlet,and facing to the present situation.Conclusions The SPB of CAPD patients were relatively complicated.Medical staff should not only focus on patients' physical health,but also mental health and social function,in order to improve patients' life quality. Key words: Peritoneal dialysis,continuous ambulatory; Qualitative research ; Self-perceived burden

Self-perceived burden of childcare on mother-substitutes of children of migrant women

Official publication of the College of Community Physicians of Sri Lanka and was established in 1995. Full text articles available.Journal of the College of Community Physicians of Sri Lanka (JCCPSL) has been recognised by the International Committee of Medical Journal Editors (ICMJE) as a publication following the ICMJE Recommendations. The journal is indexed in DOAJ.Manuscripts are only accepted online through the portal of the JCCPSL https://jccpsl.sljol.info/ . The prospective authors must read carefully the section on Author Guidelines and prepare their manuscript accordingly. To submit a manuscript or to check the status of a submission the authors must first be registered in the JCCPSL Editorial Management System using an existing or newly created username and password. Next, choose the ‘Start Submission’ link and follow the five-step article submission process which is a simple and self-guided process.

Self‐Perceived Burden as a Mediator of Depression Symptoms Amongst Individuals Living With a Movement Disorder

Movement disorders are chronic illnesses that can lead to functional impairment and psychological distress. This study examined the relations between functional impairment, depression, and anxiety in individuals with movement disorders, and whether these associations were mediated by feelings of self-perceived burden. This cross-sectional study sampled individuals (57 males and 57 females; mean age of 62) with chronic movement disorders from a movement disorders clinic. Patients completed measures of depression, anxiety, functional impairment, and self-perceived burden. Functional impairment was associated with depression, but not anxiety, and was mediated by self-perceived burden for individuals with chronic movement disorders. Self-perceived burden may have an important role relative to individuals' adaptation to chronic illness with implications for future interventions.

Self-perceived burden in chronic pain: Relevance, prevalence, and predictors

Chronic pain is a debilitating condition that can have an impact on various facets of interpersonal functioning. Although some studies have examined the extent to which family members are affected by an individual’s chronic pain, none have examined patients’ perceptions of feeling that they have become a burden to others. Research on self-perceived burden in different medical populations, such as cancer, amyotrophic lateral sclerosis, and stroke, has shown that it is associated with physical symptoms and, more robustly, with psychological difficulties and concerns. The present study examined the prevalence and predictors of self-perceived burden in a tertiary chronic pain sample. Participants were consecutive patients (N=238) admitted to an outpatient, interdisciplinary, chronic pain management program at a rehabilitation hospital. At admission, participants completed a battery of psychometric questionnaires assessing self-perceived burden, as well as a number of clinically relevant constructs. Their significant others (n=80) also completed a measure of caregiver burden. Self-perceived burden was a commonly reported experience among chronic pain patients, with more than 70% of participants endorsing clinically elevated levels. It was significantly correlated with pain intensity ratings, functional limitations, depressive symptoms, attachment anxiety, pain self-efficacy, and caregiver burden. Self-perceived burden was also correlated with an item assessing suicidal ideation. In a hierarchical regression model, depressive symptoms, pain self-efficacy, and adult attachment significantly predicted self-perceived burden after controlling for demographic and pain-related variables. In conclusion, self-perceived burden is a clinically relevant and commonly reported interpersonal experience in patients with longstanding pain.

Suicidal Ideation and Perceived Burdensomeness in Patients with Chronic Pain

There is a clear relationship between suicide risk and chronic pain conditions. However, the exact nature of this link has been poorly understood, with risk attribution often limited to comorbid depression. Perceived burdensomeness has already been confirmed as a risk factor for suicidal ideation (SI) and suicide attempt in the general population. Self-perceived burden, studied among medically and terminally ill medical populations, has begun to receive a great deal of attention as a suicide risk factor. However, this risk has not been considered in an outpatient chronic pain population, a group likely to experience perceived burdensomeness as a particular problem. Guidelines recommend routine suicide risk screening in medical settings, but many questionnaires are time-consuming and do not allow for the assessment of the presence of newly identified risk constructs, such as perceived burdensomeness. This retrospective study examined the relationship between depression, perceived burdensomeness, and SI in a patient sample seeking behavioral treatment for chronic pain management. A logistic regression model was developed, with preliminary results indicating perceived burdensomeness was the sole predictor of SI, even in the presence of other well-established risk factors such as age, gender, depressive symptoms, and pain severity. Findings highlight the potential utility of a single-item screening question in routine clinical care as an incrementally superior predictor of SI in a chronic pain population.

Palliative care for cancer patients who experience self-perceived burden: suggestions from an qualitative study for bereaved family members

終末期がん患者はしばしば家族や医療者に対する負担感(self-perceived burden)を経験するといわれている. 負担感を和らげるためのケアが必要とされる一方で, どのようなケアが望ましいかを実証した研究はほとんどない. 本研究では, 終末期がん患者の感じている負担感の実態と, 患者の負担感を和らげるために必要なケアを調査するために, 28名のがん患者の遺族を対象に半構造化面接を行った. 内容分析の結果, 「がん患者の負担感の内容」(例: 下の世話をしてもらうのがつらい), 「がん患者が行っていた負担感に対するコーピング」(例: 家族の仕事や予定を優先するようにいう), 「家族の気持ちと対応」(例: 患者の遠慮は家族への思いやりの表れだと思った), 「患者の負担感に対して必要なケア」(例: ことさら何かを強調するのではなく, 自然な言葉がけをする)が抽出された. 収集された患者の負担感を和らげるためのケアの有用性の評価が今後の重要な課題である.

Study protocol: optimization of complex palliative care at home via telemedicine. A cluster randomized controlled trial

BackgroundDue to the growing number of elderly with advanced chronic conditions, healthcare services will come under increasing pressure. Teleconsultation is an innovative approach to deliver quality of care for palliative patients at home. Quantitative studies assessing the effect of teleconsultation on clinical outcomes are scarce. The aim of this present study is to investigate the effectiveness of teleconsultation in complex palliative homecare.Methods/DesignDuring a 2-year recruitment period, GPs are invited to participate in this cluster randomized controlled trial. When a GP refers an eligible patient for the study, the GP is randomized to the intervention group or the control group. Patients in the intervention group have a weekly teleconsultation with a nurse practitioner and/or a physician of the palliative consultation team. The nurse practitioner, in cooperation with the palliative care specialist of the palliative consultation team, advises the GP on treatment policy of the patient. The primary outcome of patient symptom burden is assessed at baseline and weekly using the Edmonton Symptom Assessment Scale (ESAS) and at baseline and every four weeks using the Hospital Anxiety and Depression Scale (HADS). Secondary outcomes are self-perceived burden from informal care (EDIZ), patient experienced continuity of medical care (NCQ), patient and caregiver satisfaction with the teleconsultation (PSQ), the experienced problems and needs in palliative care (PNPC-sv) and the number of hospital admissions.DiscussionThis is one of the first randomized controlled trials in palliative telecare. Our data will verify whether telemedicine positively affects palliative homecare.Trial registrationThe Netherlands National Trial Register NTR2817

Depresión y autopercepción de la carga del cuidado en pacientes en hemodiálisis y sus cuidadores

To determine the depressive symptoms, perceived social support, and self-perceived burden in chronic hemodialysis (CHD) patients; identify depressive symptoms and degree of fatigue in caregivers of CHD patients; evaluate-in patients-the association between self-perceived burden and perceived social support, and between self-perceived burden and depressive symptoms; and evaluate-in caregivers-the relationship between the number of years of care and the degree of fatigue reached. A sample of 162 patient-caregiver pairs was selected in which an adapted version of the Multidimensional Scale of Perceived Social Support, along with the Self-perceived Burden Scale, the Center for Epidemiologic Studies Depression Scale, and the Fatigue Severity Scale were applied. The instruments were administered to patients by trained research assistants and, in the case of the caregivers, were self-administered. Forty percent of the patients were women, with an average age of 56 ± 14.9 years, whereas 75% of the primary caregivers were female spouses, with an average age of 50 ± 16.1 years. It was observed that the patients (40.74%) as well as the primary caregivers (43.82%) had depressive symptoms. A positive association (r = 0.43, P < 0.001) was found between self-perceived burden and the presence of depressive symptoms in patients. The majority of the primary caregivers were women and relatives of the patients. They perceived themselves as fatigued with care, as did the patients themselves. The presence of depressive symptoms was similar in patients and caregivers. There was a statistically significant association between self-perceived burden and the presence of depressive symptoms in patients.

Self-perceived burden to family in terminally ill cancer patients at palliative care unit in Japan: perspectives of patients

Self-perceived burden (SPB) is a common problem in terminally ill cancer patients. SPB affects decision making such as life-sustaining treatments, choosing care facilities and communication between patients and the family...

Self-perceived burden in patients with cancer: Scale development and descriptive study

PurposeThe purpose of this study was to develop a Japanese version of the Self-Perceived Burden Scale (SPBS) for patients with cancer, to confirm its validity and reliability, and to elucidate the features of Self-Perceived Burden in Japanese patients with cancer. MethodsFirstly, study team members carried out repeated translation and back translation. After that, scale development involved several phases including item development, construct validity testing, criterion-related validity testing, and reliability testing. A questionnaire that included the SPBS was distributed to 310 patients with cancer. Responses were received from 226 (72.9%) patients and final analysis was performed on data from 210 of these. ResultsExploratory factor analysis indicated that the 18-item version (α = 0.96) of the scale consisted of a single main factor. A 9-item abbreviation (α = 0.93) was therefore proposed. The convergent correlations of the SPBS with the FACIT-Sp and GHQ-12 scales showed significant correspondence. The construct of SPB was distinct from the "social and family well-being" FACIT-Sp subscale. Performance status, disease duration, living arrangement, and main caregiver were significantly related to the SPBS. ConclusionWe developed a Japanese version of the SPBS for cancer patients and demonstrated its validity and reliability, which makes it possible to study SPB in cancer patients in Japan. Our study revealed that cancer patients in Japan also feel SPB, in a way that relates specifically to their cultural background.

Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials

Patients with end-stage renal disease often rely on unpaid caregivers to assist them with their daily living and medical needs. We characterized the degree to which patients enrolled in the Frequent Hemodialysis Network (FHN) trials perceived burden on their unpaid caregivers. Participants completed the Cousineau Perceived Burden Scale, a 10-question scale previously developed in hemodialysis (HD) patients. Associations between baseline burden score and prespecified variables were evaluated using multivariable linear regression. Of 412 participants, 236 (57%) reported having unpaid caregivers. Compared to those without unpaid caregivers, these participants had greater comorbidity (Charlson mean 1.8 ± 1.8 versus 1.2 ± 1.7, P < 0.001), lower Short Form-36 (SF-36) Physical Health Composite (PHC) scores (median 33 versus 41, P < 0.001, higher Beck Depression scores (mean 16 ± 11 versus 12 ± 9, P < 0.001), and worse physical function. Median Cousineau score was 35 (interquartile range 20-53) (theoretical range 0-100). Over 50% felt their caregivers were overextended, yet 60% were confident that their caregivers could handle the demands of caring for them. Higher perceived burden was not associated with ability to be randomized. In adjusted analyses, Cousineau score was inversely associated with SF-36 PHC and Mental Health Composite scores and directly associated with Beck Depression score (each P < 0.001). Most HD patients in the FHN trials perceived substantial burden on their unpaid caregivers, and self-perceived burden was associated with worse depression and quality of life. Evaluation of the effects of frequent HD on perceived burden borne by caregivers in the FHN trials will help to establish the net benefits/determents of these intensive dialytic strategies.

Ask Pain Patients About Self-Perceived Burden

Ask Pain Patients About Self-Perceived Burden

Self-Perceived Burden in Terminally Ill Cancer Patients: A Categorization of Care Strategies Based on Bereaved Family Members' Perspectives

Terminally ill cancer patients often experience a self-perceived burden that affects their quality of life; however, no standard care strategy for coping with this form of suffering has ever been established. The objectives of this present study were 1) to investigate the prevalence of self-perceived burden among terminally ill cancer patients based on a survey of family members, 2) to assess the level of family perceived usefulness of expert-recommended care strategies, and 3) to categorize the care strategies. The subjects were bereaved family members of patients who had died in certified palliative care units throughout Japan. The Good Death Inventory was used to evaluate patients' self-perceived burden based on the proxy ratings of family members. The perceived usefulness of care was assessed using a 27-item questionnaire developed by a focus group of palliative experts and a systematic review. A total of 429 responses (64%) received from a member of each of 666 bereaved families was analyzed. In their responses, 25% of the bereaved family members reported that the patient had experienced a mild self-perceived burden, whereas 25% reported that the patient had experienced a moderate to severe self-perceived burden. The family members recommended the following as particularly effective care strategies: "Eliminate pain and other symptoms that restrict patient activity (53%);" "Quickly dispose of urine and stools so that they are out of sight (52%);" and "Support patients' efforts to care for themselves (45%)." A factor analysis showed that the expert-recommended care strategies could be categorized into seven different components. Many terminally ill cancer patients suffer from a self-perceived burden. Family members recommended a variety of care strategies to alleviate patient-perceived burden. Palliative care specialists should have adequate knowledge of promising care strategies for alleviating patient-perceived burden.

The balance of give and take in caregiver–partner relationships: An examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke.

We examined the sense of being a burden to others or self-perceived burden (SPB) in people with stroke. A mail survey was completed by 57 former inpatients and their partner caregivers. The care recipient survey included measures of functional status, quality of life, marital satisfaction, equity in the relationship, and psychological distress, as well as SPB using the Self-Perceived Burden Scale (SPBS; Cousineau, McDowell, Hotz, & Hébert, 2003). The caregiver survey included similar measures in addition to a caregiver burden measure. SPB was found to be a prevalent and distressing concern. SPBS scores correlated with measures of functional status and mood; however, the correlations were highest for measures of family roles and work/productivity. Using equity theory as a basis to examine the SPB construct, care recipients who perceived themselves as overbenefiting from the relationship had significantly higher SPB scores than those whose relationship was viewed as equitable or underbenefiting. For some receiving care from a partner after stroke is associated SPB. This sense of burden is related to changes in help-seeking behavior, quality of life, and distress.

PMH45 THE ASSOCIATION OF COPAY BURDEN AND MEDICATION ADHERENCE AMONG PATIENTS WITH SCHIZOPHRENIA

Objectives: To assess the association between self-perceived copay burden and medication adherence among patients with schizophrenia. Methods: Data were collected from December 2007 to February 2008 from a web-based consumer panel. Adults (age 18+) self-reporting a diagnoses of schizophrenia were invited to participate in the study through self-reported questionnaires on both the Internet and through 43 interview facilities across the U.S. Inclusion criteria for analysis were: current use of a second generation antipsychotic (SGA), and no exposure to clozapine or a depot formulation antipsychotic. Adherence was assessed using the Morisky Medication Adherence Scale (MMAS), with general adherence defined as a MMAS<2, and complete adherence defined as a MMAS<1. Logistic regression models were developed to assess the effects of self-perceived copay burden on adherence while adjusting for demographics, substance use, concomitant psychotropic medications, co-morbidities, and health insurance. Results: Of the 351 study respondents who met the criteria for analysis, 39% (n=137) perceived experiencing burden from their medication copays. Adjusting for covariates, the effects of copay burden on general adherence approached but did not reach significance (p=0.060). However, patients who experienced a copay burden were less than half as likely to have complete adherence [OR=0.427; 95% CI: (0.257, 0.711); p=0.001]. Effects of copay burden on the individual components of the MMAS varied. Patients with copay burden were more likely to forget to take medication [OR=2.058; 95% CI: (1.270, 3.335); p=0.003] and to discontinue medication when feeling worse [OR=2.000; 95% CI: (1.140, 3.507); p=0.016]. Being careless about taking medication and discontinuing medication when feeling better were not significantly affected by copay burden. Conclusions: Among patients with schizophrenia using SGAs, copay burden is associated with forgetting to take medication, discontinuing medication when feeling worse, and lesser likelihood of complete adherence. Less restrictive formularies that reduce copay burden for SGAs may have a positive effect on medication adherence among patients with schizophrenia. ABSTRACT RESULTS (continued) RESULTS (continued)

Facilitated Advance Care Planning: What is the Patient Experience?

There is little known about the patient experience of participating in facilitated advance care planning (ACP). We conducted a grounded theory study with facilitated ACP participants who had endstage renal disease. A theoretical model "a positive thing: peace of mind" emerged. This model contained three major categories: a) witnessing illness in self and others; b) "I don't want to live like that", a perception of poor quality of life associated with living with cognitive or physical impairments. These preexisting ideas interacted with c) the process, which contained the patient's experience of all of the interactions encountered in facilitated ACP. The relationship between the three categories left participants comfortable that they had addressed their concerns about living in a burdensome state for themselves or their families. The literature review supported prior illness experiences and self-perceived burden as important in advance decision making. The implications of these findings are discussed.