Documenting the need for teaching resourcefulness skills to family caregivers.

BACKGROUND: Before pursuing randomized controlled trials to determine intervention effectiveness and translating interventions into clinical practice, the need for a specific intervention within a particular population must be established. This need can be determined by using established cut scores on validated measures of relevant constructs. AIM: This study examined differences on caregiver burden and resourcefulness among family caregivers of adults with various health conditions to determine their need for resourcefulness training. METHODS: This cross-sectional study sampled 234 caregivers of persons with amyotrophic lateral sclerosis, cancer, dementia, mental illness, Parkinson's disease, stroke, traumatic brain injury, and multiple or other conditions. They completed validated measures of caregiver burden and resourcefulness. Differences were examined using analysis of variance. Need for intervention was evaluated by comparison with established cut scores. RESULTS: Caregivers differed significantly on caregiver burden (F = 2.46; p = .014) and resourcefulness (F = 2.08; p = .038). Across the groups, average caregiver burden scores indicated severe to very severe burden with caregivers of persons with stroke scoring the highest (M = 26.33) and a moderate or greater need for resourcefulness with the greatest needs in caregivers of persons with stroke, traumatic brain injury, and dementia (M's = 74.83, 72.31, and 77.12). CONCLUSIONS: The findings suggest the need for intervention among all family caregiver groups to reduce their burden, with caregivers of persons with stroke showing greatest need. Specifically regarding resourcefulness training, the needs of family caregivers differed by care recipient condition. Using pre-determined cut scores on established, relevant measures provides support for proposing clinical trials, translation into practice, and intervention sustainability.

Examining the Association between Emotional Dysregulation and Treatment Burden.

Treatment burden contributes to suboptimal adherence and lower health-related quality of life among people diagnosed with chronic conditions, but little is known about how the psychological process of emotional dysregulation influences treatment burden. To explore this relationship, we conducted a descriptive, cross-sectional study comprised of 149 men and women diagnosed with one or more Centers for Medicare and Medicaid Systems defined chronic conditions recruited from a single primary care setting. Multivariate analyses demonstrated emotional dysregulation as an independent factor contributing to total (p < .001), medication (p = .007), and dietary (p < .001) treatment burden, with model effect sizes ranging from large (.43) to moderate (.21), controlling for other known antecedent factors of treatment burden. Emotional dysregulation was not a factor contributing to exercise related treatment burden. Our findings indicated emotional dysregulation as an important factor contributing to higher levels of total, medication, and dietary treatment burden associated with daily self-management regimens.

Associations between symptom severity and treatment burden in people living with HIV.

AIM: To examine the association between symptoms severity and treatment burden in people living with HIV. DESIGN: Correlational, secondary analysis of data from participants diagnosed with HIV enrolled in a descriptive, cross-sectional study examining physical activity patterns. METHODS: We analysed data from 103 men and women using self-report data collected between March 2016 - February 2017. Our primary statistical analyses consisted of explanatory multivariate modelling with individual PROMIS-29 scores representing symptom severity and treatment burden measured using the Treatment Burden Questionnaire-13. RESULTS: Greater symptom severity was associated with higher levels of cumulative treatment burden as well as higher levels of task-specific medication and physical activity burden. Multivariate regression analyses revealed that fatigue was a risk factor of cumulative treatment burden as well as task-specific medication and physical activity treatment burden. Effect sizes of multivariate models ranged from small (0.11) to medium (0.16). Additionally, post hoc analyses showed strong correlations between fatigue and other measured symptoms. CONCLUSION: Findings support extant treatment burden literature, including the importance of addressing symptom severity in conjunction with treatment burden screening in the clinical setting. Results also suggest clinical interventions focused on the reduction of fatigue could reduce treatment burden in people living with HIV. Strong correlations between fatigue and other symptoms indicate the potential for reducing fatigue by addressing other highly clustered symptoms, such as depression. IMPACT: People living with HIV exhibiting higher levels of fatigue are at high risk for treatment burden and poorer self-management adherence. Clinicians should consider incorporating symptom and treatment burden assessments when developing, tailoring and modifying interventions to improve self-management of HIV and other co-morbid conditions.

Treatment burden as a predictor of self-management adherence within the primary care population.

PURPOSE: We aimed to (1) describe the amount of treatment burden experienced in the primary care population diagnosed with chronic conditions and (2) examine if cumulative and task-specific treatment burden were predictors of medication, exercise, and dietary adherence in patients diagnosed with chronic conditions. DESIGN: We conducted a prospective, descriptive, cross-sectional study. METHODS: We enrolled 149 men and women from a single primary care clinic. Participants completed self-report surveys with data collected between September 2019 and December 2019. Our primary statistical analyses consisted of multivariate regression modeling. RESULTS: The sample experience a moderate amount of treatment burden (M = 38.22; SD = 31.83). We found strong, negative correlations between both cumulative and task-specific burden in relation to medication, exercise, and dietary adherence (p < .001). Significant multivariate models (p < .001), controlling for sample demographics, demonstrated cumulative treatment burden predicted medication adherence, whereas task-specific burden predicted medication, exercise, and dietary adherence outcomes, with model effect sizes ranging from moderate (0.20) to large (0.54). CONCLUSIONS: Results demonstrate higher levels of cumulative and task-specific treatment burden predict medication, exercise, and dietary adherence within a sample diagnosed with various chronic conditions. These findings indicate the potential for using treatment burden screening in the clinical setting to identify individuals at risk for poor self-management adherence. Treatment burden screening also enables the provider to determine areas of high burden affecting self-management adherence in order to design an effective treatment plan using targeted interventions, resources, or education to reduce patient burden in order to improve adherence.

A Pilot Study Exploring Treatment Burden in a Skilled Nursing Population.

PURPOSE: This study aimed to measure treatment burden in adults diagnosed with multiple chronic conditions transitioning from a skilled nursing facility to home. DESIGN: Prospective, two-time point, cohort design utilizing convenience sampling from one skilled nursing facility in Northeast, Ohio. METHODS: Seventy-four men and women participated answering self-report questions measuring treatment burden at two time points: prior to discharge and 30 days after discharge. RESULTS: t-test analysis determined treatment burden was not statistically different between time points (p > .05). Multivariate analysis explained 23% of treatment burden's variance, with the severity of multiple chronic conditions and the presence of a caregiver predicting treatment burden (p < .05). CONCLUSION: Findings were contrary to our hypothesis of this population being at risk for high treatment burden. CLINICAL RELEVANCE: Moderate, fluctuating levels of treatment burden suggest that it is possible to estimate demands of treatment prior to discharge from the skilled nursing facility to better inform discharge planning.

Examining the Association between Item Specific Treatment Burden and Adherence in People Living with HIV.

For the 1.1 million people with HIV (PWH) in the United States, adherence to a HIV anti-retroviral medication regimen, engagement in regular physical activity, and eating a healthy diet are essential for maintaining optimal health. However, treatment burden can increase the risk for self-management non-adherence. We analyzed data of 103 men and women diagnosed with HIV to examine the relationship between medication, physical activity, and diet-related treatment burden to corresponding measures of self-management adherence. Multivariate analysis demonstrated that one medication treatment burden item explained 11% (p=.01) of self-reported 30-day HIV anti-retroviral medication adherence; physical activity treatment burden, along with physical functioning, explained 25% (p<.001) of physical activity, measured by daily average steps; and diet-specific treatment burden was non-significant in maintaining a healthy diet, measured by a total Healthy Eating Index-2010 score. Findings demonstrate that specific treatment burden items can predict specific self-management outcome behavior in PWH.

A descriptive, cross-sectional study examining treatment burden in people living with HIV.

AIM: (1) describe the percentage of people living with HIV (PLWH) experiencing high levels of treatment burden who are at risk for self-management non-adherence, and (2) examine the relationship between known antecedent correlates (the number of chronic conditions, social capital, and age) of self-management and treatment burden while controlling for sample socio-demographics. BACKGROUND: Chronic condition self-management is key to maintaining optimal health in the aging population of PLWH. Despite the efforts of providers, patients, and caregivers, self-management non-adherence is still a factor contributing to poor chronic condition self-management and subsequent poor health outcomes. Recent research has identified treatment burden as a risk factor of poor chronic disease self-management adherence. METHOD: Cross-sectional, secondary analysis of a sub-sample of 103 community dwelling, men and women diagnosed with HIV/AIDS derived from a larger parent study examining physical activity patterns in PLWH. RESULTS: Participants reported an overall low level of treatment burden (M = 22.84; SD = 24.57), although 16% (n = 16) of the sample indicated experiencing high treatment burden. The number of chronic conditions (r = 0.25; p ≤ .01) and social capital (r = -0.19; p = .03) were significantly correlated with treatment burden. Multivariate analysis testing known antecedent correlates of treatment burden was statistically significant (p < .05), but only explained 8% of treatment burden's variance. CONCLUSION: Findings have implications for nursing care of PLWH demonstrating a subset of PLWH experience high treatment burden related to chronic condition self-management. Findings also identify characteristics of PLWH who may be at high risk for treatment burden and subsequent self-management non-adherence.

The Association Between Chronic Condition Symptoms and Treatment Burden in a Skilled Nursing Population.

The purpose of the current study was to determine the relationship between chronic condition symptoms and treatment burden in older adults transitioning from skilled nursing facilities to home. Treatment burden is defined as the burden associated with adhering to a prescribed chronic condition self-management regimen. Analysis of correlations between chronic condition symptoms and treatment burden revealed that symptoms and treatment burden are positively correlated (p < 0.05). Multivariate analysis (adjusted R2 = 0.40, F[10, 63] = 5.96, p < 0.001), controlling for other known antecedents of treatment burden, demonstrated that fatigue (standardized beta coefficient = 0.47, p < 0.001) predicted higher levels of treatment burden. Post hoc analysis revealed caregiver presence partially mediated the effect of fatigue on treatment burden, decreasing treatment burden during transition. Findings support existing transitional care literature suggesting that clinical assessment, including symptom screening, treatment of symptoms, and/or intervention reducing the impact of symptoms on patients' health and well-being, may lower treatment burden, thus improving self-management adherence. [Journal of Gerontological Nursing, 44(12), 45-52.].