Karen S. Lyons

Motivational interviewing to increase physical activity in long-term cancer survivors: A randomized controlled trial

Background: Physical activity can confer many benefits on cancer survivors, including relief of persistent symptoms related to cancer treatment. Objectives: To evaluate the effect of a motivational interviewing (MI) intervention on increasing physical activity (Community Healthy Activities Model Program for Seniors questionnaire) and improving aerobic fitness (6-minute walk), health (Medical Outcomes Study Short-Form 36), and fatigue (Schwartz Cancer Fatigue Scale) in cancer survivors. A secondary purpose was to evaluate whether the effect of MI on physical activities depended on self-efficacy. Methods: Fifty-six physically inactive adult cancer survivors (mean = 42 months since completion of treatment) were assigned randomly to intervention and control groups. The MI intervention consisted of one in-person counseling session followed by two MI telephone calls over 6 months. Control group participants received two telephone calls without MI content. Outcomes were measured at baseline, 3 months, and 6 months, and were analyzed using multilevel modeling. Results: The results of the MI intervention explained significant group differences in regular physical activities (measured in caloric expenditure per week), controlling for time since completion of cancer treatment (p <.05). Aerobic fitness, physical and mental health, and fatigue were not different between groups. In the intervention group, individuals with high self-efficacy for exercise at baseline increased their physical activity more than those with low self-efficacy (p <.05). In the control group, increases in physical activity did not depend on self-efficacy. Discussion: Use of MI may increase physical activity in long-term cancer survivors, especially in persons with high self-efficacy for exercise. Multilevel modeling analysis revealed individual changes that would not have been shown by analysis of group means. Future studies with larger samples or more intense MI interventions may show changes in aerobic fitness, physical and mental health, and fatigue.

Clinical trial to compare tinnitus masking and tinnitus retraining therapy

Conclusion: Both tinnitus masking (TM) and tinnitus retraining therapy (TRT) can be effective therapies for amelioration of tinnitus. TM may be more effective for patients in the short term, but with continued treatment TRT may produce the greatest effects. Objectives: Although TM and TRT have been used for many years, research has not documented definitively the efficacy of these methods. The present study was a controlled clinical trial to prospectively evaluate the clinical efficacy of these two methods for US military veterans with severe tinnitus. Subjects and methods: Over 800 veterans were screened to ensure that enrolled patients had tinnitus of sufficient severity to justify 18 months of individualized treatment. Qualifying patients (n=123) were placed quasi-randomly (alternating placement) into treatment with either TM or TRT. Treatment was administered at 0, 3, 6, 12, and 18 months. Outcomes of treatment were evaluated primarily using three self-administered tinnitus questionnaires (Tinnitus Handicap Inventory, Tinnitus Handicap Questionnaire, Tinnitus Severity Index). Results: Findings are presented from the three written questionnaires with respect to three categories of patients: describing tinnitus as a ‘moderate,’ ‘big,’ and ‘very big’ problem at baseline. Based on effect sizes, both groups showed considerable improvement overall. In general, TM effects remained fairly constant over time while TRT effects improved incrementally. For the patients with a ‘moderate’ and ‘big’ problem, TM provided the greatest benefit at 3 and 6 months; benefit to these TRT patients was slightly greater at 12 months, and much greater at 18 months. For patients with a ‘very big’ problem, TM provided the greatest benefit at 3 months. For these latter patients, results were about the same between groups at 6 months, and improvement for TRT was much greater at 12 months, with further gains at 18 months.

Optimism, Pessimism, Mutuality, and Gender: Predicting 10-Year Role Strain in Parkinson's Disease Spouses

PURPOSE There is wide variability in how spouses providing care respond to their care situations. Few studies focus on the roles of both intra- and interpersonal factors in long-term spousal care, particularly in the context of Parkinsons disease (PD). The current study uses longitudinal data over a 10-year period to examine the roles of optimism, pessimism, mutuality, and spouse gender in predicting role strain in PD spouses. DESIGN AND METHODS A longitudinal design was used to study 255 spouses of persons with PD over a 10-year period, with data points at baseline (Year 0), Year 2, and Year 10. A series of multilevel models were used to examine four role strain variables -- global strain, strain from worry, strain from feelings of being manipulated, and strain from increased tension. RESULTS Female spouse gender predicted both higher Year 10 role strain and faster increases in role strain over the 10-year period. In addition, high mutuality and optimism and low pessimism at baseline played important protective roles against increased role strain at Year 10. IMPLICATIONS This study focused on early-stage spousal care in a primarily physical disability context. Findings suggest that gender differences place wives at greater risk for negative outcomes, even in the absence of dementia. Additionally, clinicians have opportunities to target interventions early in the care trajectory based on intra- and interpersonal risk factors.

Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early‐stage Parkinson's disease

Family care research has identified negative outcomes of providing care to a spouse with Parkinsons disease (PD), such as declining physical and mental health. Research has also identified protective variables that decrease negative outcomes such as high mutuality and rewards of meaning. It is important for clinicians to identify “at risk” family caregivers and provide earlier interventions. Despite the importance of age and developmental stage there is a paucity of research comparing young versus older spouse caregivers. This study compared the difference in negative aspects of strain and modulators of strain in young and older PD spouse caregivers. A series of hierarchical multiple regressions were used to examine the contribution of age on both positive and negative aspects of the care situation for 65 (37 young, 28 old) PD spouse caregivers. Negative variables included 3 dimensions of strain; strain from lack of personal resources, strain from worry, and global strain. Positive or protective variables included mutuality, preparedness, and rewards of meaning. Even in early stage disease before significant care is required, young spouses (40–55) were found to be at greater risk for negative consequences of the care situation reporting significantly more strain from lack of personal resources, and lower levels of mutuality and rewards of meaning than older (greater than 70) spouses. As expected, young spouses were more likely to be working, caring for children in the home, and in better physical health than older spouses. Clinicians are well‐situated to identify the unique needs of young spouses and intervene early in the caregiving trajectory. These findings provide ideas for targeted interventions. Future larger studies that compare young and older spouses should include later stage disease to more fully understand the developmental differences raised by the present findings.

Shared decision-making in dementia: A review of patient and family carer involvement:

This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.

Patterns and predictors of patient and caregiver engagement in heart failure care: A multi-level dyadic study

BACKGROUND Heart failure is a burdensome clinical syndrome, and patients and their caregivers are responsible for the vast majority of heart failure care. OBJECTIVES This study aimed to characterize naturally occurring archetypes of patient-caregiver dyads with respect to patient and caregiver contributions to heart failure self-care, and to identify patient-, caregiver- and dyadic-level determinants thereof. DESIGN Dyadic analysis of cross-sectional data on patients and their caregivers. SETTING Outpatient heart failure clinics in 28 Italian provinces. PARTICIPANTS 509 Italian heart failure patients and their primary caregivers. METHODS Multilevel and mixture modeling were used to generate dyadic averages and incongruence in patient and caregiver contributions to heart failure self-care and identify common dyadic archetypes, respectively. RESULTS Three distinct archetypes were observed. 22.4% of dyads were labeled as novice and complementary because patients and caregivers contributed to different aspects of heart failure self-care that was generally poor; these dyads were predominantly older adults with less severe heart failure and their adult child caregivers. 56.4% of dyads were labeled as inconsistent and compensatory because caregivers reported greater contributions to the areas of self-care most insufficient on the part of the patients; patients in these dyads had the highest prevalence of hospitalizations for heart failure in the past year and the fewest limitations to performing activities of daily living independently. Finally, 21.2% of dyads were labeled as expert and collaborative because of high contributions to all aspects of heart failure self-care, the best relationship quality and lowest caregiver strain compared with the other archetypes; patients in this archetype were likely the sickest because they also had the worst heart failure-related quality of life. CONCLUSION Three distinct archetypes of dyadic contributions to heart failure care were observed that represent a gradient in the level of contributions to self-care, in addition to different approaches to working together to manage heart failure. Interventions and clinical programs that involve heart failure dyads should tailor strategies to take into consideration these distinct archetypes and their attributes.

Using multilevel modeling in caregiving research

Recently, caregiving research has moved towards a greater emphasis on the interactive and dynamic processes of the care situation. As a result, many of the questions are multilevel in nature, involving more than one unit of analysis and placing greater focus on the context of the care dyad. Nevertheless, most caregiving studies use methods that fail to address the hierarchical nature of the care dyad and consequently fail to illuminate variation both within and between dyad processes. The focus of this paper is to promote a dyad approach to the analysis of caregiving data and to highlight the advantages and appropriateness of multilevel modeling when dealing with clustered or hierarchical data. In particular, we discuss how multilevel modeling can be adapted to study change in the care dyad over time, improve the way we evaluate interventions, and enhance our understanding of dyad congruence.

Pessimism and optimism as early warning signs for compromised health for caregivers of patients with Parkinson's disease.

Background:Although pessimism and optimism are associated with health-related outcomes, the long-term effects of pessimism and optimism in the caregiving process are understudied, and little is known about their role in health changes over time. Objective:To determine whether pessimism and optimism can be used as early warning signs for negative changes in caregiver depressive symptoms and physical health over a 10-year period. Methods:Multilevel modeling was used to examine longitudinal data from 311 spouse caregivers of individuals with Parkinson’s disease, with data points at baseline, Year 2, and Year 10. Measures included the Life Orientation Test, the Center for Epidemiological Studies—Depression Scale, and the SF-36 Health Survey physical functioning scale. Results:Caregiver pessimism early in the caregiver role was found to be a warning sign for poor current and future caregiver health. High baseline pessimism signaled high levels of baseline depressive symptoms and poor physical health, as well as a faster decline in health over the 10-year study. Optimism played a role in predicting baseline depressive symptoms, although the magnitude of its beneficial contribution was not as great as the deleterious effects of pessimism. Conclusions:Nurses and clinicians have a unique opportunity to detect and intervene with caregivers who show high levels of pessimism early in the caregiving trajectory.

Determinants of Heart Failure Self‐Care Maintenance and Management in Patients and Caregivers: A Dyadic Analysis

Disease self-management is a critical component of maintaining clinical stability for patients with chronic illness. This is particularly evident in the context of heart failure (HF), which is the leading cause of hospitalization for older adults. HF self-management, commonly known as HF self-care, is often performed with the support of informal caregivers. However, little is known about how a HF dyad manages the patients care together. The purpose of this study was to identify determinants of patient and caregiver contributions to HF self-care maintenance (daily adherence and symptom monitoring) and management (appropriate recognition and response to symptoms), utilizing an approach that controls for dyadic interdependence. This was a secondary analysis of cross-sectional data from 364 dyads of Italian HF patients and caregivers. Multilevel modeling was used to identify determinants of HF self-care within patient-caregiver dyads. Patients averaged 76.2 (SD = 10.7) years old, and a slight majority (56.9%) was male, whereas caregivers averaged 57.4 (SD = 14.6) years old, and about half (48.1%) were male. Most caregivers were adult children (48.4%) or spouses (32.7%) of patients. Both patients and caregivers reported low levels of HF maintenance and management behaviors. Significant individual and dyadic determinants of self-care maintenance and self-care management included gender, quality of life, comorbid burden, impaired ADLs, cognition, hospitalizations, HF duration, relationship type, relationship quality, and social support. These comprehensive dyadic models assist in elucidating the complex nature of patient-caregiver relationships and their influence on HF self-care, leading to more effective ways to intervene and optimize outcomes.

A Dyadic Approach to Managing Heart Failure With Confidence

Background:The majority of heart failure (HF) self-care research remains focused on patients, despite the important involvement of family caregivers. Although self-care confidence has been found to play an important role in the effectiveness of HF self-care management on patient outcomes, no known research has examined self-care confidence within a dyadic context. Objective:The purpose of this study was to identify individual and dyadic determinants of self-care confidence in HF care dyads. Methods:Multilevel modeling, which controls for the interdependent nature of dyadic data, was used to examine 329 Italian HF dyads (caregivers were either spouses or adult children). Results:Both patients and caregivers reported lower-than-adequate levels of confidence, with caregivers reporting slightly higher confidence than patients. Patient and caregiver levels of confidence were significantly associated with greater patient-reported relationship quality and better caregiver mental health. Patient confidence in self-care was significantly associated with patient female gender, nonspousal care dyads, poor caregiver physical health, and low care strain. Caregiver confidence to contribute to self-care was significantly associated with poor emotional quality of life in patients and greater perceived social support by caregivers. Conclusions:Findings are supportive of the need for a dyadic perspective of HF self-care in practice and research as well as the importance of addressing the needs of both members of the dyad to maximize optimal outcomes for both.