Jill I. Cameron

Differences in quality of life across renal replacement therapies : A meta-analytic comparison

A meta-analysis compared emotional distress and psychological well-being across renal replacement therapies (RRTs) and examined whether differences could be explained by: (1) treatment modalities, (2) case mix, or (3) methodologic rigor. Standard meta-analytic procedures were used to evaluate published comparative studies. Successful renal transplantation was associated with: (1) lower distress (effect size, d = -0.43 SD) and greater well-being (d = 0. 62 SD) than in-center hemodialysis (CHD) and (2) lower distress (d = -0.29 SD) and greater well-being (d = 0.53 SD) than continuous ambulatory peritoneal dialysis (CAPD). CAPD was characterized by greater well-being (d = 0.18 SD) than CHD and CHD was associated with greater distress (d = 0.16 SD) than home hemodialysis. Although methodologic rigor and case-mix differences did not correlate with the magnitude of psychosocial differences across RRTs, 10 of the 12 comparisons (83%) were threatened by publication bias (ie, that nonsignificant comparisons may have been underrepresented in the published literature). Thus, although significant quality-of-life differences were evident across treatment groups, the types of patients representative of the various RRTs also differed significantly in terms of case-mix variables relevant to psychosocial well-being and emotional distress. Published findings indicating differential quality of life across RRTs may thus be attributable to: (1) valid differences in effective renal replacement, reduced medical complications, and lifestyles afforded by these treatment modalities; (2) case-mix differences in the patient samples selected to represent them in research comparisons; or (3) both of these alternative explanations.

A Longitudinal View of Apathy and Its Impact After Stroke

Background and Purpose— Stroke survivors are often described as apathetic. Because apathy may be a barrier to participation in promising therapies, more needs to be learned about apathy symptoms after stroke. The specific objective was to estimate the extent to which apathy changes with time over the first year after stroke and the impact of apathy on recovery. Methods— The Apathy Assessed cohort was formed from stroke survivors participating in a longitudinal study of health-related quality of life after stroke. A family caregiver completed an apathy questionnaire by telephone at 1, 3, 6, and 12 months after stroke (n=408). Group-based trajectory modeling and ordinal regression were used to identify distinctive groups of individuals with similar trajectories of apathy over the first year after stroke and predictors of apathy trajectory. Results— Both 3- and 5-group trajectory models fit the data. We used the 5-group model because of the potential to further explore the apathy construct. The largest group (50%) had low apathy and 33% had minor apathy that remained stable throughout the first year after stroke. A small proportion (3%) of the study sample had high apathy that remained high. Two other groups of almost equal size (7%) showed worsening and improving apathy. Poor cognitive status, low functional status, and high comorbidity predicted higher apathy. High apathy had a significant negative effect on physical function, participation, health perception, and physical health over the first 12 months after stroke. Conclusion— Some degree of apathy was prevalent and persistent after stroke and was predicted by older age, poor cognitive status, and low functional status after stroke. Even a minor level of apathy had an important and statistically significant impact on stroke outcomes.

The experience of providing care to relatives with chronic mental illness.

Research on family caregivers of mentally ill relatives has historically focused on negative aspects of caregiving, often described as caregiver burden. The authors document caregivers’ perspectives on both the negative and positive aspects of caregiving. A qualitative approach was used. Data collection involved 20 in-depth, audiotaped, semistructured interviews focusing on caregivers’ positive and negative personal experiences with caregiving to a relative with mental illness. Caregivers reported common negative impacts but also beneficial effects, such as feelings of gratification, love, and pride. Main themes included stigma, systems issues, life lessons learned, and love and caring for the ill relative. This study counterbalances the predominantly negative consequences previously reported and adds to the emerging literature on positive aspects of caregiving. Mental health professionals need to help caregiving families make choices to improve their challenging situations and identify the rewards of caregiving, and to advocate for increased systemic supports to ease caregiver burden.

Intensive care unit-acquired weakness: clinical phenotypes and molecular mechanisms.

Intensive care unit-acquired weakness (ICUAW) begins within hours of mechanical ventilation and may not be completely reversible over time. It represents a major functional morbidity of critical illness and is an important patient-centered outcome with clear implications for quality of life and resumption of prior work and lifestyle. There is heterogeneity in functional outcome related to ICUAW across various patient populations after an episode of critical illness. This state-of-the art review argues that this observed heterogeneity may represent a clinical spectrum of disability in which there are recognizable clinical phenotypes for outcome according to age, burden of comorbid illness, and ICU length of stay. It further argues that these functional outcomes are modified by mood, cognition, and caregiver physical and mental health. This proposed construct of clinical phenotypes will be used as a framework for a review of the current literature on the molecular biology of muscle and nerve injury. This translational approach for the development of models pairing clinical phenotypes for different functional outcomes after critical illness with molecular mechanism of injury may offer unique insights into the diagnosis and treatment of muscle and nerve lesions.

Stroke family caregivers’ support needs change across the care continuum: a qualitative study using the timing it right framework

Purpose: Family caregivers provide essential support as stroke survivors’ return to community living, but it is not standard clinical practice to prepare or provide ongoing support for their care-giving role. In addition, health care professionals (HCPs) experiences with providing support to caregivers have not been explored previously. The objectives of this qualitative study were to: (1) explore the support needs over time from the perspective of caregivers, (2) explore the support needs over time from the perspective of HCPs, and (3) compare and contrast caregivers’ and HCPs’ perspectives. Methods: A qualitative study with stroke family caregivers (n = 24) and HCPs (n = 14). In-depth interviews were audio taped, transcribed, and analyzed using Framework Analysis. Results: Three main themes emerged concerning: (1) types and intensity of support needed; (2) who provides support and the method of providing support; and (3) primary focus of care. These themes are discussed in relation to the TIR framework. Conclusions: Caregivers’ needs for support and the individuals most suited to providing support change across the stroke survivor’s recovery trajectory. Changes to service delivery to better support caregivers may include: (1) addressing caregivers’ changing needs across the care continuum; (2) implementing a family-centered model of care; and (3) providing 7-day per week inpatient rehabilitation. Implications for Rehabilitation Caregivers support needs change across the care continuum Support programs should be offered outside usual working hours Health care professionals should address the needs of the stroke survivor and their family caregiver Caregivers benefit from receiving support from health care professionals, family, friends, and care-giving peers

Optimizing Stroke Systems of Care by Enhancing Transitions Across Care Environments

Stroke affects many aspects of the lives of stroke survivors and their family caregivers. Supporting long-term recovery and rehabilitation are necessary to help stroke survivors adapt to living with the effects of stroke and to help family members adapt to the caregiving role. During recovery and rehabilitation, many elements of the health care continuum are utilized, including emergency response, acute care, inpatient and outpatient rehabilitation, and community and long-term care. With the advent of thrombolytic therapy and the benefits of stroke units, stroke survival and outcomes are improving. As a result, the current emphasis of stroke system improvement is to implement stroke units throughout the developed world. To enhance the patient centeredness of stroke care delivery, an important next phase of stroke system improvement will center on the experiences of stroke survivors and their family caregivers as they move through diverse care environments. The objective of this article was to conduct a scoping review of the literature on stroke transitions to identify the current areas of research emphasis. This article highlights stroke survivors’ and family caregivers’ experiences with transitions across care environment and some potential strategies to improve those transitions.

A brief problem-solving intervention for family caregivers to individuals with advanced cancer

OBJECTIVE To evaluate a brief problem-solving intervention for family caregivers to individuals with advanced cancer. METHOD Family caregivers were recruited through oncology clinics of a large tertiary care hospital in Canada. Those providing informed consent completed a baseline survey, received a brief problem-solving intervention, received a detailed home care guide, and completed a follow-up survey over the telephone 4 weeks after receiving the intervention. RESULTS Thirty-four family caregivers completed all aspects of the study. Sixty-eight percent of caregivers were women, 73.5% were married to the care recipient, and their average age was 53.6 years. This brief intervention resulted in improvements in emotional tension (P<.03), caregiving confidence (P<.06), and positive problem-solving orientation (P<.06). CONCLUSION These findings suggest that even a brief problem-solving intervention may be beneficial for family caregivers to individuals with advanced cancer.

Exploring the feasibility of videoconference delivery of a self-management program to rural participants with stroke.

Moving On after STroke (MOST(R)) is a multimodal, psycho-educational, and exercise self-management program for people with stroke and their caregivers. The objective of this study was to explore the feasibility of videoconference delivery to rural communities. Seven participants, their caregivers, and two facilitators formed one group, located in an urban center. Five participants and their caregivers from two remote locations were connected by videoconference. Feasibility was assessed by examining recruitment and attendance rates; program adaptations; and participant, facilitator, and staff perceptions. Data sources included logs, surveys, focus groups, and interviews. To examine preliminary outcomes, goal attainment, balance, mood, participation, and walking endurance were measured pre-, post-, and 3 months following intervention. Twelve participants were recruited in 3 weeks. Attendance rates were 89.8% for the local group and 70.4% for the remote group. Program adaptations, facilitation strategies, and involvement of onsite support promoted the success of the videoconference delivery. Participants reported that the program provided people with stroke as well as caregivers with greater awareness of stroke, increased social support, and improved ability to cope. They reported a decrease in loneliness by sharing with others in a similar situation, even if they were in a different community. Pre-post improvements were seen in goal setting, mood, balance, balance confidence, and walking endurance. Videoconferencing is a feasible method for the dissemination of the MOST program to rural areas. This form of delivery is associated with improvements in goal achievement, mood, balance, and endurance, and is well received by all participants.

What Makes Family Caregivers Happy During the First 2 Years Post Stroke

Background and Purpose— This study aimed to identify aspects of the caregiving situation contributing to family caregivers’ psychological well-being. Methods— Longitudinal cohort study with structured quantitative interviews 1, 3, 6, and 12 months post stroke. A subset of participants also completed surveys 18 and 24 months post stroke. Participants included individuals hospitalized for their first stroke and their family caregivers. Psychological well-being was assessed by the Positive Affect Scale. Results— A total of 399 stroke survivor, caregiver dyads completed the 1-year follow-up and 80 dyads completed the second year of follow-up. Using mixed effects modeling for longitudinal data, caregivers reported more psychological well-being when they provided more assistance to stroke survivors who had fewer symptoms of depression, better cognitive functioning, and who had more severe strokes. In addition, caregivers who maintained participation in valued activities had more mastery, gained personally providing care, were in better physical health, were older, and were from Quebec reported more psychological well-being. Caregivers followed for a second year post stroke reported better psychological well-being when caring for stroke survivors with fewer symptoms of depression and more severe strokes and when the caregivers had a greater sense of mastery and gained more personally providing care. Conclusions— Our findings contribute to the caregiver intervention development literature by identifying aspects of the caregiving situation that are associated with positive outcomes. Incorporating specific aspects, for example, strategies to enhance caregiver mastery into programs and services offered to caregivers may enhance their positive experiences with providing care and ultimately enhance the sustainability of the caregiving situation.

Getting on with the rest of your life following stroke: a randomized trial of a complex intervention aimed at enhancing life participation post stroke

Objective: To enhance participation post stroke through a structured, community-based program. Design: A controlled trial with random allocation to immediate or four-month delayed entry. Setting: Eleven community sites in seven Canadian cities. Subjects: Community dwelling persons within five years of stroke onset, cognitively intact, able to toilet independently. Interventions: Evidence-based program delivered in three 12-week sessions including exercise and project-based activities, done as individuals and in groups. Main measures: Hours spent per week in meaningful activities outside of the home and Reintegration to Normal Living Index; Stroke-Specific Geriatric Depression Scale, Apathy Scale, gait speed, EuroQuol EQ-5D, and Preference-Based Stroke Index. All measures were transformed to a scale from 0 to 100. Assessments prior to randomization, after the first session at three months, six months, 12 months, and 15 months. Results: A total of 186 persons were randomized. The between-group analysis showed no disadvantage to waiting and so groups were combined and a within-person analysis was carried out at three time points. There were statistically significant increases in all study outcomes on average over all persons. Over 45% of people met or exceeded the pre-specified target of a three hour per week increase in meaningful activity and this most often took a full year of intervention to achieve. Greatest gains were in satisfaction with community integration (mean 4.78; 95% CI: 2.01 to 7.55) and stroke-specific health-related quality of life (mean 4.14; 95% CI: 2.31 to 5.97). Conclusions: Community-based programs targeting participation are feasible and effective, but stroke survivors require time to achieve meaningful gains.