Guilt after placement questionnaire: a new instrument to assess caregiver emotional functioning following nursing home placement

Objective: Guilt is a core feature of dementia caregivers’ experiences following placement. This study describes and validates a new assessment tool for monitoring caregiver adjustment after placement.

Methods: Forty-six items addressing ambivalence and guilt about placement were tested with 170 dementia caregivers (M age = 56.79, SD = 13.19; 69.4% female; 54.7% adult child).

Results: Using principal axis factor analysis, 10 items were retained that showed acceptable internal consistency (Cronbach's alpha of 0.92). Construct validity was established in a subset of the sample (n = 53) with measures of depression (r = 0.53), burden (r = 0.48), conflict with staff (r = 0.47), and well-being (r = ?0.30).

Conclusions: This scale may be used to identify caregivers at risk for adjustment problems following placement and to monitor adjustment over time.     

Cognitive functioning among cognitively intact dementia caregivers compared to matched self-selected and population controls

Purpose of the study: Caregiving for a person with dementia is frequently used to model the impact of chronic stress on health, including cognitive functioning. However, the prevalence of typically healthier, self-selecting non-caregiving control groups could contribute to a picture of poorer caregiver performance and overstate the negative effects of stress. We investigated differences in cognitive performance between dementia caregivers and two groups of non-caregivers recruited using different sampling methods.

Design and methods: We compared cognitive function and psychological wellbeing among 252 spousal dementia caregivers with demographically matched non-caregiving control groups drawn from (1) a population study and (2) a self-selecting sample. Comparable cognitive measures included immediate and delayed recall, processing speed reaction time and verbal fluency.

Results: Caregiver and non-caregiver performance was comparable on most cognitive domains. However, caregivers outperformed both control groups on processing speed (p ≤ .05) and reaction time (p ≤ .05), despite having higher levels of stress and depression (ps < .001). Furthermore, caregivers had significantly better free recall than self-selecting controls (p < .001).

Implications: Our results, overall, do not support the idea that caregiving is associated with stress-induced cognitive deficits. Rather, the trend toward better caregiver performance is consistent with the healthy caregiver hypothesis.     

Effect of activity-based mirror therapy on lower limb motor-recovery and gait in stroke: A randomised controlled trial

Objective: To determine the effect of activity-based mirror therapy (MT) on motor recovery and gait in chronic poststroke hemiparetic subjects.

Design: A randomised, controlled, assessor-blinded trial.

Setting: Rehabilitation institute.

Participants: Thirty-six chronic poststroke (15.89?±?9.01 months) hemiparetic subjects (age: 46.44?±?7.89 years, 30 men and functional ambulation classification of median level 3).

Interventions: Activity-based MT comprised movements such as ball-rolling, rocker-board, and pedalling. The activities were provided on the less-affected side in front of the mirror while hiding the affected limb. The movement of the less-affected lower limb was projected as over the affected limb. Conventional motor therapy based on neurophysiological approaches was also provided to the experimental group. The control group received only conventional management.

Main outcome measures: Brunnstrom recovery stages (BRS), Fugl-Meyer assessment lower extremity (FMA-LE), Rivermead visual gait assessment (RVGA), and 10-metre walk test (10-MWT).

Results: Postintervention, the experimental group exhibited significant and favourable changes for FMA-LE (mean difference?=?3.29, 95% CI?=?1.23–5.35, p?=?.003) and RVGA (mean difference?=?5.41, 95% CI?=?1.12–9.71, p?=?.015) in comparison to the control group. No considerable changes were observed on 10-MWT.

Conclusions: Activity-based MT facilitates motor recovery of the lower limb as well as reduces gait deviations among chronic poststroke hemiparetic subjects.     

A how-to guide to aphasia services: celebrating Professor Linda Worrall’s contribution to the field

Background: This article recognises Professor Linda Worrall’s contribution to aphasiology and discusses research themes which have grown from her work.

Aims: To review, summarise, and discuss literature relating to four themes which have emerged from the work of Professor Worrall: (1) Research capacity building; (2) Implementation of research evidence in clinical practice; (3) Meaningful outcome measurement; and (4) Improvement of psychological and emotional outcomes.

Main contribution: A review of the literature, with examples of practical applications.

Conclusions: The work of Professor Worrall has greatly influenced the field of aphasia; her legacy is the research capacity she has built in Australia and around the world.     

Association of physical functioning of persons with dementia with caregiver burden and depression in dementia caregivers: an integrative data analysis

Objectives: To determine whether caregiver relationship and race modify associations between physical functioning of persons with dementia (PWD) and their caregiver's burden and general depressive symptoms.

Method: We pooled data from four behavioral intervention trials (N = 1,211). Using latent growth modeling, we evaluated associations of PWD physical functioning with the level and rate of change in caregiver burden and caregivers' general depressive symptoms and stratified these associations by caregiver relationship and race.

Results: PWD were, on average, 81 years old (68% female) with mean follow-up of 0.5 years. More baseline PWD physical impairment was associated with less worsening in caregiver burden over time (β = ?0.23, 95% CI: ?0.29, ?0.14), but this relationship was not modified by caregiver characteristics. More impaired baseline PWD physical functioning was not associated with changes in depressive symptoms (β = ?0.08, 95% CI: ?0.17, 0.00), but was associated with less worsening in depressive symptoms among spousal (β = ?0.08, 95% CI: ?0.17, 0.00) and non-white (β = ?0.08, 95% CI: ?0.17, 0.00) caregivers.

Conclusions: Dementia caregivers may experience reduced caregiver-related burden because of adjustment to PWD functional status, while spousal and non-white caregivers may experience less depressive symptoms resultant of adjustment to functional status.     

A treatment comparison study of a photo activity schedule and Social Stories for teaching social skills to children with Autism Spectrum Disorder: brief report

Purpose: To compare the efficacy of two procedures, a photo activity schedule intervention and Social Stories, to teach social skills to four children diagnosed with Autism Spectrum Disorder (ASD).

Methods: An adapted alternating treatments design with an additional multiple baseline control was used, and two social skills were targeted for each of the four participants, one under each intervention condition.

Results: Results indicated that all four participants learned the target social behaviours with the photo activity schedule intervention, but did not learn target social behaviours with Social Stories.

Conclusions: Findings support the use of a photo activity intervention for teaching social skillsto children with ASD; we discuss the implications of inconsistent findings of effectiveness of Social Stories.     

Caregiver distress in schizophrenia and mood disorders: the role of illness-related stressors and caregiver-related factors

Background: Studies using the stress-appraisal-coping model to examine caregiving in schizophrenia and mood disorders are limited.

Aim: This study attempted to examine psychological distress among caregivers of persons with schizophrenia and mood disorders using the framework of the stress-coping theory. The impact of illness-related stressors and caregiver-related factors on caregiver-distress was also explored.

Methods: In this cross-sectional study, 176 of the 238 selected outpatients with remitted schizophrenia, bipolar and recurrent depressive disorders identified over a 1-year period underwent standardized assessments of psychopathology and functioning. Assessments of burden, appraisal, coping, social support, neuroticism, familial–cultural variables and psychological distress (as an index of caregiving-outcome) were also carried out among family-caregivers of these persons.

Results: High levels of caregiver-burden and caregiver-distress and a mix of positive and negative appraisal, adaptive and maladaptive coping, and high and low levels of perceived support among caregivers characterized the caregiving experience. Univariate analyses revealed that both illness-related stressors (symptom-severity, level of functioning, objective burden) and caregiver-related factors (subjective burden, appraisal, coping, perceived support, family-cohesion, neuroticism, time spent in caregiving) influenced caregiver-distress. However, multivariate analyses demonstrated that caregiver-related factors such neuroticism, perceived support, time spent in caregiving, subjective burden and negative appraisal had a much greater influence on caregiver-distress than illness-related stressors.

Conclusions: Although interactions between illness-related stressors and caregiver attributes appear to determine caregiver-distress, subjective perceptions and other attributes of caregivers may have a greater impact on distress. Therefore, interventions to reduce caregiver-distress should place equal, if not more emphasis on caregiver-related factors which influence distress.     

Longitudinal trajectories of subjective care stressors: the role of personal,dyadic, and family resources

Objectives: Stressors are critical to the caregiver stress process, yet little work has examined resources that contribute to longitudinal changes in subjective stressors. The present study examines a variety of factors that contribute to changes in subjective stressors across time.

Method: Dementia caregivers (N = 153) completed an in-person interview and eight daily telephone interviews at baseline, and follow up interviews at 6 and 12 months. Growth curve analyses examine how care- and non-care stressors, respite, dyadic relationship quality, family support/conflict and care transitions (e.g. nursing home placement) are associated with changes in role overload and role captivity across 12 months.

Results: Caregivers who transitioned out of their role had higher overload and captivity at baseline. Among caregivers who transitioned out of caregiving, higher captivity at baseline was associated with declines in captivity and overload; more non-care stressors at baseline was linked to increased captivity and greater overload across time. Adult day service use and family support were associated with lesser captivity over time; taking more breaks from caregiving was linked to lower overload. Higher dyadic relationship quality was associated with lower captivity and overload.

Conclusion: Findings contribute to caregiver intervention efforts by highlighting important resources associated with subjective stressors across time.     

Stroke survivor cognitive decline and psychological wellbeing of family caregivers five years post-stroke: a cross-sectional analysis

Background: Family members frequently provide long-term care for stroke survivors, which can lead to psychological strain, particularly in the presence of cognitive decline.

Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, and to explore associations with stroke survivor cognitive decline.

Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self-report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and CES-D. Cognitive decline in stroke survivors was assessed from the caregiver’s perspective using the IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic regression models.

Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symptoms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors without cognitive decline.

Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symptoms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly associated with both depressive and anxious symptoms of family caregivers. Family members play a key role in the care and rehabilitation of stroke patients; enhancing their psychological wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors and families.     

Depressive symptoms in caregivers immediately after stroke

Background: Caregivers of stroke survivors often suffer depressive symptoms that interfere with their own health. Early recognition may lead to attenuation of symptoms and better health and well-being for caregivers.

Objective: We examined characteristics of caregivers and stroke survivors associated with caregivers’ depressive symptoms in the early poststroke period.

Methods: We conducted a prospective, longitudinal exploratory observational study with a convenience sample of 63 caregivers of older adult (≥ 65 years) stroke survivors recruited from urban acute-care settings. We enrolled caregivers by 2 weeks poststroke (T1) and revisited them 4 weeks later (T2). Depressive symptoms were measured using the Patient Health Questionnaire-9. A separate unadjusted linear mixed model was computed to explore significant associations between each caregiver or stroke-survivor characteristic and depressive symptoms.

Results: Caregivers, on average, reported mild depressive symptoms at T1 and T2. Each of the following characteristics was independently associated with caregiver depressive symptoms over the first 6 weeks poststroke: caregiver uncertainty (p < 0.001), perceived stress (p < 0.001) but not cortisol levels (p = 0.858 on waking, p = 0.231 evening), coping (p < 0.001), social support (p = 0.006), race (p = 0.022), income (p = 0.001), time spent on care (p = 0.039), and stroke-survivor race (p = 0.033) and functional status (p = 0.003). At T2, caregiver depressive symptoms were correlated with evening cortisol level (p = 0.001).

Conclusions: Caregiver and stroke-survivor characteristics may help identify caregivers at highest risk for early depressive symptoms and guide interventions aimed at their resolution.     

Exploring dimensions of social support and resilience when providing care at the end of life: a qualitative study

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers.

Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers.

Participants: 44 bereaved carers, who had been identified by GP as ‘main carer’ of someone recently deceased (3–12 months), aged between 38 and 87 years old (mean= 67).

Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present.

Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources.

Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care ‘work’. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience.     

Differences in Developmental Concerns of Young Children with Autism Spectrum Disorder Across Racial/Ethnic Groups

Purpose: Parents/caregivers of children with autism spectrum disorder (ASD) have varying types of initial concerns regarding their child’s development, which may be culturally bound to parents’ perceptions of their child’s development. This study investigated differences in the types of initial developmental concerns reported by parents or caregivers of different racial/ethnic groups with children in an early intervention program.

Method: This study examined the frequency of endorsement of different types of concerns in African American, Caucasian, and Hispanic families.

Results: No significant differences between racial/ethnic groups were found in the endorsement of concerns related to communication, language/speech, motor, problem behavior, sensory, feeding, prematurity, attention, adaptive functioning, and medical conditions. Racial/ethnic groups differed significantly in their endorsement for social concerns.

Conclusion: Racial/ethnic group differences were confirmed regarding initial developmental concerns related to social behavior, which may be due to cultural beliefs. The implications of these findings on early identification are discussed.     

Pharmacogenetics and levodopa induced motor complications

Aim: L-dopa remains the most effective symptomatic therapy for Parkinson's disease (PD) but unfortunately, its chronic use is often associated with motor complications. This review highlights the importance of pharmacogenetics in an individualised PD therapeutic approach.

Material and Methods: review of the literature was done.

Results: PD patients show remarkable heterogeneity in their response to L-dopa and this profound interindividual heterogeneity suggests that there is a genetic predisposition.

Conclusions: The impact of the genetic makeup of every individual on PD treatment appears to be of great importance in order to achieve not only the optimum therapeutic effect, but also with minimal side effects.     

Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving

Objectives: This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong.

Method: Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition.

Results: As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress.

Conclusion: As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.     

French translation and validation of a fragile X syndrome screening checklist

Background: Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability among men. This syndrome is frequently underdiagnosed in adults. The aim of this study was to develop and validate a French translation of the screening checklist Fragiele-X screeningslijst.

Method: The validation sample for the translated checklist included 22 pairs of men between the ages of 18 and 52, matched by age and degree of intellectual impairment.

Results: The translated checklist achieved coefficients of 0.92 for internal consistency, 0.90 for test-retest reliability and 0.65 for inter-rater reliability. These psychometric properties are commensurate with those of the original checklist.

Conclusion: Therefore, the translated checklist developed in this study can be considered a valid screening instrument for the detection of FXS in men with intellectual disabilities.

Abbreviations: FXS: fragile X syndrome; FMR1: fragile X mental retardation 1 (gene)     

Unmet care needs,care provision and patient satisfaction in patients with a late life depression: a cross-sectional study

Background: Research has shown that some 30% of total care needs in people with late-life depression (LLD) are unmet. It is not known to what extent patients actually don't receive any care for these needs or consider the care to be insufficient and their satisfaction with the provided care.

Aim: The aim of this study is to obtain insight into the care provided in relation to the reported unmet care needs and satisfaction with the total care provided is examined.

Method: A cross-sectional study of 99 people with LLD in an ambulatory setting.

Results: In 67% of patients, at least one unmet need was ascertained. In most cases (80%) care was actually provided for those needs by professionals and/or informal caregivers. Patients were satisfied with the care delivered for 81% of the reported care needs. Satisfaction was lowest for social care needs (67%). For six specific care needs it was demonstrated that dissatisfied patients were significantly more depressed than satisfied patients.

Conclusion: Even though patients might receive care for certain needs, this does not mean that their needs are met. A substantial proportion of patients with LDD feel that they need additional help for unmet needs.     

Using photographs to explore self-understanding in adolescent boys with an autism spectrum condition

Background: Research evidence suggests that self-understanding is likely to be limited in individuals with autism.

Method: Photo-elicitation interview was used to explore self-understanding in five adolescent boys diagnosed with an autism spectrum condition.

Results: An interpretative phenomenological analysis yielded three superordinate themes: self in action, self extended in time and self in relation to others. These themes captured how participants understood themselves in terms of their actions and abilities, in the context of their past and future and in relation to others.

Implications: The findings suggested that self-understanding is informed by relationships with parents, self-other comparisons and by reflecting on past and future selves, as well as on activities engaged in. Photo-elicitation was effective in engaging participants with the research process.     

A Note on the “One Case per Stagger Position” Character of Common Multiple-Baseline Intervention Designs

Purpose: To overcome the constraint of common multiple-baseline designs that only one case per stagger position is permitted.

Methods: Three alternative strategies for assigning more than one case to each stagger position are examined.

Results: The three recommended strategies achieve the objective while maintaining the study’s internal and statistical-conclusion validities.

Conclusions: ExPRT, a freely available Excel-based randomization-test package, can be used to assist in both the design and statistical analysis associated with each of the strategies.     

Perspective of patients and caregivers about stroke rehabilitation: the Quebec experience

Background: The unique perspectives of patients and caregivers on their experiences as users of rehabilitation services help identify areas for improvement for the continuum from acute care to community integration.

Objective: This study reports perceptions of persons with stroke and their caregivers in an existing continuum of stroke care, social services, and rehabilitation in the Province of Quebec.

Methods: A total of 10 focus groups were held, 5 with persons with stroke (n = 37, mean age 59.6 years (SD = 11.6); 21 men) and 5 others with caregivers (n = 31; mean age 58.8 years (SD = 15.1); 8 men). Discussions were transcribed and were the object of thematic content analysis using Nvivo.

Results: Participants expressed their general satisfaction toward the care received in inpatient, hospital, and rehabilitation settings. The information received about acute care, however, was deemed insufficient and fragmented, and access of rehabilitation services was often perceived to be difficult. In the community integration phase of the continuum, most participants stated that they had experienced poor accessibility to services of any kind.

Conclusions: Persons with stroke and their relatives’ perspectives about the services that they obtained throughout the rehabilitation continuum vary importantly according to the services examined. Adopting a continuum perspective is helpful to target priorities for improvement.     

Perspectives of carers of people with intellectual disability accessing general practice: “I’d travel to the ends of the earth for the right person”⁣

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice.

Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia.

Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for.

Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study.