Assistive technologies in reducing caregiver burden among informal caregivers of older adults: a systematic review

Aim: The world population is rapidly ageing. As population age, the incidence of functional limitations increases, demanding higher levels of care from caregivers. Assistive technologies improve individuals’ functioning, independence, well-being and quality of life. By increasing independence of older adults, assistive technologies decrease workloads required from informal caregivers. This review investigates, evaluates, and synthesises existing findings to examine whether and how assistive technologies reduce caregiver burden. Methods: Databases searched included MEDLINE, EMBASE, Scopus, and Cochrane Library. Three groups of keywords were combined: those relating to assistive technology, caregiver burden, and older adults. Results: Two theories emerged from the analysis of study results. Caregivers reported that assistive technologies decrease caregiver burden. However, caregivers had concerns that assistive technologies could add to caregiver burden, highlighting the limitations of assistive technology. Conclusions: As suggested by a majority of the studies in this review, assistive technologies contribute to reducing caregiver burden among caregivers of older adults. Assistive technologies assisted caregivers by reducing time, levels of assistance and energy put towards caregiving, anxiety and fear, task difficulty, safety risk particularly for activities requiring physical assistance and increasing the independence of the users. Further research is required to better understand limitations of assistive technologies.

• Implications for Rehabilitation

• Support for informal caregivers of older adults need more attention and recognition.

• Assistive technologies can reduce caregiver burden among informal caregivers of older adults.

• Further research is required to better understand the effectiveness of assistive technologies in reducing caregiver burden as well as limitations and barriers associated with using assistive technologies.

     

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.     

High perceived caregiver burden for relatives of patients following hip fracture surgery

Purpose: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery.

Methods: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed at four points during 1 year following hip fracture surgery in a regional hospital in southern Spain. The perceived caregiver burden was assessed using the Caregiver Strain Index (0–13 points).

Results: The mean (Standard Deviation) age of the 172 caregivers was 56 (13) years, of which 133 (77%) were woman and 94 (55%) were daughters of the patient. Seventy-nine of the 172 (46%) caregivers perceived a high level of burden (≥?7 points on the Caregiver Strain Index) at the hospital. The corresponding numbers with perceived high level of burden at 1-month, 3-months, and 1-year were 87 (50%), 61 (36%), and 45 (26%) caregivers. A low pre-fracture functional status, post-operative complications, older age of patients, and younger age of caregivers negatively influence caregiver burden at 1-year.

Conclusions: The main caregiver is predominantly female and is most often the daughter of the patient. New treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden.

• Implications for rehabilitation

• The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing her burden of care should be included as one of the objectives of rehabilitation treatment.

• The caregivers of hip fracture patients must be considered as part of the treatment during the patient’s recovery period, and patient handling training should be provided to the caregivers of hip fracture patients during the hospital stay to prepare the process of going back home.

• The caregivers of older patients, those with a low pre-fracture functional level, and of those who suffered post-operative complications, should receive more attention prior to hospital discharge and receive more assistance at home to reduce caregiver burden.

     

Indicators of Health-Related Quality of Life in Heart Failure Family Caregivers

Indicators of caregiver health-related quality of life (HRQL) were identified among 50 caregivers of older patients living with heart failure (HF). Using a cross-sectional design, caregivers were interviewed for perceptions pertaining to caregiver burden, depressive symptoms, patient disease severity, and HRQL. Caregiver burden explained 62% of the variance in caregiver HRQL, adjusted R ² = .58, F (5, 44) = 14.54, p < .01. Caregiver depressive symptoms explained an additional 2% of variance in HRQL. Significant indicators of caregiver HRQL were in the burden domains of caregiver health and caregiver finances. The findings suggest the need for nurses to conduct caregiver health assessments to include screening for depression and assessment of the financial impact caregiving has on the caregiver. Interventions to improve caregiver health and lessen financial burdens should be investigated in future HRQL studies among HF caregivers.     

Characterizing Physical Activity and Sedentary Behavior in Adults With Persistent Postconcussive Symptoms After Mild Traumatic Brain Injury

ObjectiveTo evaluate physical activity (PA) and sedentary behavior and their associations with symptom and quality of life outcomes in adults with persistent postconcussive symptoms (PPCS) after mild traumatic brain injury (mTBI).DesignCross-sectional cohort study.SettingOutpatient brain injury clinic.ParticipantsConsecutive sample of adults (N=180) with a diagnosis of mTBI and PPCS.InterventionsNot applicable.Main Outcome MeasuresPA and sedentary behavior were assessed using the Godin Leisure-Time Exercise Questionnaire and Rapid Assessment Disuse Index, respectively. Participants were dichotomized according to whether they completed 150 minutes of moderate-to-vigorous PA per week, based on Canadian guidelines. Postinjury moderate-to-vigorous PA was also analyzed as a continuous variable.ResultsPrior to injury, 85% of participants reported meeting PA guidelines, compared with 28% postinjury. Individuals meeting PA guidelines postinjury reported higher quality of life (η²_p=0.130; P<.001) and lower scores on measures of functional impact of headache (η²_p=0.065; P=.009), fatigue (η²_p=0.080; P=.004), depression (η²_p=0.085; P=.001), and anxiety (η²_p=0.046; P=.031), compared with those not meeting guidelines. Sedentary behavior postinjury was negatively correlated with quality of life (r_s[127]=–0.252; P=.004) and positively correlated with symptom burden (r_s[167]=0.227; P=.003), fatigue (r_s[127]=0.288; P=.001), depression (r_s[174]=0.319; P<.001), and anxiety (r_s[127]=0.180; P=.042).ConclusionsPA was significantly decreased in individuals with PPCS compared to preinjury levels. Meeting PA guidelines postinjury was associated with better clinical outcomes, suggesting that returning individuals to PA should be considered in the treatment of this patient population.     

Psychosocial factors affecting hip fracture elder's burden of care in Taiwan

OBJECTIVE: The aim of this study was to analyze the factors that affect the burden of care for primary caregivers of older people during the transition period after discharge from the hospital to home. METHODS: Using convenience sampling, 95 older patients who had been hospitalized for a hip fracture and their primary caregivers were enrolled. Data pertaining to the burden experienced by the caregivers were collected 1 week and 1 month after discharge from the hospital. RESULTS: The burden of care was characterized as moderate. Physical functioning of the older people improved gradually with time after discharge from hospital (F = 164.582, p < .001) and were negatively related to caregiver burden. The predictive factors for caregiver burden 1 week after hospital discharge included the older people's physical functioning and self-efficacy, which together contributed to 15.6% of the total variance in caregiver burden. The predictive factors for caregiver burden 1 month after hospital discharge were the degree of caregiver burden at 1 week and social support, which together contributed to 56.0% of the total variance in caregiver burden. CONCLUSION: A health education program should be designed to improve the primary caregiver's knowledge of providing care and suggest strategies to increase social support to reduce the overall burden of care.     

Keeping vulnerable elderly patients free from pressure ulcer is associated with high caregiver burden in informal caregivers

Rationale and objectives The effect of the presence of pressure ulcers on burden of caregivers is unknown. We investigated the relationship between the state of pressure ulcers in vulnerable elderly patients and the burden on their informal caregivers. Methods This cross‐sectional study enrolled 137 patients aged ≥40 years with limited activity and mobility at 10 home care service facilities in Japan. We assessed pressure ulcer status from medical records and caregiver burden using scores from both the Burden Index of Caregivers (BIC) and the Japanese short version of the Zarit Burden Interview (ZBI). Results Among patients, mean age was 80.9 years, 31.4% were men, and 83.9% were free from pressure ulcers. Multivariable analysis showed that caregivers whose patients were free from pressure ulcers had significantly higher caregiver burden as assessed by both the BIC [β‐coefficient = 3.18, 95% confidence interval (CI): 1.42–4.95, P = 0.003] and ZBI scores (β‐coefficient = 1.94; 95%CI = 0.30–3.58; P = 0.03). Conclusions Our results suggest that the continuous effort involved in keeping patients free from pressure ulcers may be associated with high caregiver burden in informal caregivers.     

A causal functional explanation of maintaining a dependent elder in the community

A causal functional structure demonstrates how a perpetual process, like caregiving, maintains itself. The caregiver functional learning model was used to identify factors influencing caregivers when maintaining dependent elders in the community. These factors include seriousness of illness, power, burden, care quality, self-assurance, an understanding of the elder's needs, and time spent in caregiving. This five-stage theoretical model was tested using a sample of 70 caregivers. Findings supported two of the theoretical relationships: seriousness of illness (β = .60) with burden (R2 = 0.35), and self-assurance (β = .36) with time (R2 = 0.18). Three new relationships were added with the empirical model: power (β = .48) with burden (R2 = 0.52), seriousness of illness (β = .36) with self-assurance (R2 = 0.11), and burden (β = .33) with time (R2 = 0.24). A causal functional structure can be used to explain how the phenomenon of caregiving maintains itself. © 1997 John Wiley & Sons, Inc. Res Nurs Health 20: 515–526, 1997     

Psychometric Assessment of the Depressive Cognition Scale in Caregivers of Persons with Dementia

Caregivers of persons with dementia are prone to depression. Early identification of cognitive depressive symptoms is important to prevent the development of clinical depression. The Depressive Cognition Scale (DCS) can be used for early detection, but the scale's psychometrics have not been tested in caregivers of persons with dementia. In this study, 80 caregivers of persons with dementia completed the eight-item DCS and measures of caregiver burden and resourcefulness. A Cronbach's alpha of .88 indicated internal consistency. Construct validity was supported by significant correlations with caregiver burden (r = .40; p < .001) and resourcefulness (r = –.54; p < .001). Principal components factor analysis resulted in two factors in which five items loaded cleanly on one factor and two items have cross-loadings. Because prior factor analysis in previous studies resulted in one factor, we did confirmatory factor analysis in which we forced the items on one factor. All the items loaded on the single factor and the amount of variance explained was 55.99%. The findings suggest the DCS is useful for early detection of depression in caregivers of persons with dementia.     

Development and validation of an Arabic rheumatoid hand disability scale

Purpose: To develop a rheumatoid hand disability scale in the Arabic language adapted for local sociocultural specificities and to test its psychometric properties.

Methods: The choice of hand activities was based on several published indices. The selected items were translated by the forward and backward translation procedures, several modifications were made, and after some questions were added, a provisional scale was obtained. In- and outpatients with rheumatoid arthritis (RA) according to the ACR criteria were chosen to answer the provisional scale and to assess the final scale. Impairment outcome measures (pain as measured on a visual analogue scale, morning stiffness, hand swelling, tenderness), and assessment of disability (on Lee's and Revel's functional indices) were also recorded. The intraclass correlation coefficient and the Bland and Altman methods were used to assess reliability. Construct (convergent and divergent) validity was investigated with use of Spearman's rank correlation, and a factor analysis was performed.

Results: The provisional scale had 21 questions. The adaptation process left 10 questions about hand activity, with four levels of answers. Eighty patients with RA were recruited for the validation of the final scale. The intra- and interrater reliabilities of the scale were 0.96 and 0.94, respectively. Analysis by the Bland and Altman method showed no systematic trend. The scale had good construct validity, with expected convergence with Lee's functional index (r_s?=?0.79) and Revel's functional index (r_s?=?0.81) and divergence with age (r_s?=?0.05), morning stiffness (r_s?=?0.40), pain (r_s?=?0.32), and tenderness (r_s?=???0.48). The factorial structure of the scale was satisfying, with two factors explaining 73% of the variance.

Conclusion: We developed an Arabic index that assesses hand disability due to RA and suits Tunisian people. Further studies are needed to confirm the validity of the scale in other Arabic countries.     

Predictors and correlates of the frequency and the length of verbal communications between nursing staff and elderly residents in geriatric care facilities

Aim: The present study was conducted to clarify the type and frequency of verbal communication between caregivers and elderly residents in geriatric care facilities. The relationship of this verbal communication was studied in terms of the caregivers talking to elderly residents and the utterances issued by the elderly residents. The attributes of the elderly residents were also studied. Methods: There were 35 eldery residents living in three metropolitan geriatric care facilities. Observations were made of caregivers talking to elderly residents and of elderly residents talking to caregivers in order to conduct a content analysis that categorized the types of verbal communication observed. A statistical analysis of the relationship between the frequency and duration of verbal communication and attributes of the elderly residents was carried out. Results: There were two category types of talking to elderly residents by a caregiver: ‘talking to elicit the ‘activities of daily living (ADL)‐related behavior/performance or physical functioning’ (type I: instrumental communication) and ‘talking to facilitate psychosocial life activities’ (type II: affective communication), of which the former accounted for 75.9%. The number of spontaneous utterances from elderly residents was very low, with most utterances being responses to caregivers talking to them. There was a tendency for utterances from the elderly residents to increase as the total time of being talked to by caregiver increased (r = 0.47, P < 0.01). The total amount of time a caregiver spent talking to elderly residents was longer for people with low versus high mobility and for people with dementia versus people without dementia (t = 3.4, P < 0.01). Conclusion: The correlation between type II communication and the mean frequency of utterances by elderly residents was high (r = 0.72, P < 0.01) compared with type I, suggesting that the former type of communication is more likely to elicit utterances by elderly residents.     

The effectiveness of home-based individual tele-care intervention for stroke caregivers in South Korea

KIM S.S., KIM E.J., CHEON J.Y., CHUNG S.K., MOON S. & MOON K.H. (2011) The effectiveness of home‐based individual tele‐care intervention for stroke caregivers in South Korea. International Nursing Review 59 , 369–375 Purpose: The purpose of this study was to develop effective intervention programmes that can reduce family caregiver burden as they provide care to stroke patients so that family caregivers can adapt to and deal with the new circumstances from the early stages of stroke. We also intended to verify the effectiveness of the developed programme. Methods: This study employed a quasi‐experimental design with a repeated‐measures analysis. We included five hospitals specialized in stroke care in Seoul Metropolitan areas. Seventy‐three patients from these hospitals agreed to participate in this study. Results: The score of family caregiver burden decreased by 8.07 (±18.67) in the experimental group and increased by 1.65 (±7.47) in the control group, which was a significant difference (t = 2.257, P = 0.027) between pre‐ and post‐intervention. The family caregiver burden of experimental group was significantly lower than the control group (F = 3.649, P = 0.033). Conclusions: The home‐based individual tele‐care intervention, in addition to the hospital‐based group programme, was cost‐effective and supportive in reducing family caregivers' burden by providing relevant information for their needs in timely manner.     

Disability in end-stage knee osteoarthritis

Objective. To examine the attributes of disability in end-stage knee osteoarthritis (OA) by analyzing the relationships between self-reported disability and objectively measured physical function after controlling pain, personal characteristic factors, and pathophysiological factors.

Methods. The present study adopted a cross-sectional design. The subjects (n=88, aged 60–80 years) were scheduled for primary unilateral total knee arthroplasty (TKA) due to knee OA. Self-reported disability and pain were measured with the Western Ontario and McMaster Universities OA Index (WOMAC) and the RAND 36-item Health Survey 1.0 (RAND-36). Physical performance tests included a 15-m walk test and stair performance. Knee isometric muscle strength was measured. A clinical examination included analyses of comorbidity, body mass index (BMI), and a detailed knee examination: The flexion range of motion (ROM) was measured; the presence of varus/valgus malalignments and antero-posterior laxity was assessed. Radiographs were analyzed with the Kellgren-Lawrence grading scale.

Results. In the linear regression model the WOMAC pain score, antero-posterior laxity of the knee, age, and BMI accounted for 54.8% of the variance in the WOMAC function score. In the bivariate analyses the WOMAC function score had a positive correlation with the 15-m walk (r_s=0.32, p=0.003), stairs up (r_s=0.40, p=0.001), and stairs down (r_s=0.38, p=0.001) tests, and a negative correlation with RPT extension (r_s=?0.45, p < 0.001) and RPT flexion (r_s=?0.39, p=0.001) of the affected side and RPT flexion (r_s=?0.39, p <0.001) of the contralateral side. The results of the physical performance tests also correlated with the RAND-36 Physical function (PF) score. Comorbid diseases and pain deteriorated the results of the physical performance tests and self-reported disability. Female gender deteriorated the results of the physical performance tests and the RAND-36 PF, but not the WOMAC function score. Malalignments, restriction in the flexion ROM of the knee, and the radiologic severity of knee OA did not affect self-reported disability.

Conclusion. Pain, BMI, and antero-posterior laxity of the knee joint were major attributes of self-reported disability. The negative effect of comorbid diseases and female gender on health-related quality of life was significant. The results of objectively measured physical performance tests correlated with self-reported disability.     

Caregiver support,burden, and long-term planning among caregivers of individuals with intellectual and developmental disabilities: A cross-sectional study

Background

Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers.

Methods

A cross-sectional survey was distributed to caregivers of individuals with intellectual/developmental disabilities in NY, OH, PA, and TX, exploring demographics, supports, burden, and LTCP behaviours. Bivariate and linear multiple regression analyses were used to investigate study objectives.

Results

Caregivers (n = 405) were predominantly parents, female, non-Hispanic, and in the ‘learning to plan’ stage of LTCP. Caregiver-identified social support was associated with further progression in LTCP (p = .020) and lower caregiver burden (p < .001).

Conclusion

Social support was associated with further progression in LTCP, and associated with less burden, however fewer than 40% of caregivers reported having social support. Ongoing exploration of emotional/social needs of caregivers is necessary to better support these families.     

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 - 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.     

Depression in family caregivers of elders: A theoretical model of caregiver burden,sociotropy, and autonomy

To test the diathesis‐stress model for family caregivers, two structural equation models were developed to explain depression measured by the Center for Epidemiologic Studies Depression Scale. A cross‐sectional convenience sample of 112 caregivers completed questionnaires to measure burden, personality traits, dysfunctional attitudes, and depression. The final model included direct paths from caregiver burden to autonomy and sociotropy, and indirect paths from burden to depression through sociotropy and autonomy. The final model fit adequately (χ² [224, N = 112] = 308.60, p < .00; CFI = .951; RMSEA = .058). Levels of burden influenced caregiver depression scores. One pathway to depression was though the personality traits of sociotropy and autonomy; both had a larger influence on depression scores than burden alone. © 2009 Wiley Periodicals, Inc. Res Nurs Health 33:20–34, 2010