Carer Strain Index Research Articles

Carer-held records for dementia: a controlled trial

A carer-held record (CHR) was developed to enable carers to contribute to care plans for their relatives with dementia, alongside other professionals. The aim of this study was to establish whether CHRs provide any measurable benefits for carers, in the areas of health, stress, knowledge of dementia and locus of control. This was a controlled parallel-group trial involving 84 carer/patient pairs, drawn from all new referrals to two community mental health teams (CMHTs). Subjects from one CMHT were given CHRs. The control group from the other CMHT were not offered the initiative. Carers in both groups completed instruments measuring knowledge of dementia, carer stress and strain, carer health, and locus of control (internal, external, chance, shared care) at three time points: baseline, 6 months and 1 year. Findings are reported for outcome at 6 months and 1 year on 51 carer/patient pairs. Having a CHR was associated with significantly reduced scores on the Carer Strain Index at 1 year (mean between-group difference: -1.34, 95% CI -2.67 to -0.02). Regarding locus of control, external control scores were significantly lower in the intervention group, by 2.5 points at 6 months (95% CI -4.82 to -0.18) and 3.43 points at 1 year (95% CI -5.57 to -1.29) (p = 0.01). There was a significant group by time interaction in chance control, with the difference in chance control between groups widening between 6 and 12 months. In the shared care dimension of locus of control, there was no difference at 6 months, but a significant group by time interaction, with the intervention group maintaining a higher level of internal control between 6 and 12 months, while the control group reduced. No significant differences were identified in the domains of carer health or knowledge of dementia. Although not a randomized controlled trial, and limited by smaller sample size than planned, this study indicates that use of CHRs provides some benefits for carers in the domains of carer strain and locus of control.

The effectiveness, acceptability and costs of a hospital-at-home service compared with acute hospital care: a randomized controlled trial

To compare the safety, effectiveness, acceptability and costs of a hospital-at-home programme with usual acute hospital inpatient care. Patients aged 55 years or over being treated for an acute medical problem were randomized to receive either standard inpatient hospital care or hospital-at-home care. Follow-up was for 90 days after randomization. Health outcome measures included physical and mental function, self-rated recovery, health status as assessed by the SF-36, adverse events and readmissions to hospital. Acceptability was assessed using satisfaction surveys and the Carer Strain Index. Costs comprised hospital care, care in the home, community services, general practitioner services and personal health care expenses. In all, 285 people were randomized with a mean age of 80 years. There were no significant differences in health outcome measures between the two randomized groups. Significantly more patients receiving care at home reported high levels of satisfaction, as did more of their relatives. Relatives of the care-at-home group also reported significantly lower scores on the Carer Strain Index. However, the mean cost per patient was almost twice for patients treated at home (NZ 6524 dollars) as for standard hospital care (NZ 3525 dollars). A sensitivity analysis indicated that, if the service providing care in the home had been operating at full capacity, the mean cost per patient episode would have been similar for both modes of care. This hospital-at-home programme was found to be more acceptable and as effective and safe as inpatient care. While caring for patients at home was significantly more costly than standard inpatient care, this was largely due to the hospital-at-home programme not operating at full capacity.

Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised controlled study

Objective: To determine whether a programme of multidisciplinary rehabilitation and group support achieves sustained benefit for people with Parkinson’s disease or their carers. Methods: The study was a randomised controlled...

The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe.

The measurement of functioning and well-being from the perspective of the patient has in recent years become central to the assessment of health and the evaluation of treatment regimes. The past decade has seen an enormous growth in the application of measures designed to assess quality of life in a vast array of medical specialties. However, the use of such measures in neurology has been relatively limited, and this has certainly been the case in amyotrophic lateral sclerosis (ALS). The European ALS Health Profile Study is a longitudinal survey of patients diagnosed with ALS or other motor neurone diseases in which patients are asked to complete questionnaires concerning their subjective health status. Data from clinical assessments are also collected. It is intended that the information collected will provide more systematic and detailed evidence of the impact of the disease from the perspective of the patient. This contribution documents results from baseline assessment obtained from data supplied by clinicians, carers and patients themselves. Three outcome measures are assessed in this paper: the SF-36, a generic measure of well being and functioning, the ALS Functional Rating Scale and the Carer Strain Index. The evidence presented here suggests that these measures provide a meaningful and valid picture of the impact of the disease. The data indicate that ALS has substantial adverse effects both upon the functioning and well being of patients and carers, as well as an association between the emotional health status of patients and carers, and between the physical health status of patients and carers.

How great a burden does early discharge to hospital-at-home impose on carers? A randomized controlled trial

to assess the effects of an early discharge hospital-at-home scheme on self-reported carer strain and quality of life. a randomized controlled trial Bristol, UK. 133 carers of patients receiving either early discharge from hospital to hospital-at-home (n = 93) care or usual hospital care and discharge (n = 40). modified 12-item Carer Strain Index, COOP-WONCA charts and EuroQol EQ-5D at 4 weeks and 3 months post-randomization. the mean age of carers was 65 years; 56% were women. There were no marked differences between the groups in any of the outcomes used at either 4-week or 3-month follow-up. there was no evidence of increased self-reported burden imposed on carers of patients discharged early from hospital. Decisions on the implementation of hospital-at-home schemes should be influenced by considerations of cost and effectiveness rather than effects on carers. The effects on carers may, however, differ for other forms of home-based care.

Brain injury - the perceived health of carers

Purpose : This paper explores the perceived health and reported level of strain in the primary carers of severely brain injured individuals, 15-18 months after discharge from inpatient rehabilitation. Method : Seventy carers took part in a prospective descriptive study utilizing a semistructured interview and standardized measures including the SF36, The Carer Strain Index and the Relative Questionnaire. Functional consequences for the injured person were also assessed. Results : The SF36 demonstrated a trend towards lower perceived health for carers than that reported in the general population. Neither perceived health status nor level of strain differed significantly according to the type of injury sustained (haemorrhagic or traumatic) nor initial severity of injury. Factors that contributed to carers having worse health status included the injured person's level of disability and interpersonal factors such as the nature of the relationship, with spouses having lower perceived health status than parents. Conclusions : Irrespective of cause of injury, generalised health consequences result for the carers of those with disabling consequences of brain injury. Factors independent of the injured individual themselves (such as the nature of the relationship to the carer) need to be taken into consideration when exploring wellbeing of carers and planning services.

Occupational therapy for stroke patients not admitted to hospital: a randomised controlled trial

Patients who have a stroke are not always admitted to hospital, and 22-60% remain in the community, frequently without coordinated rehabilitation. We aimed to assess the efficacy of an occupational therapy intervention for patients with stroke who were not admitted to hospital. In this single-blind randomised controlled trial, consecutive stroke patients on a UK community register in Nottingham and Derbyshire were allocated randomly to up to 5 months of occupational therapy at home or to no intervention (control group) 1 month after their stroke. The aim of the occupational therapy was to encourage independence in personal and instrumental activities of daily living. Patients were assessed on outcome measures at baseline (before randomisation) and at 6 months. The primary outcome measure was the score on the extended activities of daily living (EADL) scale at 6 months. Other outcome measures included the Barthel index, the general health questionnaire 28, the carer strain index, and the London handicap scale. All assessments were done by an independent assessor who was unaware of treatment allocation. The analysis included only data from completed questionnaires. 185 patients were included: 94 in the occupational therapy group and 91 in the control group. 22 patients were not assessed at 6 months. At follow-up, patients who had occupational therapy had significantly higher median scores than the controls on: the EADL scale (16 vs 12, p<0.01, estimated difference 3 [95% CI 1 to 4]); the Barthel index (20 vs 18, p<0.01, difference 1, [0-1]); the carer strain index (1 vs 3, p<0.05, difference 1 [0 to 2]); and the London handicap scale (76 vs 65, p<0.05, difference 7, [0.3 to 13.5]). There were no significant differences on the general health questionnaire between the patient or carer. Occupational therapy significantly reduced disability and handicap in patients with stroke who were not admitted to hospital.

Identifying the concerns of informal carers in palliative care.

The purpose of this preliminary study was to identify the perceived support needs of informal carers (families and friends) of cancer patients receiving palliative care in the community. Changes in policy mean that increasing numbers of palliative care patients receive the majority of their care at home. This potentially places heavy demands on families and friends. Thirty-nine informal carers were recruited from two areas in southern England. Data were obtained on psychological morbidity (General Health Questionnaire), and caregiving burden (Carer Strain Index), and a semistructured interview was used to elicit data on perceptions of caring. Results indicate that 33 (84%) reported above normal levels of psychological distress and 16 (41%) experienced high levels of strain related to caregiving. Younger age and being female were found to be correlated with psychological morbidity and strain. Participants also reported life restrictions, emotional distress and limited support.

Blood flow in the skin of the foot related to posture in diabetes mellitus.

Normal healthy subjects show a reflex rise in precapillary resistance in the skin of the foot when they rise from lying to standing. To investigate the integrity of this reflex in patients with diabetes mellitus blood flow in the plantar region of the big toe was measured, using a laser Doppler flowmeter. The responses of diabetic patients with and without peripheral sensory neuropathy and healthy control subjects matched for age and sex were studied, with the foot at heart level and the foot passively lowered to 50 cm below the heart. In normal subjects mean blood flow recorded during the third to fourth minute of dependency fell to 18.1 (SD 11.9)% of the preceding resting flow determined with the foot at heart level. In the diabetic patients without neuropathy blood flow fell to 28.9 (18.6)% of the preceding resting flow. In the diabetic patients with neuropathy blood flow fell to 53.5 (23.7)% of the preceding resting flow, which was significantly different from the value achieved by the diabetics without neuropathy (p less than 0.02) and the healthy controls (p less than 0.002). Six normal subjects were indirectly heated to release sympathetic tone and achieve the same mean skin temperature of the foot as the diabetic patients with neuropathy, and blood flow fell to 38.7 (24.3)% of the preceding resting flow, a value not significantly different from the response seen in the patients with neuropathy. These findings suggest that the postural control of blood flow in the foot is disturbed in patients with diabetic neuropathy, and this disturbance is compatible with a loss of sympathetic vascular tone. The resultant hyperperfusion on dependency may account for the oedema seen in some patients with neuropathy and may also act as a stimulus for the thickening of capillary basement membranes.