Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

Behaviour change techniques in home-based cardiac rehabilitation: a systematic review

BACKGROUND: Cardiac rehabilitation (CR) programmes offering secondary prevention for cardiovascular disease (CVD) advise healthy lifestyle behaviours, with the behaviour change techniques (BCTs) of goals and planning, feedback and monitoring, and social support recommended. More information is needed about BCT use in home-based CR to support these programmes in practice.

AIM: To identify and describe the use of BCTs in home-based CR programmes.

DESIGN AND SETTING: Randomised controlled trials of home-based CR between 2005 and 2015 were identified by searching MEDLINE(®), Embase, PsycINFO, Web of Science, and Cochrane Database.

METHOD: Reviewers independently screened titles and abstracts for eligibility. Relevant data, including BCTs, were extracted from included studies. A meta-analysis studied risk factor change in home-based and comparator programmes.

RESULTS: From 2448 studies identified, 11 of good methodological quality (10 on post-myocardial infarction, one on heart failure, 1907 patients) were included. These reported the use of 20 different BCTs. Social support (unspecified) was used in all studies and goal setting (behaviour) in 10. Of the 11 studies, 10 reported effectiveness in reducing CVD risk factors, but one study showed no improvement compared to usual care. This study differed from effective programmes in that it didn't include BCTs that had instructions on how to perform the behaviour and monitoring, or a credible source.

CONCLUSION: Social support and goal setting were frequently used BCTs in home-based CR programmes, with the BCTs related to monitoring, instruction on how to perform the behaviour, and credible source being included in effective programmes. Further robust trials are needed to determine the relative value of different BCTs within CR programmes.

Attitudes and Knowledge Concerning Corneal Donation in a Population-Based Sample of Urban Chinese Adults.

PURPOSE: To better understand knowledge and attitudes concerning corneal donation among Chinese adults.
METHODS: Randomly selected residents in predetermined age strata 20 to 60+ years completed home-based questionnaires in each of 12 randomly chosen communities in Guangzhou, southern China.
RESULTS: Among 1217 selected persons, 430 (35.3%) completed the questionnaires (mean age 40.4 yrs, 57.9% female). Refusers were older (44.8 yrs, P < 0.001), but sex did not differ (52.2% female, P = 0.07). Among participants, 175 (40.7%) were willing to donate their corneas (WTD). Differences between WTD and not WTD included donation knowledge score (range, 1-12) [WTD (SD) 6.91 ± 2.21, not WTD 5.62 ± 2.43, P < 0.001]; having discussed donation (WTD 26.3%, not WTD 8.63%, P < 0.001); viewing donation as unpopular (WTD 88.0%, not WTD 96.5%, P = 0.001); and feeling donation "damages the body" (WTD 15.4%, not WTD 25.7%, P = 0.013). Associated significantly with WTD in multiple regression models were higher knowledge score [odds ratio (OR) = 1.18, 95% confidence interval (CI), 1.04-1.32, P = 0.008]; not feeling donation "damages the body" (OR = 1.91, 95% CI, 1.07-3.43, P = 0.030); and willingness to discuss donation (OR = 10.6, 95% CI, 3.35-33.9, P < 0.001). WTD did not differ by age (>60 yrs: 22/51, 43.1%; ≤60 yrs: 153/379, 40.4%, P = 0.706). Assuming all those refusing the survey would not donate, 14.4% (175/1217) were WTD for themselves, though only 7.1% (86/1217) would do so on behalf of a family member if they did not know the deceased's preference.
CONCLUSIONS: Interventions to increase knowledge and promote discussions about donation, and policies allowing widespread expression of donation preference, are needed in this setting.

Non-contact Pressure-based Sleep/Wake Discrimination

Poor sleep is increasingly being recognised as an important prognostic parameter of health. For those with suspected sleep disorders, patients are referred to sleep clinics which guide treatment. However, sleep clinics are not always a viable option due to their high cost, a lack of experienced practitioners, lengthy waiting lists and an unrepresentative sleeping environment. A home-based non-contact sleep/wake monitoring system may be used as a guide for treatment potentially stratifying patients by clinical need or highlighting longitudinal changes in sleep and nocturnal patterns. This paper presents the evaluation of an under-mattress sleep monitoring system for non-contact sleep/wake discrimination. A large dataset of sensor data with concomitant sleep/wake state was collected from both younger and older adults participating in a circadian sleep study. A thorough training/testing/validation procedure was configured and optimised feature extraction and sleep/wake discrimination algorithms evaluated both within and across the two cohorts. An accuracy, sensitivity and specificity of 74.3%, 95.5%, and 53.2% is reported over all subjects using an external validation
dataset (71.9%, 87.9% and 56%, and 77.5%, 98% and 57% is reported for younger and older subjects respectively). These results compare favourably with similar research, however this system provides an ambient alternative suitable for long term continuous sleep monitoring, particularly amongst vulnerable populations.

Home on a care order: who the children are and what the care order is for

Compared to children in other placements, there is much less known about the characteristics and needs of children in the UK who are returned to their birth parents with a care order still in place. That is in spite of evidence to suggest they face more difficulties than young people in other placements. Based on a 2009 census of looked after children in Northern Ireland, just under 10% (n = 193) were found to be living at home under a care order. Case file reviews were conducted for a quarter of these young people (n = 47) to generate descriptive statistics showing a very diverse population. That was followed by semi-structured interviews with members of eight families (ten children and eight birth parent/s), providing transcripts for thematic analysis. Nearly half of the young people whose case files were reviewed had experienced at least one home placement breakdown, but nearly two thirds had a stable last home placement. Care orders appeared to serve two functions: to give legal authority to social services for the monitoring of placements, and to facilitate family access to family support services. Replacing some care orders with supervision orders might better align legal status and actual function.

Time-limited home-care reablement services for maintaining and improving the functional independence of older adults

Background: Reablement, also known as restorative care, is one possible approach to home-care services for older adults at risk of functional decline. Unlike traditional home-care services, reablement is frequently time-limited (usually six to 12 weeks) and aims to maximise independence by offering an intensive multidisciplinary, person-centred and goal-directed intervention. Objectives:Objectives To assess the effects of time-limited home-care reablement services (up to 12 weeks) for maintaining and improving the functional independence of older adults (aged 65 years or more) when compared to usual home-care or wait-list control group. Search methods:We searched the following databases with no language restrictions during April to June 2015: the Cochrane Central Register of Controlled Trials (CENTRAL); MEDLINE (OvidSP); Embase (OvidSP); PsycINFO (OvidSP); ERIC; Sociological Abstracts; ProQuest Dissertations and Theses; CINAHL (EBSCOhost); SIGLE (OpenGrey); AgeLine and Social Care Online. We also searched the reference lists of relevant studies and reviews as well as contacting authors in the field.Selection criteria:We included randomised controlled trials (RCTs), cluster randomised or quasi-randomised trials of time-limited reablement services for older adults (aged 65 years or more) delivered in their home; and incorporated a usual home-care or wait-list control group. Data collection and analysis:Two authors independently assessed studies for inclusion, extracted data, assessed the risk of bias of individual studies and considered quality of the evidence using GRADE. We contacted study authors for additional information where needed.Main results:Two studies, comparing reablement with usual home-care services with 811 participants, met our eligibility criteria for inclusion; we also identified three potentially eligible studies, but findings were not yet available. One included study was conducted in Western Australia with 750 participants (mean age 82.29 years). The second study was conducted in Norway (61 participants; mean age 79 years). We are very uncertain as to the effects of reablement compared with usual care as the evidence was of very low quality for all of the outcomes reported. The main findings were as follows. Functional status: very low quality evidence suggested that reablement may be slightly more effective than usual care in improving function at nine to 12 months (lower scores reflect greater independence; standardised mean difference (SMD) -0.30; 95% confidence interval (CI) -0.53 to -0.06; 2 studies with 249 participants). Adverse events: reablement may make little or no difference to mortality at 12 months’ follow-up (RR 0.97; 95% CI 0.74 to 1.29; 2 studies with 811 participants) or rates of unplanned hospital admission at 24 months (RR 0.94; 95% CI 0.85 to 1.03; 1 study with 750 participants). The very low quality evidence also means we are uncertain whether reablement may influence quality of life (SMD -0.23; 95% CI -0.48 to 0.02; 2 trials with 249 participants) or living arrangements (RR 0.92, 95% CI 0.62 to 1.34; 1 study with 750 participants) at time points up to 12 months. People receiving reablement may be slightly less likely to have been approved for a higher level of personal care than people receiving usual care over the 24 months’ follow-up (RR 0.87; 95% CI 0.77 to 0.98; 1 trial, 750 participants). Similarly, although there may be a small reduction in total aggregated home and healthcare costs over the 24-month follow-up (reablement: AUD 19,888; usual care: AUD 22,757; 1 trial with 750 participants), we are uncertain about the size and importance of these effects as the results were based on very low quality evidence. Neither study reported user satisfaction with the serviceAuthors’ conclusions:There is considerable uncertainty regarding the effects of reablement as the evidence was of very low quality according to our GRADE ratings. Therefore, the effectiveness of reablement services cannot be supported or refuted until more robust evidence becomes available. There is an urgent need for high quality trials across different health and social care systems due to the increasingly high profile of reablement services in policy and practice in several countries.