Increased Burden Of Care Research Articles

Exploring the perspectives of key stakeholders on the design and delivery of an intervention to rehabilitate people with cognitive deficits post-stroke.

Background: Stroke is a leading cause of death and disability worldwide. Cognitive impairment is common post-stroke and can result in negative sequalae such as a lower quality of life, increased carer burden and increased healthcare costs. Despite the prevalence and associated burden of post-stroke cognitive impairment, there is uncertainty regarding the optimum intervention to improve cognitive function post-stroke. By exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment, this qualitative study aims to inform the design and development of an intervention to rehabilitate cognitive impairment post-stroke. Methods: A qualitative descriptive approach will be applied, using semi-structured interviews with people post-stroke, carers and healthcare professionals. People post-stroke will be recruited via gatekeepers from a local stroke support group and Headway, a brain injury support service. Carers will be recruited via a gatekeeper from a local carers branch. Healthcare professionals will be recruited via gatekeepers from relevant neurological sites and via Twitter. The final number of participants recruited will be guided by information power. Data will be collectively analysed and synthesised using thematic analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines will be used to standardize the conduct and reporting of the research. Conclusions: It is anticipated that exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment post-stroke will inform the development of an evidence-based optimal intervention to rehabilitate cognitive deficits post-stroke. This study was granted ethical approval from the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Study findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.

"He Just Doesn't Want to Get Out of the Chair and Do It": The Impact of Apathy in People with Dementia on Their Carers.

Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed to fill this gap and explore the lived experience of apathy in dementia from the perspectives of the people with dementia and their carers. This article reports on the carers’ perspectives. Six dyads of people with dementia and carers participated in semi-structured interviews, which were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: (1) achieving a balance of conflicting emotions—the challenges of apathy led to feelings of guilt, acceptance, and frustration; (2) new roles imposed by caring, which involved taking on new responsibilities and promoting remaining interests of person with dementia; and (3) having a life of one’s own—coping with apathy by talking to others, and spending time away from the caring role. This study highlighted that carers are caught in a struggle between wanting to involve the person with dementia in decisions and finding that they cannot if they want to overcome the hurdle of apathy. Implications of this study suggest that a wider understanding of apathy at a societal level could lead to the provision of a helpful forum for carers to share their experiences.

Exploring the perspectives of people post-stroke, carers and healthcare professionals to inform the development of an intervention to improve cognitive impairment post-stroke

Background: Stroke is a leading cause of death and disability worldwide. Cognitive impairment is common post-stroke and can result in negative sequalae such as a lower quality of life, increased carer burden and increased healthcare costs. Despite the prevalence and associated burden of post-stroke cognitive impairment, there is uncertainty regarding the optimum intervention to improve cognitive function post-stroke. By exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment, this qualitative study aims to inform the design and development of an intervention to rehabilitate cognitive impairment post-stroke. Methods: A qualitative descriptive approach will be applied, using semi-structured interviews with people post-stroke, carers and healthcare professionals. People post-stroke will be recruited via gatekeepers from a local stroke support group and Headway, a brain injury support service. Carers will be recruited via a gatekeeper from a local carers branch. Healthcare professionals will be recruited via gatekeepers from relevant neurological sites and via Twitter. The final number of participants recruited will be guided by information power. Data will be collectively analysed and synthesised using thematic analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines will be used to standardize the conduct and reporting of the research. Conclusions: It is anticipated that exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment post-stroke will inform the development of an evidence-based optimal intervention to rehabilitate cognitive deficits post-stroke. This study was granted ethical approval from the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Study findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.

Effect of Employment Status on the Association Among Sleep, Care Burden, and Negative Affect in Family Caregivers.

To examine the effect of employment status on sleep, care burden, and negative affect among family caregivers (FCs) at home. An intensive longitudinal design was applied in which 25 FCs underwent in-home assessments for up to 56 days. At baseline, demographic data and employment status were collected. FCs wore a wrist-worn device with an accelerometer to assess objective total sleep time (TST) for consecutive 24-hour periods. FCs answered the Zarit Burden Interview (ZBI) and Positive and Negative Affect Schedule (PANAS) every night before sleep. Linear mixed model analysis was used to examine the effect of objective sleep status on ZBI and PANAS scores the following day. Mean participant age was 66.3 ± 10.8 years (72.0% female), and mean survey period was 29.1 ± 9.6 days (866 observations). Mean TST of FCs was 5.7 ± 1.4 hours. In total, 32.0% of FCs were employed either full- or part-time. TST of employed FCs was significantly associated with care burden and negative affect (B = -0.4 and -1.3, respectively); however, positive affect was not associated with TST. FCs who were unemployed experienced less care burden and negative affect (rate of change: -7.7 and -8.0, respectively). Additionally, TST of unemployed FCs was associated with negative affect; thus, when they slept 1 hour longer than their mean TST, they experienced less negative affect the following day. A reduction in TST could lead to increased care burden and more severe negative affect the following day, which may be moderated by employment status.

Factors Related to Sleep Disturbances for Informal Carers of Individuals With PD and Dyadic Relationship: A Rural Perspective.

This study examines factors related to sleep disturbances, and the dyadic sleep relationship, in a convenience sample of 29 persons with Parkinson disease (PD) and spouse carer dyads living in regional Queensland. Carers completed questionnaires on sleep, depression, anxiety, carer burden, and well-being. Regarding carers, 66% reported sleep disturbances related to nocturnally care demands. Less than half of informal carers with a disturbed sleep had informed a health professional of this problem. Medication was the most commonly advised sleep intervention (44%). Sleep disturbances in informal carers correlated with increasing carer burden, depression scores, anxiety scores, poor quality of life, negative cognitions related to their sleep disturbance, and poor sleep hygiene. Regarding patient-carer dyads, 59% reported both the individuals having problematic sleep disturbances. Patient sleep disturbance correlated with informal carer increase in depression and anxiety scores, and poor carer burden. Informal carer's sleep disturbance correlated with patient anxiety scores and severity of complications from PD therapy. Evidence-based sleep interventions addressing such dyads in rural areas warrant future study.

Gender and education inequalities in parental employment and earnings when having a child with increased care needs: Belgium versus Norway

Caring for children with increased care needs can be demanding and the time required to provide such care hampers parents’ employment participation. Especially, mothers and lower educated parents are affected by the increased care burden and reduce or stop their employment participation. So far, the literature lacks studies investigating the employment impact in a comparative perspective. We fill this gap by comparing Belgium and Norway. We use comparable administrative datasets, identifying children with increased care needs as those receiving a cash benefit designed to financially compensate for the extra private care. The results confirm that gender and education inequalities exist in both countries. Moreover, we find that the negative care burden gap in employment depends on the country of residence, with significantly larger inequalities in Belgium. Our analyses suggest that increased support on multiple fronts is needed for these families.

Incidence of Hospitalization for Stroke in Queensland, Australia: Younger Adults at Risk

Background: Trends in the incidence of stroke are important for health care planning. Information is particularly scarce in Australia, due to the paucity of studies with access to recent, large-scale, longitudinal datasets. In this paper we investigated the incidence of hospitalization for stroke by sex, age, and subtype in the whole State of Queensland (Australia). Methods: We obtained data of all hospital admissions for stroke in Queensland from 2002 to 2015. Age standardized hospitalization rates for first-ever stroke were calculated along with WHO adjusted rates. Poisson regression analyses were conducted to investigate the influence of time and gender on the incidence of subtypes of stroke as well as the total incidence. Results: Admissions for first-ever stroke were 57,597. Crude hospitalization incidence rose from 87 (95% confidence interval [CI], 84-90) to 108 (95%CI, 105-111) for both sexes. The highest increase was in the age bands 40-49 from 33 (95%CI, 26-40) to 54 (95%CI, 46-62; +62%) and 50-59 from 82 (95%CI, 70-93) to 127 (95%CI, 114-140; +56%) in men and in 60-69 from 118 (95%CI, 100-136) to 159 (95%CI, 143-175; +34%) in women. Ischemic subtype rates appeared to increase more than haemorrhagic rates. Age range, sex, and year reliably predicted incidence rates. Conclusions: If these trends are maintained, the data predict further increases, especially in males aged 40-59. With people apparently stroking earlier and mortality rates dropping, the healthcare system in Australia is faced with a rapidly increasing care burden.

Healing hand ulcers caused by focal spasticity

Spasticity is a common manifestation of many upper motor neuron lesions such as stroke, traumatic brain injury, and multiple sclerosis. In some cases, spastic fingers in the hand press hard into the palm, resulting in skin breakdown and atypical pressure ulcerations. We treated 10 such patients living in the nursing homes with long-standing treatment-resistant hand ulcers in our spasticity clinic first, with Botulinum toxin A (BoNTA) injection into the spastic muscles followed by dressing, splinting, and hand therapy. These ulcers failed to respond to standard treatment, causing significant pain, offensive smell, increased carer burden, and difficulty in maintaining hygiene as hands could barely be opened for dressing and therapy. We noted complete healing of ulcers with significant improvement in the following outcome measures-Modified Ashworth Scale for spasticity, Visual Analog Scale for pain, pressure ulcer grading for the ulcers, Fingertip to Palm distance for hand opening, Carer Burden Scale, and in the Goal Attainment Scale pre, 4 weeks, and 3 months postinjection with P values of .003, .003, .004, .005, .004, and .004, respectively. Reducing spasticity with BoNTA should be the first step in treating hand ulcerations caused by focal spasticity, followed by dressing, splinting, and hand therapy.

Anxiety Reduction Through Close Communication with Robotic Media in Dementia Patients and Healthy Older Adults

The purpose of this paper is to provide an overview of the recent research on android robotic media with a focus on its effects on older adults and to present a discussion on the implications of the experimental results. Social isolation of older adults is a leading issue in healthcare. Patients with dementia experience symptoms, such as agitation, which can result in increasing care burden. Android robotic media have been shown to provide a feeling of safety and communication support to older adults. In previous case studies, an increase in prosocial behaviors was observed in participants with dementia; however, the media effects needed to be measured by assessment scales. The current results indicate the effects of robotic media on dementia symptoms, especially the decrease in patients’ anxiety. As demonstrated in another experiment, anxiety reduction can also be expected in healthy older adults; however, certain conditions may be required for both healthy older adults and those with dementia. Key factors for the media effect, namely, dementia type, user’s personality, and personalized dialogue are taken into consideration for the further development of robotic systems. Additionally, we further discuss the significance of long-term data collection, especially from the early life stages because teleoperation or autonomous systems are expected to utilize information that can affect the effect of robotic media.

1 Review of the Identification and Management of Contractures in Inpatients with Dementia In A District General Hospital

Abstract Background Patients with dementia are at risk of contractures which are associated with pain, pressure sores, increased carer burden and reduced function (1). It has been estimated up to 55% of residents in nursing homes have a contracture (2). Locally, patients are identified and treated in care homes. We questioned why comparatively few hospital inpatients were seen. Methods We audited acute elderly inpatients at a large district general hospital on two days. Patients with a diagnosis of dementia were identified and then checked for contractures. Information was collected on a proforma. Patients audited on day one were excluded from day two. Results 410 patients were audited. 100 patients were identified with dementia. 21 individual contractures were identified with the hands been the most common site (47.6%). Only three contractures had been highlighted in the medical notes. Patients with contractures were more likely to be at home with carers or in a care facility (93.7% verse 64.3%). None of the patients with contractures were independently mobile. Higher proportions (31.2% vs 8.3%) with contractures were bedbound compared to those without. Complications were identified, with two patients reporting pain and three patients having pressure sores. Only one patient was receiving treatment for their contractures. Patients with contractures were more likely to have a higher frailty score, had a previous stroke (37.5% verse 13.1%) and have a vascular type dementia (31.3% verse 14.2%). Conclusions Contractures were a significant problem in our inpatient population in patients with a diagnosis of dementia. A large proportion were not identified by the clerking team, not receiving treatment and beginning to have complications. Subsequently a presentation highlighting this issue was carried out to junior doctors on the elderly wards, a coding proforma for contractures was produced and a guide to management of this issue is being put together for use in the inpatient setting.

Understanding perioperative bowel preparation for colorectal surgery

Bowel preparation is an important perioperative measure in elective colorectal surgery. The goal is to empty the contents of the intestine and reduce the number of bacteria in the intestine, so as to reduce the risk of surgical-related infections, ensure the safety of the surgery and facilitate a smooth postoperative recovery. Compared with the upper abdominal surgery, colorectal surgery is usually associated with a higher risk of postoperative infection, including incision and abdominal infections, anastomotic leakage and infection-related intestinal obstruction, and of infections of distant organs, such as pneumonia and urinary tract infections. With the application of evidence-based medicine in clinical practice, especially the popularization of enhanced recovery after surgery (ERAS), the unfavorable factors of bowel preparation, such as physical discomfort, interference with normal physiology, and increased care burden, have received increasing attention. Relevant clinical trials and meta-analyses continue to emerge, and the clinical significance of bowel preparation in preventing postoperative infection has been questioned.

Professional care team burden scale: cross-cultural adaptation and psychometric properties of the Turkish version.

Care teams in nursing homes have to meet the expectations of the people they care for, their relatives and the institutions. This affects the quality of the care. An increased care burden may negatively affect the quality of work, lives and the health of formal caregivers. This methodological cross-sectional study was conducted to adapt the Professional Care Team Burden (PCTB) Scale, which was developed to assess the difficulties experienced by caregivers working in long-term care, to Turkish and test its validity and reliability. The study was conducted with 100 caregivers working at a nursing home and rehabilitation centre. The Caregiver Information Form and the Professional Care Team Burden Scale were used to collect data. The language and content validity, construct validity and reliability of the Turkish version of the scale were tested, respectively. The factor analysis showed that the Professional Care Team Burden Scale could be used in two dimensions. When the test-retest was done, the reliability of the scale was found to be high (0.982). The construct validity of the scale showed that the three-factor model did not acceptably fit the data, while the two-dimensional model obtained by removing some of the variables from the model did fit the data (RMSEA=0.106, GFI=0.933, CFI=0.916, IFI=0.919, RFI=0.778 and RMR=0.078). The factor loadings for the construct validity of the scale demonstrated that the two-factor model showed an acceptable fit. The study found that the two-factor Turkish version of the Professional Care Team Burden Scale met the validity and reliability criteria. The scale, which has an important place in the assessment of the formal caregivers' burden, can be used with healthcare professionals providing care for older adults.

Predictors of Caregiver Burden among Parents of Children with Cancer

Background: Cancer is one of the most common diseases in children. Cancer in children can cause many problems for parents, and impose heavy care burden on them, which can lead to negative health consequences. The aim of this study was to determine caregiving burden and relevant influential factors among parents of children with cancer. Materials and Methods: This cross-sectional descriptive study was done on 125 parents of children with cancer in oncology department of Shohada Hospital, Tehran, Iran, during March to August 2017. Caregiving burden was measured using the Caregiver Burden Scale. Descriptive statistics, independent-samples T test, one-way ANOVA, Pearson’s correlation analysis, and multivariate linear regression analysis (stepwise method) were used in data analysis with SPSS software (v.19). Results: The mean score of parents’ care burden was 52.76 ± 10. Moreover, 17.6%, 71.2% and 11.2% of parents had low, moderate, and high care burden, respectively. Regression analyses indicated that the factors associated with care burden were cancer type (Acute myeloid leukemia (β=0.36, p<0.001) and Ewing sarcoma (β=0.16, p=0.007)), the number of hospitalization (β=0.38, p<0.001), duration of disease (β=-0.31, p<0.001), parent’s age (β=-0.29, p<0.001), parent’s income (β=-0.23, p<0.001), and child’s age (β=0.24, p<0.001). These variables accounted for 65% of the variance in care burden. Conclusion: The result of this study demonstrated that most of parents of children with cancer had moderate levels of care burden. Different variables increased care burden in parents. Therefore, planning for holistic interventions to reduce care burden in parents and improve quality of care is necessary.

77 Behind the Scenes: the Burden Experienced by Informal Carers of People with Dementia

Abstract Background Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden. Methods Fifty-two people with dementia(PwD) and their informal caregivers were recruited by convenience sampling, and data was collected as part of the ‘CHESS’ research trial. Data was collected during baseline assessments between April 2017 and September 2018. Dementia disease severity was measured using the Mini-Mental State Examination(MMSE), the Neuro-Psychiatric Inventory Questionnaire(NPI-Q), and the Disability Assessment for Dementia(DAD) scale. These outcome measures were then compared to levels of caregiver burden, which was measured using the Zarit-Burden Interview(ZBI). These comparisons were completed using Spearman’s correlations. Socio-demographic characteristics of both the carer and PwD were then compared to caregiver burden, using Mann-Whitney and Kruskal-Wallis tests. Results The results of the study substantiate that behavioural disturbances(p=0.000) and increasing disability(p=0.022) of the PwD are associated with higher carer burden. The study also identified potential non-modifiable risk factors for increased carer burden. These include spousal relationship to the PwD(p=0.096), older caregiver age(p=0.208), female carer gender(p=0.083) and higher educational attainment of the caregiver(p=0.035). Some of these differ from factors influencing burden in other international populations. Conclusion This preliminary analysis is the first study of its kind to be carried out in Ireland. It sheds light on potential predictors and risk factors for carer burden and shows need for future research to be carried out in this area. Such research would help to clarify interventions which could minimise the prevalence of the burden experienced by informal caregivers.

Quality of life of family carers of persons with young-onset dementia: A Nordic two-year observational multicenter study.

ObjectivesTo identify factors associated with QOL in carers of persons with young-onset Alzheimer’s (AD) and frontotemporal dementia (FTD) and explore development in QOL over a two-year period.MethodsEighty-eight family carers of community-dwelling people with young-onset AD (n = 50) and FTD (n = 38) recruited from Nordic memory clinics. Carer QOL was assessed using the Quality of Life–Alzheimer’s Disease questionnaire. Carer burden was assessed by the Relatives’ Stress scale and depressive symptoms by the Montgomery-Åsberg Depression Rating Scale. Factors associated with QOL in YOD and development in QOL over time were explored with growth mixture model trajectories and mixed model analyses.ResultsWe identified two carer groups of persons with YOD following trajectories with better (n = 53) versus poorer (n = 30) QOL. Carers who reported more burden at baseline had greater odds of belonging to the poorer QOL group (OR 1.1 (1.0–1.2), p = 0.004). Analyses of the development in QOL showed a significant decline in QOL–AD scores among the AD-carers from baseline to two-year follow-up (p = 0.044), while the score remained stable among the FTD-carers. The FTD-carer group had significantly higher mean QOL–AD scores at one- and two-year follow-up (p = 0.022 and 0.045, respectively). However, the difference between the two groups regarding time trend was non-significant. Poorer QOL was associated with increased carer burden (p = 0.01), more depressive symptoms (p = 0.024), and being male carer (p = 0.038).ConclusionHigher care burden, more depressive symptoms, and being a male carer was associated with poorer QOL in family carers for persons with YOD. Carers of persons with AD may experience greater challenges in preserving QOL compared to carers of persons with FTD.

ANMCO/FADOI/SIAARTI/SIC/SIMG/SIMI/SIMEU consensus document: The clinical care pathway of acute heart failure patients from symptom onset to discharge from the emergency department

Acute heart failure (AHF) represents a relevant burden for emergency departments worldwide. AHF patients have markedly worse long-term outcomes than patients with other acute cardiac diseases (e.g. acute coronary syndromes); mortality or readmissions rates at 3 months approximate 33%, whereas 1-year mortality from index discharge ranges from 25% to 50%.The multiplicity of healthcare professionals acting across the care pathway of AHF patients represents a critical factor, which generates the need for integrating the different expertise and competence of general practitioners, emergency physicians, cardiologists, internists, and intensive care physicians to focus on care goals able to improve clinical outcomes.This consensus document results from the cooperation of the scientific societies representing the different healthcare professionals involved in the care of AHF patients and describes shared strategies and pathways aimed at ensuring both high quality care and better outcomes. The document describes the patient journey from symptom onset to the clinical suspicion of AHF and home management or referral to emergency care and transportation to the hospital, through the clinical diagnostic pathway in the emergency department, acute treatment, risk stratification and discharge from the emergency department to ordinary wards or home. The document analyzes the potential role of a cardiology fast-track and Observation Units and the transition to outpatient care by general practitioners and specialist heart failure clinics.The increasing care burden and complex problems generated by AHF are unlikely to be solved without an integrated multidisciplinary approach. Efficient networking among emergency departments, intensive care units, ordinary wards and primary care settings is crucial to achieve better outcomes. Thanks to the joint effort of qualified scientific societies, this document aims to achieve this goal through an integrated, shared and applicable pathway that will contribute to a homogeneous care management of AHF patients across the country.

The Clinical Benefit and Care Burden of Extending the Window of Endovascular Thrombectomy for Stroke in the Emergency Room.

Background and PurposeThe recent successes of the DAWN and DEFUSE 3 trials have extended the therapeutic time window for endovascular treatment (EVT). Accordingly, an increased care burden and clinical benefit for patients with acute stroke in the emergency room are expected. It is necessary to evaluate and respond to these changes in order to provide the best care to patients.MethodsData of patients with acute stroke or transient ischemic attack treated at Seoul National University Hospital between October 2010 and September 2016 were reviewed. To estimate the increased workload associated with the revised guidelines, clinical candidates of acute stroke based on the initial history and examination findings and eligible patients for early stroke intervention were selected. Additionally, the data of eligible patients who received EVT more than 6 hours after the onset were reviewed.ResultsThe serial addition of intravenous thrombolysis, EVT within 6 hours, and EVT beyond 6 hours to the guidelines resulted in 506 (19.8%), 588 (23.0%), and 718 (28.0%) clinical candidates, respectively, and 329 (12.8%), 365 (14.3%), and 389 (15.2%) eligible patients out of 2,561 patients with stroke. Compared to applying the previous stroke guidelines, the number of clinical candidates increased by 130 (22.1%), whereas the number of eligible patients for early stroke intervention increased by only 24 (6.6%). Seven of the 24 eligible patients received off-label EVT and showed significantly improved neurological outcomes at discharge.ConclusionsNotwithstanding the small number of subjects in this study, providing EVT to eligible patients beyond 6 hours may improve their neurological outcomes.

Association between changes in the use of psychotropic drugs and behavioural and psychological symptoms of dementia over 1 year among long‐term care facility residents

Pharmacological treatments are often used in treating the behavioural and psychological symptoms of dementia (BPSD) in nursing homes, despite the fact that non-pharmacological treatments are recommended as a first-line treatment and can provide a suitable alternative. Because the course of BPSD is known to fluctuate depending on individual symptoms over time, the frequencies of drug use and BPSD, as well as their association, should be observed over a longer period. We investigated the association between the changes in psychotropic drug (PD) use and BPSD, focusing on the number of symptoms, severity, and care burden over 1 year among long-term care facility residents. A 1-year follow-up study was conducted among older residents with dementia or similar symptoms (n = 312 at baseline; n = 237 at follow-up) by using a care staff questionnaire in 10 long-term care facilities in Hokkaido, Japan. Medication use was determined based on prescription information. The brief questionnaire form of the Neuropsychiatric Inventory was used to assess BPSD. Among residents followed up for 1 year, new users of PD-particularly anxiolytics and hypnotics-had a significantly increased number and severity of BPSD, compared with non-PD users. Continuing PDs was also related to increased severity over the year. Among residents with any persistent BPSD for 1 year, new use of PDs-particularly anxiolytics and hypnotics-was significantly associated with an increased care burden of BPSD, compared with the non-use of PDs. The discontinuation of PDs was significantly associated with a decreased care burden, compared with the non-use of PDs. Our study suggests that PDs, particularly anxiolytics and hypnotics, may be prescribed carefully in response to exacerbation of BPSD in terms of the number of symptoms, severity, and care burden in long-term care facilities. Continuous monitoring of PDs use and BPSD is important to effectively address BPSD.

A Theoretical Model of Resource-Oriented Music Therapy with Informal Hospice Caregivers during Pre-Bereavement.

Over the past decade, caregiver pre-bereavement has received increased scholarly and clinical attention across multiple healthcare fields. Pre-bereavement represents a nascent area for music therapy to develop best practices in and an opportunity to establish clinical relevancy in the interdisciplinary team. This study was an exploratory inquiry into the role of music therapy with pre-bereaved informal hospice caregivers. This study intended to articulate (a) what pre-bereavement needs are present for informal hospice caregivers, (b) which of those needs were addressed in music, and (c) the process by which music therapy addressed those needs. A constructivist grounded theory methodology using situational analysis was used. We interviewed 14 currently bereaved informal hospice caregivers who had participated in music therapy with the care recipient. Analysis resulted in a theoretical model of resource-oriented music therapy promoting caregiver resilience. The resource, caregivers' stable caring relationships with care recipients through their pre-illness identities (i.e., spouse, parent, or child), is amplified through music therapy. Engagement with this resource mediates the risk of increased care burden and results in resilience fostering purposefulness and value in caregiving. Resource-oriented music therapy provides a unique clinical avenue for supporting caregivers through pre-bereavement, and was acknowledged by caregivers as a unique and integral hospice service. Within this model, caregivers are better positioned to develop meaning from the experience of providing care through the death of a loved one.

Carer perception of palliative care service at Provincial General Hospital, Ratnapura

Introduction: Palliative care improves quality of care for patients with life threatening illnesses and their families. It is common for families and, less often, friends to willingly take on the role of informal carer, even though this is often at considerable psychological, physical, social, and financial cost to themselves. Objectives: To describe carer perception towards the Palliative Care Service in Provincial General Hospital, Ratnapura. Methods: Palliative care services were provided at the Hospital for 172 patients from June 2014 to August 2016. We conducted a qualitative study to understand carer perceptions towards this new service. Semi-structured telephone interviews were conducted using qualitative research methods among 22 carers of patients who have obtained this service for over 3 months. These interviews were conducted with the aid of a preformed interviewer guide based on themes, satisfaction towards palliative care services, benefits received through the service and difficulties faced in caring for the ill person. All interviews were transcribed and analysed qualitatively using open explorative thematic coding. Results: Mean age of the carers was 44.9 years (SD 11.1), 63.6% (n=14) were females, majority (50%) were educated up to O/L, duration of care giving in the majority (50%) was 6-12 months, majority of the care givers were a child of the patient (50%). Mean age of patients was 63 years (SD 11), majority had malignancies (68.1%, n=15), and approximately half had 1-2 comorbidities. Majority stated that the palliative care service listened to and understood the needs of the patients, that adequate information and education was Opportunity was provided to share our views and worries, and talk about our roles as carers, and support was provided. Majority were highly satisfied with the service. Benefits obtained through the service were, patients could be cared for in their own homes with family members, and patients had comfortable and peaceful death. Special advice and guidance provided was beneficial to improve the physical and psychological state of patients and carers, such as pain relief, improved sleep, appetite and feeding. Carers were able to understand the disease prognosis and pre-plan to fulfil patient expectations. Some patients also received assistive devices through the service which greatly benefitted them. The service was also able to avoid frequent hospital admissions, arrange hospice care when needed, and arranged financial assistance. Difficulties faced in caring for the patient included loss of job and occupation, financial difficulties, hardships in transporting patients from home to hospital, having to travel long distances, poor support from some family members in caring for the patient which increased carer burden, and children’s schooling and education being adversely affected. Conclusions: The majority of carers were satisfied with the service provided and perceived benefit from the Palliative Care Service provided by Provincial General Hospital, Ratnapura.