scholarly journals Caregiver and Palliative Care

2021 ◽  
Author(s):  
Orapan Fumaneeshoat
Keyword(s):  
Risk Factors ◽  
Palliative Care ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Care Patient ◽  
Care Recipient ◽  
Different Types ◽  
Palliative Patient ◽  
Caregiver Burnout

Palliative care aims to improve the quality of life of both the palliative care patient and their caregiver. Palliative care caregivers care for palliative care patients who suffer from symptoms and unmet needs. Most reviews and research to date have focused on the palliative patient, also called the care recipient. However, we still have little knowledge about the palliative care caregivers, including the risk factors of these caregivers becoming overburdened leading to caregiver burnout. The objective of this review was to examine the responsibilities of palliative care caregivers and the associated risks of these caregivers developing caregiver burden. We review the caring work of the caregivers, the types of caregivers, the differences between palliative care and general caregivers, the different types and levels of problems they face in caring for their patients and the risk factors of developing palliative care caregiver burden. We hope this review will increase awareness of this problem and help to improve the palliative care system to look after the needs of not only the patients in the system but also the patients’ caregivers, who play such an important role.

scholarly journals Identifying unmet needs in long-term stroke care using in-depth assessment and the Post-Stroke Checklist – The Managing Aftercare for Stroke (MAS-I) study

2018 ◽  
Vol 3 (3) ◽  
pp. 237-245 ◽  
Author(s):  
Benjamin Hotter ◽  
Inken Padberg ◽  
Andrea Liebenau ◽  
Petra Knispel ◽  
Sabine Heel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Community Dwelling ◽  
Social Needs ◽  
Interquartile Range ◽  
Stroke Patients ◽  
Post Stroke

Introduction Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. Methods We invited long-term stroke patients from two previous acute clinical studies ( n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. Results Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4–12.75) consented to assessment (median 41 months (interquartile range 36–50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1–3), EuroQoL index value was 0.81 (median; interquartile range 0.70–1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity ( p = 0.008) and social needs ( p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood ( p < 0.001), impaired cognition ( p = 0.015), social needs ( p = 0.005) and caregiver burden ( p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). Conclusion These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted. Clinical Trial Registration: clinicaltrials.gov NCT02320994.

scholarly journals Identifying Palliative Care Needs in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 788-788
Author(s):  
Daniel David ◽  
Abraham Brody ◽  
Tina Sadarangani ◽  
Bei Wu ◽  
Tara Cortez
Keyword(s):  
Palliative Care ◽  
Assisted Living ◽  
Unmet Needs ◽  
Care Needs ◽  
Code Status ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care ◽  
Palliative Care Needs

Abstract Many residents of Assisted Living (AL) confront serious illness and therefore might benefit from greater access to Palliative Care Services to improve quality of life. We surveyed resident records and AL nursing staff to identify patients in need of Palliative Care. Preliminary findings showed that nurses predicted 23% would not be alive and 49% would no longer live in AL. A majority of residents were over the age of 90, yet 30% did not have a reported code status. These findings suggest that a substantial portion of AL residents may have unmet needs with respect to palliative care. Future interventions are needed to support advance care planning conversations and make palliative care more accessible to this population.

scholarly journals MODERN METHODS OF TREATMENT IN PALLIATIVE CARE

2019 ◽  
Vol 72 (7) ◽  
pp. 1229-1235
Author(s):  
Ewa Kucharska ◽  
Aleksandra Kucharska ◽  
Aleksander Sieroń ◽  
Mariusz Nowakowski ◽  
Karolina Sieroń
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Hospice Care ◽  
Clinical Symptoms ◽  
Care Patient ◽  
Unique Type ◽  
Modern Methods ◽  
High Dynamics ◽  
Methods Of Treatment

The palliative care patient is definitely a unique type of patient. Due to the complexity of the symptoms requires a holistic therapeutic approach. Modern methods of treatment in palliative and hospice care underline an important role of physio, kinesiotherapy and pharmacological treatment coexistence. The rehabilitation reduces clinical symptoms, accompanying the basic disease and increases the quality of life of palliative patients and their families. It becomes an inseparable element of treatment, both in outpatient care as well as in stationary care and home care. Due to the high dynamics onset of cancer in the group of geriatric patients there is a need for a broader analysis of the topic. The goal of palliative care is to achieve the best possible quality of life for patients and their families.

scholarly journals Development of a modular Decubitus Prophylaxis System: DekuProSys

2019 ◽  
Vol 5 (1) ◽  
pp. 277-279
Author(s):  
Simon Gallinger ◽  
Natalie Jankowski ◽  
Milena Bister ◽  
Sandra Korge ◽  
Astrid Trachterna ◽  
...  
Keyword(s):  
Risk Factors ◽  
Decision Making ◽  
Palliative Care ◽  
Pressure Ulcers ◽  
Interdisciplinary Approach ◽  
Skin Lesions ◽  
Difficult Decision ◽  
Palliative Care Setting ◽  
Care Information

AbstractPressure ulcers (decubiti) are one of the most frequent side effects in the palliative care setting. Terminally ill and dying people have multiple comorbidities resulting in a high risk to develop pressure ulcers. These skin lesions are caused by pressure, friction and shearing forces in combination with several risk factors (e.g. moisture, tissue condition). People of all ages with reduced activity can suffer from decubitus ulcers. In palliative care, the treatment of symptoms to ensure the highest possible quality of life is of primary importance. Ethical controversies and difficult decision-making often lead to uncertainties and burdens for caregivers, patients and relatives. In the DekuProSys project, a decubitus prophylaxis system for inpatient and outpatient palliative care of people of all ages is being developed. The system will assist caregivers in patient care in multiple ways. It will capture and report risk factors for decubitus, assist at decision making and documentation. Furthermore, it will provide care information and instruction if needed. Aiming for an innovative and useful solution, the project follows a user-centered and interdisciplinary approach.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    

scholarly journals Risk Factors of Going Missing in People Living With Dementia: A Scoping Review

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 643-644
Author(s):  
Noelannah Neubauer ◽  
Hector Perez ◽  
Antonio Miguel-Cruz ◽  
Christine Daum ◽  
Samantha Dawn Marshall ◽  
...  
Keyword(s):  
Risk Factors ◽  
Physical Environment ◽  
Geographical Location ◽  
Adverse Outcomes ◽  
Factors Associated ◽  
Care Partners ◽  
Scoping Reviews ◽  
Support Resources ◽  
Different Types

Abstract Critical wandering is common in persons living with dementia, it is defined as wandering that results in an individual going missing. This exposes the missing vulnerable older adult to risks and dangers. Persons with dementia who become lost and go missing and get lost can face adverse outcomes, such as injury and death, yet the amount of information available on the risk factors associated with these incidents is scarce. The aim of this study was to identify the risk factors associated with critical wandering in persons living with dementia. We used Tricco et al.’s (2018) approach for scoping reviews and searched the following databases: Medline, EMBASE, CINAHL, and Scopus. We included studies that referred to critical wandering in persons with dementia, cognitive impairment, or Alzheimer, and published since 1980. We identified 3,376 publications, which was reduced to 1641 publications after we removed duplications. A total of 78 studies met the inclusion and exclusion criteria for analysis and extraction. A rigorous process to synthesize and categorize the research evidence was followed. We identified four different types of risk factors associated with going missing: (1) personal, (2) physical environment and geographical location, (3) cultural environment, and (4) social environment and support resources. Recognition of these risk factors can help persons living with dementia and their care partners identify interventions and proactive strategies to mitigate or prevent critical wandering. This will support persons with dementia, their care partners, and community organizations to balance safety, autonomy, and independence to maximize quality of life.

scholarly journals Risk Factors for Delirium in the Palliative Care Population: A Systematic Review and Meta-Analysis

2021 ◽  
Vol 12 ◽  
Author(s):  
Duan Guo ◽  
Taiping Lin ◽  
Chuanyao Deng ◽  
Yuxia Zheng ◽  
Langli Gao ◽  
...  
Keyword(s):  
Risk Factors ◽  
Systematic Review ◽  
Palliative Care ◽  
Group Performance ◽  
Meta Analysis ◽  
Performance Status ◽  
Eastern Cooperative Oncology Group ◽  
Individual Risk ◽  
Case Control Studies

Objective: Delirium is common and highly distressing for the palliative care population. Until now, no study has systematically reviewed the risk factors of delirium in the palliative care population. Therefore, we performed a systematic review and meta-analysis to evaluate delirium risk factors among individuals receiving palliative care.Methods: We systematically searched PubMed, Medline, Embase, and Cochrane database to identify relevant observational studies from database inception to June 2021. The methodological quality of the eligible studies was assessed by the Newcastle Ottawa Scale. We estimated the pooled adjusted odds ratio (aOR) for individual risk factors using the inverse variance method.Results: Nine studies were included in the review (five prospective cohort studies, three retrospective case-control studies and one retrospective cross-section study). In pooled analyses, older age (aOR: 1.02, 95% CI: 1.01–1.04, I2 = 37%), male sex (aOR:1.80, 95% CI: 1.37–2.36, I2 = 7%), hypoxia (aOR: 0.87, 95% CI: 0.77–0.99, I2 = 0%), dehydration (aOR: 3.22, 95%CI: 1.75–5.94, I2 = 18%), cachexia (aOR:3.40, 95% CI: 1.69–6.85, I2 = 0%), opioid use (aOR: 2.49, 95%CI: 1.39–4.44, I2 = 0%), anticholinergic burden (aOR: 1.18, 95% CI: 1.07–1.30, I2 = 9%) and Eastern Cooperative Oncology Group Performance Status (aOR: 2.54, 95% CI: 1.56–4.14, I2 = 21%) were statistically significantly associated with delirium.Conclusion: The risk factors identified in our review can help to highlight the palliative care population at high risk of delirium. Appropriate strategies should be implemented to prevent delirium and improve the quality of palliative care services.

scholarly journals Social support and unmet social needs in life after stroke: a cross-sectional observational study

2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Social Needs ◽  
Stroke Patients ◽  
Cross Sectional ◽  
Degree Of Disability

Abstract Background: Stroke patients are often affected by long-term disabilities with needs concerning social issues. There is relatively little consideration of social recovery of patients and the support required to return to work, receive social benefits, participate in daily life activities, maintain contact with family and friends and to organize financial affairs. In our study we aimed to investigate if existing tools record social needs adequately. We analyzed the current provision of social support provided in long-term care after stroke and whether unmet social needs were associated with quality of life, caregiver burden, overall function and degree of disability. Methods: Our analysis is part of the Managing Aftercare of Stroke study (MAS-I), a cross-sectional observational study of patient needs 2-3 years after initial stroke. Assessment tools included the Nikolaus-score (social situation), the EuroQoL (quality of life), the German Burden Scale for Family Caregivers (caregiver burden), the modified Rankin Scale (disability / dependence), Stroke Impact Scale (function and degree of disability) and the Stroke Survivor Needs Questionnaire (unmet needs). Results: Overall 57 patients were included in MAS-I, with ten patients classified in urgent need of socio-economic support according to the Nikolaus-score. Patients with lower than normal Nikolaus-score had a higher degree of disability. Thirty percent of all patients had never received professional social support. Social worker contact happened mostly during the stay in acute hospital or rehabilitation institution. Only four patients (11%) reported long-term support after discharge. Apart from social worker contact during acute care, 43% of patients had unmet needs in the long-term aftercare. Forty percent of all patients included in MAS-I were recommended for social work intervention after an in-depth analysis of their situation. Finally, we saw that unmet social needs were associated with lower quality of life and higher caregiver burden. Conclusions: Our data suggest significant unmet needs in social care in long-term stroke patients. Screening tools for unmet social needs such as the Nikolaus-score do not holistically report patients’ needs.

Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes

2020 ◽  
Vol 34 (3) ◽  
pp. 358-366 ◽  
Author(s):  
Anna Collins ◽  
Jodie Burchell ◽  
Cheryl Remedios ◽  
Kristina Thomas
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Psychological Distress ◽  
Unmet Needs ◽  
Support Needs ◽  
Cross Sectional ◽  
Paediatric Palliative Care ◽  
Practical Support ◽  
Limiting Condition

Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. Setting/participants: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life ( r = –.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support. Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.

scholarly journals Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient’s Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers

2020 ◽  
Vol 17 (15) ◽  
pp. 5457 ◽  
Author(s):  
Doris Y. P. Leung ◽  
Helen Y. L. Chan ◽  
Patrick K. C. Chiu ◽  
Raymond S. K. Lo ◽  
Larry L. Y. Lee
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Palliative Care ◽  
Caregiver Burden ◽  
Indirect Effect ◽  
Self Efficacy ◽  
Care Needs ◽  
Positive Direct ◽  
Palliative Care Needs

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient’s quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient’s quality of life. A convenience sample of 225 patient–caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did (p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient’s quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient’s quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient’s quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient’s quality of life.

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