scholarly journals SUPPORTIVE CARE NEEDS PADA KELUARGA PASIEN STROKE DI KLINIK SYARAF BANJARMASIN, INDONESIA

2017 ◽  
Vol 5 (2) ◽  
pp. 107
Author(s):  
Agianto Agianto ◽  
Herry Setiawan
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Long Term Care ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Term Care ◽  
Care And Support ◽  
Psychosocial Domain

ABSTRAKKematian dan morbiditas banyak disebabkan oleh stroke. Di ASEAN, stroke penyebab utama kematian keempat dan Indonesia nomor satu. Kalimantan Selatan merupakan empat besar untuk prevalensi di Indonesia. Pasien stroke memerlukan perawatan jangka panjang di rumah dan kualitas hidup mereka baik jika mendapat perawatan dan dukungan yang tepat dari caregiver. Sehingga kualitas hidup caregiver juga perlu diperhatikan. Tujuan penelitian ini untuk mengetahui supportive care needs pada keluarga pasien stroke saat merawat di rumah. Penelitian deskriptif digunakan di klinik syaraf, dengan 112 responden dan menggunakan kuesioner. Analisa data adalah distribusi frekuensi. Hasil penelitian ini supportive care needs pada caregivers di masyarakat berada pada tingkat sedang (100%, n = 112); Dengan domain emosional (27.11 ± 8,47), domain psikososial (26,84 ± 6,36), domain informasi (23,74 ± 4,20), domain praktek (16,3 ± 4,24), domain spiritual (6,43 ± 1,30), dan domain fisik (3,06 ± 1,17). Perawat di komunitas perlu memperbaiki kualitas dan sistem perawatan kesehatan untuk membantu caregiver dalam merawat pasien dengan perawatan jangka panjang.Kata-kata kunci: keluarga pasien stroke; komunitas; supportive care needs.ABSTRACTMortality and morbidity were caused by stroke. In ASEAN, stroke is the fourth leading and Indonesia is number one. South Kalimantan is the top four for high prevalence in Indonesia. Stroke patients require long-term care at their home and their quality of life will be good if they get the appropriate long-term care and support from caregivers. Quality of life of caregivers also need to be considered. The purpose of study was to determine the supportive care needs of stroke caregivers when take care at home. A descriptive study used at neurological clinic, with 112 caregivers, and using questionnaire. Data analysis used frequency distribution. The results showed that the supportive care needs among stroke caregivers in the community is at a moderate level (100%, n = 112); with emotional domain (27.11 ± 8.47), psychosocial domain (26.84 ± 6.36), informational domain (23.74 ± 4.20), practice domain (16.3 ± 4.24), spiritual domain (6.43 ± 1.30), and physical domain (3.06 ± 1.17). Nurses in the community need to improve the quality and the health care system to help stroke caregivers in taking care for long term. Keywords: community; stroke caregiver; supportive care needs

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi189
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-WIlliam ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

scholarly journals 106 - Environmental Influences on the Cognitive and Psychological Well Being of Older Adults with Dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 15-16
Author(s):  
William E. Reichman ◽  
L. Bradford Perkins ◽  
Hilde Verbeek
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Physical Environment ◽  
Culture Change ◽  
Long Term Care ◽  
Small Scale ◽  
Term Care

This symposium will review the latest data on the influence of environmental design and its attributes on the cognitive and psychological wellbeing of older adults living with dementia. The presenters will cover the myriad ways in which the physical environment of care can adapt to the changing demands of older adults with sensory, motor and cognitive deficits and foster optimal functioning and quality of life. The role of emerging technologies will also be reviewed as they complement the contribution of the design of the physical environment to the wellbeing of older adults with cognitive impairment. Information will be offered through a review of the existing research literature as well as case studies that illustrate the impact of environmental modification on fostering wellbeing and minimizing the emergence of the behavioral and psychological symptoms of dementia. The presenters will represent and integrate sensibilities that have emerged from the fields of architecture, cognitive neuroscience and psychology.How the Principles of the Culture Change Movement Inform Environmental Design and the Application of Technology in the Care of Older Adults Living with DementiaWilliam E. ReichmanThe culture change movement informs a number of principles that have been applied to more contemporary design concepts for the congregate care of older adults living with dementia. This talk will review the core tenets of the Culture Change Movement as exemplified by the Greenhouse, Dementia Village and other innovative models of congregate long-term care. Specific reference will be made to how these tenets have been operationalized around the world into the design of programming and the creation of residential care environments that foster a better quality of life for older adults and an enhanced work environment for care providers. This talk will also include the emerging role of technologies that complement innovative design of the environment and which foster optimized social and recreational functioning of older adults living with dementia.A Better Life Through a Better Nursing Home DesignL. Bradford PerkinsOver the last 20 years there has been extensive experimentation related to the role of the environment in the housing, care and treatment of persons with Alzheimer’s and other age related dementias. Prior to that time the typical housing and care environment was a locked unit in a skilled nursing or other restrictive senior living facility. In 1991 the Presbyterian Association on Aging in Western Pennsylvania opened Woodside Place on its Oakmont campus. This small 36 bed facility was designed to incorporate the latest research and care experience with persons suffering from these issues. This one small project, as well as the long post occupancy research led by Carnegie Mellon University, clearly demonstrated that individuals with Alzheimer’s and related forms of dementia could lead a healthier, happier, higher quality of life in a more residential, less restrictive environment. Not everything in this pioneering project worked, and five generations of living and care models have followed that have refined the ideas first demonstrated by Woodside Place. Bradford Perkins, whose firm designed Woodside Place and over 100 other related projects, will discuss what was learned from Woodside Place as well as the five generations of projects (and post occupancy research) that followed.Innovative dementia care environments as alternatives for traditional nursing homes: evidence and experiences from the NetherlandsHilde VerbeekKey goals of the dementia care environment focus on increasing autonomy, supporting independence and trying to enable one’s own lifestyle for as long as possible. To meet these goals, innovative, small-scale and homelike care environments have been developed that have radically changed the physical, social and organizational aspects of long-term care in the Netherlands. This presentation discusses various Dutch models that have implemented small-scale and homelike care environments, including green care farms, dementia village and citizen initiatives. The models reflect a common care concept, focusing on residents’ remaining strengths, providing opportunity for choice and aiming to sustain a sense of self and control. A small number of residents (usually 6 to 8) live together in a homelike environment and nursing staff are part of the household. Residents are encouraged to participate in daily household activities, emphasizing normalization of daily life with person-centred care. The physical environment resembles an archetypal home. This talk presents the scientific evidence on the impact and effects of these small-scale, homelike models on residents, their family caregivers and staff. Furthermore, the presentation will highlight working approaches and how these initiatives have positively influenced routine care across the long-term care spectrum.

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

scholarly journals Older People in Long-Term Care Institutions: A Case of Multidimensional Social Exclusion

2021 ◽  
pp. 297-309
Author(s):  
Feliciano Villar ◽  
Rodrigo Serrat ◽  
Annette Bilfeldt ◽  
Joe Larragy
Keyword(s):  
Quality Of Life ◽  
Older People ◽  
Social Relationships ◽  
Support Services ◽  
Long Term Care ◽  
Models Of Care ◽  
Term Care ◽  
The Impact

AbstractLiving in a long-term care (LTC) institution provides older people experiencing health and social problems with a comprehensive range of support services that address their quality of life. Despite access to such services, challenges arise in relation to their participation in key activities both within and outside the institution. This chapter examines such challenges, reviewing and describing ways to prevent exclusion along various domains, specifically social relationships, civic participation and socio-cultural life. Firstly, we discuss ways in which bio-medical models of care and the quality control systems, which are dominant in LTC services, standardise care, tending to put decisions exclusively in hands of staff, taking away residents’ autonomy, and ultimately curtailing rights and citizenship status. Secondly, we examine how LTC services might prevent such exclusion and promote older people’s participation in at least four respects: (1) prompting and supporting residents’ ability to take decisions on their own care, (2) favouring the maintenance and creation of social relationships, (3) enabling residents’ participation in the activities and management of the institution, and (4) guaranteeing residents’ rights and full access to citizenship. We discuss the impact and limitations of recent initiatives put into practice in these areas of practice.

scholarly journals Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

2016 ◽  
Vol 42 (3-4) ◽  
pp. 186-197 ◽  
Author(s):  
Maartje S. Klapwijk ◽  
Monique A.A. Caljouw ◽  
Marjoleine J.C. Pieper ◽  
Jenny T. van der Steen ◽  
Wilco P. Achterberg
Keyword(s):  
Quality Of Life ◽  
Social Relations ◽  
Long Term Care ◽  
Neuropsychiatric Symptoms ◽  
Pulmonary Diseases ◽  
Severe Dementia ◽  
Cross Sectional ◽  
Term Care

Background: To determine which characteristics are associated with quality of life (QOL) in residents with moderate to very severe dementia in long-term care facilities (LTCFs). Material and Methods: This was a cross-sectional analysis of a cluster randomized controlled study in 12 Dutch LTCFs that enrolled 288 residents, with moderate to severe dementia assessed with the Reisberg Global Deterioration Scale (Reisberg GDS) and QOL with the QUALIDEM. Characteristics that were hypothesized to be associated with the six domains of QOL (applicable to very severe dementia) included demographic variables, activities of daily living (Katz ADL), cognitive performance (Cognitive Performance Scale; CPS), pain (Pain Assessment Checklist for Seniors with Limited Ability to Communicate; PACSLAC-D), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version; NPI-NH) and comorbidities. Results: Multivariate logistic regression modelling showed associations with age in the domain Social isolation [odds ratio, OR, 0.95 (95% confidence interval, CI, 0.91-0.99)], ADL level in the domain Positive affect [OR 0.89 (95% CI 0.83-0.95)] and the domain Social relations [OR 0.87 (95% CI 0.81-0.93)], severity of dementia in the domain Social relations [OR 0.28 (95% CI 0.12-0.62)] and in the domain Social isolation [OR 2.10 (95% CI 1.17-3.78)], psychiatric disorders in the domain Positive affect [OR 0.39 (95% CI 0.17-0.87)] and pulmonary diseases in the domain Negative affect [OR 0.14 (95% CI 0.03-0.61)] of the QUALIDEM. Neuropsychiatric symptoms were independently associated with all six domains of the QUALIDEM [OR 0.93 (95% CI 0.90-0.96) to OR 0.97 (95% CI 0.95-0.99)]. Pain was associated with the domains Care relationship [OR 0.92 (95% CI 0.84-1.00)] and Negative affect [OR 0.92 (95% CI 0.85-1.00)]. Conclusion: QOL in dementia is independently associated with age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms. It is possible to detect persons with dementia at risk for a lower QOL. This information is important for developing personalized interventions to improve QOL in persons with dementia in LTCFs.

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