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1.
Proc Natl Acad Sci U S A ; 121(32): e2310081121, 2024 Aug 06.
Artículo en Inglés | MEDLINE | ID: mdl-39074290

RESUMEN

California faces several serious direct and indirect climate exposures that can adversely affect public health, some of which are already occurring. The public health burden now and in the future will depend on atmospheric greenhouse gas concentrations, underlying population vulnerabilities, and adaptation efforts. Here, we present a structured review of recent literature to examine the leading climate risks to public health in California, including extreme heat, extreme precipitation, wildfires, air pollution, and infectious diseases. Comparisons among different climate-health pathways are difficult due to inconsistencies in study design regarding spatial and temporal scales and health outcomes examined. We find, however, that the current public health burden likely affects thousands of Californians each year, depending on the exposure pathway and health outcome. Further, while more evidence exists for direct and indirect proximal health effects that are the focus of this review, distal pathways (e.g., impacts of drought on nutrition) are more uncertain but could add to this burden. We find that climate adaptation measures can provide significant health benefits, particularly in disadvantaged communities. We conclude with priority recommendations for future analyses and solution-driven policy actions.


Asunto(s)
Cambio Climático , Salud Pública , Humanos , California , Poblaciones Vulnerables/estadística & datos numéricos , Contaminación del Aire/análisis , Contaminación del Aire/efectos adversos , Exposición a Riesgos Ambientales/efectos adversos , Incendios Forestales
2.
Radiographics ; 44(7): e230176, 2024 07.
Artículo en Inglés | MEDLINE | ID: mdl-38900682

RESUMEN

Fungal musculoskeletal infections often have subacute or indolent manifestations, making it difficult to distinguish them from other diseases and infections, given that they are relatively uncommon. Fungal infections occur by hematogenous spread, direct inoculation, or contiguous extension and may be related to different risk factors, including immunosuppression and occupational activity. The infection can manifest in isolation in the musculoskeletal system or as part of a systemic process. The fungi may be endemic to certain regions or may be found throughout the world, and this can help to narrow the diagnosis of the etiologic agent. Infections such as candidiasis, cryptococcosis, aspergillosis, and mucormycosis are often related to immunosuppression. On the other hand, histoplasmosis, paracoccidioidomycosis, coccidioidomycosis, and blastomycosis can occur in healthy patients in geographic areas where these infections are endemic. Furthermore, infections can be classified on the basis of the site of infection in the body. Some subcutaneous infections that can have osteoarticular involvement include mycetoma, sporotrichosis, and phaeohyphomycosis. Different fungi affect specific bones and joints with greater prevalence. Imaging has a critical role in the evaluation of these diseases. Imaging findings include nonspecific features such as osteomyelitis and arthritis, with bone destruction, osseous erosion, mixed lytic and sclerotic lesions, and joint space narrowing. Multifocal osteomyelitis and chronic arthritis with joint effusion and synovial thickening may also occur. Although imaging findings are often nonspecific, some fungal infections may show findings that aid in narrowing the differential diagnosis, especially when they are associated with the patient's clinical condition and history, the site of osteoarticular involvement, and the geographic location. ©RSNA, 2024.


Asunto(s)
Micosis , Humanos , Micosis/diagnóstico por imagen , Diagnóstico Diferencial , Enfermedades Musculoesqueléticas/diagnóstico por imagen
3.
Int J Geriatr Psychiatry ; 39(5): e6103, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38761159

RESUMEN

OBJECTIVES: Cognitive impairment, pain and depressive symptoms are common and interrelated factors in older adults. However, the directionality and specificity of their association remains unclarified. This study explored whether these factors prospectively increase reciprocal risk and examined the longitudinal association between these factors and quality of life (QoL). METHODS: This study used longitudinal data from The Older Persons and Informal Caregivers Survey Minimal Data Set (TOPICS-MDS; the Netherlands). Older adults self-reported cognitive impairment, pain, depressive symptoms and QoL at baseline and after 6 and 12 months of follow-up. The Random Intercept Cross-Lagged Panel Model was used to assess the prospective association between the three factors, while a multilevel linear regression analysis in a two-level random intercept model was used to examine the longitudinal associations between the three factors and QoL at the within-person level. RESULTS: The data of 11,582 home-dwelling older adults with or without subjective cognitive impairment were analysed. At the within-person level, pain at 6 months was associated with subsequent depressive symptoms (ß = 0.04, p = 0.024). The reverse association from depression to pain, and longitudinal associations between pain and subjective cognitive impairment and between depressive symptoms and subjective cognitive impairment were non-significant. Pain, depressive symptoms and subjective cognitive impairment showed a significant association with poor QoL 6 months later. CONCLUSIONS: A directional relationship was observed from pain to depressive symptoms. Pain reduction holds a potential benefit in the prevention of depressive symptoms, ultimately optimising the QoL of older adults.


Asunto(s)
Disfunción Cognitiva , Dolor , Calidad de Vida , Humanos , Anciano , Masculino , Femenino , Estudios Longitudinales , Anciano de 80 o más Años , Calidad de Vida/psicología , Países Bajos/epidemiología , Dolor/psicología , Disfunción Cognitiva/psicología , Disfunción Cognitiva/epidemiología , Depresión/psicología , Depresión/epidemiología , Vida Independiente , Trastorno Depresivo/epidemiología , Trastorno Depresivo/psicología , Estudios Prospectivos
4.
Palliat Med ; 38(4): 457-470, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38634232

RESUMEN

BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/PARTICIPANTS: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. RESULTS: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. CONCLUSION: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.


Asunto(s)
Planificación Anticipada de Atención , Demencia , Humanos , Cuidados Paliativos , Consenso , Objetivos , Técnica Delphi
5.
BMC Geriatr ; 24(1): 290, 2024 Mar 27.
Artículo en Inglés | MEDLINE | ID: mdl-38539079

RESUMEN

BACKGROUND: Dementia is often associated with Neuropsychiatric Symptoms (NPS) such as agitation, depression, hallucinations, anxiety, that can cause distress for the resident with dementia in long-term care settings and can impose emotional burden on the environment. NPS are often treated with psychotropic drugs, which, however, frequently cause side effects. Alternatively, non-pharmacological interventions can improve well-being and maintain an optimal quality of life (QoL) of those living with dementia. Other QoL related outcomes, such as pain, discomfort and sleep disruption are relevant outcomes in music trials as well. Music therapy is a non-pharmacological intervention that can reduce NPS and improve well-being, and its associated symptoms in dementia. METHODS: The research will be conducted at eight nursing home facilities of a health care organization in the Netherlands. A sample size of 30 in each group (experimental and control group) is required, totalling 60 residents increased to 80 when considering expected drop out to follow up. The participants in the intervention group receive 30 min of individual music therapy (MT) in their own room by a music therapist twice a week for 12 weeks. The participants in the control group will receive 30 min of individual attention in their own room by a volunteer twice a week for 12 weeks. Assessments will be done at baseline, 6 weeks and 12 weeks. An independent observer, blinded for the intervention or control condition, will assess directly observed well-being (primary outcome) and pain (secondary outcome) before and after the sessions. Nurses will assess other secondary outcomes unblinded, i.e., perceived quality of life and NPS, both assessed with validated scales. The sleep duration will be indirectly assessed by a wrist device called MotionWatch. Information about psychotropic drug use will be derived from electronic medical chart review. DISCUSSION: The main purpose of this study is to assess the effects of individual music therapy on directly observed well-being controlled for individual attention in nursing home residents with dementia with NPS. The outcomes refer to both short-term and long-term effects consistent with therapeutic goals of care for a longer term. We hope to overcome limitations of previous study designs such as not blinded designs and music facilitators that were not only music therapists but also occupational therapists and nurses. This study should lead to more focused recommendations for practice and further research into non-pharmacological interventions in dementia such as music therapy. TRIAL REGISTRATION: The trial is registered at the International Clinical Trials Registry Platform (ICTRP) search portal in the Netherlands Trial Registration number NL7708, registration date 04-05-2019.


Asunto(s)
Demencia , Musicoterapia , Música , Humanos , Calidad de Vida , Demencia/psicología , Casas de Salud , Dolor , Ensayos Clínicos Controlados Aleatorios como Asunto
6.
Skeletal Radiol ; 53(2): 209-244, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37566148

RESUMEN

OBJECTIVE: Direct magnetic resonance arthrography (dMRA) is often considered the most accurate imaging modality for the evaluation of intra-articular structures, but utilization and performance vary widely without consensus. The purpose of this white paper is to develop consensus recommendations on behalf of the Society of Skeletal Radiology (SSR) based on published literature and expert opinion. MATERIALS AND METHODS: The Standards and Guidelines Committee of the SSR identified guidelines for utilization and performance of dMRA as an important topic for study and invited all SSR members with expertise and interest to volunteer for the white paper panel. This panel was tasked with determining an outline, reviewing the relevant literature, preparing a written document summarizing the issues and controversies, and providing recommendations. RESULTS: Twelve SSR members with expertise in dMRA formed the ad hoc white paper authorship committee. The published literature on dMRA was reviewed and summarized, focusing on clinical indications, technical considerations, safety, imaging protocols, complications, controversies, and gaps in knowledge. Recommendations for the utilization and performance of dMRA in the shoulder, elbow, wrist, hip, knee, and ankle/foot regions were developed in group consensus. CONCLUSION: Although direct MR arthrography has been previously used for a wide variety of clinical indications, the authorship panel recommends more selective application of this minimally invasive procedure. At present, direct MR arthrography remains an important procedure in the armamentarium of the musculoskeletal radiologist and is especially valuable when conventional MRI is indeterminant or results are discrepant with clinical evaluation.


Asunto(s)
Artrografía , Imagen por Resonancia Magnética , Humanos , Artrografía/métodos , Radiografía , Imagen por Resonancia Magnética/métodos , Hombro/diagnóstico por imagen , Muñeca
7.
BMC Palliat Care ; 23(1): 78, 2024 Mar 21.
Artículo en Inglés | MEDLINE | ID: mdl-38515049

RESUMEN

BACKGROUND: Discomfort and distressing symptoms are common at the end of life, while people in this stage are often no longer able to express themselves. Technologies may aid clinicians in detecting and treating these symptoms to improve end-of-life care. This review provides an overview of noninvasive monitoring technologies that may be applied to persons with limited communication at the end of life to identify discomfort. METHODS: A systematic search was performed in nine databases, and experts were consulted. Manuscripts were included if they were written in English, Dutch, German, French, Japanese or Chinese, if the monitoring technology measured discomfort or distressing symptoms, was noninvasive, could be continuously administered for 4 hours and was potentially applicable for bed-ridden people. The screening was performed by two researchers independently. Information about the technology, its clinimetrics (validity, reliability, sensitivity, specificity, responsiveness), acceptability, and feasibility were extracted. RESULTS: Of the 3,414 identified manuscripts, 229 met the eligibility criteria. A variety of monitoring technologies were identified, including actigraphy, brain activity monitoring, electrocardiography, electrodermal activity monitoring, surface electromyography, incontinence sensors, multimodal systems, and noncontact monitoring systems. The main indicators of discomfort monitored by these technologies were sleep, level of consciousness, risk of pressure ulcers, urinary incontinence, agitation, and pain. For the end-of-life phase, brain activity monitors could be helpful and acceptable to monitor the level of consciousness during palliative sedation. However, no manuscripts have reported on the clinimetrics, feasibility, and acceptability of the other technologies for the end-of-life phase. CONCLUSIONS: Noninvasive monitoring technologies are available to measure common symptoms at the end of life. Future research should evaluate the quality of evidence provided by existing studies and investigate the feasibility, acceptability, and usefulness of these technologies in the end-of-life setting. Guidelines for studies on healthcare technologies should be better implemented and further developed.


Asunto(s)
Cuidado Terminal , Humanos , Comunicación , Muerte , Dolor , Reproducibilidad de los Resultados
8.
J Adv Nurs ; 2024 Jun 24.
Artículo en Inglés | MEDLINE | ID: mdl-38923055

RESUMEN

AIMS: To describe the co-creation of the 'Desired Dementia Care Towards End of Life' (DEDICATED) approach to improve person-centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation. METHODS: A needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co-created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi-structured interviews with actively engaged professionals were analysed using Conventional Content Analysis. RESULTS: The needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co-creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones. CONCLUSION: Co-creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person-centred palliative dementia care. IMPACT STATEMENT: This study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: The developed approach can improve person-centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones. REPORTING METHOD: This study used the Consolidated Criteria for Reporting Qualitative Research. PATIENT OF PUBLIC CONTRIBUTION: No patient or public contribution.

9.
Alzheimers Dement ; 20(2): 1309-1320, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37985444

RESUMEN

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.


Asunto(s)
Planificación Anticipada de Atención , Demencia , Cuidado Terminal , Humanos , Consenso , Técnica Delphi , Demencia/terapia
10.
Death Stud ; : 1-11, 2024 Jul 25.
Artículo en Inglés | MEDLINE | ID: mdl-39052438

RESUMEN

This study examines the reasons of people with dementia request euthanasia and how these reasons change over time with a special focus on reasons related to family. In addition, it examines how family relates to their loved one's euthanasia wish. Seven people with dementia and a euthanasia wish in the Netherlands were interviewed, and three years later, two of them and five family members were interviewed again. Four themes were identified using thematic analyses: (1) Protecting the relationship from the impact of dementia; (2) Private domain as the primary setting to discuss euthanasia; (3) Implicit expectation to respect and agree with the euthanasia wish; (4) Experienced responsibilities of family regarding the euthanasia wish. Professionals should be aware of the position of family and the interrelatedness of the person's concern for family happiness and families' moral commitment to agree and support the wish.

11.
Geriatr Nurs ; 60: 59-69, 2024 Aug 31.
Artículo en Inglés | MEDLINE | ID: mdl-39217843

RESUMEN

This exploratory interview study investigated nursing staff members' perspectives on the fundamentals of end-of-life communication with older people as part of advance care planning in home care, nursing home, and hospital settings. Separate semi-structured interviews were conducted with 17 nursing staff members about their experiences, opinions, and preferences before, during, and after end-of-life conversations. Overall themes clustering the fundamentals include preconditions such as feeling comfortable talking about the end of life and creating space for open communication. Fundamentals related to the actual conversation-such as using senses and applying associative communication techniques (e.g., using understandable language), following conversation phases, and being aware of interprofessional collaboration-were also considered important. This study emphasizes the importance of moving along with the older person as well as connecting, adapting, and letting go of control over the conversation's outcome. Many fundamentals can be traced back to the basics of nursing and the humanity of conversation.

12.
Age Ageing ; 52(3)2023 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-36861181

RESUMEN

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.


Asunto(s)
Planificación Anticipada de Atención , Demencia , Humanos , Cuidadores , Canadá , Casas de Salud , Demencia/diagnóstico , Demencia/terapia
13.
Gerontology ; 69(7): 866-874, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36754032

RESUMEN

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.


Asunto(s)
Disfunción Cognitiva , Demencia , Humanos , Anciano , Disfunción Cognitiva/terapia , Disfunción Cognitiva/psicología , Apoyo Social , Adaptación Psicológica , Demencia/psicología
14.
BMC Palliat Care ; 22(1): 54, 2023 May 03.
Artículo en Inglés | MEDLINE | ID: mdl-37138329

RESUMEN

BACKGROUND: As Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care. OBJECTIVE: To review the literature focusing on palliative care in advanced stage HD, and the level of evidence. METHODS: Publications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) - V (low) were determined as defined by the Joanna Briggs Institute. RESULTS: Our search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III). CONCLUSIONS: To deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient's wishes and needs.


Asunto(s)
Planificación Anticipada de Atención , Enfermería de Cuidados Paliativos al Final de la Vida , Enfermedad de Huntington , Niño , Humanos , Cuidados Paliativos/métodos , Enfermedad de Huntington/terapia , Muerte
15.
BMC Palliat Care ; 22(1): 142, 2023 Sep 27.
Artículo en Inglés | MEDLINE | ID: mdl-37752467

RESUMEN

BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.


Asunto(s)
Comparación Transcultural , Demencia , Humanos , Anciano , Estudios Transversales , Proyectos Piloto , Muerte , Demencia/terapia
16.
Pain Manag Nurs ; 24(4): e68-e74, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37100703

RESUMEN

BACKGROUND: Post-stroke pain in patients with an inability to communicate is not systematically assessed and therefore not sufficiently treated. This stresses the need to study pain assessment instruments that do not require good communication skills. AIM: To examine the validity and reliability of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D) in stroke patients with aphasia. METHOD: Sixty stroke patients (mean age 79.3 years, standard deviation [SD] 8.0), of whom 27 had aphasia were observed during rest, activities of daily living (ADL), and physiotherapy using the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D). The observations were repeated after two weeks. To examine convergent validity, correlations between the PACSLAC-D, self-report pain scales, and the clinical judgment of a health care professional (pain present yes/no) were used. To examine discriminative validity, differences in pain were investigated between rest and ADL, in patients who use pain medication and those who do not, and in patients with and without aphasia. Internal consistency and test-retest reliability were assessed to determine reliability. RESULTS: Convergent validity failed to meet the acceptable threshold during rest but was adequate during ADL and physiotherapy. Discriminative validity was only adequate during ADL. The internal consistency was 0.33 during rest, 0.71 during ADL, and 0.65 during physiotherapy. Test-retest reliability varied from poor during rest (intraclass correlation coefficient [ICC] = 0.07; 95% confidence interval [CI]: -0.40-0.51) to excellent during physiotherapy (ICC = 0.95; 95% CI: 0.83-0.98). CONCLUSIONS: The PACSLAC-D captures pain in patients with aphasia who are unable to self-report, during ADL and physiotherapy, but may be less accurate during rest.


Asunto(s)
Afasia , Demencia , Humanos , Anciano , Reproducibilidad de los Resultados , Actividades Cotidianas , Afasia/etiología , Dolor , Psicometría , Encuestas y Cuestionarios
17.
Alzheimers Dement ; 19(8): 3688-3700, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37186445

RESUMEN

OBJECTIVE: To assess how families are involved in situations of euthanasia or physician assisted suicide (PAS) in dementia. DESIGN: Systematic review searching literature in nine databases from inception up to October 2021. We included studies on family involvement in euthanasia from the perspective of persons with dementia and family caregivers. Themes were formulated through thematic analysis. The design was registered at Prospero (CRD42022298215). RESULTS: We assessed 215 of 4038 studies in full text; 19 met the inclusion criteria of which 13 empirical studies. Themes included for people with dementia: being a burden; stage of dementia, and permissibility of euthanasia/PAS. Themes for family were the burden of care, responsibility toward the euthanasia or PAS wish, permissibility of euthanasia/PAS. CONCLUSION: The wish for euthanasia/PAS arises in situations of burdensome care and fear of future deterioration. The family feels entrusted with the responsibility to enact upon the death wish. In shaping this responsibility, four roles of family can be distinguished: carer, advocate, supporter, and performer. Family as in need of support themselves is understudied.


Asunto(s)
Demencia , Eutanasia , Suicidio Asistido , Humanos , Cuidadores
18.
BMC Nurs ; 22(1): 363, 2023 Oct 06.
Artículo en Inglés | MEDLINE | ID: mdl-37803343

RESUMEN

BACKGROUND: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff. OBJECTIVE: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver. DESIGN: Scoping review. METHODS: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review. RESULTS: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills. CONCLUSIONS: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.

19.
Tijdschr Gerontol Geriatr ; 54(2)2023 Jun 11.
Artículo en Holandés | MEDLINE | ID: mdl-37646355

RESUMEN

A booklet was developed in Canada in 2005 to inform family caregivers of people with dementia about end-of-life care. A Dutch version was published in 2011 after evaluation and revision. Developments in research and society call for a second revision. The aim of this study was to map out users' (family caregivers and healthcare professionals) preferences regarding the look and feel, and content of the booklet. To this end, in addition to the current paper booklet, we created a prototype website and app, along with three illustration options. Twenty-one family caregivers and nineteen healthcare professionals completed a questionnaire about their preferences. Open ended questions were analyzed using content analysis, multiple-choice questions using descriptive analysis. The participants valued the question-answer format. They perceived the text as too medically oriented and they expressed a need for more inclusive language and broader information. The participants found images of people suitable for the booklet and they preferred the illustrations to be less focused on the medical context. The participants preferred the paper booklet and a website. By understanding family caregivers' and healthcare professionals' preferences, in the second revision, the booklet can be tailored to the user. It is expected that this tailoring will support informing family caregivers about end-of-life care.


Asunto(s)
Demencia , Cuidado Terminal , Humanos , Cuidadores , Folletos , Atención a la Salud , Demencia/terapia
20.
Epidemiology ; 33(6): 777-787, 2022 11 01.
Artículo en Inglés | MEDLINE | ID: mdl-35895514

RESUMEN

BACKGROUND: Polycyclic aromatic hydrocarbons (PAHs) are endocrine-disrupting chemicals. Few studies have evaluated the association between pubertal development in girls and PAH exposures quantified by urinary biomarkers. METHODS: We examined associations of urinary PAH metabolites with pubertal development in 358 girls 6-16 years of age from the San Francisco Bay Area enrolled in a prospective cohort from 2011 to 2013 and followed until 2020. Using baseline data, we assessed associations of urinary PAH metabolites with pubertal development stage. In prospective analyses limited to girls who at baseline had not yet started breast (N = 176) or pubic hair (N = 179) development or menstruation (N = 267), we used multivariable Cox proportional hazards regression to assess associations of urinary PAH metabolites with the onset of breast and pubic hair development, menstruation, and pubertal tempo (interval between the onset of breast development and menstruation). RESULTS: We detected PAH metabolites in >98% of girls. In cross-sectional analyses using baseline data, PAH metabolites were not associated with the pubertal development stage. In prospective analyses, higher concentrations (≥ median) of some PAH metabolites were associated with two-fold higher odds of earlier breast development (2-hydroxy naphthalene, 1-hydroxy phenanthrene, summed hydroxy phenanthrenes) or pubic hair development (1-hydroxy naphthalene) among girls overweight at baseline (body mass index-for-age percentile ≥85) compared with nonoverweight girls with lower metabolites concentrations. PAH metabolites were not associated with age at menarche or pubertal tempo. CONCLUSIONS: PAH exposures were widespread in our sample. Our results support the hypothesis that, in overweight girls, PAHs impact the timing of pubertal development, an important risk factor for breast cancer.


Asunto(s)
Fenantrenos , Hidrocarburos Policíclicos Aromáticos , Biomarcadores/orina , Estudios Transversales , Femenino , Humanos , Naftalenos , Sobrepeso , Hidrocarburos Policíclicos Aromáticos/orina , Estudios Prospectivos , Pubertad , San Francisco/epidemiología
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