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1.
Brain Cogn ; 169: 106002, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37269816

RESUMO

BACKGROUND: In Huntington's disease (HD), admission to a nursing home (NH) is required in advanced disease stages. To gain insight in care needs, more knowledge is needed on the functioning of this group. OBJECTIVE: Describing patient and disease characteristics, their functioning, and gender differences. METHODS: A cross-sectional descriptive design was used to collect data of 173 patients living in eight Dutch HD-specialized NHs. Data were collected on characteristics and functioning. We tested for gender differences. RESULTS: Mean age was 58.3 years and 49.7% were men. Activities of daily living and cognition varied from 46 to 49% mildly impaired to 22-23% severely impaired. Communication was severely impaired in 24%. Social functioning was low in 31% and high in 34%. A majority of patients used psychotropic medications (80.3%) and showed neuropsychiatric signs (74%). Women were on average more dependent in ADL (severely impaired 33.3% vs 12.8%), more often depressed (26.4% vs 11.6%), and prescribed antidepressant medications more often (64.4% vs 48.8%) than men. CONCLUSIONS: The population of HD patients in NHs is heterogeneous in terms of patient and disease characteristics, and functioning. As a consequence, care needs are complex leading to implications for the required expertise of staff to provide adequate care and treatment.


Assuntos
Doença de Huntington , Masculino , Humanos , Feminino , Pessoa de Meia-Idade , Doença de Huntington/psicologia , Doença de Huntington/terapia , Atividades Cotidianas , Estudos Transversais , Casas de Saúde , Cognição
2.
BMC Geriatr ; 22(1): 212, 2022 03 16.
Artigo em Inglês | MEDLINE | ID: mdl-35296246

RESUMO

BACKGROUND: Social interactions are important for people living with dementia in a nursing home. However, not much is known about interactions and relationships between residents and family caregivers and related experiences of family caregivers. We aim to advance the knowledge on how family caregivers interact with people living with dementia in a nursing home and how they maintain or redesign a meaningful connection. METHODS: Qualitative research using interviews with family caregivers (n = 31) to explore perspectives on their interaction and relationship with the person living with dementia. Interviews were held during the reopening of nursing homes after the first COVID-19 lockdown in the Netherlands. In this situation, family caregivers became more aware of their interaction and relationship with the resident, which provided a unique opportunity to reflect on this. The interviews explored the interaction and relationship in a broad sense, not specifically for the COVID-19 situation. Thematic analysis was performed to analyze the data. RESULTS: We were able to identify three key themes reflecting the experiences of family caregivers: (1) changes in the interaction and relationship, (2) strategies to promote connection, and (3) appreciation of the interaction and relationship. From the viewpoint of family caregivers, the interaction and relationship are important for both the resident living with dementia and for themselves, and family caregivers have different strategies for establishing a meaningful connection. Nevertheless, some appear to experience difficulties with constructing such a connection with the resident. CONCLUSIONS: Our results provide a basis for supporting family caregivers in perceiving and establishing mutuality and reciprocity so that they can experience togetherness.


Assuntos
COVID-19 , Demência , Cuidadores , Controle de Doenças Transmissíveis , Demência/epidemiologia , Humanos , Casas de Saúde , Pesquisa Qualitativa
3.
BMC Med Ethics ; 23(1): 101, 2022 10 10.
Artigo em Inglês | MEDLINE | ID: mdl-36217136

RESUMO

BACKGROUND: Huntington's disease (HD) has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive (AED). Little is known about the perspectives of HD patients on their AED. AIM: To gain insight into patients' views on and attitudes towards their AED, and changes over time. METHODS: A longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients (5 outpatient clinic, 3 day care, 1 assisted living facility) who either had an AED or were thinking about drawing it up participated in this study. RESULTS: We identified two themes that characterize patients' perspectives on their AEDs: (1) general character of the AED; (2) uncertainty around their AED. Ad (1) The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad (2) Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED. CONCLUSION: HD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care.


Assuntos
Eutanásia , Doença de Huntington , Diretivas Antecipadas , Atitude , Humanos , Pesquisa Qualitativa
4.
BMC Palliat Care ; 20(1): 12, 2021 Jan 12.
Artigo em Inglês | MEDLINE | ID: mdl-33435952

RESUMO

BACKGROUND: Huntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis. AIM: To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease. METHODS: A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified. RESULTS: Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge 'at a distance', with the motivation of keeping daily life as manageable as possible. CONCLUSIONS: Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.


Assuntos
Planejamento Antecipado de Cuidados , Atitude Frente a Saúde , Objetivos , Doença de Huntington , Adulto , Idoso , Idoso de 80 Anos ou mais , Assistência Ambulatorial , Moradias Assistidas , Hospital Dia , Eutanásia Ativa Voluntária , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Motivação , Países Baixos , Casas de Saúde , Pesquisa Qualitativa
5.
Nurs Ethics ; 28(3): 358-371, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-32436458

RESUMO

BACKGROUND: In the Netherlands, people with severe cognitive deficits due to Korsakoff syndrome are generally admitted to a specialized nursing home. Professional caregivers experience that these residents are often not aware of their deficits, and consequently, their willingness to accept care is relatively low. However, these residents need permanent support when performing daily tasks due to severe cognitive deficits. The combination of objective care needs and low subjective responsiveness makes caring for people with Korsakoff syndrome a complex undertaking. It is unknown how professional caregivers deal with this complex task and how they manage the associated ethical challenges. OBJECTIVES: The aim of this study was to explore the professional caregivers' perspectives on good care for residents with Korsakoff syndrome. METHODS: A qualitative study design was used. Data were collected via semi-structured interviews. The Framework Method was used for the thematic analyses of the interview data. PARTICIPANTS AND RESEARCH CONTEXT: Five specialized nursing homes participated in this study. Twelve professional caregivers, including nurses, nursing assistants, and support workers, were selected based on the ability to provide rich information on the study topics and to capture a variety of demographic and professional characteristics. ETHICAL CONSIDERATIONS: The institutional review board of the VU University Medical Center Amsterdam approved the research protocol. The study was conducted in accordance with the ethical principles for medical research involving human subjects. FINDINGS: Three perspectives on good care emerged: (1) making daily life a joint effort, (2) being steadfast, and (3) treating with respect. DISCUSSION AND CONCLUSION: Professional caregivers try to achieve responsiveness in people with Korsakoff syndrome in three different ways. These perspectives reflect fundamentally different views on the care relationship and the autonomy of the resident. By elucidating the three perspectives, we hope to promote the practitioners' reflection on their own ideas about good care for people with Korsakoff syndrome.


Assuntos
Cuidadores , Síndrome de Korsakoff , Humanos , Países Baixos , Casas de Saúde , Pesquisa Qualitativa
6.
BMC Palliat Care ; 19(1): 27, 2020 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-32143601

RESUMO

BACKGROUND: Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP. METHODS: Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached. RESULTS: In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment. CONCLUSIONS: Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.


Assuntos
Planejamento Antecipado de Cuidados , Estudos de Avaliação como Assunto , Objetivos , Humanos , Países Baixos
7.
Qual Health Res ; 30(7): 1114-1124, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32418501

RESUMO

This is an ethnographic study of decision-making concerning tube feeding in the acute phase after a severe stroke. It is based on 6 months of ethnographic research in three stroke units in the Netherlands, where the decision-making on life-sustaining treatment was studied in 16 cases of severe stroke patients. Data were collected through participant observation and interviews. For this article, the analysis was narrowed down to the decision whether or not the patient should receive tube feeding. The data on tube feeding were assembled and coded according to different modes of dealing with this decision in clinical practice, which we refer to as "repertoires." We discerned three different repertoires: choice, necessity, and comfort. Each repertoire structures clinical practice differently: It implies distinctive ethical imperatives, central concerns, sources of information, and temporalities. We hope our findings can improve decision-making by uncovering its underlying logics in clinical practice.


Assuntos
Nutrição Enteral , Acidente Vascular Cerebral , Antropologia Cultural , Tomada de Decisões , Humanos , Países Baixos
8.
Int J Geriatr Psychiatry ; 34(6): 836-845, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30854733

RESUMO

OBJECTIVES: Impaired awareness of functional deficits is often observed in people with Korsakoff syndrome (KS) and may result in refusal of care, although this area has been understudied. This study aimed to investigate levels of impaired awareness and their relationships with neuropsychiatric symptoms (NPS) in people with KS residing in specialized nursing homes. METHODS: A cross-sectional, observational study was conducted among 215 residents with KS or other alcohol-related cognitive disorders. Awareness was measured with the Patient Competency Rating Scale (PCRS). NPS and subsyndromes were measured with the Neuropsychiatric Inventory-Questionnaire (NPI-Q). Adjusted multilevel regression analyses were performed to examine the relationships between the level of awareness and NPS. RESULTS: The mean level of impaired awareness was 39.3 (SD = 19.9) indicating moderate impairment. Twenty-nine percent of the residents had no or mildly impaired awareness; 37% were moderately impaired, and 34% were severely impaired. Residents with moderately impaired awareness showed more severe apathy than residents with no or mildly impaired awareness (difference 1.23; 95% CI 1.02-1.48; p = 0.03). No associations were found between the level of awareness and other NPI outcomes. Cognitive functioning seems to have the strongest impact on the association between level of awareness and NPS in KS residents. CONCLUSIONS: Impaired awareness of functional deficits is highly common in KS residents; however, apart from apathy, is not significantly related with NPS. Additional research should further examine, which interventions are effective in dealing with impaired awareness in these people, particularly when apathy is present.


Assuntos
Transtornos Relacionados ao Uso de Álcool/psicologia , Conscientização , Transtornos Cognitivos/psicologia , Síndrome de Korsakoff/psicologia , Casas de Saúde/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Apatia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
9.
J Med Ethics ; 45(7): 425-429, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31092632

RESUMO

The majority of Dutch physicians feel pressure when dealing with a request for euthanasia or physician-assisted suicide (EAS). This study aimed to explore the content of this pressure as experienced by general practitioners (GP). We conducted semistructured in-depth interviews with 15 Dutch GPs, focusing on actual cases. The interviews were transcribed and analysed with use of the framework method. Six categories of pressure GPs experienced in dealing with EAS requests were revealed: (1) emotional blackmail, (2) control and direction by others, (3) doubts about fulfilling the criteria, (4) counterpressure by patient's relatives, (5) time pressure around referred patients and (6) organisational pressure. We conclude that the pressure can be attributable to the patient-physician relationship and/or the relationship between the physician and the patient's relative(s), the inherent complexity of the decision itself and the circumstances under which the decision has to be made. To prevent physicians to cross their personal boundaries in dealing with EAS request all these different sources of pressure will have to be taken into account.


Assuntos
Tomada de Decisões , Eutanásia/ética , Clínicos Gerais/psicologia , Relações Profissional-Família/ética , Estresse Psicológico , Suicídio Assistido/ética , Humanos , Entrevistas como Assunto , Países Baixos , Pesquisa Qualitativa
10.
Aging Ment Health ; 23(4): 498-506, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-29412696

RESUMO

OBJECTIVE: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. METHOD: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups . RESULTS: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. CONCLUSION(S): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum.


Assuntos
Controle Comportamental , Demência/enfermagem , Demência/psicologia , Instituição de Longa Permanência para Idosos , Casas de Saúde , Satisfação do Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Família , Feminino , Humanos , Masculino , Corpo Clínico , Pessoa de Meia-Idade , Recursos Humanos de Enfermagem , Psicologia , Pesquisa Qualitativa , Restrição Física
11.
Tijdschr Gerontol Geriatr ; 49(2): 81-89, 2018 Apr.
Artigo em Holandês | MEDLINE | ID: mdl-29188478

RESUMO

OBJECTIVE: To evaluate the feasibility of a study on the content and effect of comprehensive geriatric care (CGC) at home for frail elderly. METHOD: Case managers invited new CGC patients of one care organization for participation in the study. At two moments, questionnaires were conducted on (social) functioning, quality of life, perceived problems, perceived informal caregiver burden, and self-management. Information on received care was collected from the patients' medical records, In addition, a questionnaire was administered to the referring physician. Feasibility was evaluated descriptively on three domains; inclusion, follow up, and data collection. RESULTS: The intended number of 25 participants was not reached, mostly because clients did not comply with inclusion criteria, and because case managers felt uncomfortable asking patients for participation in the study. Of the 14 participants, 12 were followed until the follow-up measurement. Several questionnaire domains appeared difficult to answer for participants. It also appeared difficult to collect information on received care from the medical records. Questionnaire response among general practitioners was 6 out of 11. CONCLUSION: Due to the vulnerability of the targeted group and logistical challenges, the inclusion of participants for the study was more difficult than originally thought. In combination with the difficulties in data collection, this suggests that a large-scale study on the content and effect of CGC is not feasible. Qualitative research methodologies, preferably combined with quantitative methods, offer better opportunities to understand the value of CGC for frail elderly living at home.


Assuntos
Idoso Fragilizado , Serviços de Assistência Domiciliar , Qualidade de Vida , Atividades Cotidianas , Idoso , Estudos de Viabilidade , Avaliação Geriátrica , Humanos
12.
Int J Geriatr Psychiatry ; 32(3): 256-273, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-27918121

RESUMO

OBJECTIVE: Experiences from clinical practice suggest that behavioural symptoms in patients with Korsakoff syndrome (KS) are a frequent problem. Knowledge about behavioural symptoms is important in understanding and managing these symptoms. The aim of this study is to review the prevalence and severity of behavioural symptoms in KS. METHODS: Relevant articles were identified by searching Medline (PubMed), PsycINFO, Embase and CINAHL up to 4 June 2014. Two reviewers independently selected the studies, extracted their baseline data and assessed methodological quality using a standardized checklist. RESULTS: Fifteen studies fulfilled the inclusion criteria. A diversity of diagnoses was used indicating that KS and other alcohol-related cognitive disorders and terms were used interchangeably. None of the studies were primarily designed to estimate the prevalence or severity of behavioural symptoms in patients with KS. Most studies had serious methodological limitations. The reported prevalence estimates of behavioural symptoms in the included studies varied strongly. Most prevalent were depressive symptoms and disorders (2-50%, median 27%) and agitation and aggression (10-54%, median 27%). None of the reported, mean severity estimates met pathological thresholds. The highest severity estimates were found for apathy. CONCLUSIONS: Good quality studies on behavioural symptoms in patients with KS are lacking. Observational research designed to provide reliable estimates of the prevalence and severity of behavioural symptoms in patients with KS is needed. This could improve understanding and managing these symptoms and help care staff to better support the needs of this specific patient group. Copyright © 2016 John Wiley & Sons, Ltd.


Assuntos
Agressão , Apatia , Depressão , Síndrome de Korsakoff , Adulto , Ansiedade , Cognição , Feminino , Humanos , Síndrome de Korsakoff/psicologia , Masculino , Prevalência
13.
Int Psychogeriatr ; 28(6): 983-94, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-26830698

RESUMO

BACKGROUND: Research showed that long-term care facilities differ widely in the use of psychotropic drugs and physical restraints. The aim of this study is to investigate whether characteristics of an unhealthy work environment in facilities for people with dementia are associated with more prescription of psychotropic drugs and physical restraints. METHODS: Data were derived from the first wave (2008-2009) of a national monitoring study in the Netherlands. This paper used data on prescription of psychotropic drugs and physical restraints from 111 long-term care facilities, residing 4,796 residents. Survey data of a sample of 996 staff and 1,138 residents were considered. The number of residents with prescribed benzodiazepines and anti-psychotic drugs, and physical restraints were registered. Work environment was assessed using the Leiden Quality of Work Questionnaire (LQWQ). RESULTS: Logistic regression analyses showed that more supervisor support was associated with less prescription of benzodiazepines. Coworker support was found to be related to less prescription of deep chairs. Job demands and decision authority were not found to be predictors of psychotropic drugs and physical restraints. CONCLUSIONS: Staff's job characteristics were scarcely related to the prescription of psychotropic drugs and physical restraints. This finding indicates that in facilities with an unhealthy work environment for nursing staff, one is not more likely to prescribe drugs or restraints. Further longitudinal research is needed with special attention for multidisciplinary decision making - especially role of physician, staff's knowledge, philosophy of care and institutional policy to gain further insight into factors influencing the use of psychotropic drugs and restraints.


Assuntos
Demência/tratamento farmacológico , Instituição de Longa Permanência para Idosos/organização & administração , Casas de Saúde/organização & administração , Psicotrópicos/uso terapêutico , Restrição Física , Local de Trabalho , Idoso , Antipsicóticos/uso terapêutico , Benzodiazepinas/uso terapêutico , Estudos Transversais , Feminino , Humanos , Assistência de Longa Duração , Masculino , Países Baixos , Recursos Humanos de Enfermagem
14.
Tijdschr Gerontol Geriatr ; 47(2): 47-57, 2016 Apr.
Artigo em Holandês | MEDLINE | ID: mdl-26821168

RESUMO

OBJECTIVE: To describe the feasibility of a geriatric multidisciplinary outpatient rehabilitation program, developed in Vivium Naarderheem. DESIGN: A prospective pilot study using a pretest-posttest design with measurements of the level of (social) participation, health related quality of life, and caregiver strain at the start (T0) and the end (T1) of the program. Feasibility was studied by structured interviews with participants, professionals and management. RESULTS: We included 18 patients, fifteen of which were admitted after stroke. The program was highly appreciated by patients. Management and professionals thought that factors of influence on the program were transportation of patients, adequate planning and deployment of staff, and adequate financing. The program was regarded feasible. Although some patients reported a higher level of participation, the only statistically significant finding was a deterioration in self-perceived health. CONCLUSION: In this study most of the patients participated after stroke. The geriatric multidisciplinary outpatient rehabilitation program, following inpatient geriatric rehabilitation, was highly appreciated by patients, and considered feasible by management and professionals.


Assuntos
Instituições de Assistência Ambulatorial , Equipe de Assistência ao Paciente , Satisfação do Paciente , Reabilitação do Acidente Vascular Cerebral , Idoso , Feminino , Geriatria , Humanos , Comunicação Interdisciplinar , Masculino , Países Baixos , Projetos Piloto , Estudos Prospectivos , Resultado do Tratamento
15.
Am J Geriatr Psychiatry ; 23(2): 180-8, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24823894

RESUMO

OBJECTIVES: Apathy is a frequent neuropsychiatric consequence of stroke. In the under-researched population of institutionalized stroke patients, we aimed to explore the prevalence of apathy, its clinical correlates, and the relation to the amount of stimulating activities in the nursing home (NH). DESIGN: A cross-sectional, observational study. SETTING: Dutch NHs. PARTICIPANTS: 274 chronic stroke patients. MEASUREMENTS: Data were collected through observation lists that were filled out in structured interviews with qualified nurse assistants who knew the residents well. The lists comprised the NH-version of the Apathy Evaluation Scale (AES10), the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. Attending physicians and therapists provided additional information. RESULTS: Apathy (AES10 score ≥30) was present in 28% of residents. Multilevel regression analyses revealed that this apathy was independently related to (moderate, severe) cognitive impairment (odds ratio [OR] 11.30 [95% confidence interval (CI): 4.96-25.74], OR 5.54 [95% CI: 2.48-12.40]), very severe ADL-dependency (OR 12.10 [95% CI: 1.35-108.66]), and being >12 hours per day in bed (OR 2.10 [95% CI: 1.07-4.13]). It was not related to depressive mood symptoms (OR 1.75 [95% CI: 0.91-3.37]). Only in residents aged less than 80 years were a higher amount of activities independently related to a lower AES10 score (-0.70 [95% CI: -1.18 to -0.20] points per four extra activities in a 4-week period). CONCLUSIONS: Apathy is prevalent in largely one-quarter of institutionalized stroke patients, and that is most strongly related to cognitive impairment in this explorative study. We discuss the need for research on the relation with distinct dimensions of depression and fatigue as partly overlapping constructs, and on (individualized) stimulating activities as a possible intervention method.


Assuntos
Apatia , Institucionalização/estatística & dados numéricos , Acidente Vascular Cerebral/psicologia , Atividades Cotidianas/psicologia , Idoso de 80 Anos ou mais , Transtornos Cognitivos/complicações , Transtornos Cognitivos/epidemiologia , Transtornos Cognitivos/psicologia , Estudos Transversais , Dependência Psicológica , Feminino , Humanos , Masculino , Atividade Motora , Países Baixos/epidemiologia , Casas de Saúde/estatística & dados numéricos , Prevalência , Análise de Regressão , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/epidemiologia
16.
Int J Geriatr Psychiatry ; 30(10): 1023-31, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25581472

RESUMO

OBJECTIVE: Pain is a frequent long-term consequence of stroke, but its relation to emotional and social well-being is poorly studied in stroke populations. We aimed to identify the prevalence of substantial pain among institutionalized stroke patients and to explore its relation to emotional distress (ED) and low social engagement (SE). METHODS: In a cross-sectional design, we collected data of 274 chronic stroke patients in Dutch nursing homes. Observation lists were filled out in structured interviews with qualified nurse assistants who knew the residents well. Pain and SE were measured with the Resident Assessment Instrument for Long-term Care Facilities, and ED was measured with the Neuropsychiatric Inventory Questionnaire (NPIQ). RESULTS: Substantial pain was present in 28% of the residents, mostly located in the affected body side (68%). Multilevel regression analyses revealed that this pain was independently related to a 60% increase in NPIQ score (ß 3.18 [1.84-4.53]) and to clinically relevant symptoms of delusions (odds ratio [OR] 8.45 [1.82-39.05]), agitation/aggression (OR 3.82 [1.76-8.29]), depression (OR 3.49 [1.75-6.98]), and anxiety (OR 2.32 [1.08-4.97]). Substantial pain was associated with low SE when adjusted for clinical covariates (OR 4.25 [1.72-10.53]), but only in residents with no/mild or severe cognitive impairment. This relation disappeared when additionally corrected for NPIQ score (OR 1.95 [0.71-5.39]). CONCLUSIONS: Pain is a serious and multidimensional problem among institutionalized stroke patients. It is related to increased ED, which in turn can be a pathway to low SE as an indicator of social vulnerability. Future research should reveal how pain management in nursing homes can be tailored to the needs of this patient group.


Assuntos
Casas de Saúde/estatística & dados numéricos , Dor/psicologia , Comportamento Social , Estresse Psicológico/etiologia , Acidente Vascular Cerebral/complicações , Idoso , Idoso de 80 Anos ou mais , Agressão/psicologia , Doença Crônica , Estudos Transversais , Delusões/etiologia , Transtorno Depressivo , Feminino , Humanos , Assistência de Longa Duração/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Países Baixos , Razão de Chances , Dor/etiologia , Prevalência , Agitação Psicomotora/etiologia , Análise de Regressão , Estresse Psicológico/complicações , Acidente Vascular Cerebral/psicologia
17.
Palliat Med ; 29(5): 451-7, 2015 May.
Artigo em Inglês | MEDLINE | ID: mdl-25634632

RESUMO

BACKGROUND: Decision-making in the acute phase after a severe stroke is complex and may involve life-and-death decisions. Apart from the medical condition and prognosis, quality of life and the deliberation of palliative care should be part of the decision-making process. Relatives play an important role by informing physicians about the patient's values and preferences. However, little is known about how the patients' relatives experience the decision-making process. AIM: To elicit the perspective of relatives of severe stroke patients with regard to the decision-making process in the acute phase in order to understand how they participate in treatment decisions. DESIGN: An exploratory qualitative interview approach guided by the principles of grounded theory. SETTINGS/PARTICIPANTS: Relatives of severe stroke patients (n = 15) were interviewed about their experiences in the decision-making process in the acute phase. RESULTS: Four categories reflecting relatives' experiences were identified: (1) making decisions under time pressure, (2) the feeling of 'who am I' to decide, (3) reluctance in saying 'let her die' and (4) coping with unexpected changes. Following the treatment proposal of the physician was found to be the prevailing tendency of relatives in the decision-making process. CONCLUSION: A better understanding of the latent world of experiences of relatives that influence the decision-making process may help physicians and other health-care providers to better involve relatives in decision-making and enhance the care, including palliative care, for patients with severe stroke in line with their values and preferences. Communication between physician and relatives seems vital in this process.


Assuntos
Tomada de Decisões , Família/psicologia , Cuidados Paliativos/psicologia , Acidente Vascular Cerebral/terapia , Assistência Terminal/psicologia , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Feminino , Teoria Fundamentada , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida , Inquéritos e Questionários
18.
Soc Psychiatry Psychiatr Epidemiol ; 50(1): 125-32, 2015 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-24985314

RESUMO

PURPOSE: To investigate the pattern of associations between changes in unmet needs and treatment motivation in elderly patients with severe mental illness. METHODS: Observational longitudinal study in 70 patients treated by an assertive community treatment team for the elderly. Unmet needs and motivation for treatment were measured using the Camberwell assessment of needs for the elderly and the stages-of-change (SoC) scale, respectively, at baseline, after 9 and 18 months. SoC scores were dichotomized into two categories: motivated and unmotivated. Multinomial logistic regression analyses were conducted to determine whether changes in motivation were parallel to or preceded changes in unmet needs. RESULTS: The number of patients who were not motivated for treatment decreased over time (at baseline 71.4 % was not motivated, at the second measurement 51.4 %, and at 18 months 31.4 % of the patients were not motivated for treatment). A decrease in unmet needs, both from 0-9 to 0-18 months was associated with remaining motivated or a change from unmotivated to becoming motivated during the same observational period (parallel associations). A decrease in unmet needs from 0 to 9 months was also associated with remaining motivated or a change from unmotivated to motivated during the 9-18 months follow-up (sequential associations). CONCLUSIONS: Our findings suggest that a decrease in unmet needs is associated with improvements in motivation for treatment.


Assuntos
Serviços Comunitários de Saúde Mental/estatística & dados numéricos , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Transtornos Mentais/terapia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Idoso , Idoso de 80 Anos ou mais , Análise de Variância , Feminino , Humanos , Estudos Longitudinais , Masculino , Transtornos Mentais/psicologia , Pessoa de Meia-Idade , Motivação , Avaliação das Necessidades , Adulto Jovem
19.
J Adv Nurs ; 71(2): 404-16, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25123418

RESUMO

AIM: To explore the role of nursing staff's person-centredness caring for people with dementia in relation to their work environment and job-related well-being. BACKGROUND: Given the development towards person-centred care and labour force issues, research has recently focused on the effect of person-centredness on nursing staff's well-being. Findings from occupational stress research suggest that employees' personal characteristics, such as person-centredness, can moderate the impact particular job characteristics have on their job-related well-being. DESIGN: Cross-sectional survey. METHODS: A national survey was conducted among healthcare staff (n = 1147) in 136 living arrangements for people with dementia in the Netherlands (2008-2009). Hierarchical regression analyses were used. RESULTS: Person-centredness moderates the relationship between coworker support and three outcomes of job-related well-being and between supervisor support and two of these outcomes. For highly person-centred nursing staff, coworker support was found to have a weaker impact and supervisor support to have a stronger impact on their job-related well-being. In addition, direct effects showed that person-centredness was weakly associated with more job satisfaction, more emotional exhaustion and more strongly with more personal accomplishment. CONCLUSION: Nursing staff's person-centredness does play a modest role in relation to job characteristics and job-related well-being. Findings indicate that person-centredness is not only beneficial to residents with dementia as found earlier, but also for nursing staff themselves; specifically, in case nursing staff members feel supported by their supervisor. Since a more person-centred workforce feels more competent, further implementation of person-centred care might have a positive impact on the attractiveness of the profession.


Assuntos
Demência/enfermagem , Assistência Centrada no Paciente/métodos , Adolescente , Adulto , Idoso , Atitude do Pessoal de Saúde , Esgotamento Profissional/etiologia , Estudos Transversais , Feminino , Pessoal de Saúde/psicologia , Instituição de Longa Permanência para Idosos , Humanos , Relações Interprofissionais , Satisfação no Emprego , Masculino , Pessoa de Meia-Idade , Países Baixos , Casas de Saúde , Apoio Social , Adulto Jovem
20.
Tijdschr Gerontol Geriatr ; 46(4): 196-203, 2015 Sep.
Artigo em Holandês | MEDLINE | ID: mdl-26319670

RESUMO

AIM: To explore stroke patients needs of care after discharge from hospital or rehabilitation facility. METHOD: Semi-structured interviews with twenty stroke patients and their partners in the region Midden-Kennemerland in the Netherlands. RESULTS: 'That's when it really begins'; at home it becomes clear what the real consequences of the stroke are on daily life. After returning home patients would have liked to (1) have had more information/support and they have a need for support for a long time after their stroke; (2) have had the possibility to get support later on (after having said 'no' in the first place). On the other hand there are (3) patients who are inclined to search for solutions by themselves. CONCLUSION: Only after returning home stroke patients and their partners can really assess what their need for care is. Therefore the need for care of stroke patients should be assessed after a period of time after the patients return home. The care should be available for a long time after the stroke. Because patients don't realize that they can get help for the neuropsychological consequences, it is important that the initiative to organize the care lies in the hands of the caregivers.


Assuntos
Continuidade da Assistência ao Paciente , Avaliação das Necessidades , Acidente Vascular Cerebral/fisiopatologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/provisão & distribuição , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Testes Neuropsicológicos , Alta do Paciente , Recuperação de Função Fisiológica , Acidente Vascular Cerebral/psicologia , Reabilitação do Acidente Vascular Cerebral
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