Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 1.660
Filtrar
1.
Pediatrics ; 146(Suppl 1): S25-S32, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32737229

RESUMO

In this article, I examine the role of minors' competence for medical decision-making in modern American law. The doctrine of parental consent remains the default legal and bioethical framework for health care decisions on behalf of children, complemented by a complex array of exceptions. Some of those exceptions vest decisional authority in the minors themselves. Yet, in American law, judgments of minors' competence do not typically trigger shifts in decision-making authority from adults to minors. Rather, minors' decisional capacity becomes relevant only after legislatures or courts determine that the default of parental discretion does not achieve important policy goals or protect implicated constitutional rights in a particular health care context and that those goals can best be achieved or rights best protected by authorizing capable minors to choose for themselves. It is at that point that psychological and neuroscientific evidence plays an important role in informing the legal inquiry as to whether minors whose health is at issue are legally competent to decide.


Assuntos
Tomada de Decisão Clínica , Competência Mental/legislação & jurisprudência , Menores de Idade/legislação & jurisprudência , Consentimento dos Pais/legislação & jurisprudência , Adolescente , Desenvolvimento do Adolescente , Criança , Desenvolvimento Infantil , Serviços de Saúde da Criança/legislação & jurisprudência , Educação Infantil , Bem-Estar da Criança/legislação & jurisprudência , Direitos Civis , Tomada de Decisão Clínica/ética , Família , Acesso aos Serviços de Saúde/legislação & jurisprudência , Humanos , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/legislação & jurisprudência , Competência Mental/normas , Menores de Idade/psicologia , Relações Pais-Filho , Consentimento dos Pais/ética , Patient Self-Determination Act , Autonomia Pessoal , Procurador/legislação & jurisprudência , Recusa do Paciente ao Tratamento/legislação & jurisprudência , Estados Unidos
2.
PLoS One ; 15(7): e0236584, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32722698

RESUMO

BACKGROUND: The ICECAP capability measures are increasingly being used to capture the impact of health and social care interventions on well-being. In cases where the recipient of an intervention is highly vulnerable, proxy completion may be necessary. This study adds to the limited existing evidence on proxy completion of ICECAP-A specifically and adopts the novel approach of investigating multiple proxy responses for the same four (hypothetical) individuals. METHODS: 62 members of the public who were participating in a series of one day deliberative workshops on public health and social care completed ICECAP-A on behalf of four hypothetical individuals, described in vignettes. Quantitative analysis explored the range of proxy responses for each of the four hypothetical individuals, and any possible correlation between participants' own characteristics and their proxy responses. Participants discussed their proxy responses after completing the task; this discussion was audio recorded and analysed using Framework Analysis. RESULTS: Wide variation in ICECAP-A scores was observed across proxy respondents for each hypothetical individual. Participants' demographic characteristics and own well-being do not appear to have systematically influenced proxy responses. Qualitative analysis suggests two principal approaches (or perspectives) were adopted by participants: Empathetic (adopting the perspective of the 'subject') and factual (a factual assessment of the subject's well-being). Participants also drew on their own experiences to varying degrees. There were differing interpretations of the Independence attribute on ICECAP-A and some evidence that participants' ideas of what constituted achievement were context (including life-stage and condition/health) specific. CONCLUSIONS: The factual versus empathetic approaches identified from qualitative analysis in this study match to the concept of a proxy-proxy versus proxy-patient perspective, previously outlined in the literature. Researchers should consider specifying which perspective proxy raters should adopt. Findings also suggest proxy responses can be influenced by external points of reference and interpretation of measure attributes.


Assuntos
Procurador , Qualidade de Vida , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Inquéritos e Questionários , Adulto Jovem
3.
Spine (Phila Pa 1976) ; 45(13): E799-E807, 2020 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-32539293

RESUMO

STUDY DESIGN: Prospective cohort study. OBJECTIVE: To compare feasibility of self-reported and proxy-reported youth version of EuroQoL Five-Dimension Three-Level Questionnaire (EQ-5D-3L-Y), to estimate the agreement of health outcome between patients with adolescent idiopathic scoliosis (AIS) and their proxies, and to examine factors that may affect patient-proxy agreement. SUMMARY OF BACKGROUND DATA: The EQ-5D-3L-Y questionnaire has both self-reported and proxy-reported versions. Despite previous studies have indicated that proxies tended to respond with higher or lower levels of severity in specific dimensions than patients report, the level of agreement between children with AIS and their proxies remained unknown. METHODS: A consecutive sample of patients with AIS and their caregivers were recruited. Feasibility was tested according to the proportion of missing responses. Agreements between self-report and proxy EQ-5D-3L-Y were evaluated using percentage agreement, Gwet agreement coefficients and the intraclass correlation coefficients. Linear regressions and logistic regressions were conducted to assess the factors associated with the agreement in health outcome between self-reported and proxy-reported EQ-5D-3L-Y. RESULTS: A total of 130 patient-proxy pairs were involved in the study. Agreement of EQ-5D-3L-Y responses between the self-report and proxy version was good for "Feeling worried/sad/unhappy" dimension, and very good for other dimensions. Poor agreement in visual analog scale score was observed between patient and proxy versions. Proxy's education level, patient's curvature type, and treatment modality were the significant determinants of the agreement in "Mobility," "usual activities," and "pain/discomfort" dimension, respectively. CONCLUSION: Proxy-reported EQ-5D-3L-Y demonstrates good feasibility and satisfactory agreement with patient version. Proxy's education appears to have positive influence in agreement between patient-proxy dyads. LEVEL OF EVIDENCE: 2.


Assuntos
Cuidadores , Escoliose , Autorrelato , Atividades Cotidianas , Adolescente , Adulto , Ansiedade/etiologia , Cuidadores/educação , Criança , Escolaridade , Emoções , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Dor/etiologia , Estudos Prospectivos , Procurador , Qualidade de Vida , Amplitude de Movimento Articular , Escoliose/complicações , Escoliose/psicologia , Escoliose/terapia
4.
Artigo em Inglês | MEDLINE | ID: mdl-32575778

RESUMO

Background: Few studies in Asian countries have explored the emotional entanglements and conflicts that surrogates often experience during the medical decision-making process. This study was to explore decision-making processes in surrogates of cancer patients in a Taiwan intensive care unit (ICU). This qualitative study surveyed a purposive sample of surrogates (n = 8; average age, 48 years) of cancer patients in the ICU of a medical center in Taiwan. A phenomenological methodology was used, and a purposive sample of surrogates of cancer patients were recruited and interviewed during the first three days of the ICU stay. Results: Based on the interview results, four themes were generalized through text progression: (1) Use love to resist: internal angst. This theme was related to the reflexive self -blame, the feelings of inner conflict, and the reluctance to make healthcare decisions, which surrogates experienced when they perceived suffering by the patient. (2) Allow an angel to spread love among us: memories and emotional entanglements. Memories of the patient caused the surrogate to experience emotional entanglements ranging from happiness to sadness and from cheerfulness to anger. (3) Dilemmas of love: anxiety about ICU visitor restrictions. The confined space and restricted visiting hours of the ICU limited the ability of surrogates to provide emotional support and to share their emotions with the patient. (4) Suffocating love: entanglement in decision-making. Emotional entanglements among family members with different opinions on medical care and their struggles to influence decision-making often prevented surrogates from thinking logically. Conclusions: Expression of emotions by ICU surrogates is often restrained and implicit, particularly in Asian populations. These results can help health professionals understand the psychological shock and inner conflict experienced by surrogates and provide a useful reference for improving their communications with surrogates.


Assuntos
Tomada de Decisões , Neoplasias , Procurador , Adulto , Ásia , Humanos , Unidades de Terapia Intensiva , Pessoa de Meia-Idade , Neoplasias/enfermagem , Taiwan
5.
Am J Respir Crit Care Med ; 201(10): 1182-1192, 2020 05 15.
Artigo em Inglês | MEDLINE | ID: mdl-32412853

RESUMO

Background and Rationale: ICU clinicians regularly care for patients who lack capacity, an applicable advance directive, and an available surrogate decision-maker. Although there is no consensus on terminology, we refer to these patients as "unrepresented." There is considerable controversy about how to make treatment decisions for these patients, and there is significant variability in both law and clinical practice.Purpose and Objectives: This multisociety statement provides clinicians and hospital administrators with recommendations for decision-making on behalf of unrepresented patients in the critical care setting.Methods: An interprofessional, multidisciplinary expert committee developed this policy statement by using an iterative consensus process with a diverse working group representing critical care medicine, palliative care, pediatric medicine, nursing, social work, gerontology, geriatrics, patient advocacy, bioethics, philosophy, elder law, and health law.Main Results: The committee designed its policy recommendations to promote five ethical goals: 1) to protect highly vulnerable patients, 2) to demonstrate respect for persons, 3) to provide appropriate medical care, 4) to safeguard against unacceptable discrimination, and 5) to avoid undue influence of competing obligations and conflicting interests. These recommendations also are intended to strike an appropriate balance between excessive and insufficient procedural safeguards. The committee makes the following recommendations: 1) institutions should offer advance care planning to prevent patients at high risk for becoming unrepresented from meeting this definition; 2) institutions should implement strategies to determine whether seemingly unrepresented patients are actually unrepresented, including careful capacity assessments and diligent searches for potential surrogates; 3) institutions should manage decision-making for unrepresented patients using input from a diverse interprofessional, multidisciplinary committee rather than ad hoc by treating clinicians; 4) institutions should use all available information on the patient's preferences and values to guide treatment decisions; 5) institutions should manage decision-making for unrepresented patients using a fair process that comports with procedural due process; 6) institutions should employ this fair process even when state law authorizes procedures with less oversight.Conclusions: This multisociety statement provides guidance for clinicians and hospital administrators on medical decision-making for unrepresented patients in the critical care setting.


Assuntos
Cuidados Críticos/normas , Tomada de Decisões/ética , Unidades de Terapia Intensiva , Procurador , Planejamento Antecipado de Cuidados , Tomada de Decisão Clínica , Cuidados Críticos/ética , Geriatria , Humanos , Julgamento , Defesa do Paciente , Equipe de Assistência ao Paciente , Preferência do Paciente , Pneumologia , Sociedades Médicas
6.
Health Qual Life Outcomes ; 18(1): 142, 2020 May 18.
Artigo em Inglês | MEDLINE | ID: mdl-32423481

RESUMO

BACKGROUND: A unique and limiting component in the research on functional impairment among children has been the exclusive use of parent proxy reports about child functioning; and there is limited information regarding the impact of pediatric cancer treatment on children's day-to-day functioning and how this is related to neurocognitive functioning. The objective of the current study was to examine a novel measure of self-reported functional impairment, and explore the relationship between self-reported and parent-reported child functional impairment in pediatric cancer survivors compared to controls. METHODS: A cross-sectional cohort of survivors (n = 26) and controls (n = 53) were recruited. Survivors were off treatment an average of 6.35 years (SD = 5.38; range 1-15 years) and demonstrated an average "medium" Central Nervous System treatment intensity score. Participants completed measures of functional impairment (FI), intellectual assessment (RIST) and executive functions (NIH Examiner), while parents reported on children's functional impairment. RESULTS: Survivors were similar to controls in functional impairment. Regardless of group membership, self-reported FI was higher than parent-reported FI, although they were correlated and parent report of FI significantly predicted self-reported FI. Across groups, increased impairment was associated with four of seven Examiner scores. CONCLUSIONS: Research regarding self-reported functional impairment of cancer survivors and its association with parent-reported functional impairment and neurocognitive deficits has been limited. Our results suggest that self-reported FI appears to be a reasonable and viable outcome measure that corresponds with and adds incremental validity to parent reported FI. While low treatment intensity may confer relative sparing of functional impairment among survivors, children report higher FI levels than parents, suggesting that FI can be of clinical utility. In conclusion, pediatric cancer survivors should be screened for self-reported functional difficulties.


Assuntos
Sobreviventes de Câncer/psicologia , Função Executiva , Qualidade de Vida , Autorrelato , Adolescente , Estudos de Casos e Controles , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Pais/psicologia , Procurador
7.
Medicine (Baltimore) ; 99(19): e20078, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32384477

RESUMO

BACKGROUND: Asthma is a chronic airways inflammatory disease considered as a serious public health problem. Since asthma is a lifelong condition, the assessment of its control is important to achieve a better self-management. Based on the advances of the assessment tools, many instruments have been developed to assess asthma control. Therefore, this systematic review aims to assess the measurement properties, the methodological quality, and the content of outcome measures of the available patient- and proxy-reported asthma control instruments. METHODS: This is a systematic review protocol of the measurement properties of asthma control patient- and proxy-reported outcome instruments. Database searches will be primarily performed on MEDLINE, EMBASE, Web of Science, ScienceDirect and PsycINFO. A manual search of websites considered databases for questionnaires and reference lists will also be conducted. The methodological quality of the studies and the measurement properties will be critically appraised using the COSMIN risk of bias (RoB) checklist. The content of all measurement instruments will be compared based on the International Classification of Functioning, Disability and Health framework. RESULTS: The findings from this systematic review will be disseminated through publication in a peer-reviewed journal and presented at scientific conferences. CONCLUSION: The proposed systematic review will produce a comprehensive evaluation of the measurement properties of the currently available asthma control instruments for both adult and pediatric populations. We aim to help researchers and practitioners in their choice of an adequate instrument and to highlight the gaps in currently available tools. SYSTEMATIC REVIEW REGISTRATION: PROSPERO registration number: CRD42019126042.


Assuntos
Asma/terapia , Medidas de Resultados Relatados pelo Paciente , Procurador , Revisões Sistemáticas como Assunto , Adolescente , Criança , Humanos , Projetos de Pesquisa
8.
Health Qual Life Outcomes ; 18(1): 149, 2020 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-32448278

RESUMO

BACKGROUND: The EQ-5D-Y Proxy is currently recommended for Health Related Quality of Life (HRQoL) measurement in children aged 4-8 years of age. However, it has only been validated in children over six years of age. The aim of this study was to investigate the performance of the EQ-5D-Y proxy version 1 in children between the ages of 3-6 years. METHODS: A sample of 328 children between 3 and 6 years of age were recruited which included children who were either acutely-ill (AI), chronically-ill (CI) or from the general school going population (GP). The EQ-5D-Y Proxy Version 1 and the PedsQL questionnaires were administered at baseline. The EQ-5D-Y Proxy was administered telephonically 24 h later to children with chronic illnesses to establish test-retest reliability. The distribution of dimensions and summary scores, Cohen's kappa, the intraclass correlation coefficient, Pearson's correlation and Analysis of variance were used to explore the reliability, and validity of the EQ-5D-Y for each age group. A single index score was estimated using Latent scores and Adult EQ-5D-3 L values (Dolan). RESULTS: The groups included 3-year olds (n = 105), 4-year olds (n = 98) and 5-years olds (n = 118). The dimension Looking after Myself had the greatest variability between age groups and had the highest rate of problems reported. Worried, Sad or Unhappy and Pain or Discomfort were not stable across time in test-retest analysis. The Visual Analogue Scale (VAS), and single index scores estimated using the latent values and Dolan tariff had good test retest (except for the latent value scores in a small number of 4-year olds). EQ-5D-Y scores for all ages had small to moderate correlations with PedsQL total score. The EQ-5D-Y discriminated well between children with a health condition and the general population for all age groups. Caregivers reported difficulty completing the Looking after Myself dimension due to age-related difficulties with washing and dressing. CONCLUSION: The dimension of Looking after Myself is problematic for these young children but most notably so in the 3 year old group. If one considers the summary scores of the EQ-5D-Y Proxy version 1 it appears to work well. Known group validity was demonstrated. Concurrent validity was demonstrated on a composite level but not for individual dimensions of Usual Activities or Worried, Sad or Unhappy.. The observable dimensions demonstrated stability over time, with the inferred dimensions (Pain or Discomfort and Worried, Sad or Unhappy) less so, which is to be expected. Further work is needed in exploring either the adaptation of the dimensions in the younger age groups.


Assuntos
Qualidade de Vida , Inquéritos e Questionários/normas , Fatores Etários , Cuidadores/psicologia , Estudos de Casos e Controles , Pré-Escolar , Doença Crônica/psicologia , Feminino , Humanos , Masculino , Procurador , Reprodutibilidade dos Testes , Autoeficácia , Escala Visual Analógica
9.
Health Qual Life Outcomes ; 18(1): 148, 2020 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-32448322

RESUMO

BACKGROUND: The growing move towards personalised health and social care systems means that every effort needs to be made to generate patient-reported outcome data. However, the deteriorating nature of dementia can make it difficult for people with dementia to complete self-reported questionnaires and it is often necessary to rely on a family member (proxy) to report on their behalf. There is little evidence to guide how the difference between self- and proxy-reports of health reported quality of life (HRQL) in dementia can be interpreted. METHODS: We recruited people with dementia and their family carers from 78 memory Assessment Services in the UK. We used Rasch measurement methods to investigate whether a HRQL questionnaire known as DEMQOL (self-reported by the person with dementia) and DEMQOL-Proxy (proxy-reported by a family carer) can be placed on the same continuum and whether a revised scoring algorithm, based on this equated model, can be developed that takes account of the relationship between self- and proxy-reports. RESULTS: In a sample of 1434 patients and 1030 carers, our findings supported equating DEMQOL/DEMQOL-Proxy (overall fit to the model; no mis-fitting items) after addressing specific issues (eight disordered items requiring re-scoring, four pairs locally dependent items, and five items showing DIF). Cross walk tables have been produced. CONCLUSIONS: We have established for the first time that DEMQOL and DEMQOL-Proxy can be placed on the same continuum and that patients and carer proxies are reporting on the same construct when they complete these questionnaires. Where possible both DEMQOL and DEMQOL-Proxy should still be administered together, using the improved scoring algorithm reported here. Where only DEMQOL-Proxy is available, the cross walk tables provide an estimate of DEMQOL for a particular person from their DEMQOL-Proxy score.


Assuntos
Demência/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Estudos de Coortes , Família/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Procurador , Psicometria , Reprodutibilidade dos Testes
10.
Phys Ther ; 100(8): 1393-1410, 2020 08 12.
Artigo em Inglês | MEDLINE | ID: mdl-32313952

RESUMO

OBJECTIVE: The purpose of this study was to develop self-report and parent-proxy measures of children's physical activity for clinical research and practice and to demonstrate a valid and reliable instrument of children's lived experience of physical activity as reported by the children themselves or their parent proxies. METHODS: This study involved qualitative development of item pools followed by 2 cross-sectional validity and reliability studies. The National Institutes of Health Patient Reported Outcome Measurement Information System (PROMIS) instrument development standards were applied to create child self-report and parent-proxy physical activity instruments from previously developed, content-valid pools of physical activity items. Each item used a 7-day recall period and had 5 response options. Item bank calibration was based on national samples totaling 3033 children aged 8 to 17 years and 2336 parents of children aged 5 to 17 years. Quantitative analyses included reliability assessments, factor analyses, item response theory calibration, differential item functioning, and construct validation. RESULTS: The final item banks comprised 10 items each. The items were selected based on content and psychometric properties. The item banks appeared to be unidimensional and free from differential item functioning. They showed excellent reliability and a high degree of precision across the range of the latent variable. Child-report and parent-proxy 4- and 8-item fixed-length instruments were specified. The instruments showed moderate correlation with existing self-report measures of physical activity. CONCLUSION: The PROMIS Pediatric Physical Activity instruments provide precise and valid measurement of children's lived experiences of physical activity. IMPACT: The availability of the PROMIS Pediatric Physical Activity instruments will support advances in clinical practice and research that require measurement of pediatric physical activity by self- and parent-proxy report.


Assuntos
Exercício Físico , Avaliação de Resultados em Cuidados de Saúde , Pais , Procurador , Autorrelato , Adolescente , Adulto , Criança , Estudos Transversais , Coleta de Dados , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes
11.
Health Qual Life Outcomes ; 18(1): 75, 2020 Mar 18.
Artigo em Inglês | MEDLINE | ID: mdl-32188480

RESUMO

BACKGROUND: Proxy respondent-someone who assists the intended respondent or responds on their behalf-are widely applied in the measurement of health-related quality of life (HRQL). However, proxies may not provide the same responses as the intended respondents, which may bias the findings. OBJECTIVES: To determine whether the use of proxies is related to socio-demographic characteristics of the intended respondent, and to assess the possible proxy response bias of Chinese version of EQ-5D-3 L in general population. METHODS: A cross-sectional study based on a provincially representative sample from 2013 National Health Service Survey (NHSS) in Shaanxi, China was performed. HRQL was measured by Chinese version of EQ-5D-3 L. Propensity score matching (PSM) was used to get matched pairs of self-reports and proxy-reports. Before and after PSM, univariate logistic and linear models including the indicator of proxy response as the only independent variable, were employed to assess the possible proxy response bias of the dimensional and overall health status of EQ-5D-3 L respectively. RESULTS: 19.9% of the responses involved a proxy. Before PSM, the proxy-report group was younger in age and reported less unhealthy lifestyle, lower prevalence of disease, and less hospitalization than the self-report group. After PSM, it showed that the proxy-report group was statistically more likely to report health problem on each dimension of EQ-5D-3 L, with odds ratios larger than one comparing with self-report group. The means of EQ-5D-3 L index and EQ VAS of proxy-report group were 0.022 and 0.834 lower than self-report group. CONCLUSIONS: Significantly negative proxy response bias was found in Chinese EQ-5D-3 L in general population, and the magnitude of the bias was larger in physical dimensions than psychological dimensions after using PSM to control confounders.


Assuntos
Nível de Saúde , Inquéritos Epidemiológicos/métodos , Procurador/psicologia , Qualidade de Vida , Adulto , Idoso , China , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pontuação de Propensão , Autorrelato , Fatores Socioeconômicos , Adulto Jovem
12.
Qual Life Res ; 29(8): 2171-2181, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32170585

RESUMO

PURPOSE: Consideration of health-related quality of life (HRQoL) and wellbeing outcomes is important to guide healthcare services for youth with obesity, yet youth perspectives may differ from their parents. This study compared youth and parental HRQoL reports and evaluated levels of concordance across HRQoL domains and as a function of youth age, youth gender and parent informant (mother and father). METHODS: 376 youths with obesity, recruited from community (N = 223) and hospital settings (N = 153), and their parents (N = 190 mothers; N = 91 fathers), completed the PedsQL. Parental and youth agreement across subgroup dyads (mother; father; child gender; child age) were evaluated using Wilcoxon signed-rank test, intra-correlations coefficients (ICCs) and Bland-Altman plots. RESULTS: Compared to norms, HRQoL levels (youth self-report and parental proxy reports) were lower in all domains. Both mother and fathers' HRQoL reports were significantly lower than youths, most notably in physical HRQoL. Youth-parent concordance ranged from poor to moderate (ICC = 0.230-0.618), with lowest agreement for Physical HRQOL. Mothers were better proxies with ICCs being significant in all domains. Youth-father ICCs were significant only for Social (ICC = 0.428) and School (ICC = 0.303) domains. Girl-mother agreement was significant across all domains, while girl-father agreement was significant only in the Social domain (ICC = 0.653). Both mothers and fathers were poor raters for boys, and younger youths (aged ≤ 12), with non-significant ICCs in most HRQoL domains. CONCLUSIONS: Parents are poor surrogates for youth HRQoL. Clinicians should be cognizant that parents are not necessarily accurate proxies for youths, and exercise caution when interpreting parent-proxy scores.


Assuntos
Obesidade/psicologia , Pais/psicologia , Procurador/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Autorrelato
13.
Am J Bioeth ; 20(2): 66-68, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31990252
14.
Am J Bioeth ; 20(2): 44-48, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31990251

RESUMO

Incapacitated adult patients are commonly divided into two groups for purposes of decision making; those with a surrogate and those without. Respectively, these groups are often referred to as represented and unrepresented, and the relative ethics of decision making between them raises two particular issues. The first issue involves the differential application of the best interests standard between groups. Second is the prevailing notion that representedness and unrepresentedness are categorical phenomena, though it is more aptly understood as a multidimensional and continuous variable based on relational moral authority. This paper examines the nature of representedness as it relates to ethical norms of surrogate decision making.


Assuntos
Tomada de Decisões/ética , Defesa do Paciente/classificação , Defesa do Paciente/normas , Procurador , Consentimento do Representante Legal/ética , Adulto , Idoso , Humanos , Princípios Morais , Normas Sociais
17.
Psychol Med ; 50(1): 86-95, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-30691541

RESUMO

BACKGROUND: Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes. METHODS: We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews. RESULTS: Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as 'Poor' (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents' QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia. CONCLUSION: Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.


Assuntos
Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Família/psicologia , Pessoal de Saúde/psicologia , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Demência , Inglaterra , Feminino , Humanos , Masculino , Procurador , Instituições de Cuidados Especializados de Enfermagem
18.
Bioethics ; 34(3): 272-280, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31598984

RESUMO

The wishes of registered organ donors are regularly set aside when family members object to donation. This genuine overruling of the wishes of the deceased raises difficult ethical questions. A successful argument for providing the family with a veto must (a) provide reason to disregard the wishes of the dead, and (b) establish why the family should be allowed to decide. One branch of justification seeks to reconcile the family veto with important ideas about respecting property rights, preserving autonomy, and preventing harm. These arguments are ultimately unsuccessful. Another branch of arguments is consequentialist, pointing out the negative consequences of removing the veto. Whether construed as concerning family distress or as a potential drop in the organs available, these arguments are unsuccessful; the first fails to recognize the tremendous distress associated with waiting for an organ, while the second has little supporting evidence. A final section considers and rejects whether combining some of the arguments just examined could justify the family veto. We should thus remove the family veto in organ donation.


Assuntos
Tomada de Decisões/ética , Análise Ética , Conflito Familiar/psicologia , Procurador/psicologia , Consentimento do Representante Legal/ética , Doadores de Tecidos/psicologia , Obtenção de Tecidos e Órgãos/ética , Humanos
19.
Bioethics ; 34(3): 264-271, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31577851

RESUMO

Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science-driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be applied to all, individual patients are treated as population-level groups-as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision-making process by allowing for the incorporation of a variety of methods of advance care planning.


Assuntos
Tomada de Decisões/ética , Testamentos Quanto à Vida/ética , Testamentos Quanto à Vida/psicologia , Autonomia Pessoal , Aconselhamento Diretivo , Previsões , Humanos , Modelos Estatísticos , Preferência do Paciente/psicologia , Procurador/psicologia
20.
Int J Older People Nurs ; 15(1): e12274, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31612638

RESUMO

OBJECTIVE: The goal of this review is to analyse articles on the experience of surrogates who find themselves making end-of-life decisions for a relative with a major neurocognitive disorder in a nursing home. DESIGN: An integrative review of the literature based on Whittemore and Knafl's method. DATA SOURCES: This review used the CINAHL, PubMed, PsycInfo, Embase and Web of Science databases. A complementary search was also conducted via citation pearl searching, and the reference lists from the selected articles were manually verified. REVIEW METHOD: The quality of the selected articles was assessed using the Crow Critical Appraisal Tool, and the data were extracted systematically and were then organised according to Mishel's uncertainty in illness theory. The data that did not correspond to any concept of the theory were excluded at this stage. Analysis was conducted using the method put forward by Miles, Huberman and Saldaña. RESULTS: A total of 18 articles were selected: 11 qualitative, 5 quantitative and 1 using a mixed method, as well as 1 ethical argument. The subjects arising from the analysis of the articles were the types of decisions made, the support available for the surrogates, the role and involvement of the surrogates in the process and the factors that influence the decisions. CONCLUSION: The results of this integrative review stimulate reflection on the needs of family members involved in making decisions, as well as on the nursing practice and research. Published literature is mainly from North America, and thus, more research is needed to better understand the impact of cultural and ethnic differences in the process, which was poorly covered by the existing literature. Also, exploring nurses' involvement in supporting surrogates may eventually better equip nurses for their interventions with surrogates. IMPLICATIONS FOR PRACTICE: Describing the illness progression and the signification of palliative care to the resident with a NCD and their surrogate decision makers, as well as discussing end-of-life care preferences as early as possible are all nursing interventions that could potentially enhance surrogates' end-of-life decision-making process.


Assuntos
Tomada de Decisões , Família/psicologia , Instituição de Longa Permanência para Idosos , Transtornos Neurocognitivos/enfermagem , Casas de Saúde , Procurador , Assistência Terminal/psicologia , Idoso , Feminino , Humanos , Masculino , Incerteza
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...