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1.
Birth ; 47(3): 278-289, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32808396

RESUMO

BACKGROUND: Infants with medical complexity are increasingly cared for at home, creating unique challenges for their caregivers. The sickest of these are those with chronic critical illness (CCI). These infants' medical fragility and resource-intensive needs puts them at increased risk for suboptimal transitions from hospital- to home-based care. It is unclear whether, and if so, to what extent clinicians gather and use knowledge of a family's home context during discharge planning. METHODS: This study is a pilot of a novel program, using Photovoice methodology, which aims to record and reflect the experience of caring for a child with CCI at home from caregivers' perspectives and to provide direct feedback to inpatient discharging clinicians, with the goal of increasing awareness of (a) the importance of home context and (b) current discharge limitations. RESULTS: Through photographs, parents described the importance of developing new routines, learning how to be a family, the impact of medical technology on nearly all aspects of everyday life, the critical role played by clinicians during the transition home, and feelings of social stigma and isolation. Clinicians, in turn, learned about gaps in discharge planning and the value of making families part of the decision-making team. They also found meaning in seeing the children they had cared for doing well at home, which subsequently bolstered enthusiasm for their job. CONCLUSIONS: Findings from this pilot study highlight the importance of understanding the lived experience of families caring for medically complex children at home and suggest that this knowledge can be used to address gaps in the transition home.


Assuntos
Cuidadores/psicologia , Pessoal de Saúde/psicologia , Serviços de Assistência Domiciliar , Pais/psicologia , Fotografação/instrumentação , Criança , Estado Terminal/terapia , Saúde da Família , Feminino , Humanos , Masculino , Alta do Paciente , Fotografação/métodos , Projetos Piloto , Estigma Social
2.
Pediatr Crit Care Med ; 20(12): e546-e555, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31634307

RESUMO

OBJECTIVES: The number of children with medical complexity and prolonged hospitalizations is rising. Strategies to adapt acute care approaches for this population are falling behind clinical demand. This study aimed to identify how inpatient team communication practices match the needs of teams caring for these patients and families, and to identify priority areas for improvement. DESIGN: Cross-sectional mixed methods survey. SETTING: Academic children's hospital. SUBJECTS: Interdisciplinary healthcare professionals: physicians, nurse practitioners, nurses, resident and fellow trainees, respiratory therapists, clinical pharmacists, occupational therapists, physical therapists, social workers, and child life specialists. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Four-hundred eight interdisciplinary healthcare professionals participated (33% response rate). Half (53%) worked in ICUs and 37% had greater than 10 years clinical experience. Three overarching themes emerged regarding communication during care of children with prolonged hospitalizations are as follows: 1) Dysfunctional team collaboration: the many involved healthcare providers for these children have inconsistent team meetings and few platforms for reaching clinical consensus; 2) Continuity gaps: time-limited clinician rotations and no designated longitudinal clinical leaders undermine relationships with families and key elements of shared decision-making; and 3) Inadequate communication skills and tools: healthcare professionals have inadequate training to address complex conversations and big picture concerns, and often default to daily management conversations. Nearly half (40%) perceived intra-team conflict to occur more commonly during care of these children compared with those with short hospitalizations, and many feel unskilled to address these conflicts. Healthcare providers working in ICUs were more likely than other healthcare providers to find care of children with chronic critical illness stressful "most of the time" (ICU 46%; 60/131 vs non-ICU 25%; 21/84; p = 0.02). CONCLUSIONS: Acute care inpatient communication practices require modification to meet the needs of healthcare professionals who provide longitudinal care to children with repeated and prolonged hospitalizations. Improvement strategies should prioritize building collaboration, continuity, and communication skills among healthcare professionals.


Assuntos
Comunicação , Estado Terminal/terapia , Hospitais Pediátricos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Centros Médicos Acadêmicos , Adulto , Doença Crônica , Continuidade da Assistência ao Paciente/organização & administração , Comportamento Cooperativo , Estudos Transversais , Feminino , Humanos , Relações Interprofissionais , Masculino , Pessoa de Meia-Idade , Adulto Jovem
3.
J Pain Symptom Manage ; 60(5): 959-967, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32540469

RESUMO

CONTEXT: Children with chronic critical illness (CCI) have repeated and prolonged hospitalizations. Discrete communication challenges characterize their inpatient care. OBJECTIVES: Develop, implement, and evaluate a communication training for inpatient clinicians managing pediatric CCI. METHODS: A one-day communication training for interdisciplinary clinicians, incorporating didactic sessions and simulated family and interdisciplinary team meetings. RESULTS: Learners had an average of 11 years' clinical experience. About 34% lacked prior communication training relevant to pediatric CCI. Mean baseline competence across communication skills was 2.6 (range 2.4-3.2), corresponding to less than somewhat prepared; after the training, this increased to a mean of 4.0 (range 3.5-4.5), corresponding to well prepared. Skills with greatest improvement included conducting a family meeting, delivering bad news, discussing stopping intensive care, and end-of-life communication. After one month, perceived competence was sustained for seven of 10 skills; for remaining skills, perceived competence scores decreased by 0.1-0.2. About 100% of learners would recommend the training to colleagues; 89% advocated it for all clinicians caring for children with CCI. CONCLUSION: Interdisciplinary communication training regarding long stay patients is feasible and valued by novice and seasoned clinicians. The novel integration of intrateam communication skills alongside team-family skills reflects the reality that the care of children with CCI challenges clinicians to communicate well with each other and families. Teaching interdisciplinary teams to share communication skills has the potential to overcome reported limitations of existing inpatient discussions, which can be dominated by one or two physicians and lack contributions from diverse team members.


Assuntos
Comunicação , Estado Terminal , Criança , Doença Crônica , Competência Clínica , Cuidados Críticos , Estado Terminal/terapia , Hospitalização , Humanos
4.
Child Adolesc Psychiatr Clin N Am ; 27(4): 539-550, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30219216

RESUMO

Decisions regarding whether or not to pursue experimental therapies or life-sustaining medical treatment of children with life-limiting illness can be a significant source of distress and conflict for both families and health care providers. This article reviews the concepts of parental permission (consent), assent, and emerging capacity and how they relate to decision-making for minors with serious illness. Decision-making capacity for adolescents is discussed generally and in the context of emotionally charged situations pertaining to the end of life. Strategies for minimizing conflict in situations of disagreement between children and families are provided.


Assuntos
Tomada de Decisão Clínica/ética , Tomada de Decisões/ética , Consentimento Livre e Esclarecido/ética , Adolescente , Criança , Humanos , Menores de Idade , Relações Pais-Filho , Pais/psicologia , Médicos/ética
5.
AMA J Ethics ; 19(8): 802-814, 2017 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-28846520

RESUMO

As more countries adopt laws and regulations concerning euthanasia, pediatric euthanasia has become an important topic of discussion. Conceptions of what constitutes harm to patients are fluid and highly dependent on a myriad of factors including, but not limited to, health care ethics, family values, and cultural context. Euthanasia could be viewed as iatrogenic insofar as it results in an outcome (death) that some might consider inherently negative. However, this perspective fails to acknowledge that death, the outcome of euthanasia, is not an inadvertent or preventable complication but rather the goal of the medical intervention. Conversely, the refusal to engage in the practice of euthanasia might be conceived as iatrogenic insofar as it might inadvertently prolong patient suffering. This article will explore cultural and social factors informing families', health care professionals', and society's views on pediatric euthanasia in selected countries.


Assuntos
Atitude do Pessoal de Saúde , Eutanásia/ética , Doença Iatrogênica , Pediatria , Diversidade Cultural , Eutanásia/psicologia , Família/psicologia , Humanos , Pais/psicologia
6.
Chest ; 130(4): 1039-47, 2006 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-17035436

RESUMO

BACKGROUND: The high burden of asthma appears to be related to poor asthma control. Although previous studies have reported associations between depressive disorders (DDs) and anxiety disorders (ADs) and worse asthma control and quality of life, the relative impact of these disorders on asthma control and quality of life has not been explored. This study evaluated the relative impact of having a DD and/or AD on asthma control and quality of life. METHOD: Five hundred four consecutive adults with confirmed, physician-diagnosed asthma underwent a brief, structured psychiatric interview using the Primary Care Evaluation of Mental Disorders. Asthma control and asthma-related quality of life were assessed using the Asthma Control Questionnaire (ACQ) and the Asthma Quality of Life Questionnaire (AQLQ). All patients underwent standard spirometry. RESULTS: Thirty-one percent of patients (n = 157) met the diagnostic criteria for one or more psychiatric disorders (8% had DD only, 12% had AD only, and 11% had both). Analyses revealed independent effects for DDs on total ACQ scores (p < 0.01), and for DDs and ADs on total AQLQ scores and all four AQLQ subscales (p < 0.05). There were no interaction effects. CONCLUSIONS: Results suggest that DDs and ADs are associated with worse asthma-related quality of life, but only DDs are associated with worse asthma control. Interestingly, having both a DD and an AD did not confer additional risk for worse asthma control or quality of life. Physicians may want to consider the differential impact of negative mood states when assessing levels of asthma control and quality of life.


Assuntos
Antiasmáticos/administração & dosagem , Transtornos de Ansiedade/complicações , Asma/tratamento farmacológico , Asma/psicologia , Transtorno Depressivo/complicações , Cooperação do Paciente/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Transtornos de Ansiedade/diagnóstico , Transtornos de Ansiedade/epidemiologia , Asma/epidemiologia , Comorbidade , Estudos Transversais , Transtorno Depressivo/diagnóstico , Transtorno Depressivo/epidemiologia , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Quebeque , Fatores de Risco , Inquéritos e Questionários
7.
CNS Drugs ; 20(1): 51-66, 2006.
Artigo em Inglês | MEDLINE | ID: mdl-16396524

RESUMO

The debate over whether clinical psychologists should be granted the right to prescribe psychoactive medications has received considerable attention over the past 2 decades in North America and, more recently, in the UK. Proponents of granting prescription privileges to clinical psychologists argue that mental healthcare services are in crisis and that the mental health needs of society are not being met. They attribute this crisis primarily to the inappropriate prescribing practices of general practitioners and a persistent shortage of psychiatrists. It is believed that, as they would increase the scope of the practice of psychology, prescription privileges for psychologists would enhance mental health services by increasing public access to qualified professionals who are able to prescribe. The profession of psychology remains divided on the issue, and opponents have been equally outspoken in their arguments. The purpose of the present article is to place the pursuit of prescription privileges for psychologists in context by discussing the historical antecedents and major forces driving the debate. The major arguments put forth for and against prescription privileges for psychologists are presented, followed by a critical analysis of the validity and coherence of those arguments. Through this analysis, the following question is addressed. Is there currently sufficient empirical support for the desirability, feasibility, safety and cost effectiveness of granting prescription privileges to psychologists? Although proponents of granting prescription privileges to psychologists present several compelling arguments in favour of this practice, there remains a consistent lack of empirical evidence for the desirability, feasibility, safety and cost effectiveness of this proposal. More research is needed before we can conclude that prescription privileges for psychologists are a safe and logical solution to the problems facing the mental healthcare system.


Assuntos
Prescrições de Medicamentos , Legislação de Medicamentos , Psicologia Clínica/legislação & jurisprudência , Psicotrópicos , Humanos , Autonomia Profissional
8.
Respir Med ; 99(10): 1249-57, 2005 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-16140225

RESUMO

BACKGROUND: Achieving good asthma control has become the major goal of asthma treatment. Studies have reported a high rate of psychiatric disorders among asthma patients, though the impact of these disorders on asthma control and quality of life remains unexplored. This study evaluated the prevalence of psychiatric disorders in 406 adult asthma patients, and associations between psychiatric status, levels of asthma control, and asthma-related quality of life. METHODS: Consecutive asthma patients presenting to the asthma clinic underwent a brief, structured psychiatric interview, completed the Asthma Control Questionnaire (ACQ) and Asthma Quality of Life Questionnaire (AQLQ), and reported the frequency of bronchodilator use in the past week. All patients underwent standard pulmonary function testing. RESULTS: A total of 34% (n=136) of patients had one or more psychiatric diagnosis, including major depression (15%), minor depression (5%), dysthymia (4%), panic disorder (12%), generalized anxiety disorder (5%), and social phobia (4%). Though there were no differences in pulmonary function, patients with versus without psychiatric disorders had worse ACQ and AQLQ scores and reported greater bronchodilator use, independent age, sex and asthma severity. CONCLUSIONS: Results suggest that psychiatric disorders are prevalent among asthmatics and are associated with worse asthma control and quality of life. Physicians should be aware of the potential risk of poorer asthma control and functional impairment in this population.


Assuntos
Asma/psicologia , Transtornos Mentais/complicações , Adulto , Asma/tratamento farmacológico , Asma/fisiopatologia , Broncodilatadores/uso terapêutico , Feminino , Volume Expiratório Forçado , Humanos , Masculino , Transtornos Mentais/epidemiologia , Pessoa de Meia-Idade , Prevalência , Qualidade de Vida , Índice de Gravidade de Doença , Inquéritos e Questionários
9.
J Behav Med ; 31(4): 331-9, 2008 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-18612807

RESUMO

There is growing evidence linking psychological stress to atopic disease, particularly asthma. Anxiety sensitivity, which is the fear of anxiety-related symptoms, may be particularly important in the study of anxiety and atopic disease. The present study examined the association between atopy and anxiety sensitivity in adult asthmatics. A total of 217 asthma patients who had undergone standard pulmonary function and allergen skin prick testing were included. Participants completed the Anxiety Sensitivity Index, Penn State Worry Questionnaire, Type D Personality Scale-16 and Beck Depression Inventory-II on the day of their asthma clinic visit. Total Anxiety Sensitivity Index score was found to be significantly higher in atopic (M = 17.15, SE = .9) versus non-atopic (M = 12.68, SE = 1.5) asthmatics, independent of age, sex, smoking status, asthma severity, asthma duration, and anxiolytic medication use (F = 6.11, p = .014). There was no evidence for a significant association between any of the other questionnaire scores and atopic status.


Assuntos
Ansiedade/psicologia , Asma/psicologia , Hipersensibilidade Respiratória/psicologia , Adulto , Idoso , Ansiedade/complicações , Nível de Alerta , Feminino , Volume Expiratório Forçado , Humanos , Comportamento de Doença , Testes Intradérmicos , Masculino , Pessoa de Meia-Idade , Inventário de Personalidade , Hipersensibilidade Respiratória/complicações , Fatores de Risco , Estresse Psicológico/complicações , Capacidade Vital
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