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1.
Perspect Biol Med ; 65(2): 262-273, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938434

RESUMO

Historically, people with intellectual/developmental disabilities (IDD) lived in institutions with little contact with the community. Having a label of "mental retardation" meant they were incapable of living and working outside of the institution. These individuals were protected from risk and harms and had little input into how they lived their lives. Perske (1972) challenged the idea that persons with IDD necessarily had to be protected from the harms one faces in daily life. He championed the principle of "dignity of risk," respecting their right to weigh risks and harms of their choices. Over time, federal, state, and local agencies embraced the idea that people with IDD should be integrated into communities and receive supports so they may live their lives to the fullest. This article discusses how a community agency worked with their clients with IDD to balance their personal liberties with acceptable risks as they live and work in the community. Approaches such as the use of a Risk Committee or the empowerment of direct care workers in assessing risks are described through case illustrations.


Assuntos
Deficiências do Desenvolvimento , Deficiência Intelectual , Criança , Pessoal de Saúde , Humanos , Masculino , Respeito
2.
J Psychosoc Nurs Ment Health Serv ; 60(2): 27-32, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34432590

RESUMO

The current project's objective was to increase mental health assessor's knowledge about type 2 diabetes after attending a nurse practitioner's presentation. Mental health assessors, primarily social workers, help transition individuals with severe mental illness (SMI) and comorbidities from inpatient nursing homes back into the community. The assessor's knowledge about individual comorbidities, such as diabetes, is crucial for a successful long-term community transition. Mental health assessors were given the Diabetes Knowledge Test 2 pre- and post-educational intervention. The post-test intervention revealed assessors' knowledge increased by 25% in knowledge about diabetes and 225% in ability to use a glucometer. Mental health assessors also maintained their increased knowledge 3 months post-intervention. Emboldened with this knowledge, mental health assessors are better prepared to facilitate safe transfer of individuals with diabetes and SMI back into the community. Mental health assessors may also help prevent unnecessary emergency department visits and/or hospitalizations. [Journal of Psychosocial Nursing and Mental Health Services, 60(2), 27-32.].


Assuntos
Serviços Comunitários de Saúde Mental , Diabetes Mellitus Tipo 2 , Transtornos Mentais , Enfermagem Psiquiátrica , Autogestão , Diabetes Mellitus Tipo 2/terapia , Humanos , Transtornos Mentais/terapia , Saúde Mental , Autocuidado
3.
J Pediatr Health Care ; 35(5): 461-470, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34210554

RESUMO

INTRODUCTION: The American Academy of Pediatrics created evidence-based guidelines that encourage early identification and referral for children with developmental delays. Although pediatric primary care providers are poised to link 3-to-5-year-old children to school-based services, there are gaps in making referrals. METHOD: Educational dissemination of streamlined referral packets was introduced. Knowledge and perceived confidence were measured following an educational presentation. Retrospective chart reviews compared referral rates to preschool special education services when developmental delays were identified. RESULTS: Mean pretest to posttest knowledge and perceived confidence to refer children to preschool special education increased following education. Referral rates for 3-5 years-old by pediatric primary care providers doubled during the initial 8-week implementation period and remained constant 9 months later. DISCUSSION: Educational dissemination of a streamlined referral process in pediatric primary care is a sustainable approach that ensures preschool-aged children with developmental delays receive timely referrals for further school-based evaluations and interventions.


Assuntos
Pediatria , Encaminhamento e Consulta , Pré-Escolar , Educação Inclusiva , Humanos , Atenção Primária à Saúde , Estudos Retrospectivos
4.
Res Nurs Health ; 43(6): 590-601, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32990995

RESUMO

Health-promoting behaviors have been shown to enhance the quality of life across diverse populations. In this study, we examined the indirect effects of several health-promoting behaviors on the relationship between parenting stress and health-related quality of life in mothers of children with cerebral palsy (CP). A convenience sample of Korean mothers (N = 180) of children aged 10 months to 12 years with CP was recruited from clinical and school settings. Health-promoting behaviors were measured using the health-promoting lifestyle profile II, which is comprised of six subscales: health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, and stress management. Multiple mediation analyses were conducted to examine the mediating role of these behavioral categories. Spiritual growth (ß = .56, p < .05) had an indirect effect on the relationship between parenting stress and physical health-related quality of life while spiritual growth (ß = -1.00, p < .01) and stress management (ß = -.80, p < .05) were found to mediate the association between parenting stress and mental health-related quality of life. The findings of multiple mediation analyses provide evidence of the influence of specific health-promoting behaviors on health-related quality of life, thereby informing the development of intervention programs for mothers of children with disabilities.


Assuntos
Paralisia Cerebral/enfermagem , Promoção da Saúde , Relações Mãe-Filho/psicologia , Mães/psicologia , Qualidade de Vida , Estresse Psicológico/psicologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , República da Coreia
5.
J Psychosoc Nurs Ment Health Serv ; 58(1): 39-45, 2020 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-31895970

RESUMO

The objective of this quality improvement project was to decrease the amount of benzodiazepines (BZDs) prescribed by providers at a Midwestern university outpatient clinic. Clinic providers participated in a brief, live educational intervention combining academic detailing (i.e., the provision of current evidence about BZD) and pharmaceutical detailing (i.e., a sales technique borrowed from pharmaceutical companies). A 1% decrease in BZD prescribing was set as the measure of success. Using data from the electronic medical record, the monthly average of BZD prescriptions written within calendar year 2017 (before project launch) was compared to the number written 30 days after the intervention. Following the intervention, an 80% reduction in BZD prescribing was calculated. Combined academic and pharmaceutical detailing could be an effective way to change prescribing behavior in this provider population. Further investigation is needed to ascertain whether the change in prescribing behavior can be sustained, and that no harm is being done to patients who are currently dependent on BZD medications. [Journal of Psychosocial Nursing and Mental Health Services, 58(1), 39-45.].


Assuntos
Instituições de Assistência Ambulatorial , Benzodiazepinas/efeitos adversos , Desprescrições , Melhoria de Qualidade , População Urbana , Registros Eletrônicos de Saúde/estatística & dados numéricos , Humanos , Meio-Oeste dos Estados Unidos , Enfermagem Psiquiátrica
6.
Appl Nurs Res ; 50: 151204, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31669082

RESUMO

BACKGROUND: Neonatal Intensive Care Unit (NICU) nurses in Korea often experience challenges in providing care for dying infants and their families. However, there is limited understanding about what contributes to the challenges related to end-of-life care. PURPOSE: To describe NICU nurses' perceived roles and challenges faced while providing end-of-life care in South Korea. METHODS: A qualitative descriptive study was conducted with 20 NICU nurses in South Korea using semi-structured interviews. Participants were recruited from two NICUs in Seoul, where infant mortality is the highest in South Korea. Transcribed interviews were coded by two research personnel, and subsequently, a developed coding book was translated by three research personnel. The codes developed were categorized and peer-reviewed to develop themes using conventional content analysis. RESULTS: Nurses' roles during end-of-life care were grouped into four categories: providing information and support, enhancing attachment between the parents and infants, providing direct care to the infant, and completing documentation. Nurses' perceived challenges during end-of-life care included providing end-of-life care without adequate experience and knowledge, environmental constraints on end-of-life care, and conflicted situations during end-of-life care. CONCLUSION: Although the nurses provided the best care they could, their end-of-life care practice was hindered for various reasons. To enhance NICU nurses' ability to provide and make them more capable of providing high quality EOL care, hospitals need to support nurse education and improve staffing level, and create in NICUs an environment that is favorable for providing EOL care.


Assuntos
Atitude do Pessoal de Saúde , Unidades de Terapia Intensiva Neonatal/normas , Papel do Profissional de Enfermagem/psicologia , Enfermeiros Neonatologistas/psicologia , Guias de Prática Clínica como Assunto , Assistência Terminal/psicologia , Adulto , Feminino , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , República da Coreia
7.
J Palliat Med ; 22(7): 848-857, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30632880

RESUMO

Background: End-of-life (EOL) care in neonatal intensive care units (NICUs) can vary depending on religious beliefs of health care providers and families as well as the sociocultural environment. Although guidelines exist for EOL care in NICUs, most are based on Western studies, and little is known about such care in Asian countries, which have different religious and social background. Objective: This review synthesized empirical research to reveal the state of the science on infant EOL care in Asian countries. Design: This was an integrative review. Setting/Subjects: Data were collected from studies identified in CINAHL, Embase, PsycINFO, and PubMed. The search was limited to current empirical studies involving infant EOL care in Asian countries and published in English between 2007 and 2016. Results: Of 286 studies initially identified, 11 empirical studies conducted in Hong Kong, India, Israel, Japan, Mongolia, Taiwan, and Turkey were included in the review. Four themes were captured: factors influencing decision making, trends in decision making, practical aspects of EOL care, and health care providers' preparation. In most NICUs, health care providers controlled decisions regarding use of life-sustaining treatment, with parents participating in decision making no more than 60% of the time. Although care decisions were gradually changing from "do everything" for patient survival to a more palliative approach, comfort care at the EOL was chosen no more than 63% of the time. Conclusion: While infant EOL care practice and research vary by country, few articles address these matters in Asia. This integrative review characterizes infant EOL care in Asia and explores cultural influences on such care.


Assuntos
Unidades de Terapia Intensiva Neonatal , Assistência Terminal , Ásia , Características Culturais , Tomada de Decisões , Humanos , Recém-Nascido , Religião
8.
J Matern Fetal Neonatal Med ; 32(5): 820-825, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29103318

RESUMO

OBJECTIVE: To examine prospective parents' perceptions of management options and outcomes in the context of threatened periviable delivery, and the values they apply in making antenatal decisions during this period. STUDY DESIGN: Qualitative analysis of 46 antenatal interviews conducted at three tertiary-care hospitals with 54 prospective parents (40 pregnant women, 14 partners) who had received counseling for threatened periviable delivery (40 cases). RESULTS: Participants most often recalled being involved in resuscitation, cerclage, and delivery mode decisions. Over half (63.0%) desired a shared decision-making role. Most (85.2%) recalled hearing about morbidity and mortality, with many reiterating terms like "brain damage", "disability", and "handicap". The potential for disability influenced decision making to variable degrees. In describing what mattered most, participant spoke of giving their child a "fighting chance"; others voiced concerns about "best interest", a "healthy baby", "pain and suffering", and religious faith. CONCLUSIONS: Our findings underscore the importance of presenting clear information on disability and eliciting the factors that parents deem most important in making decisions about periviable birth.


Assuntos
Tomada de Decisões , Viabilidade Fetal , Pais/psicologia , Feminino , Humanos , Cuidados para Prolongar a Vida/psicologia , Masculino , Gravidez , Pesquisa Qualitativa
11.
J Appl Res Intellect Disabil ; 30(6): 1045-1056, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28585240

RESUMO

BACKGROUND: The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood. METHOD: A range of databases and search engines were used to locate conceptual, clinical and research articles from relevant peer-reviewed journals. RESULTS: The present authors present a literature review of the agency, social and healthcare supports that impact end-of-life care for adults with intellectual disabilities. More information is needed about where people with intellectual disabilities are living at the very end of life and where they die. CONCLUSIONS: The support needs for adults with intellectual disabilities will change over time, particularly at the end of life. There are some areas, such as removing barriers to providing services, staff training, partnerships between agencies and palliative care providers, and advocacy, where further research may help to improve the end-of-life care for adults with intellectual disabilities.


Assuntos
Deficiência Intelectual , Pessoas com Deficiência Mental/psicologia , Apoio Social , Assistência Terminal , Humanos
13.
Appl Nurs Res ; 28(2): 202-5, 2015 May.
Artigo em Inglês | MEDLINE | ID: mdl-25457272

RESUMO

Although the 4 million+people in the U.S. with an intellectual or developmental disability (I/DD) experience the same life expectancy as those in the general population, end-of-life research including these individuals is lacking and can be difficult to implement. As will be described in this paper, it is possible to overcome barriers to successfully include people with I/DD in end-of-life research. In this paper, the implementation challenges, feasibility, and implications for successful end-of-life research with individuals with I/DD using focus groups are described. Individuals with I/DD were able to discuss their experiences and views about end-of-life care. However, while people with I/DD made valuable contributions to the focus groups, there were several modifications needed in order to execute this study. In order to gain a complete picture of end-of-life care for people with I/DD, it is imperative to include them in research to the best of their ability. By anticipating issues related to recruitment, the consent process, setting, and support needs of participants, focus groups can be successfully implemented.


Assuntos
Pesquisa Biomédica , Deficiências do Desenvolvimento/genética , Assistência Terminal , Adulto , Grupos Focais , Humanos
14.
Palliat Support Care ; 13(2): 145-55, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24183005

RESUMO

OBJECTIVE: When infants are at risk of being born at a very premature gestation (22-25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers. METHODS: Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme "Quality of Interactions." These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions. RESULTS: Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for). SIGNIFICANCE OF RESULTS: Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.


Assuntos
Aconselhamento , Lactente Extremamente Prematuro , Cuidados Paliativos , Pais/psicologia , Assistência Perinatal/métodos , Qualidade da Assistência à Saúde , Adulto , Feminino , Humanos , Recém-Nascido , Masculino , Gravidez
15.
Brain Inj ; 27(13-14): 1536-48, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24087991

RESUMO

OBJECTIVE: Little guidance exists for discussing prognosis in early acute care with parents following children's severe traumatic brain injury (TBI). Providers' beliefs about truth-telling can shape what is said, how it is said and how providers respond to parents. METHODS: This study was part of a large qualitative study conducted in the US (42 parents/37 families) following children's moderate-to-severe TBI (2005-2007). Ethnography of speaking was used to analyse interviews describing early acute care following children's severe TBI (29 parents/25 families). RESULTS: Parents perceived that: (a) parents were disadvantaged by provider delivery; (b) negative outcome values dominated some provider's talk; (c) truth-telling involves providers acknowledging all possibilities; (d) framing the child's prognosis with negative medical certainty when there is some uncertainty could damage parent-provider relationships; (e) parents needed to remain optimistic; and (f) children's outcomes could differ from providers' early acute care prognostications. CONCLUSION: Parents blatantly and tacitly revealed their beliefs that providers play an important role in shaping parent reception of and synthesis of prognostic information, which constructs the family's ability to cope and participate in shared decision-making. Negative medical certainty created a fearful or threatening environment that kept parents from being fully informed.


Assuntos
Adaptação Psicológica , Lesões Encefálicas/psicologia , Comunicação , Pais/psicologia , Papel do Médico , Relações Profissional-Família , Estresse Psicológico/etiologia , Adulto , Criança , Pré-Escolar , Aconselhamento , Cuidados Críticos , Tomada de Decisões , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Pesquisa Qualitativa , Percepção Social , Apoio Social , Fatores Socioeconômicos , Fatores de Tempo , Índices de Gravidade do Trauma , Revelação da Verdade , Estados Unidos
16.
Soc Sci Med ; 90: 32-9, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23746606

RESUMO

Healthcare provider talk with parents in early acute care following children's severe traumatic brain injury (TBI) affects parents' orientations to these locales, but this connection has been minimally studied. This lack of attention to this topic in previous research may reflect providers' and researchers' views that these locales are generally neutral or supportive to parents' subsequent needs. This secondary analysis used data from a larger descriptive phenomenological study (2005-2007) with parents of children following moderate to severe TBI recruited from across the United States. Parents of children with severe TBI consistently had strong negative responses to the early acute care talk processes they experienced with providers, while parents of children with moderate TBI did not. Transcript data were independently coded using discourse analysis in the framework of ethnography of speaking. The purpose was to understand the linguistic and paralinguistic talk factors parents used in their meta-communications that could give a preliminary understanding of their cultural expectations for early acute care talk in these settings. Final participants included 27 parents of children with severe TBI from 23 families. We found the human constructed talk factors that parents reacted to were: a) access to the child, which is where information was; b) regular discussions with key personnel; c) updated information that is explained; d) differing expectations for talk in this context; and, e) perceived parental involvement in decisions. We found that the organization and nature of providers' talk with parents was perceived by parents to positively or negatively shape their early acute care identities in these locales, which influenced how they viewed these locales as places that either supported them and decreased their workload or discounted them and increased their workload for getting what they needed.


Assuntos
Atitude Frente a Saúde , Lesões Encefálicas/terapia , Comunicação , Pais/psicologia , Relações Profissional-Família , Adolescente , Criança , Cuidados Críticos , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Fatores de Tempo , Índices de Gravidade do Trauma , Adulto Jovem
17.
Qual Health Res ; 22(9): 1232-46, 2012 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-22745363

RESUMO

This study evaluated parents' and health care providers' (HCPs) descriptions of hope following counseling of parents at risk of delivering an extremely premature infant. Data came from a longitudinal multiple case study investigation that examined the decision making and support needs of 40 families and their providers. Semistructured interviews were conducted before and after delivery. Divergent viewpoints of hope were found between parents and many HCPs and were subsequently coded using content analysis. Parents relied on hope as an emotional motivator, whereas most HCPs described parents' notions of hope as out of touch with reality. Parents perceived that such divergent beliefs about the role of hope negatively shaped communicative interactions and reduced trust with some of their providers. A deeper understanding of how varying views of hope might shape communications will uncover future research questions and lead to theory-based interventions aimed at improving the process of discussing difficult news with parents.


Assuntos
Comunicação , Aconselhamento Diretivo/métodos , Lactente Extremamente Prematuro/psicologia , Educação de Pacientes como Assunto/métodos , Relações Profissional-Família , Percepção Social , Adulto , Tomada de Decisões , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Hospitais , Humanos , Recém-Nascido , Entrevista Psicológica , Estudos Longitudinais , Masculino , Grupo Associado , Pesquisa Qualitativa , Gravação em Fita , Revelação da Verdade
18.
J Perinat Neonatal Nurs ; 25(1): 52-60, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21311270

RESUMO

Most deaths of extremely premature infants occur in the perinatal period. Yet, little is known about how parents make life support decisions in such a short period of time. In the paper, how parents make life support decisions for extremely premature infants from the prenatal period through death from the perspectives of parents, nurses, and physicians is described. Five cases, comprised of five mothers, four neonatologists, three nurses, and one neonatal nurse practitioner, are drawn from a larger collective case study. Prenatal, postnatal and end-of-life interviews were conducted, and medical record data were obtained. In an analysis by two research team members, mothers were found to exhibit these characteristics: desire for and actual involvement in life support decisions, weighing pain, suffering and hope in decision making, and wanting everything done for their infants. All mothers received decision making help and support from partners and family, but relationships with providers were also important. Finally, external resources impacted parental decision making in several of the cases. By understanding what factors contribute to parents' decision making, providers may be better equipped to prepare and assist parents when making life support decisions for their extremely premature infants.


Assuntos
Atitude Frente a Morte , Tomada de Decisões , Recém-Nascido de Peso Extremamente Baixo ao Nascer/psicologia , Cuidados para Prolongar a Vida/psicologia , Pais/psicologia , Nascimento Prematuro/psicologia , Adulto , Feminino , Humanos , Recém-Nascido , Acontecimentos que Mudam a Vida , Masculino , Mães/psicologia , Enfermagem Neonatal/métodos , Pesquisa Metodológica em Enfermagem , Pais/educação , Gravidez , Nascimento Prematuro/enfermagem , Inquéritos e Questionários , Revelação da Verdade , Suspensão de Tratamento , Adulto Jovem
19.
J Obstet Gynecol Neonatal Nurs ; 39(2): 147-58, 2010.
Artigo em Inglês | MEDLINE | ID: mdl-20409115

RESUMO

OBJECTIVE: To describe nurse behaviors that assisted parents to make life-support decisions for an extremely premature infant before and after the infant's birth. DESIGN: Qualitative, longitudinal, collective case study where interviews were done pre- and postnatally and medical chart data were collected. SETTING: Interviews were conducted face-to-face in a private room in the hospital, in the mother's home, or over the telephone. PARTICIPANTS: A sample of 40 cases (40 mothers, 14 fathers, 42 physicians, 17 obstetric nurses, 6 neonatal nurses, and 6 neonatal nurse practitioners) was recruited from three hospitals that provided high-risk perinatal care. Parents were at least 18 years of age, English speaking, and had participated in a prenatal discussion with a physician regarding treatment decisions for their infant due to threatened preterm delivery. Physicians and nurses were those identified by parents who had spoken to them about life-support treatment decisions for the infant. METHODS: Using a semistructured interview guide, a total of 203 interviews were conducted (137 prenatal, 51 postnatal, and 15 end-of-life). For this analysis, all coded data related to the nurse's role were analyzed and summarized. RESULTS: Parents and nurses described several nurse behaviors: providing emotional support, giving information, and meeting the physical care needs of mothers, infants, and fathers. Physicians' description of the nurse behaviors focused on the way nurses provided emotional support and gave information. CONCLUSIONS: Nurses play a critical role in assisting parents surrounding life-support decisions.


Assuntos
Tomada de Decisões , Recém-Nascido Prematuro , Cuidados para Prolongar a Vida/psicologia , Papel do Profissional de Enfermagem/psicologia , Pais/psicologia , Relações Profissional-Família , Adulto , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Feminino , Comportamento de Ajuda , Humanos , Recém-Nascido , Terapia Intensiva Neonatal/psicologia , Estudos Longitudinais , Masculino , Enfermagem Neonatal/métodos , Pesquisa Metodológica em Enfermagem , Pais/educação , Pesquisa Qualitativa , Apoio Social , Inquéritos e Questionários
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