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1.
Brain Inj ; 35(12-13): 1616-1623, 2021 11 10.
Artículo en Inglés | MEDLINE | ID: mdl-34550819

RESUMEN

PURPOSE: This article presents some issues for consideration before scaling from a pilot study to a larger investigation in longitudinal observational studies of traumatic brain injury (TBI) rehabilitation. MATERIALS AND METHODS: We present a case to discuss protocol improvements in longitudinal TBI-rehabilitation studies. The case was a pilot study conducted at two university hospitals in Denmark investigating 1-year outcomes related to sleep disturbance and agitation during neurointensive care. We included patients with moderate and severe TBI determined by the Glasgow Coma Scale, sleep disturbance was assessed using actigraphy, and agitation was assessed using the Agitated Behavior Scale. RESULTS: Patients (n = 29) were more severely ill and had poorer six-month outcomes in Eastern vs. Western Denmark. Recovery was similar at one-year follow-up. Protocol improvements were needed in relation to inclusion criteria, intervention delivery, patient assessment, and follow-up outcomes. CONCLUSION: In TBI-rehabilitation studies, we suggest adding the severity of disease score to the initial GCS score and a delirium detection score to the ABS score. Actigraphy should not be used during deep sedation. Established procedures should be in place along all stages of the study protocol, including preparation and periodic assessment of study nurses to optimize data quality.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Trastornos del Sueño-Vigilia , Lesiones Traumáticas del Encéfalo/complicaciones , Escala de Coma de Glasgow , Humanos , Proyectos Piloto , Estudios Prospectivos , Sueño , Trastornos del Sueño-Vigilia/etiología
2.
Aust Crit Care ; 34(1): 76-82, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-32698985

RESUMEN

BACKGROUND: Sleep disturbance and agitation are frequent conditions during the subacute period of recovery in moderate to severe traumatic brain injury (TBI). Clarity is needed regarding the association between the two conditions to improve fundamental nursing care. AIM: The aim of our scoping review was to identify the evidence for potential associations between sleep disturbance and agitation during subacute inpatient rehabilitation of adult patients with moderate to severe TBI. DESIGN: We conducted a five-step scoping review. METHODS: Sources of evidence were PubMed, CINAHL, PsycINFO, Cochrane, and Web of Science databases. Eligibility criteria were as follows: English or Scandinavian language articles describing sleep and/or agitation during inpatient rehabilitation of adult patients with moderate to severe TBI and published in the period 2000-2019. RESULTS: We identified 152 articles of which we included six. The included articles were all affiliated with the USA using quantitative methodology. The association between sleep disturbance and agitation is highly complex, with disturbed sleep affecting cognitive and emotional functions. Sleep disturbance was associated with posttraumatic amnesia (PTA)/posttraumatic confusional state, cognitive function, and agitation. Our review suggested a bidirectional association between these symptoms during early TBI rehabilitation. We inferred that improved sleep might be a contributing factor to the resolution of PTA, cognitive impairment, and agitation. CONCLUSION: The association between sleep disturbance and agitation is still undetermined, but we assume that improved sleep may protect against neuropsychiatric problems in patients with moderate to severe TBI. Larger controlled interventional studies are needed to provide the evidence of modifiable factors for improving sleep during inpatient TBI rehabilitation. Owing to the current lack of publications, it is probably too early to perform a systematic review on the topic. RELEVANCE TO CLINICAL PRACTICE: We recommend systematic implementation of sleep hygiene during inpatient rehabilitation of patients with TBI to reduce PTA, agitation, and long-term neuropsychiatric problems.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Disfunción Cognitiva , Trastornos del Sueño-Vigilia , Adulto , Lesiones Traumáticas del Encéfalo/complicaciones , Humanos , Pacientes Internos , Sueño , Trastornos del Sueño-Vigilia/etiología
3.
J Clin Nurs ; 29(11-12): 2031-2038, 2020 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-32129517

RESUMEN

AIMS AND OBJECTIVES: To determine weight status and risk of overweight up to 1 year after severe traumatic brain injury (TBI) as basis for defining nursing-sensitive indicators of fundamental nutritional nursing care in a clinical quality database. BACKGROUND: Patients' nutritional needs are recognised as fundamental care during hospitalisation, but less attention has been given to nutritional status after discharge. DESIGN: Nationwide cohort study. The STROBE checklist was used to ensure reporting quality. METHODS: Data were retrieved from the Danish Head Trauma Database, a clinical quality database aiming at improving the quality of neurorehabilitation. Individuals aged ≥ 15 years with severe TBI 2011-2015 (N = 424) were included. Normal weight, underweight and overweight were described according to the body mass index (BMI) at admission to subacute rehabilitation, at discharge and at 1 year postinjury. The probability of transition between weight groups from admission to 1 year postinjury was calculated. Multivariable binominal regression analyses compared risk of overweight between age groups. RESULTS: The prevalence of underweight decreased from 13% at admission to 6% and 3% at discharge and 1 year postinjury, respectively. The prevalence of overweight was stable at 26%-27% at admission and discharge and increased to 44% at 1 year postinjury. Of the individuals not overweight at admission, 28% became overweight by 1 year postinjury. Overweight was significantly more prevalent in older compared to younger individuals. The risk of becoming overweight among those not overweight at admission did not differ between age groups. CONCLUSION: Underweight individuals achieved normal weight during inpatient rehabilitation. By 1 year postinjury, individuals were increasingly overweight. RELEVANCE TO CLINICAL PRACTICE: Weight status has potential as nursing-sensitive indicators that may be included in clinical quality databases to inform the organisational and policy level on the state of fundamental nutritional nursing care. The inclusion emphasise requested responsibilities of nursing care. This facilitates health economic attention and influences nursing professional execution.


Asunto(s)
Lesiones Traumáticas del Encéfalo/epidemiología , Estado Nutricional , Obesidad/epidemiología , Delgadez/epidemiología , Adolescente , Adulto , Anciano , Índice de Masa Corporal , Lesiones Traumáticas del Encéfalo/enfermería , Lesiones Traumáticas del Encéfalo/rehabilitación , Estudios de Cohortes , Bases de Datos Factuales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Alta del Paciente/estadística & datos numéricos , Adulto Joven
4.
Qual Health Res ; 29(12): 1711-1724, 2019 10.
Artículo en Inglés | MEDLINE | ID: mdl-30862270

RESUMEN

Stroke patients' well-being is threatened after stroke. A psychosocial intervention was developed for Norwegian stroke patients living in the community. Eight individual sessions between people with stroke and a trained health care professional were conducted 1 to 6 months post-stroke with one group of participants and 6 to 12 months post-stroke with another group. Subsequently, 19 of these stroke patients were interviewed to gain an in-depth understanding of their lived experience of the influence of the intervention on their adjustment process. Interview texts were analyzed using Ricoeur's interpretation theory. Two participants did not personally find the intervention useful. The remaining participants greatly appreciated dialogues with the empathetic intervention personnel, feeling free to discuss their fears and worries. The intervention raised these participants' awareness of their needs and resources. They were guided to resume their everyday life and adopt a future-oriented attitude. The intervention facilitated their meaning-making endeavors and post-stroke adjustment.


Asunto(s)
Psicoterapia/métodos , Rehabilitación de Accidente Cerebrovascular/métodos , Accidente Cerebrovascular/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Hermenéutica , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Noruega , Investigación Cualitativa , Índice de Severidad de la Enfermedad
5.
Gastroenterol Nurs ; 42(1): 12-19, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30688702

RESUMEN

The aim of this prospective, descriptive cohort study is to describe the prevalence of lower bowel dysfunction, possible relationship to diagnosis and severity, use of laxatives, and defecation patterns in patients with acquired brain injury during inpatient rehabilitation. Enrollment consisted of all patients admitted to an inpatient rehabilitation hospital (n = 98) within a 3-month period and assessments of fecal incontinence and fecal constipation at admission were performed. Documentation of used laxatives, number of defecations, and the macroscopic form during 4 weeks was conducted. Analysis of variance and Kruskal-Wallis analyses were conducted using the statistical software package STATA v 12/IC. At admission 75% of the patients suffered from lower bowel dysfunction, which was related to the severity of injury and age but not major diagnosis or gender. Of these, 68% suffered from fecal incontinence and 32% from fecal constipation. Ninety percent of the patients received laxatives during the initial 28 days. After 28 days, 20% continued to receive laxative treatment. There was no difference between weekly defecations in patients who had functional constipation and patients who had no bowel dysfunction. There was a strong relationship between bowel dysfunction status and prescribed laxative treatment. These findings indicate that lower gastrointestinal dysfunction is a long-lasting, profound complication following an acquired brain injury.


Asunto(s)
Lesiones Encefálicas/rehabilitación , Estreñimiento/epidemiología , Estreñimiento/terapia , Incontinencia Fecal/epidemiología , Incontinencia Fecal/terapia , Adulto , Anciano , Analgésicos/uso terapéutico , Antibacterianos/uso terapéutico , Antipsicóticos/uso terapéutico , Lesiones Encefálicas/complicaciones , Lesiones Encefálicas/tratamiento farmacológico , Femenino , Humanos , Laxativos/uso terapéutico , Masculino , Persona de Mediana Edad , Prevalencia , Estudios Prospectivos , Adulto Joven
6.
Scand J Caring Sci ; 32(2): 871-879, 2018 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-28869654

RESUMEN

RATIONALE: In the last decades, length of stay of in-hospital rehabilitation of patients with stroke has been significantly reduced. Health authorities expect relatives to be at disposal to convey the knowledge of everyday life and to provide emotional as well as practical support in relation to the patient. Caregivers require nurse assistance, support and to be seen as an essential partner in the care giving process. However, the nurses do not perceive that teaching of relatives is a task they should routinely undertake. This might indicate an ambiguity between the relatives' expectations and the actual contribution from nurses. AIM: This study describes nurses' experienced roles and functions addressing the relatives of patients with stroke during in-hospital rehabilitation. METHODOLOGICAL DESIGN: A phenomenological hermeneutic approach influenced by Paul Ricoeur. In a secondary analysis focus group, interviews of 19 randomly selected nurses from three different hospital settings were interpreted in three levels. The study was conducted in accordance with the ethical guidelines for nursing research in the Nordic countries. FINDINGS: The nurses expressed that they address the patient and the relatives and support the interaction between the patient and the relatives. Four themes occurred: the changed lives of relatives; shared life after stroke; noncooperating relatives; time for the relatives. CONCLUSION: Nurses experience their roles and functions addressing relatives after stroke as crucial, challenging and multifaceted. They acknowledged care needs of the relatives in their own right by addressing the relatives' vulnerability during in-hospital rehabilitation characterised by an existential threat to the physical as well as the shared life. The focus on the needs of relatives considering their expected future role was experienced as conflicting with restricting time frames and a healthcare system focusing on the individual patient.


Asunto(s)
Familia/psicología , Pacientes Internos/psicología , Rol de la Enfermera/psicología , Personal de Enfermería en Hospital/psicología , Enfermería en Rehabilitación/métodos , Rehabilitación de Accidente Cerebrovascular/enfermería , Rehabilitación de Accidente Cerebrovascular/psicología , Adulto , Actitud del Personal de Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Países Escandinavos y Nórdicos
7.
Scand J Caring Sci ; 30(4): 766-773, 2016 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-26842943

RESUMEN

AIM: Investigation of a possible relation between body temperature measurements by the current generation of tympanic ear and rectal thermometers. BACKGROUND: In Denmark, a national guideline recommends the rectal measurement. Subsequently, the rectal thermometers and tympanic ear devices are the most frequently used and first choice in Danish hospital wards. Cognitive changes constitute challenges with cooperating in rectal temperature assessments. With regard to diagnosing, ethics, safety and the patients' dignity, the tympanic ear thermometer might comprise a desirable alternative to rectal noninvasive measurement of body temperature during in-hospital-based neurorehabilitation. DESIGN: A prospective, descriptive cohort study. Consecutive inclusion of 27 patients. Linear regression models were used to analyse 284 simultaneous temperature measurements. ETHICS: Ethical approval for this study was granted by the Danish Data Protection Agency, and the study was completed in accordance with the Helsinki Declaration 2008. RESULTS: About 284 simultaneous rectal and ear temperature measurements on 27 patients were analysed. The patient-wise variability of measured temperatures was significantly higher for the ear measurements. Patient-wise linear regressions for the 25 patients with at least three pairs of simultaneous ear and rectal temperature measurements showed large interpatient variability of the association. CONCLUSION: A linear relationship between the rectal body temperature assessment and the temperature assessment employing the tympanic thermometer is weak. Both measuring methods reflect variance in temperature, but ear measurements showed larger variation.


Asunto(s)
Temperatura Corporal , Trastornos del Conocimiento/fisiopatología , Termómetros , Membrana Timpánica , Adulto , Anciano , Dinamarca , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos
8.
BMJ Open ; 14(6): e080165, 2024 Jun 17.
Artículo en Inglés | MEDLINE | ID: mdl-38889937

RESUMEN

INTRODUCTION: Patients with an acquired brain injury (ABI) are at an increased risk of undernutrition due to the disease-related inflammation and other numerous symptoms that impact their nutrition. Unfortunately, recommendations related to nutritional interventions and related efforts vary. The objective of this scoping review is to map the body of literature on nutritional interventions and related efforts provided by health professionals, such as screening or assessments, addressing undernutrition in adults with a moderate to severe ABI during the subacute rehabilitation pathway. METHODS AND ANALYSIS: The review follows the Joanna Briggs Institute methodology for scoping reviews. The librarian-assisted search strategy will be conducted in the bibliographical databases: MEDLINE (PubMed), Embase, CINAHL, Web of Science and OpenGrey. Indexed and grey literature in English, German or Scandinavian languages from January 2010 will be considered for inclusion. Two independent reviewers will conduct the iterative process of screening the identified literature, paper selection and data extraction. Disagreements will be resolved by discussion until a consensus is reached. A template will be used to guide the data extraction. This scoping review will include research articles, methodological papers and clinical guidelines reporting on nutritional interventions or related efforts to prevent or address undernutrition in adult patients (≥18 years) with moderate to severe ABI within the first year after admission to rehabilitation hospital. We will map all kinds of nutritional efforts provided by professionals in different settings within high-income countries, including interventions targeting relatives. ETHICS AND DISSEMINATION: This review will involve the collection and analysis of secondary sources that have been published and/or are publicly available. Therefore, ethics approval is not required. The results will be published in an international peer-reviewed journal, presented at scientific conferences and disseminated through digital science communication platforms. STUDY REGISTRATION: Open Science Framework: https://doi.org/10.17605/OSF.IO/H5GJX.


Asunto(s)
Lesiones Encefálicas , Desnutrición , Humanos , Lesiones Encefálicas/rehabilitación , Lesiones Encefálicas/complicaciones , Desnutrición/etiología , Desnutrición/prevención & control , Proyectos de Investigación , Literatura de Revisión como Asunto
9.
PLoS One ; 18(10): e0286928, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37878623

RESUMEN

OBJECTIVE: This scoping review explores the characteristics of a meaningful life appraised by adults living with an acquired neurological impairment. INTRODUCTION: Limitations in function, activity or participation following a neurological injury or disease imposes comprehensive changes on the every-day life of the affected person and close relatives. Including patients' perception of a meaningful life is pivotal to facilitate motivation and individualize rehabilitation efforts to address the patients' wishes, hopes, needs, and preferences. Surprisingly, only little research has been devoted to illuminating what a meaningful life is from the impaired person's perspective. Hence, a scoping review of existing knowledge is needed to facilitate person-centered high-quality rehabilitation and research initiatives. INCLUSION CRITERIA: All studies, published in English or Scandinavian languages describing a meaningful life as experienced by adult persons with neurological impairment were included. No search date range filter was selected. METHODS: This review followed the Joanna Briggs Institute (JBI) methodology for scoping reviews according to a published protocol. A three-step search strategy was conducted in the databases PubMed, Cinahl, PsycINFO and Embase. At least two independent researchers conducted inclusions and exclusions, data extraction, and analyses. Covidence software was used to manage the information. FINDINGS: We identified 307 studies. Of these, 20 were included and quality assessed. Findings are reported in accordance with the PRISMA- SCR checklist and descriptively presented mapped in three main domains and 10 ten sub-domains. CONCLUSION: Current literature conveys no clear definition or perception of what a meaningful life is. However, across the 20 included studies, the following main characteristics were stepped forward as particularly significant for adults living with an acquired neurological impairment in regard to achieving a meaningful life: i) to be part of meaningful relationships and meaningful activities; ii) to become confident with one's perceived identity.


Asunto(s)
Medicina , Centros de Rehabilitación , Humanos , Adulto , Motivación
10.
Disabil Rehabil ; 45(10): 1655-1666, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-35559686

RESUMEN

PURPOSE: This paper explores the perception of "relatives" during the rehabilitation of young adults with severe acquired brain injury (SABI). METHODS: This longitudinal qualitative study followed eight young adults with a SABI from hospital discharge to a year and a half after discharge. The design encompassed professional records, interviews, and surveys, including a name generator list completed by the young adults and focus group interviews with both their families and professionals. We apply a sociological theoretical framework concerning friendship, and we employ social network analysis (SNA) methodology to capture, visualise, and analyse the young adults' significant social relations. RESULTS: Social relations engaged as relatives during rehabilitation are to a large extent determined by the perceptions of professionals and the parents of the young adult. These perceptions contain a limited number of social relations, with priority given to biological and juridical ties. This might reflect the reduced social support available for the young adult, who initially had a much larger social network. CONCLUSION: The authors suggest a professional rethinking of who "relatives" are as well as considering these social ties as dynamic. Implications for rehabilitationRehabilitation professionals must be aware of and pay attention to differing perceptions that exist as to who qualifies as significant social relations in order to reconsider the practical implementation of relative involvement.The perception of who relatives are during the rehabilitation process should be reconsidered and extended to include who the young adult perceive as significant social relations.Relatives are not a fixed entity and should be considered dynamically throughout the rehabilitation process.Social relations of the young adult must to a larger extent be considered during rehabilitation to prevent social isolation in the long run.


Asunto(s)
Lesiones Encefálicas , Padres , Humanos , Adulto Joven , Lesiones Encefálicas/rehabilitación , Estudios Longitudinales
11.
J Neurosci Nurs ; 55(2): 38-44, 2023 Apr 01.
Artículo en Inglés | MEDLINE | ID: mdl-36749958

RESUMEN

ABSTRACT: BACKGROUND: Malnutrition is associated with high rates of complication, longer hospital stays, and increased morbidity and mortality. Malnutrition defined as undernutrition is common in patients with acquired brain injury (ABI); however, estimates vary remarkably. This study aimed to describe malnutrition at admission and after 4 weeks of subacute inpatient neurorehabilitation in patients with ABI using the new global consensus definition of malnutrition. METHODS: One hundred thirty-three patients with moderate to severe ABI consecutively admitted to a specialized neurorehabilitation hospital within a period of 4 months were screened for inclusion, of which 92 were included. Malnutrition was defined as at least 1 phenotypic criterion (weight loss, low body mass index, low muscle mass) and at least 1 etiologic criterion (reduced food intake, inflammation). Malnutrition on admission and after 4 weeks was compared using the McNemar test. RESULTS: The proportion of patients with malnutrition at admission was 42%, with more men (46%) than women (36%) fulfilling the criteria for malnutrition. The most frequent phenotypic and etiologic criteria were weight loss (56%) and inflammation (74%), respectively. During the 4 weeks of rehabilitation, the proportion of male patients fulfilling the individual criteria "weight loss" (difference, -21.4%) and "inflammation" (difference, -18.9%) decreased significantly; "low muscle mass" decreased borderline significant (difference, -8.9%), whereas "low body mass index" did not change. The proportion of female patients fulfilling individual criteria for malnutrition was stable or increased nonsignificantly. CONCLUSION: Malnutrition was common at admission to neurorehabilitation in patients with moderate to severe ABI, with more men than women fulfilling the criteria for malnutrition. The nutritional status improved after 4 weeks of rehabilitation in male patients, whereas it was largely unchanged in female patients. The results provide the basis for monitoring high-quality nutritional nursing care.


Asunto(s)
Lesiones Encefálicas , Desnutrición , Humanos , Masculino , Femenino , Prevalencia , Desnutrición/epidemiología , Desnutrición/etiología , Estado Nutricional , Pérdida de Peso , Lesiones Encefálicas/complicaciones , Evaluación Nutricional
12.
JBI Evid Synth ; 21(5): 886-912, 2023 05 01.
Artículo en Inglés | MEDLINE | ID: mdl-36729839

RESUMEN

OBJECTIVE: The objective of this scoping review was to identify and map the breadth of available evidence on relatives' wants and needs for involvement in the care of patients with an acquired brain injury. INTRODUCTION: Acquired brain injuries often occur suddenly and unexpectedly. Experiencing an acquired brain injury has major consequences, not only for the patients-due to the devastating impact on their physical, cognitive, social, and psychological well-being-but also for the relatives who may need to take on a lifelong role as a carer. Research has cited some benefits of involving relatives in the care of patients, including positive effects on the patients' health outcomes; however, there are few studies showing how relatives can be involved. INCLUSION CRITERIA: Studies that defined or assessed relatives' wants and needs for involvement in the care of patients with an acquired brain injury in all settings were included. Studies were included if they described any kind of wants and needs for involvement experienced from the perspective of relatives. The review considered all study designs, except for literature reviews. METHODS: The JBI methodology for conducting a scoping review was employed in accordance with an a priori published protocol. An extensive search was conducted in MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in September 2021. This review was limited to studies published in English, German, or Scandinavian languages since January 2010. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. The review findings are reported as a descriptive summary, with tables and figures supporting the data. RESULTS: The search identified 3854 studies, 31 of which were included. The studies were published between 2010 and 2021, and were conducted across 9 countries. In total, 16 studies applied a qualitative study design, 4 studies used a descriptive approach, 4 studies used a quantitative research design, 4 studies reported using a mixed methods design, and 3 studies employed a multi-methods design. The studies were conducted across a variety of settings, ranging from acute care to home. The international literature on the involvement of relatives of patients with acquired brain injuries comprises multiple published studies on different aspects of the topic and within various care contexts. The findings identified few studies describing wants and needs experienced by relatives in relation to involvement in the patient's disease trajectory. CONCLUSIONS: The findings show that relatives' wants and needs are primarily related to information and communication, but are also related to collaboration with health care professionals. The findings illustrate that the complexity of involvement is comprehensive, with multiple aspects to consider.


Asunto(s)
Lesiones Encefálicas , Personal de Salud , Humanos , Investigación Cualitativa , Cuidados Críticos
13.
JBI Evid Synth ; 21(11): 2188-2210, 2023 Nov 01.
Artículo en Inglés | MEDLINE | ID: mdl-37435678

RESUMEN

OBJECTIVE: The objective of this scoping review was to identify and map the breadth of available evidence on relatives' wants and needs for involvement throughout the course of the disease in patients with a malignant brain tumor. INTRODUCTION: Patients diagnosed with a malignant brain tumor often have a poor prognosis, including a rapid progression of the disease, with changing physical, cognitive, and psychosocial symptoms. The caregiver burden is described as multifaceted, and relatives often neglect their own physical, emotional, and social needs. INCLUSION CRITERIA: This review included studies that defined or assessed the wants and needs for involvement of relatives of patients with a malignant brain tumor throughout the disease and treatment trajectory. The populations were relatives of patients with a malignant brain tumor in various settings. METHODS: The JBI methodology for scoping reviews was followed in accordance with a previously published a priori protocol. An extensive search was conducted in the MEDLINE (PubMed), CINAHL (EBSCOhost), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in March 2022. This review was limited to studies published since January 2010 in English, German, or Scandinavian languages. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. Textual data mapping of wants and needs for involvement were synthesized narratively using a basic qualitative content analysis. The review findings are reported as a descriptive summary, with tables and figures to support the data. RESULTS: The search identified 3830 studies, of which 10 were included. The studies were conducted in 6 countries and were published between 2010 and 2018. In total, 4 studies applied a qualitative study design that used semi-structured interviews, 2 studies applied a mixed methods design that used questionnaires and semi-structured interviews, 1 study applied a multi-method design, and 3 studies used a quantitative survey. Research was conducted in a variety of settings, including community palliative care, inpatient centers, outpatient, home, and post-bereavement. The findings showed that most of the relatives' needs were related to the caregiver role. The relatives were actively involved in the patients' disease and treatment trajectories. However, relatives were often required to adopt the caregiver role and a large amount of responsibility at short notice. Thus, they expressed a need for a stronger connection with health care professionals because their needs changed as rapidly as the disease progressed. Relatives also had a need related to maintaining hope, which was essential for their involvement. Relatives' wants for involvement in the patients' disease and treatment trajectories depended on a significant and timely amount of information. CONCLUSIONS: The findings reveal that relatives are actively involved in the patients' disease and treatment trajectories. The relatives want and need support for their involvement, which is related directly to the accessibility and availability of health care professionals, as the demands placed on them change rapidly throughout the progression of the disease. One way to address relatives' wants and needs may be to further strengthen the relationship between the relatives and health care professionals. SUPPLEMENTAL DIGITAL CONTENT: A Danish-language version of the abstract of this review is available as Supplemental Digital Content [ http://links.lww.com/SRX/A26 ]. A German-language version of the abstract of this review is available at Supplemental Digital Content [ http://links.lww.com/SRX/A35 ].


Asunto(s)
Neoplasias Encefálicas , Personal de Salud , Humanos , Personal de Salud/psicología , Cuidadores , Neoplasias Encefálicas/genética , Neoplasias Encefálicas/terapia
14.
BMJ Open ; 13(1): e062069, 2023 01 30.
Artículo en Inglés | MEDLINE | ID: mdl-36717149

RESUMEN

INTRODUCTION: Research identifying the needs of relatives of patients with an acquired brain injury or malignant brain tumours is emerging, and the importance of relative involvement is widely acknowledged. However, the intention of involvement does not seem to be present in current practice and healthcare professionals' routines. The complexity of involvement of relatives is comprehensive, and there is a lack of overview of interventions facilitating and enhancing involvement of relatives. This scoping review aims to identify and map the available evidence on interventions facilitating involvement of relatives of patients with acquired brain injury or malignant brain tumour throughout the disease trajectory. METHODS AND ANALYSIS: The proposed scoping review will be performed following the Joanna Briggs Institute's methodology for scoping reviews. Published and unpublished literature in English, Scandinavian and German from January 2010 to August 2022 will be considered. The searches will be conducted using electronic bibliographic databases. This scoping review will consider studies describing interventions provided by multidisciplinary healthcare professionals. The key aspects of the interventions could, for example, be educational, informational, emotional, social or physical support aiming towards involvement of the relatives. This scoping review will consider all study designs, except for literature reviews of all types and designs. The data will be extracted using a data extraction tool developed to record specific data, including details of authors, year of publication, country, setting, study population, study design and key aspects of the intervention (mode, duration, intensity, provider) and type of primary and secondary outcomes applied to measure the interventions. The results will be presented in tabular form, accompanied by a descriptive summary related to the objective of the present scoping review. ETHICS AND DISSEMINATION: This scoping review is conducted as part of a larger postdoc project, which has been approved by the Danish Data Protection Agency (ID P-2020-547). The results will be disseminated through a peer-reviewed journal and presented at local, national and international conferences on brain injuries and brain cancer.


Asunto(s)
Lesiones Encefálicas , Neoplasias Encefálicas , Humanos , Escolaridad , Proyectos de Investigación , Literatura de Revisión como Asunto
15.
PLoS One ; 17(6): e0269125, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35709200

RESUMEN

OBJECTIVE: This scoping review explores the constitution of a meaningful life as perceived by adults with acquired neurological impairment following an injury or a disease. INTRODUCTION: A neurological injury or disease imposes extensive life changes on the affected person and his or her close relatives. Including the patients' perception of a meaningful life is crucial to facilitate adjustment of any rehabilitation initiatives to the patients' wishes, hopes, needs, and preferences. Even so, the descriptions and common traits of a meaningful life from the impaired person's perspective are scarcely covered in the literature. Hence, a scoping review of existing knowledge is needed to facilitate quality rehabilitation and research initiatives. INCLUSION CRITERIA: All studies, regardless of their design, are included provided they describe a meaningful life as considered or experienced by persons aged 18 years or more with neurological impairment. METHODS: A PICo framework defines the search algorithms used in the databases MEDLINE, Cinahl, PsycINFO and Embase. Using Covidence, the scoping review systematically organizes the identified articles to provide a broad description of the study phenomenon. Furthermore, titles, abstracts, and full-text articles are screened independently by two reviewers to determine if they meet the inclusion criteria. In case of disagreement, a third and fourth reviewer are consulted. The scoping will be reported according to the PRISMA- SCR checklist.


Asunto(s)
Atención a la Salud , Proyectos de Investigación , Adulto , Femenino , Humanos , Masculino , Literatura de Revisión como Asunto , Revisiones Sistemáticas como Asunto
16.
Work ; 72(4): 1381-1396, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35871382

RESUMEN

BACKGROUND: In 2019, an educational programme was implemented in a sub-acute in-hospital neurorehabilitation clinic for patients with severe acquired brain injury (sABI). The programme was initiated to enhance staff competencies related to identifying and improving active participation among patients with sABI. OBJECTIVE: The purpose was to evaluate the implementation effectiveness of the educational programme. METHODS: Mixed methods were chosen to assess implementation effectiveness as perceived by staff and patients. RESULTS: A survey of the professional's experience showed an increase in perceived competence after each completed seminar and from before the first seminar to after the last completed seminar. These results were confirmed and elaborated through staff focus group interviews. The proportion of patients achieving active participation increased from 45% before to 75% after implementation (six of eight patients). CONCLUSION: Exploring the implementation effectiveness of the educational programme seemed clinically valuable and showed a promising and probable effect of an implementation process.


Asunto(s)
Lesiones Encefálicas , Competencia Profesional , Lesiones Encefálicas/complicaciones , Lesiones Encefálicas/rehabilitación , Grupos Focales , Humanos
17.
PLoS One ; 17(8): e0273151, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35980985

RESUMEN

INTRODUCTION: Involving relatives can contribute to better quality of care and treatment, and lead to higher satisfaction with hospitalisation in the patients, relatives and healthcare professionals. Nurses play an important role in developing a trusting relationship and facilitating relatives' involvement, since they are around the patient and relatives all day. Thus, involvement is central to the nursing practice. However, involving relatives seems complex and multifaceted with many possible facilitators and barriers to nurses.' OBJECTIVE: The objective of this scoping review is to identify and map the available evidence concerning possible facilitators and barriers to nurses involving relatives in the course of treating disease in individuals who have sustained an acquired brain injury or malignant brain tumour in all settings. METHODS AND ANALYSIS: The proposed scoping review will be performed following the Joanna Briggs Institute's (JBI) methodology for scoping reviews. Indexed and grey literature in English, Scandinavian or German languages from 2010 to the present will be considered. The searches will be conducted using bibliographic databases: Medline (via PubMed), CINAHL (via EBSCO) and EMBASE (via OVID). Two reviewers will independently screen the studies and determine if their title, abstract and full text meet the study's inclusion criteria. In case of disagreement, a third and fourth reviewer will be consulted. A customised data extraction form will be used to extract data from the included studies. The results will be presented in tabular form, accompanied by a narrative summary related to the objective of the present scoping review. This scoping review will consider studies that involve nurses caring for individuals with an acquired brain injury or malignant brain tumour in all settings (community, primary care, health care centres, hospital and long-term care institutions). Studies will be included if they describe any kind of facilitators or barriers to involving relatives, and the review will consider all study designs.


Asunto(s)
Lesiones Encefálicas , Neoplasias Encefálicas , Lesiones Encefálicas/terapia , Neoplasias Encefálicas/terapia , Atención a la Salud , Personal de Salud , Humanos , Literatura de Revisión como Asunto , Autocuidado
18.
Health Sociol Rev ; 31(3): 293-308, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35220921

RESUMEN

Inequalities in illness, service provision, and outcomes are well documented in the Nordic universal welfare state. The ways in which inequalities are produced during illness recovery trajectories remain largely unknown. Long-term brain injury rehabilitation in this context provides a window into veiled aspects of inequality and the underlying mechanisms. We examine inequality empirically by combing framing field structures with the classed abilities of families to mobilise capital after a severe acquired brain injury (severe ABI). Using a Bourdieuan theoretical framework, informed by the concepts of field, doxa, cultural health capital (CHC), and rehabilitation capital (RC), we designed a longitudinal case study encompassing professional records, observations, and interviews that tracked and analysed subjects' trajectories. We found that families' consistent accumulation and conversion of capital was crucial after a severe ABI because of the multifaceted rehabilitation process involving many different field specific agendas and doxas. This study supplements previous concepts (CHC and RC) developed in a health care context by including other rehabilitation contexts. These disparities in forms of capital amongst social classes result in winners and losers and were reflected in the rehabilitation trajectories of the young adults, characterised by continuity on one extreme and broken trajectories on the other.


Asunto(s)
Lesiones Encefálicas , Rehabilitación Neurológica , Capital Social , Humanos , Clase Social , Factores Socioeconómicos , Adulto Joven
19.
Nurs Open ; 9(6): 2793-2803, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-34190414

RESUMEN

AIM: To illuminate using body composition measurements for malnutrition measured by Bio Impedance Analysis (BIA), as opposed to body mass index (BMI), and discuss benefits and burdens for fundamental nursing care. DESIGN: A second analysis of a prospective, descriptive cohort study, targeting fundamental nursing care elements. METHODS: This postevaluation study explored data from a prospective, descriptive cohort study, which consecutively included 92 patients admitted for neurorehabilitation care. Measures of nutritional status were BMI and FFMI. Chi-Square test and Multivariable logistic regression were used. RESULTS: Body composition measures rather than BMI contributed to target individual nutritional nursing care as this measure detected more patients at potential risk of malnutrition and indicated minor changes in the nutritional state. Transitions from being malnourished to a normal nutritional status occurred in 29% using the BMI definition while it was the case in 40% of individuals with malnutrition defined by the body composition.


Asunto(s)
Lesiones Encefálicas , Desnutrición , Humanos , Estudios Prospectivos , Estudios de Cohortes , Composición Corporal
20.
Front Rehabil Sci ; 3: 823159, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36189071

RESUMEN

Six recommendations to facilitate rehabilitation research and supplement existing research practices were identified. Rehabilitation practice requires research addressing different long-term multi-faceted needs and perspectives of end users, including service users, professionals, politicians, and administrators. Research in rehabilitation should therefore integrate different research traditions and methods. Rehabilitation research with a broad focus is sparse, and most of the research takes its starting point in the biomedical research tradition. Through a nominal group process, we developed recommendations to emphasize important issues in rehabilitation research.

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