The experience of family caregivers caring for a patient with chronic disorders of consciousness: a qualitative content analysis.

BACKGROUND: Management of a patient with chronic disorders of consciousness is a long-term and stressful situation for family caregivers. AIMS: The aim of this study was to describe the experiences of family caregivers of patients with chronic disorders of consciousness. METHODS: Purposeful sampling was used, data were collected through semi-structured, in-depth interviews at participants' homes. Data were analysed using qualitative content analysis. FINDINGS: Results indicated that family caregivers of patients with chronic disorders of consciousness face many difficulties in providing care to vegetative state (VS) and minimally conscious state (MCS) patients; they experience it as a challenging type of care, which influences their mental health. CONCLUSION: Family caregivers are faced with many challenges because of the high burden of care, round-the-clock concern, taking care of an alive but unresponsive patient without receiving enough support. They experience mental and inner turmoil because of social isolation and dealing with contradictory feelings in their daily life.

Is oral feeding compatible with an unresponsive wakefulness syndrome?

OBJECTIVE: The aim of the study is to explore the possibility of oral feeding in unresponsive wakefulness syndrome/vegetative state (UWS/VS) patients. METHOD: We reviewed the clinical information of 68 UWS/VS patients (mean age 45 ± 11; range 16-79 years) searching for mention of oral feeding. UWS/VS diagnosis was made after repeated behavioural assessments using the Coma Recovery Scale-Revised. Patients also had complementary neuroimaging evaluations (positron emission tomography, functional magnetic resonance imaging and electroencephalography and diffusion tensor imaging). RESULTS: Out of the 68 UWS/VS patients, only two could resume oral feeding (3%). The first patient had oral feeding (only liquid and semi liquid) in addition to gastrostomy feeding and the second one could achieve full oral feeding (liquid and mixed solid food). Clinical assessments concluded that they fulfilled the criteria for a diagnosis of UWS/VS. Results from neuroimaging and neurophysiology were typical for the first patient with regard to the diagnosis of UWS/VS but atypical for the second patient. CONCLUSION: Oral feeding that implies a full and complex oral phase could probably be considered as a sign of consciousness. However, we actually do not know which components are necessary to consider the swallowing conscious as compared to reflex. We also discussed the importance of swallowing assessment and management in all patients with altered state of consciousness.

Caregivers' lived experience in trying to read slight movements in a child with severe brain injury: A phenomenological study.

AIMS AND OBJECTIVES: To explore caregivers' lived experience of reading slight movements of a child with severe brain injury. BACKGROUND: Despite increased need, the development of individual care for children with severe brain injuries has been prevented by their severe physical state and the poor reproducibility of their movements. In addition to a lack of evidence on the motor characteristics of patients with severe brain injury with multiple disabilities, their own development contributes to increasing variability in their states. Thus, caregivers are compelled to rely on their experiences, which have not been academically explored. DESIGN: A qualitative study based on van Manen's method of hermeneutic phenomenology. METHODS: Data were obtained through twenty-one 3-hr observation sessions and five 15- to 45-min group interviews. We observed a child (called AK) with severe brain injury and his 61 caregivers, and conducted group interviews with 28 caregivers. We focused on caregivers' experiences of reading AK's slight movements. The data were interpreted based on van Manen's hermeneutic phenomenological approach. RESULTS: Four themes emerged as caregivers' experience in trying to read AK's slight movements. By considering "AK's physical state and his slight movements" and discovering "caregivers' 'sense of uncertainty' about AK's slight movements," caregivers could decipher "AK's multiple slight movements." "Sharing" was found as a necessary aspect of these other three themes of reading AK's slight movements. CONCLUSIONS: We presented caregivers' experiences as related to these four themes in their efforts to read the slight movements of AK. Due to AK's slight movements with poor reproducibility, "sharing" was necessary to read AK's slight movements, as it exposes caregivers' lived experience to the interpretation of multiple caregivers. RELEVANCE TO CLINICAL PRACTICE: These four themes may be useful for assessing, guiding and promoting caregivers' use of sharing when reading the slight movements of children with severe brain injury.

Evaluation of nursing interventions using minimally invasive assessments methods for patients in a persistent vegetative state.

AIM: This study aimed to evaluate the effects of nursing interventions using minimally invasive or non-invasive methods conducive to frequent use in order to assess patients in a persistent vegetative state (PVS). METHODS: We provided three nursing interventions-sitting the patient in an upright position, footbath care, and oral care-to PVS patients (n = 11) and elderly bedridden subjects with consciousness (n = 6) for 3 weeks in addition to ordinary nursing treatments. The Kohnan Score, plasma cortisol and adrenaline levels, General Well-Being Schedule score, and facial expression assessments were used as evaluation methods. RESULTS: The Kohnan Score of PVS patients declined significantly, indicating that the interventions increased patients' consciousness levels, but none of the other parameters showed significant change in either group. The change in Kohnan Score showed dependent trends for facial expression at baseline, cortisol change during the intervention, and the term of PVS. CONCLUSIONS: The data suggest three indices for predicting intervention efficacy in individuals and for assessing an intervention's contribution to quality of life improvement. Among the multiple evaluation methods, Konan Scores was the most effective. Ultimately, the three nursing interventions used in this study and Konan Score led to the optimization of nursing home care and rehabilitation for PVS patients.

Perception of social support among family caregivers of vegetative patients: A qualitative study.

A vegetative state (VS) is the probable result after brain damage. After VS patients are discharged from the hospital, the responsibility of caring of them is transferred to their families, which impacts a caregiver's physical and psychological health. Social support as a valuable resource reduces the negative effects of stressful events. This study aimed to explore the perception of social support among family caregivers of VS patients. This study is a part of a larger qualitative study which used the descriptive and qualitative method. Purposeful and theoretical sampling was done, and data was gathered through face-to-face, in-depth interviews. The four categories of "Family, a supporter in all aspects," "Beautiful emanation of the nurse's role," "Revitalization via empathy and companionship," and "Defects in support," were extracted. The primary concern of participants was receiving social support which can facilitate caregiving and coping with difficulties, but there are many shortcomings in supporting these caregivers.

Effects of Counseling on Psychological Measures in Caregivers of Patients with Disorders of Consciousness.

OBJECTIVE: Caregivers represent an important and potential resource in the care network of patients due to the amount of time dedicated to the patient and to their emotional involvement. The aim of this study was to evaluate the effectiveness of psychological support to families of patients with a disorder of consciousness (DOC). METHODS: A total of 48 DOC caregivers were enrolled. Participants were randomly divided into 2 groups based upon the clinical condition of their family members (vegetative state [VS] versus minimally consciousness state [MCS]). Group 1 underwent psychological support and Group 2 was the control group. RESULTS: The 2 groups were evaluated at T0 (baseline) and at T1 (after 6 months). The Wilcoxon signed-rank test was used for within-group comparisons whereas the Mann-Whitney-U test was used to test for between-group differences. Results show how the psychological condition of caregivers in Group 1 was modified after the intervention by the healthcare team in the post-acute rehabilitative unit. CONCLUSIONS: Our data confirm that psychological support improves caregivers' ability to process the experience of DOC illness, independent of type of diagnosis.

[Pain and coma]. / Douleur et coma.

Pain is a complex notion which caregivers must be able to decipher. Its aspects vary depending on the patient's condition. In cases of verbal communication disorders, the subjectivity of the caregiver is enlisted. How should pain be assessed in situations of coma and how should it be treated?

Valuing dignity in patients in a vegetative state on an intensive rehabilitation ward: improvement project.

AIM: To identify the causes that could hinder the provision of dignified care to patients in a vegetative state. BACKGROUND: In Italy, the incidence and prevalence of people in a vegetative state are increasing. The team members have a clear understanding of the meaning of being mortal and the value of human dignity. METHODS: A descriptive study design was used in an intensive care ward in Northern Italy. An anonymous list with negative factors must be drawn up. RESULTS: Thirty-two team members participated in the study. A lack of time and specific knowledge regarding the care of patients in a vegetative state, involvement of the family and repetition in assistance delivery were the most frequent causes that hinder provision of care to patients in a vegetative state. DISCUSSION AND CONCLUSIONS: The provision of dignity for patients is not an issue related only to the staff in direct contact with patients/clients, but also concerns the entire health care facility (physical structure and organisation). IMPLICATIONS FOR NURSING MANAGEMENT: The nursing coordinator has an important role in the promotion of care based on the respect for the patient's dignity, in the active involvement of staff and in the delivery of quality services to users.

Effects of different musical stimuli in vital signs and facial expressions in patients with cerebral damage: a pilot study.

BACKGROUND: Along history, music has been used in a variety of ways for therapeutic purposes and has long been recognized for its physiological and psychological effects. Music listening can be an effective nursing intervention, to enhance relaxation, provide distraction, and reduce pain. OBJECTIVES: The aims of this study were to identify changes produced by different musical stimuli in blood pressure (BP), heart rate (HR), respiratory rate (RR), and oxygen saturations (SpO2) and to verify the influence of music listening on patients' facial expressions with severe cerebral damage. METHOD: A quasiexperimental study was performed in 26 patients with severe cerebral damage, divided into control and case groups. Patients belonging to the case group were exposed to musical stimuli, radio, classical relaxing music (CRM), and relaxing music with nature sounds (RMNS). Patients were evaluated by measuring vital signs before and after exposure to each musical stimulus, as were the patients within the control group. Patients in the control group were exempt from any musical stimulus. Facial expressions were observed in each patient within the case group during the intervention. RESULTS: The results show that radio produced a slight increase in systolic BP, HR, RR, and SpO2. The CRM induced a decrease of RR and an increase of SpO2 and also produced alterations of the facial expression. When RMNS was played, a decrease was displayed in BP, HR, and RR and an increase was displayed in SpO2. Alterations in facial expression were displayed in each patient. CONCLUSIONS: The results of the study suggest that the application of musical stimuli such as CRM and RMNS can be used to provide a state of relaxation in patients with severe cerebral damage.

How the burden of caring for a patient in a vegetative state changes in relation to different coping strategies.

OBJECTIVE: To differentiate the burden of caregivers of patients in a vegetative state (VS) on the basis of different coping strategies and prolonged grief. METHODS: An observational multi-centre study was conducted with 61 caregivers of VS patients hospitalized in specialized units in Italy. The Anxiety and Depression Short Scale, the Prolonged Grief 12 and Family Strain Questionnaire were used to measure caregivers' burden and the Coping Orientations to Problem Experiences to identify the coping strategies used by caregivers. A hierarchical cluster analysis was carried out to group the data and a comparison between clusters was conducted. RESULTS: Caregivers were grouped in two clusters defined by the major proximity among the cases of the same group and the major distance from the cases of the other group. The first group was characterized by lower levels of anxiety, depression, family strain and prolonged grief. This group mainly used coping strategies referring to three factors: Social Support, Positive Attitude and Problem Oriented. The second group showed higher levels of anxiety, depression, family strain and prolonged grief and used the Avoidance strategies more than the first group. CONCLUSIONS: The burden of providing care to a VS patient is mediated by a range of factors including the different coping strategies adopted by caregivers. Support for these caregivers should take this consideration into account and should be subsequently personalized.

How do you know when your patient is "waking up": coma recovery assessment in a complex continuing care setting.

Coma, vegetative state (VS) and minimally conscious state (MCS) are disastrous outcomes following severe traumatic brain injury. Due to the extent of the resultant neurological deficits including hemisphere damage, loss of cellular integrity, altered and abnormal movements such as flexor and extensor patterns, and alterations in cranial nerve function, it can become difficult for the interprofessional team to identify when a patient is emerging from their coma. The Glasgow Coma Scale (GCS), commonly used to assess patients with traumatic brain injury (TBI) is not comprehensive or sensitive enough to provide concrete evidence that a patient is emerging from VS to an MCS. The purpose of this paper is to present a case study of a patient who has emerged from a persistent VS to promote a deeper understanding of what is involved when working with this clientele. Challenges in assessment of cognitive functioning, the development of successful communication through the use of technology and the goals of therapy amongst the various health team members will be provided. Collaborative support with the family will also be discussed. Members of the interprofessional team explored the literature to determine coma recovery assessment tools and best evidence guidelines to direct their interventions with this patient.

Dilemas éticos en torno al cuidado de personas en estado vegetativo / Ethical dylemas regarding the care of people in vegetative state

Antecedentes: El Estado Vegetativo (EV) corresponde a un diagnóstico clínico en el cual las personas mantienen espontáneamente las funciones -vigilia y carecen de actividad voluntaria. El propósito de este artículo es presentar un dilema ético sobre mantener o no la hidratación y alimentación de las personas en EV, al cual se ven enfrentados familiares y equipo de salud durante el cuidado de estos pacientes. Metodología: Se realizó una búsqueda en la base de datos disponibles en el Sistema de Bibliotecas de la Pontificia Universidad Católica de Chile, Scielo y Elsevier, entre los meses de abril y mayo 2012. Resultados: Se hace referencia a algunos casos representativos descritos en la literatura internacional, como el de Terry Schiavo, Nancy Cruzat y Anthony Bland, los cuales fueron resueltos en tribunales. Los principales argumentos se encuentran centrados en determinar si la alimentación e hidratación corresponden a un tratamiento desproporcionado y a la importancia de las voluntades anticipadas o testamento en vida. Luego, se analizan los conceptos de dignidad humana, ser persona y muerte digna en torno al dilema ético. Conclusiones: Desde el enfoque legal y considerando los aspectos éticos que emergen en torno al cuidado de estos enfermos, se concluye que es un dilema complejo y que es necesario analizar cada caso en particular y desde varias perspectivas para entregar el mejor cuidado a las personas con EV y sus familias, de manera de tener una postura ética al respecto (AU)

Background: The vegetative state (EV) corresponds to a clinical diagnosis in which people spontaneously maintain vital functions, the sleep-wake rhythm but lack voluntary activity. The purpose of this article is to present an ethical dilemma to maintain, or not, the hydration and nutrition of people in EV, which are faced with family and team of health during the care of these patients. Methods: We conducted a search in the data base available in the system of libraries of the Pontifical University Catholic of Chile, Scielo and Elsevier, between the months of April and May 2012. Results: They refer to some representative cases described in the sources, like Terry Schiavo, Nancy Cruzat and Anthony Bland, which were resolved in courts. The main arguments are focused to determine if food and hydration correspond to a disproportionate treatment and the importance of the advance directives or living will. They then discuss the concepts of human dignity, personhood and dignified death around the ethical dilemma. Conclusions: From the legal approach and considering ethical issues that emerge in the environment of the care of these patients, it can be concluded that it is a complex dilemma and it is necessary to analyze each case in particular and from various perspectives to deliver the best care to people in EV and their families, in order to have an ethical thereon stance (AU)

Burden of caregivers of patients in Vegetative state and minimally conscious state.

OBJECTIVES: To assess differences in the burden of caregivers of patients in Vegetative state (VS) and minimally conscious state (MCS). MATERIALS AND METHODS: The Family Strain Questionnaire, Coping Orientations to Problem Experiences, Caregiver Needs Assessment, Short Form-12, Beck Depression Inventory and State-Trait Anxiety Inventory were used. Differences in psychological condition between caregivers of VS and MCS patients, with different disease duration and hosting facility were assessed with Kruskall-Wallis test and factors associated with the overall levels of burden with UNIANOVA. RESULTS: In total, 487 participants were enrolled. Daily hours of care-giving is significantly associated with the overall level of burden perceived by caregivers (F = 4.099; P = 0.018). Strain, needs and frequency of use of coping strategies are substantially similar regardless of the patient's condition and distance from the acute event. Caregivers of post-acute patients reported low scores in mental health (median = 33.8; IQR = 23.1-47.6) and higher state of anxiety (median = 54; IQR = 45-62), whereas caregivers of long-term patients expressed more needs in social involvement (median = 19; IQR = 15-22). CONCLUSIONS: Burden and distress were high for all caregivers of VS and MCS patients. As care-giving is a long-term commitment process, support to the caregiver should be guaranteed throughout the duration of the relative's disease despite the patient's diagnosis or place where the patient is hosted.

Nursing care of patients with disorders of consciousness.

Management of severely brain-injured patients constitutes a social, economical, and ethical dilemma as well as a real challenge for the medical staff, as it requires specific expertise. The aim of this article is to explore the aspects of nursing care in patients recovering from coma such as difficulty of diagnosis, residual perception, clinical assessment, care and management, and communication with the patient and the family. The nursing care of patients with disorder of consciousness must be particular and specific for various reasons such as the difficult diagnosis, the problem of unconsciousness or lack of demonstration of consciousness, extremely complex clinical assessment, daily management with total dependence, communication with patients that requires special attention and training by health professionals, and communication with the family of these patients that requires more sensitivity and full involvement by the team.

Burden and needs of 487 caregivers of patients in vegetative state and in minimally conscious state: results from a national study.

OBJECTIVE: The aim of this study is to evaluate the burden of caregivers of patients with disorders of consciousness (DOCs), considering psychosocial difficulties, health condition and financial aspects. DESIGN: This is an observational multi-centre study. Four hundred and eighty-seven participants were assessed using the Caregiver Needs Assessment, Family Strain Questionnaire, Short Form 12, Spielberger State Trait Anxiety Inventory-Y, Beck Depression Inventory, Prolonged Grief Disorder Questionnaire and Coping Orientations to Problem Experiences. OUTCOMES AND RESULTS: The sample had lower scores both in Physical (M = 49.85, SD = 7.66) and Mental (M = 39.37, SD = 12.90) health and a higher level of anxiety (p < 0.001) in comparison to the Italian normative sample. More than half of the sample manifested a high level of depressive symptoms (59.5%) and 27.6% satisfied criteria for Prolonged Grief Disorder. This sample reported needs to know the disease of their beloved, high needs for information and communication, several problems in social involvement and in emotional burden. The most frequently adopted coping strategies are acceptance, turning to religion, positive reinterpretation and planning. Finally, 40.2% of caregivers report to earn a net income of less than 17 000 euros per year. CONCLUSIONS: These results showed a high burden related to providing care to patients with DOCs. This study sets the scene to plan comprehensive support strategies for caregivers in order to diminish level of burden.

Children in vegetative state and minimally conscious state: patients' condition and caregivers' burden.

Caring for children in vegetative state (VS) or minimally conscious state (MCS) challenges parents and impacts on their well-being. This study aims to evaluate caregivers' health condition, coping, anxiety and depression levels, and how these issues relate to children's disability. 35 children with VS and MCS were administered the disability rating scale (DRS) and 35 caregivers completed the Coping Orientations to Problem Experiences, Short Form-12, Beck Depression Inventory, and the Spielberger State-Trait Anxiety Inventory-Y. Children were mainly males (68.6%), hosted at domicile (77.1%), and diagnosed with VS (60%), with anoxic aetiology (45.7%). Caregivers were mainly mothers (85.7%), married (82.9%), and housewives (51.4%); 60% declared financial difficulties, and 82.9% provided full-time assistance. 57.2% reported depressive symptoms, poor mental health, and high level of state and trait anxiety. "Problem-oriented" (P < 0.001) and "emotional-oriented" (P < 0.001), were more adopted than "potentially dysfunctional" ones. DRS scores (mean = 22.0; SD = 1.9) did not significantly correlate to any psychological measure. Rehabilitative programs for children with SV and SMC should also provide interventions on surrounding systems: improving the network of psychological support and social assistance may decrease the burden of caregivers and, in turn, improve caring abilities and children quality of life.

A right to die or a right to live? Discontinuing medical treatment.

This article explores the decision in the case of W v M, S and an NHS Primary Care Trust [2011] EWHC 2443 (Fam) in which an application to withdraw feeding from a woman in a minimally conscious state was rejected by Baker J in the Court of Protection. The article places the case in the context of the development of case law concerning the withdrawal of treatment from patients lacking decision-making capacity, where death will be the inevitable consequence of the withdrawal of treatment after the decision in Airedale NHS Trust v Bland. It questions whether nearly two decades after the Bland decision there is scope for the boundaries of the decision to withdraw treatment from patients in 'futile' conditions to be reconsidered by the Supreme Court.