A Multicenter Pilot Study of Burden Among Caregivers of Geriatric Rehabilitation Patients With Neuromusculoskeletal Diseases.

PURPOSE: In this study, we aimed to describe the sociodemographic characteristics of caregivers of patients in a geriatric unit and to clarify the relationship between caregiver burden and specific clinical variables in the patients and the characteristics of the caregivers. DESIGN: Cross-sectional multicenter study. METHODS: One hundred twenty-three patients and 123 caregiver dyads, with mean ages of 72.5 ± 7.7 years and 51 ± 14.7 years, respectively, were included. The functional, psychological, and cognitive statuses of the patients were determined, and the sociodemographic characteristics of the caregivers as well as the type and duration of caregiving were recorded. Caregivers completed the Caregiver Burden Inventory (CBI) to measure the perceived burden of care. Most patients were female and generally lived with their family. FINDINGS: Most of the caregivers were family members (90%), female (73.2%), primary school graduates (52.8%), and first-degree relatives (73.1%). The average CBI score was 33, and the highest CBI subscores were for time, developmental, and physical burdens. Caregiver burden correlated with the patient's ambulatory, psychological, and cognitive status and with the caregiver's age, gender, income level, and duration of caregiving. CONCLUSIONS: We have highlighted the relationship between caregiver and patient characteristics in a cohort of elderly Turkish patients with neurological and musculoskeletal disorders. In particular, we have highlighted the heavy caregiver burden in a developing country. CLINICAL RELEVANCE: Our results may guide the nurses to understand the requirements of caregivers and to help them find suitable resources that would meet their needs to cope with their burden.

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders.

In studies on caregiving, high levels of perceived burden are commonly considered as synonymous with poor well-being. This study aimed at better disentangling the relationship between burden and well-being dimensions through their joint investigation. To this purpose, perceived well-being and social resources were evaluated among caregivers reporting different levels of burden. Participants were 91 caregivers (mean age=50.4; SD=9.6), parents of people diagnosed with severe neuromotor and cognitive disorders. Participants completed a semi-structured interview and a set of scaled questionnaires: Caregiver Burden Inventory (CBI), Satisfaction with Life Scale, Positive and Negative Affect Schedule, Depression Anxiety Stress Scale, Eudaimonic and Hedonic Happiness Investigation, Resilience Scale for Adults, and Multidimensional Scale of Perceived Social Support. Participants were divided into two groups according to their perceived burden level, assessed through CBI. In both groups, the subjective components of burden accounted for the major fraction of the total burden level. Participants perceiving high burden reported higher levels of depression related emotions, lower life satisfaction and lower resilience than participants perceiving low burden. No group difference emerged in perceived meaningfulness and social support. A regression analysis showed that the best predictor of perceived burden was life satisfaction, followed to a lesser extent by resilience, while depression related emotions did not provide significant contribution. Findings suggest that the joint assessment of burden and well-being dimensions, that are co-existing in caregivers' experience, allow for the identification of personal and relational resources that can be usefully included in interventions addressed to caregivers.

Who are the children using hospice care?

PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics of 76 children in hospice. RESULTS: The predisposing, enabling, and need characteristics of children were identified. Children who used hospice were a diverse group with community resources that enabled them to access care while presenting with serious health needs. Children enrolled in hospice were more likely older (15-20 years of age), resided nearer a pediatric hospice, and had a serious health condition such as neuromuscular disease with multiple comorbidities. PRACTICE IMPLICATIONS: With this knowledge, pediatric nurses can improve their clinical practice by targeting conversations with families and children most in need of hospice care.

Neuromonitoring indications and utility in the intensive care unit.

Information on the use of neuromonitoring in intensive care units is scattered but significant. Nurses who do not care for neurologically impaired patients on a daily basis may not have a strong understanding of the utility of various neuromonitoring techniques, why they are used, or how they are interpreted. Two main types of neuromonitoring that are frequently seen but poorly understood are reviewed here: transcranial Doppler sonography and electrophysiology. Information on these 2 techniques tends to be either superficial with limited applicability to the critical care setting or very technical. This review provides information about neuromonitoring to help guide critical care nurses providing care to neurologically impaired patients.

[The management of neuromuscular diseases in the home]. / La prise en charge à domicile des maladies neuromusculaires.

Neuromuscular diseases often present complex problems with regard to their management of which health care professionals are not always aware. Nurse/patient cooperation respecting the skills and abilities of each party is necessary in order for the patient to live at home despite what are often severe disabilities.

A review of pediatric palliative care service utilization in children with a progressive neuromuscular disease who died on a palliative care program.

Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services by children who died on a palliative care program. We conducted a retrospective chart review of all children who had a PMD who died on a single-center palliative care program. Twenty cases were identified. Services utilized by these patients included respite care, transition services, pain and symptom management, and end-of-life care. Prominent symptoms in the last 24 hours of life included respiratory distress, pain, nausea/vomiting, and anxiety; however, symptom management was very good. Utilization of services differed depending on the disease trajectory, with respite playing a critical role in the care of children with PMD. Good symptom management can be achieved.

Effects of shared medical appointments on quality of life and cost-effectiveness for patients with a chronic neuromuscular disease. Study protocol of a randomized controlled trial.

BACKGROUND: Shared medical appointments are a series of one-to-one doctor-patient contacts, in presence of a group of 6-10 fellow patients. This group visits substitute the annual control visits of patients with the neurologist. The same items attended to in a one-to-one appointment are addressed. The possible advantages of a shared medical appointment could be an added value to the present management of neuromuscular patients. The currently problem-focused one-to-one out-patient visits often leave little time for the patient's psychosocial needs, patient education, and patient empowerment. METHODS/DESIGN: A randomized, prospective controlled study (RCT) with a follow up of 6 months will be conducted to evaluate the clinical and cost-effectiveness of shared medical appointments compared to usual care for 300 neuromuscular patients and their partners at the Radboud University Nijmegen Medical Center. Every included patient will be randomly allocated to one of the two study arms. This study has been reviewed and approved by the medical ethics committee of the region Arnhem-Nijmegen, The Netherlands. The primary outcome measure is quality of life as measured by the EQ-5D, SF-36 and the Individualized neuromuscular Quality of Life Questionnaire. The primary analysis will be an intention-to-treat analysis on the area under the curve of the quality of life scores. A linear mixed model will be used with random factor group and fixed factors treatment, baseline score and type of neuromuscular disease. For the economic evaluation an incremental cost-effectiveness analysis will be conducted from a societal perspective, relating differences in costs to difference in health outcome. Results are expected in 2012. DISCUSSION: This study will be the first randomized controlled trial which evaluates the effect of shared medical appointments versus usual care for neuromuscular patients. This will enable to determine if there is additional value of shared medical appointments to the current therapeutical spectrum. When this study shows that group visits produce the alleged benefits, this may help to increase the acceptance of this innovative and creative way of using one of the most precious resources in health care more efficiently: time. TRIAL REGISTRATION: DutchTrial Register http://www.trialregister.nlNTR1412.

Presión inspiratoria nasal: ¿una alternativa para la evaluación de la fuerza muscular inspiratoria? / Nasal inspiratory pressure: an alternative for the assessment of inspiratory muscle strength?

Introducción: La fuerza de los músculos inspiratorios se evalúa habitualmente en la clínica a través de ladeterminación de la presión estática máxima en boca (PIM). Sin embargo, esta maniobra presenta algunosproblemas, por lo que en los últimos años se han desarrollado diferentes alternativas como la mediciónde la presión inhalatoria nasal máxima (SNIP).Objetivo: Evaluar la determinación de SNIP como alternativa para la evaluación de la fuerza muscularinspiratoria.Método: Sujetos incluidos consecutivamente en tres grupos: control (8), EPOC (23) y neuromuscular(21). Se determinaron diferentes presiones inspiratorias máximas: (a) dinámica en esófago (sniffPesmáx,variable de referencia), (b) PIM, y (c) SNIP.Resultados: SNIP y PIM mostraron una buena correlación con sniffPesmáx (r = 0,835 y 0,752, respectivamente,en los controles, p < 0,05 ambas). La correlación intraclase SNIP/sniffPesmáx fue de 0,585 (IC95%: -0,097 a 0,901) en los controles, 0,569 (IC 95%: -0,048 a 0,836) en EPOC, y 0,840 (IC 95%: 0,459 a0,943) en enfermos neuromusculares. Estos valores fueron respectivamente de 0,602 (IC 95%: -0,108 a0,933), 0,418 (IC 95%: -0,108 a 0,761), y 0,712 (IC 95%: 0,378 a 0,882) para PIM/sniffPesmáx. La SNIP yla PIM mostraron una sensibilidad del 100% en los 3 grupos mencionados, aunque la especificidad erarespectivamente del 100, 69 y 75% para la SNIP, y 83, 54 y 75%, para la PIM.Conclusiones: La SNIP constituye un buen reflejo de la fuerza muscular inspiratoria. Probablemente supapel en la clínica sea complementario al de la PIM(AU)

Introduction: The strength of inspiratory muscles is assessed thorough the determination of the staticmouth pressure (MIP). However, since this manoeuvre has some problems, alternative techniques havebeen developed in the last few years. One of the most promising is determination of sniff nasal inspiratorypressure (SNIP).Aim: To evaluate SNIP assessment as an alternative for the evaluation of the maximal inspiratory musclestrength.Methods: Subjects were consecutively included and assigned to one of three different groups: control(8), COPD patients (23) and patients with neuromuscular disorders (21). Different maximal inspiratorypressures were determined: (a) dynamic at the esophagus (sniffPesmáx, reference variable), (b) MIP, and(c) SNIP.Results: Both SNIP and MIP showed an excellent correlation with the reference variable, sniffPesmáx(r=0.835 and 0.752, respectively, P<0.05 for both). SNIP/sniffPesmáx intra-class correlation coefficientswere 0.585 (CI 95%: -0.097 to 0.901) in controls, 0.569 (CI 95%: -0.048 to 0.836) inCOPDpatients, and 0.840 (CI 95%: 0.459 to 0.943) in neuromuscular disorders, respectively. For MIP/sniffPesmáx these values were0.602 CI 95%: -0.108 to 0.933), 0.418 (CI 95%: -0.108 to 0.761), and 0.712 (CI 95%:, 0.378 a 0.882). Moreover,both SNIP and MIP showed 100% sensitivity in the three groups of subjects, although specificities were100%, 69% and 75% for SNIP, and 83%, 54% and 75% for MIP, respectively.Conclusions: SNIP is a good physiological marker of inspiratory muscle strength. Its role is likely tocomplement that of MIP(AU)

Sleep and well-being in young men with neuromuscular disorders receiving non-invasive ventilation and their carers.

Nocturnal ventilation has improved the physical status and life span of childhood neuromuscular disorders: the purpose of this study was to assess the implications for sleep and well-being in patients and carers. Ten young men (age range 12-25 years) with neuromuscular disorders on assisted ventilation and/or their main carers completed questionnaires on sleep quality, physical and psychological well-being, family burden and function. Both patients and parents expressed satisfaction with ventilation treatment. Compared to standardised values patients reported reduced sleep quality, but their mental health was not substantially affected. Poor sleep quality in carers--but not in patients--was significantly associated with risk for emotional (anxiety and depressive) disorders, reduced physical/emotional health, family burden and difficulty. We conclude that patients were generally well adapted psychologically, but sleep quality was poor and in carers this was linked to reduced well-being and family burden.

[Analysis of the nursing role in the care of patients with neuromuscular disorders]. / Analyse du rô1e de l'infirmière dans le suivi des personnes atteintes de maladies neuromusculaires.

The nursing role in neuromuscular disorders has been shown as a promising solution in service organization. However, the role of neuromuscular nurses has scarcely been addressed in the literature. The present evaluation process was geared toward defining nursing role in relation to systematic follow-up of neuromuscular disorders and to assess its theoretical background.

Being the lifeline: the parent experience of caring for a child with neuromuscular disease on home mechanical ventilation.

We describe the experience of parents caring for children with neuromuscular disease (NMD) on home mechanical ventilation (HMV). Data was obtained from semi-structured interviews and analyzed using a phenomenological framework. Fifteen families including 19 parents of children with DMD (n=3), SMA (n=5), and other NMD (n=7) participated. The central theme of these parents' experience was being the "lifeline" for their child's life and quality of life. The families' lives changed significantly with the decision to place their child on HMV; over time, these changes became part of their new "normal". Despite becoming expert caregivers, the parents experienced a recurrent sense of loss and uncertainty. Those who perceived insufficient support felt the weight of responsibility as sole care providers for their child with NMD. Beyond recognizing the parents as experts, more support by health care professionals, their extended family, and their community are needed to enable parents to fulfill their vital role.

Home non-invasive ventilation: a brief guide for primary care staff.

An increasing number of patients with a wide range of respiratory problems are using non-invasive ventilation (NIV) at home to optimise their respiratory function. It has been estimated that in 1999 between 2,500 and 3,000 people in the UK (5 per 100,000 head of population) were using domiciliary NIV (Leger, 2001). As a consequence, health professionals working in the community are now more likely to encounter patients using this type of ventilation.