RESUMO
The approach to patients affected by motor neuron disease (MND) and their caregivers requires specific training for the care-team. In fact, the progression of the disease, with the decline of physical--and sometimes cognitive--function, the increasing difficulties in speaking, breathing, and swallowing and the need of invasive choices, as the artificial nutrition and tracheostomy, constitute a challenge for the health professionals, often generating distress. For this reason, their cohesion and sharing abilities are fundamental. Psychologist assumes a strategic role in supporting and facilitating the analysis of clinical cases and of the team's intra/interpersonal dynamics. For this aim, he/she needs specific training and instruments. We here present a semi-structured interview--the Motor Neuron Disease-Psychological Interview (MoNeDi-PI)--which may guide in the psychological assessment of patients affected by MNDs and their caregivers. It can also be a handy reference tool for other members of the healthcare team providing necessary information about the patient and caregiver in order to optimize clinical decision making about which health interventions to apply.
Assuntos
Cuidadores/psicologia , Doença dos Neurônios Motores/psicologia , Doença dos Neurônios Motores/reabilitação , Enfermeiras e Enfermeiros/psicologia , Equipe de Assistência ao Paciente , Estresse Psicológico/etiologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Progressão da Doença , Feminino , Pessoal de Saúde/psicologia , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Doença dos Neurônios Motores/diagnóstico , Equipe de Assistência ao Paciente/normas , Equipe de Assistência ao Paciente/tendências , Índice de Gravidade de Doença , Inquéritos e QuestionáriosRESUMO
AIM: Our paper presents an instrument for recognising the psychological problems of caregivers: the short form of a previously validated questionnaire, the Family Strain Questionnaire. BACKGROUND: Individuals caring for chronic patients frequently suffer from psychological problems, which are underestimated by medical professionals and, consequently, are not adequately treated. Therefore, clinical nurses, general practitioners and the members of home care teams have to recognise the psychological problems of caregivers. To do so, they need to quickly measure the problem's severity quickly and track it over time, without a specific training in psychological diagnosis. DESIGN: Survey. METHOD: Principal caregivers (n = 811) completed the Family Strain Questionnaire in its original form (semi-structured interview plus 44 dichotomous items, administrable in about 20 minutes), aimed at investigating the subjective perception of emotional burden, problems in social involvement, the need for more information about the disease, satisfaction with family relationships and thoughts about death. Data were analysed using the Rasch model for the reduction of items. Thirty items were selected and reanalysed in a new sample of 40 caregivers. RESULTS: The thirty items selected showed very good fit statistics and maintained the diagnostic qualities of the original form. They thus compose the Family Strain Questionnaire - Short Form that caregivers can complete in about five minutes. This brief measure can indicate the severity of stress and allows categorisation of caregivers by psychological risk, which is also represented by a graphic tool. CONCLUSION: This study confirms that the Family Strain Questionnaire - Short Form offers an initial measure of caregivers' psychological status, regardless of the patient's disease and allows professionals to monitor it over time with a rapid and effective instrument. RELEVANCE TO CLINICAL PRACTICE: Clinical nurses, general practitioners and homecare teams should find the Family Strain Questionnaire - Short Form useful for assessing caregiving strain. The instrument is quick and easy to use and does not require any sophisticated psychological training.
Assuntos
Família/psicologia , Serviços de Assistência Domiciliar , Enfermeiras e Enfermeiros , Médicos de Família , Inquéritos e Questionários , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
Psychosocial support, education and self-management are important complements of rehabilitation programs. A central concept in self-management is self-efficacy, which refers to oneself confidence in reaching a desired goal. The General Perceived Self-Efficacy scale (GSE), developed to measure self-efficacy at the broadest level, could be useful in the rehabilitation setting, in order to assess patients' self-management difficulties as well as to design specific interventions for specific diseases. Aim of this work is to verify the GSE Italian version psychometric properties applied to the rehabilitation setting. Data were analyzed from 395 in-patients attending cardiac (83.8%) and neurological (16.2%) rehabilitation. Cardiac patients suffered from post-MI, CABG or heart-failure; all of the neurological patients suffered from amiotrophic lateral sclerosis (ALS). They were mostly males (84.5%), and the mean age was 55.7 years. Principal component factor analysis confirmed that GSE has a monofactorial structure with internal consistency of .85. As in previous studies, a gender difference emerged. There was no difference in cardiac patients, on the basis of their specific disease, but they showed higher self-efficacy perception compared to ALS patients. The findings confirm that GSE is a valid measure of self-efficacy in settings characterised by different levels of functional abilities, as in cardiac and neurological rehabilitation.
Assuntos
Reabilitação Cardíaca , Doenças Cardiovasculares/psicologia , Autoeficácia , Adolescente , Adulto , Idoso , Esclerose Lateral Amiotrófica/psicologia , Feminino , Comportamentos Relacionados com a Saúde , Insuficiência Cardíaca/psicologia , Insuficiência Cardíaca/reabilitação , Humanos , Masculino , Pessoa de Meia-Idade , Infarto do Miocárdio/psicologia , Infarto do Miocárdio/reabilitação , Análise de Componente Principal , Psicometria , Qualidade de VidaRESUMO
OBJECTIVES: The economic and psychosocial impacts of Alzheimer's disease (AD) on caregivers are so well documented that they have stimulated socioeconomic regulations that are international in scope. In Italy caregivers have the right to receive economic and psychosocial aid. However, to distribute such aid the needs of caregivers, must be properly assessed. Here we have attempted to integrate two measures, the Family Strain Questionnaire (FSQ) and the Screen for Caregiver Burden (SCB), in order to evaluate caregiver needs that are both general and specific to AD. MATERIAL AND METHODS: The SCB and FSQ were administered to 91 primary caregivers of home-based patients with AD. Caregivers also were asked to rate the activities of daily living of their care recipients, the latter of which were administered the Mini-Mental State Examination. RESULTS: The SCB and FSQ provide different, but complementary assessments of the needs of AD caregivers. The SCB identifies situations that are potentially stressful to AD caregivers and the FSQ identifies the needs of specific caregivers (e.g. men vs women, spouses vs children, unemployed vs employed). CONCLUSION: Together these measures may help government agencies to assess caregiver needs beyond those assessed by each individual measure.
Assuntos
Doença de Alzheimer/economia , Cuidadores/economia , Efeitos Psicossociais da Doença , Cuidados Intermitentes/economia , Atividades Cotidianas/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença de Alzheimer/psicologia , Análise de Variância , Cuidadores/psicologia , Relações Familiares , Feminino , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Cuidados Intermitentes/psicologia , Fatores Socioeconômicos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The international literature consistently shows that the psychosocial outcomes of the informal carers (caregivers) of chronically ill patients are influenced by factors such as personality traits and perceived social support, but few studies have investigated these variables in the caregivers of hemodialysed patients, and the reciprocal experience of chronicity. METHODS: Fifty hemodialysed patients and their principal caregivers were recruited. They were administered specific questionnaires to evaluate their emotional stability and anxious/depressive reactions, the perceived burden related to the patients' condition, the quality of their family relationships and knowledge of the disease, and the degree of satisfaction with their lives. The study design was correlational and comparative. The data were analysed using Student's t test and Pearson's correlation. RESULTS: The patients were significantly more anxious and depressed than their caregivers, and had a more negative perception of their family relationships; they also had significantly higher neuroticism scores. Although the caregivers showed good emotional stability and a relatively low level of perceived burden, they stated that their daily lives were not very interesting and involved few social contacts. Twenty-five percent of them declared that they had financial problems; twelve percent also said they had to face problems of disease-related stigma and embarrassment. CONCLUSIONS: The results suggest that emotional stability is an important psychological determinant of perceived distress among the caregivers of hemodialysed patients. Assessing this personality trait and the reciprocal experience of chronicity in patients and caregivers may help nephrology teams identify subjects at major psychological risk, and to select the appropriate psychological support.