Impact of the COVID-19 pandemic on rehabilitation setting. Part 1: professionals' views on the changes in routine care provided by a rehabilitation centre for patients with muscle diseases.

The outbreak of COVID-19 has forced the health care system to undergo profound rearrangements in services and facilities, especially during the periods of lockdown. In this context, inpatient and outpatient services had to rethink and reorganize their activities to meet the needs of severely disabled patients, as those affected by Muscular Dystrophies (MDs). We present the preliminary results of a survey aiming to explore the staff views on the changes in the care provided by the Gaetano Torre Rehabilitation Centre, and, the impact of these changes on professionals, patients and their families. The survey was carried out using an open-ended questionnaire including six-items, on the practical and psychological aspects emerged during the pandemic in relation to the healthcare services provided by the Centre and to the patients/caregivers conditions. The participants, most of them physiotherapists, highlighted 169 aspects emerging in the pandemic, 48.5% referring to the resources used to cope with critical issues and 51.5% concerning the difficulties encountered. Emotional aspects prevailed on practical aspects both in resources (52.4 vs 47.6%) and in difficulties (57.5 vs 42.5%) categories. In particular, with regard to patients' resources, psychological benefits, despite the burden, were greater than practical ones (87 vs 13%), in the form of improved intra-family relationships, feeling more cared for, and satisfaction for the received care. As for the patients' relatives, the staff indicated more resources than difficulties (72.8 vs 17.2%). Among the former, 75% concerned the emotional sphere, such as the perception of having a point of reference even in such a difficult time.

The beliefs of non-psychiatric doctors about the causes, treatments, and prognosis of schizophrenia.

OBJECTIVES: To examine the causal beliefs about schizophrenia of non-psychiatric doctors and whether differential belief in biogenetic vs. psychosocial causes influences doctors' views about treatments and prognosis. DESIGN AND METHODS: Three hundred and five non-psychiatric doctors working in outpatient community centres completed the 'Opinions on mental disorders Questionnaire' after reading a clinical description of people with schizophrenia. RESULTS: The factors most frequently reported as causes of schizophrenia were heredity (65.2%) and use of street drugs (54.1%). Seventy-five per cent of participants endorsed both one or more biological causal factors and one or more psychosocial causal factors. Of the 264 participants who expressed their opinion about the most important cause of schizophrenia, 53.8% indicated a biogenetic cause. Fifty-two per cent of respondents thought it 'completely true' that drugs are useful in schizophrenia, and 33.9% thought it 'completely true' that people with schizophrenia must take drugs all their life. Participants stating that the most important cause was biogenetic more frequently recommended a psychiatrist and less frequently a psychologist. Compared to doctors who indicated a psychosocial cause as the most important one, those who indicated a biogenetic cause were more sceptical about recovery, more confident in the usefulness of drugs, and more convinced of the need of lifelong pharmacological treatments in schizophrenia. CONCLUSIONS: These findings suggest the need to provide some doctors with training on the multiple, interacting causes of schizophrenia and the efficacy of the broad range of available treatments. The education of health professionals regarding stigma and its effects on clinical practice is also needed. PRACTITIONER POINTS: Viewing schizophrenia as mainly due to a biological cause is associated with greater confidence in the usefulness of drugs, higher belief in the need for lifelong pharmacological treatments, and greater prognostic pessimism. Belief in a biologically oriented model of schizophrenia may lead doctors to underestimate the value of psychologists. Prognostic pessimism among doctors may negatively influence clinical decisions, the information doctors provide to their clients, and clients' own beliefs about their chances of recovery. Belief in the need for lifelong pharmacological treatments in schizophrenia may lead doctors to resist drug withdrawal in case of severe side effects.

Integrated care of muscular dystrophies in Italy. Part 2. Psychological treatments, social and welfare support, and financial costs.

This paper describes the psycho-social treatments received by 502 patients with MDs and their relatives, and the costs for care sustained by the families in the previous six month period. Data were collected by the MD-Care Schedule (MD-CS) and the Family Problems Questionnaire (FPQ). Psycho-educational interventions were provided to 72 patients (14.3%), and social/welfare support to 331 patients (65.9%). Social/welfare support was higher in patients with DMD or LGMD, in those showing more severe disability, and in patients who were in contact with centres located in Northern Italy. Psycho-educational interventions were received by 156 (31%) relatives, and social/welfare support by 55 (10.9%) and mainly provided by Family/Patients Associations (83.6%). Relatives with higher educational levels, who spent more daily hours in the assistance of patients with DMD, and in contact with centres in Central Italy more frequently benefited from psycho-educational interventions. In the previous year, costs for care were sustained by 314 (63.9%) relatives. Financial difficulties related to patient's condition, were higher in families of patients who needed more intensive rehabilitation and daily hours of caregiving, and in families who lived further away from the reference's centre. These results showed that psycho-social aspects of MDs care are only partially met in Italy, and that ad hoc supportive interventions for these patients and their families should be potentiated.

Improving psychology students' attitudes toward people with schizophrenia: A quasi-randomized controlled study.

Despite scientific evidence that the majority of people with schizophrenia (PWS) have personal histories of traumatic life events and adversities, their needs for psychological support often remain unmet. Poor availability of nonpharmacological therapies in schizophrenia may be partly because of professionals' attitudes toward people diagnosed with this disorder. As future health professionals, psychology students represent a target population for efforts to increase the probability that PWS will be offered effective psychological therapies. This quasi-randomized controlled study investigated the effect of an educational intervention, addressing common prejudices via scientific evidence and prerecorded audio-testimony from PWS, on the attitudes of psychology students toward PWS. Students in their fifth year of a master's degree in Psychology at the Second University of Naples, Italy were randomly assigned to an experimental group-which attended two 3-hr sessions a week apart-or to a control group. Compared with their baseline assessment, at 1-month reassessment the 76 educated students endorsed more psychosocial causes and more of them recommended psychologists in the treatment of schizophrenia. They were also more optimistic about recovery, less convinced that PWS are recognizable and unpredictable, and more convinced that treatments, pharmacological and psychological, are useful. No significant changes were found, from baseline to 1-month reassessment, in the 112 controls. At 1-month reassessment, educated students were more optimistic about recovery and less convinced that PWS are unpredictable than controls. These findings suggest that psychology students' attitudes toward PWS can be improved by training initiatives including education and indirect contact with users. (PsycINFO Database Record

"I have got something positive out of this situation": psychological benefits of caregiving in relatives of young people with muscular dystrophy.

This paper focuses on the psychological benefits of caregiving in key relatives of patients with muscular dystrophies (MD), a group of rare diseases characterized by progressive weakness and restriction of the patient's functional abilities. We describe whether relatives perceived caregiving to be a positive experience and test whether relatives' perceptions vary in relation to their view of the patient as a valued person, the degree of involvement in care, and the level of support provided by social network and professionals. The study sample included 502 key relatives of patients aged 4-25 years, suffering from Duchenne, Becker, or limb-girdle MD, in treatment for at least 6 months to one of the eight participating centers, living with at least one relative aged 18-80 years. Of key relatives, 88 % stated that they had gotten something positive out of the situation, 96 % considered their patients to be sensitive, and 94 % viewed their patients as talented. Positive aspects of caregiving were more recognized by key relatives who were more convinced that the patient was sensitive and who perceived that they received higher level of professional help and psychological social support. These results suggest that most key relatives consider that their caregiving experience has had a positive impact on their lives, despite the practical difficulties of caring for patients with MD. Professionals should help relatives to identify the benefits of caregiving without denying its difficulties. Clinicians themselves should develop positive attitudes towards family involvement in the care of patients with long-term diseases.

Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative study.

This study explored the burden in parents and healthy siblings of 4-17 year-old patients with Duchenne (DMD) and Becker (BMD) muscular dystrophies, and whether the burden varied according to clinical aspects and social resources. Data on socio-demographic characteristics, patient's clinical history, parent and healthy children burden, and on parent's social resources were collected using self-reported questionnaires administered to 336 parents of patients with DMD (246) and BMD (90). Parents of patients with DMD reported higher burden than those of patients with BMD, especially concerning feeling of loss (84.3% DMD vs. 57.4% BMD), stigma (44.2% DMD vs. 5.5% BMD) and neglect of hobbies (69.0% DMD vs. 32.5% BMD). Despite the burden, 66% DMD and 62.4% BMD parents stated the caregiving experience had a positive impact on their lives. A minority of parents believed MD has a negative influence on the psychological well-being (31.0% DMD vs. 12.8% BMD), and social life of unaffected children (25.7% vs. 18.4%). In the DMD group, burden correlated with duration of illness and parent age, and burden was higher among parents with lower social contacts and support in emergencies. In DMD, difficulties among healthy children were reported as higher by parents who were older, had higher burden and lower social contacts. In both groups, burden increased in relation to patient disability. These findings underline that the psychological support to be provided to parents of patients with MD, should take into account clinical features of the disease.

Effect of diagnostic labeling and causal explanations on medical students' views about treatments for psychosis and the need to share information with service users.

This study examines whether medical students' views of treatments for 'schizophrenia' and of patients' rights to be informed about their condition and their medication were influenced by diagnostic labeling and causal explanations and whether they differed over medical training. Three hundred and eighty-one Italian students attending their first or fifth/sixth year of medical studies read a vignette portraying someone who met diagnostic criteria for 'schizophrenia' and completed a self-report questionnaire. The study found that labeling the case as 'schizophrenia' and naming heredity among its causes were associated with confidence in psychiatrists and psychiatric drugs. Naming psychological traumas among the causes was associated with confidence in psychologists and greater acknowledgment of users' right to be informed about drugs. Compared to first year students, those at their fifth/sixth-year of studies more strongly endorsed drugs, had less confidence in psychologists and family support, and were less keen to share information on drugs with patients. These findings highlight that students' beliefs vary during training and are significantly related to diagnostic labeling and belief in a biogenetic causal model. Psychiatric curricula for medical students should include greater integration of psychological and medical aspects in clinical management of 'schizophrenia'; more information on the psychosocial causes of mental health problems.

Family burden in bipolar disorders: results from the Italian Mood Disorders Study (IMDS).

AIMS: To explore: a) the burden of care, and the professional and social support in relatives of patients with bipolar disorders; b) the psychosocial interventions provided to patients and their families by Italian mental health centres. METHODS: 342 outpatients with a bipolar disorder and their key-relatives were randomly recruited in 26 Italian mental health centres, randomly selected and stratified by geographical area and population density. Family burden was explored in relation to: a) patient's clinical status and disability; b) relatives' social and professional support; c) interventions received by patients and their families; d) geographical area. RESULTS: In the previous two months, global functioning was moderately impaired in 36% of the patients, and severely impaired in 34% of them. Twenty-one percent of patients attended a rehabilitative programme, and 3% of their families received a psychoeducational intervention. Burden was higher when patient's symptoms and disability were more severe, the relatives had poorer psychological support and help in emergencies by the social network, and the family lived in Southern Italy. Differences in family burden in relation to geographical area disappeared when psychosocial interventions were provided. CONCLUSION: This study highlights the need to increase the availability of rehabilitative interventions for patients with bipolar disorders and of psychological support for their families, especially in Southern Italy.

Views of persons with schizophrenia on their own disorder: an Italian participatory study.

OBJECTIVE: This study explored the views of 241 patients with schizophrenia about their own disorder. METHODS: Patients' knowledge of their diagnosis, confidence that they will be well again, and perception of limitations in their own life as a result of the disorder were explored in relation to patients' opinions about the social consequences of schizophrenia. Study results were presented to participants, and suggestions were collected regarding how these study results should be used. RESULTS: Seventy-two respondents (30%) reported that a psychiatrist told them that they have schizophrenia. Respondents who were confident that they would be well again had a lower duration of contact with psychiatric services and a less pronounced perception of affective and social difficulties related to schizophrenia. Respondents who did not feel limited in their life by the disorder reported less social distance and more optimism about the usefulness of treatments. CONCLUSIONS: Participatory studies may provide ideas for a more constructive interaction between patients and professionals.

Patient functioning and family burden in a controlled, real-world trial of family psychoeducation for schizophrenia.

OBJECTIVE: This study explored the effectiveness of a psychoeducational family intervention for schizophrenia on patients' personal and social functioning as well as on relatives' burden and perceived support. METHODS: Thirty-four mental health professionals from 17 public mental health centers in Italy selected 71 families of consumers with schizophrenia. Forty-two families were randomly assigned to a group that received the intervention for six months, and 29 families were assigned to a waiting list for six months. At baseline and six months later, validated tools were used to assess patients' clinical status, personal and social functioning, and social network as well as relatives' burden, social resources, and perception of professional support. RESULTS: In the intervention group the number of patients with poor or very poor global personal and social functioning decreased significantly, from 17 (47 percent) at baseline to nine (25 percent) at follow-up. A significant improvement was found for the intervention group in patients' social relationships, interests in obtaining a job, maintenance of social interests, and management of social conflicts. Twenty-seven patients (74 percent) reported that their social relationships had improved during the six-month period. For both the intervention and control groups, family burden significantly improved. Relatives' social contacts and perception of professional support significantly increased only in the intervention group. CONCLUSIONS: The results suggest that a psychoeducational family intervention may have a significant impact on functional outcomes of schizophrenia when provided to patients and caregivers in real-world settings.

[Family psychoeducational interventions for schizophrenia in routine settings: impact on patients' clinical status and social functioning and on relatives' burden and resources]. / Interventi psicoeducativi familiari per la schizofrenia nella pratica clinica: effetto sullo stato clinico e la disabilità dei pazienti e sul carico e le risorse familiari.

OBJECTIVE: This study explored the effectiveness of a psychoeducational family intervention for schizophrenia on patients' clinical status and disability and relatives' burden and perceived support. METHODS: The study has been carried out in 17 mental health centres. In each of them, 2 professionals were trained in a psychoeducational intervention and applied it for six months with families of users with schizophrenia. At baseline and six months later, patients' clinical status and disability, and relatives' burden, social network and professional support were assessed by validated tools. RESULTS: Of the seventy-one recruited families, 48 (68%) completed the intervention. At six months, a significant improvement was found in patients' clinical status and social functioning, as well as in relatives' burden and social and professional support. In particular, the percentage of patients with poor or very poor global social functioning dropped from 50% to 27% at six months. Forty percent of patients and 45% of relatives reported a significant improvement in their social contacts over the intervention period. CONCLUSIONS: The results of this study confirm the hypothesis that psychoeducational family interventions may have a significant effect on social outcome and family burden in schizophrenia when provided in routine conditions.

[Randomised controlled trial of a behavioural family intervention: 1 year and 11-years follow-up]. / Studio controllato randomizzato di un intervento psicoeducativo familiare: esito ad 1 e a 11 anni.

AIM: To test the efficacy of a Behavioural Family Therapy (BFT) in a routine setting, both short and long term, of a community mental health service (CMHS). METHODS: In a randomised clinical trial 24 patients with a diagnosis of schizophrenia, as confirmed by PSE-IX, were assigned to the BFT according to Falloon (n = 12) or to individual usual treatment (n = 12). They were assessed before and at the end of the active treatment (after one year), and after an 11-years follow-up with compared on basic indicators (hospitalisations, length of stay, drop-out rate) and standardised instruments of psychopathological symptoms, social functioning, family burden. RESULTS: At one-year follow-up clinical important and statistically significant differences were observed for psychotic positive symptoms (p<0.01), self-care (p<0.01), autonomy in daily life (p<0.001), subjective/objective family burden (p<0.001). Other psychosocial variables showed positive outcomes non reaching statistical significance. At the 11-year follow-up, marked differences were observed only in hospitalisations and drop-outs. CONCLUSIONS: The BFT was rather easy to implement in a CMHS and very cost effective. However, as it has been shown in other studies, to keep all the benefits a consistent program of monitoring with booster sessions is essential.

Social network in long-term diseases: a comparative study in relatives of persons with schizophrenia and physical illnesses versus a sample from the general population.

This study compares the social network of a sample of 709 relatives of patients with schizophrenia, 646 relatives of patients with physical diseases, and 714 lay respondents, recruited in 30 randomly selected Italian areas, stratified for geographic location and population density. Each respondent was asked to fill in the Social Network Questionnaire. The social network was less extended and supportive in relatives of patients with schizophrenia than in those of patients with physical diseases and in the general population. Multivariate analyses revealed that social contacts were similarly reduced in relatives of patients with schizophrenia and physical diseases, while social support was significantly lower in relatives of patients with schizophrenia than in the other two groups. Social resources were higher in young respondents and in those living in rural areas. These results highlight the need to provide the families of those with long-term diseases with interventions aimed at increasing their social resources.

Family burden in long-term diseases: a comparative study in schizophrenia vs. physical disorders.

This study explored burden and social networks in families of patients with schizophrenia or a long-term physical disease. It was carried out in 169 specialised units (mental health department, and units for the treatment of chronic heart, brain, diabetes, kidney, lung diseases) recruited in 30 randomly selected geographic areas of Italy. The study sample consisted of 709 key relatives of patients with a DSM-IV diagnosis of schizophrenia and 646 key relatives of patients with physical diseases. Each relative was asked to fill in the Family Problems Questionnaire (FPQ) and the Social Network Questionnaire (SNQ). In all selected pathologies, the consequences of caregiving most frequently reported as always present in the past 2 months were constraints in social activities, negative effects on family life, and a feeling of loss. Objective burden was higher in brain diseases, and subjective burden was higher in schizophrenia and brain diseases than in the other groups. Social support and help in emergencies concerning the patient were dramatically lower among relatives of patients with schizophrenia than among those of patients with physical diseases. In the schizophrenia group, both objective and subjective burden were significantly higher among relatives who reported lower support from their social network and professionals. The results of this study highlight the need to provide the families of those with long-term diseases with supportive interventions, including: (a) the management of relatives' psychological reactions to patient's illness; (b) the provision of information on the nature, course and outcome of patient's disease; (c) training for the relatives in the management of the patient's symptoms; and (d) the reinforcement of relatives' social networks, especially in the case of schizophrenia.

[Burden, attitudes and social support in the families of patients with long-term physical diseases]. / Carico, atteggiamenti e sostegno sociale nelle famiglie dei pazienti con malattie fisiche di lunga durata.

AIMS: To describe in a sample of 646 relatives of patients with physical long-term illnesses: a) the relatives' burden of care; b) the relatives' attitudes towards the patients; c) the social and professional support received by the families. METHODS: The study has been carried out in 30 Italian geographic areas randomly selected taking into account geographic location and population density. The sample has been consecutively recruited in 139 specialised units for the treatment of chronic heart, brain, diabetes, kidney, and lung diseases. Family burden was evaluated in relation to: a) family's socio-demographic variables and patients' clinical variables; b) relatives' attitudes toward the patient; c) social and professional support; d) geographic area and population density. OUTCOME MEASURES: Family Problems Questionnaire, physical illness version (QPF-O) and Social Network Questionnaire (QRS). RESULTS: The consequences of caregiving most frequently reported were constraints in social and recreational activities, and feelings of loss. Burden was more marked in relatives of patients with higher physical disabilities, with neurological illnesses, and in relatives with lower support by their social network. CONCLUSIONS: These data highlight the need to provide psychological and practical support to caregivers of patients with long-term physical diseases on the basis of the evaluation of their needs for care.

The effect of social network on burden and pessimism in relatives of patients with schizophrenia.

The authors explored the social network of caregivers of patients with schizophrenia in relation to relatives' sociodemographic characteristics, patients' clinical variables, family burden, and pessimism about the consequences of the disease. They evaluated 709 key relatives of patients with schizophrenia concerning the above-mentioned variables by means of well-validated questionnaires. A more supportive social network was found in relatives who reported lower levels of burden and pessimism about schizophrenia. The effect of social network on relatives' burden and opinions about schizophrenia was significantly different in relation to relatives' gender. Strengthening the relatives' social network may represent a useful strategy to alleviate their burden and pessimism about schizophrenia.