Search

This study explored views of users with muscular dystrophies and their caregivers on staff-user relationships and the treatments provided by a Rehabilitation Centre during the pandemic. Patients and relatives were asked to anonymously complete an open-ended questionnaire exploring their views on these aspects. Fifty-four patients and 40 caregivers gave their informed consent and participated in the survey. Fifty-three patients were adults, 28% suffering from Duchenne/Becker muscular dystrophy. Patients reported 269 comments on health care services provided during the pandemic, 132 (49%) concerning positive aspects and 137 (51%) negative aspects. The prompt restart of the rehabilitation therapies and the staff closeness over the pandemic were the practical aspects most frequently appreciated (46.9%), while closer family contacts and the perception of being able to rely on the Centre's constant support were the most cited psychological aspects (53.1%). Architectural barriers, difficulties in accessing public health services, economic difficulties, and lack of support from welfare and other agencies were the practical critical points most frequently reported (89%). In addition, social isolation, and loneliness due to fear of contagion were the most negative psychological aspects (10.1%). As regard the caregivers' views, participants reported 151 comments. Of these, 86 (56.9%) were positive and 65 (43.1%) were negative. Among the positive aspects, the psychological ones - such as closer family contacts, not feeling abandoned and counting on the constant Centre's professional support prevailed (53.5%). As for the negative aspects, most caregivers (92.6%) believe that the pandemic exacerbated their financial and bureaucratic difficulties, particularly in poorer families.

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.

Background Hereditary transthyretin amyloidosis (hATTR), alias ATTR variant (ATTRv) is a severe and disabling disease causing sensory and motor neuropathy, autonomic dysfunction, and cardiomyopathy. The progressive decline of patient’s functional autonomy negatively affects the patient’s quality of life and requires increasing involvement of relatives in the patient’s daily life. Family caregiving may become particularly demanding when the patient is no longer able to move independently. This study is focused on the psychosocial aspects of ATTRv from the patient and relative perspectives. In particular, it explored: the practical and psychological burdens experienced by symptomatic patients with ATTRv and their key relatives and the professional and social network support they may rely on; whether burden varied in relation to patients’ and relatives’ socio-demographic variables, patients’ clinical variables, and perceived professional and social network support; and, any difference in burden and support between patients and their matched relatives. Methods The study was carried out on symptomatic patients included in the ATTRv Italian national registry and living with at least one adult relative not suffering from severe illness and being free from ATTRv symptoms. Patients and relatives’ assessments were performed using validated self-reported tools. Results Overall, 141 patients and 69 relatives were evaluated. Constraints of leisure activities, feelings of loss and worries for the future were the consequences of ATTRv most frequently reported by patients and relatives. Both in patients and their relatives, the burden increased with the duration of symptoms and the level of help in daily activities needed by the patient. In the 69 matched patient-relative pairs, the practical burden was significantly higher among the patients than among their relatives, while the psychological burden was similar in the two groups. Moreover, compared to their relatives, patients with ATTRv reported higher levels of professional and social network support. Conclusions These results show that ATTRv is a disease affecting quality of life of both patients and their families. Supporting interventions should be guaranteed to patients, to facilitate their adaptation to the disease, and to their families, to cope as best as possible with the difficulties that this pathology may involve.

Il Combined Individual and Group Intervention (CIGI) propone un intervento riabilitativo combinato individuale e di gruppo, ideato per un uso nelle strutture residenziali psichiatriche. Risultato della revisione degli strumenti presentati nel Vado — Manuale sulla Riabilitazione Psichiatrica (Morosini et al., 1998) e dell’adattamento al contesto residenziale di parti dell’Intervento psicoeducativo integrato in psichiatria (Falloon, 1993) secondo le indicazioni dell’OMS su riabilitazione psicosociale e empowerment, il testo è centrato sullo sviluppo di programmi riabilitativi combinati nelle strutture residenziali ad alta e media intensità assistenziale, dove è maggiore il rischio di interventi «passivizzanti». Al contempo fornisce indicazioni e strumenti per l’uso del programma in contesti abitativi a intensità assistenziale più bassa o quasi assente (residenzialità «leggera», abitare supportato) e nei centri diurni. Il testo è suddiviso in tre capitoli principali così strutturati: • l’intervento CIGI, in cui vengono descritte le fasi di conduzione e monitoraggio dell’intervento riabilitativo combinato; • la preparazione dell’équipe all’uso dell’intervento; • gli strumenti di lavoro (fotocopiabili e scaricabili online). Completa l’opera un’Appendice con esempi d’uso degli strumenti e testimonianze di operatori e utenti. Il programma si rivolge agli operatori della riabilitazione psichiatrica e alle équipe multidisciplinari delle strutture residenziali e semi-residenziali psichiatriche e fornisce loro indicazioni e strumenti per realizzare un intervento empowerment-oriented.

Additional file 1. Table S1, entitled “Help in daily activities needed by the patients with ATTRv and provided by their relatives in the past two months”; Table S2, entitled “Practical and psychological burden experienced by patients with ATTRv (N=141) in the last two months”; Table S3, entitled “ Perceived support received from professionals and social network by patients with ATTRv (N=141)”; Table S4, entitled “Practical and psychological burden experienced by relatives of patients with ATTRv (N=69) in the last two months”; Table S5, entitled “Perceived support received from professionals and social network by relatives of patients with ATTRv (N=69)”.