'I have got something positive out of this situation': psychological benefits of caregiving in relatives of young people with muscular dystrophy
| Autor: | Corrado Angelini, Roberta Battini, Luisa Politano, Michela Catteruccia, Giulia Colia, Gian Luca Vita, Guja Astrea, Claudio Semplicini, Adele D'Amico, Maria Chiara Motta, Maria Grazia D'Angelo, Erika Brighina, Maria Elena Lombardo, Antonella Zaccaro, Marianna Scutifero, Luca Bello, Lorenza Magliano, Roberta Scalise, Umberto Balottin, Giuseppe Vita, Alessandra Sagliocchi, Maria Sframeli, Giulia Ricci, Alessandra Gaiani, Marika Pane, Angela Berardinelli, Sonia Messina, Federica Civati, Melania Patalano |
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| Přispěvatelé: | Magliano, Lorenza, Patalano, M, Sagliocchi, A, Scutifero, M, Zaccaro, A, D'Angelo, Mg, Civati, F, Brighina, E, Vita, G, Vita, Gl, Messina, S, Sframeli, M, Pane, M, Lombardo, Me, Scalise, R, D'Amico, A, Colia, G, Catteruccia, M, Balottin, U, Berardinelli, A, Motta, Mc, Angelini, C, Gaiani, A, Semplicini, C, Bello, L, Battini, R, Astrea, G, Ricci, G, Politano, Luisa |
| Rok vydání: | 2013 |
| Předmět: |
Male
Activities of daily living psychological benefit Muscular Dystrophies Cost of Illness Surveys and Questionnaires Activities of Daily Living 80 and over Young adult Child media_common Aged 80 and over Social network Original Communication Middle Aged Professional support Test (assessment) Caregivers Italy Neurology Child Preschool Caregiving Female medicine.symptom Clinical psychology Adult medicine.medical_specialty Weakness Adolescent media_common.quotation_subject Clinical Neurology MEDLINE Stress Young Adult Social support Perception medicine Humans Family Psychological benefits Preschool Psychiatry Muscular dystrophy Aged Analysis of Variance Social Support Stress Psychological Neurology (clinical) business.industry Psychological business |
| Zdroj: | Journal of Neurology |
| ISSN: | 1432-1459 0340-5354 |
| DOI: | 10.1007/s00415-013-7176-8 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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