title: "I have got something positive out of this situation": psychological benefits of caregiving in relatives of young people with muscular dystrophy.
abstract: 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.
authors.affiliation: Department of Psychology, Second University of Naples (SUN), Viale Ellittico, 31, 81100, Naples, Caserta, Italy, lorenza.magliano@unina2.it.
authors.forename: Lorenza
authors.initials: L
authors.lastname: Magliano
authors.forename: Melania
authors.initials: M
authors.lastname: Patalano
authors.forename: Alessandra
authors.initials: A
authors.lastname: Sagliocchi
authors.forename: Marianna
authors.initials: M
authors.lastname: Scutifero
authors.forename: Antonella
authors.initials: A
authors.lastname: Zaccaro
authors.forename: Maria Grazia
authors.initials: MG
authors.lastname: D'Angelo
authors.forename: Federica
authors.initials: F
authors.lastname: Civati
authors.forename: Erika
authors.initials: E
authors.lastname: Brighina
authors.forename: Giuseppe
authors.initials: G
authors.lastname: Vita
authors.forename: Gian Luca
authors.initials: GL
authors.lastname: Vita
authors.forename: Sonia
authors.initials: S
authors.lastname: Messina
authors.forename: Maria
authors.initials: M
authors.lastname: Sframeli
authors.forename: Marika
authors.initials: M
authors.lastname: Pane
authors.forename: Maria Elena
authors.initials: ME
authors.lastname: Lombardo
authors.forename: Roberta
authors.initials: R
authors.lastname: Scalise
authors.forename: Adele
authors.initials: A
authors.lastname: D'Amico
authors.forename: Giulia
authors.initials: G
authors.lastname: Colia
authors.forename: Michela
authors.initials: M
authors.lastname: Catteruccia
authors.forename: Umberto
authors.initials: U
authors.lastname: Balottin
authors.forename: Angela
authors.initials: A
authors.lastname: Berardinelli
authors.forename: Maria Chiara
authors.initials: MC
authors.lastname: Motta
authors.forename: Corrado
authors.initials: C
authors.lastname: Angelini
authors.forename: Alessandra
authors.initials: A
authors.lastname: Gaiani
authors.forename: Claudio
authors.initials: C
authors.lastname: Semplicini
authors.forename: Luca
authors.initials: L
authors.lastname: Bello
authors.forename: Roberta
authors.initials: R
authors.lastname: Battini
authors.forename: Guja
authors.initials: G
authors.lastname: Astrea
authors.forename: Giulia
authors.initials: G
authors.lastname: Ricci
authors.forename: Luisa
authors.initials: L
authors.lastname: Politano
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000704:Analysis of Variance; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D009136:Muscular Dystrophies / Q000451:nursing* / Q000523:psychology*; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D055815:Young Adult