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.
| Original language | English |
|---|---|
| Pages (from-to) | 188-195 |
| Number of pages | 8 |
| Journal | Journal of Neurology |
| Volume | 261 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - Jan 2014 |
Fingerprint
Keywords
- Caregiving
- Muscular dystrophy
- Professional support
- Psychological benefits
- Social network
ASJC Scopus subject areas
- Clinical Neurology
- Neurology
Cite this
"I have got something positive out of this situation" : Psychological benefits of caregiving in relatives of young people with muscular dystrophy. / Magliano, Lorenza; Patalano, Melania; Sagliocchi, Alessandra; Scutifero, Marianna; Zaccaro, Antonella; D'Angelo, Maria Grazia; Civati, Federica; Brighina, Erika; Vita, Giuseppe; Vita, Gian Luca; Messina, Sonia; Sframeli, Maria; Pane, Marika; Lombardo, Maria Elena; Scalise, Roberta; D'Amico, Adele; Colia, Giulia; Catteruccia, Michela; Balottin, Umberto; Berardinelli, Angela; Motta, Maria Chiara; Angelini, Corrado; Gaiani, Alessandra; Semplicini, Claudio; Bello, Luca; Battini, Roberta; Astrea, Guja; Ricci, Giulia; Politano, Luisa.
In: Journal of Neurology, Vol. 261, No. 1, 01.2014, p. 188-195.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - "I have got something positive out of this situation"
T2 - Psychological benefits of caregiving in relatives of young people with muscular dystrophy
AU - Magliano, Lorenza
AU - Patalano, Melania
AU - Sagliocchi, Alessandra
AU - Scutifero, Marianna
AU - Zaccaro, Antonella
AU - D'Angelo, Maria Grazia
AU - Civati, Federica
AU - Brighina, Erika
AU - Vita, Giuseppe
AU - Vita, Gian Luca
AU - Messina, Sonia
AU - Sframeli, Maria
AU - Pane, Marika
AU - Lombardo, Maria Elena
AU - Scalise, Roberta
AU - D'Amico, Adele
AU - Colia, Giulia
AU - Catteruccia, Michela
AU - Balottin, Umberto
AU - Berardinelli, Angela
AU - Motta, Maria Chiara
AU - Angelini, Corrado
AU - Gaiani, Alessandra
AU - Semplicini, Claudio
AU - Bello, Luca
AU - Battini, Roberta
AU - Astrea, Guja
AU - Ricci, Giulia
AU - Politano, Luisa
PY - 2014/1
Y1 - 2014/1
N2 - 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.
AB - 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.
KW - Caregiving
KW - Muscular dystrophy
KW - Professional support
KW - Psychological benefits
KW - Social network
UR - http://www.scopus.com/inward/record.url?scp=84895076379&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84895076379&partnerID=8YFLogxK
U2 - 10.1007/s00415-013-7176-8
DO - 10.1007/s00415-013-7176-8
M3 - Article
C2 - 24202786
AN - SCOPUS:84895076379
VL - 261
SP - 188
EP - 195
JO - Journal of Neurology
JF - Journal of Neurology
SN - 0340-5354
IS - 1
ER -