"I have got something positive out of this situation"

Psychological benefits of caregiving in relatives of young people with muscular dystrophy

Lorenza Magliano, Melania Patalano, Alessandra Sagliocchi, Marianna Scutifero, Antonella Zaccaro, Maria Grazia D'Angelo, Federica Civati, Erika Brighina, Giuseppe Vita, Gian Luca Vita, Sonia Messina, Maria Sframeli, Marika Pane, Maria Elena Lombardo, Roberta Scalise, Adele D'Amico, Giulia Colia, Michela Catteruccia, Umberto Balottin, Angela Berardinelli & 9 others Maria Chiara Motta, Corrado Angelini, Alessandra Gaiani, Claudio Semplicini, Luca Bello, Roberta Battini, Guja Astrea, Giulia Ricci, Luisa Politano

Research output: Contribution to journalArticle

17 Citations (Scopus)

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 languageEnglish
Pages (from-to)188-195
Number of pages8
JournalJournal of Neurology
Volume261
Issue number1
DOIs
Publication statusPublished - Jan 2014

Fingerprint

Muscular Dystrophies
Psychology
Social Support
Limb-Girdle Muscular Dystrophies
Aptitude
Rare Diseases
Patient Care

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 journalArticle

Magliano, L, 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, L 2014, '"I have got something positive out of this situation": Psychological benefits of caregiving in relatives of young people with muscular dystrophy', Journal of Neurology, vol. 261, no. 1, pp. 188-195. https://doi.org/10.1007/s00415-013-7176-8
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. / "I have got something positive out of this situation" : Psychological benefits of caregiving in relatives of young people with muscular dystrophy. In: Journal of Neurology. 2014 ; Vol. 261, No. 1. pp. 188-195.
@article{23a4b3bceb6648edb8bfd0ef538b1c22,
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.",
keywords = "Caregiving, Muscular dystrophy, Professional support, Psychological benefits, Social network",
author = "Lorenza Magliano and Melania Patalano and Alessandra Sagliocchi and Marianna Scutifero and Antonella Zaccaro and D'Angelo, {Maria Grazia} and Federica Civati and Erika Brighina and Giuseppe Vita and Vita, {Gian Luca} and Sonia Messina and Maria Sframeli and Marika Pane and Lombardo, {Maria Elena} and Roberta Scalise and Adele D'Amico and Giulia Colia and Michela Catteruccia and Umberto Balottin and Angela Berardinelli and Motta, {Maria Chiara} and Corrado Angelini and Alessandra Gaiani and Claudio Semplicini and Luca Bello and Roberta Battini and Guja Astrea and Giulia Ricci and Luisa Politano",
year = "2014",
month = "1",
doi = "10.1007/s00415-013-7176-8",
language = "English",
volume = "261",
pages = "188--195",
journal = "Journal of Neurology",
issn = "0340-5354",
publisher = "Dr. Dietrich Steinkopff Verlag GmbH and Co. KG",
number = "1",

}

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

VL - 261

SP - 188

EP - 195

JO - Journal of Neurology

JF - Journal of Neurology

SN - 0340-5354

IS - 1

ER -