scholarly journals Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson’s Disease: Spanish validation study

Author(s):  
Leire Ambrosio ◽  
Mª Victoria Navarta‐Sánchez ◽  
Mª Carmen Portillo ◽  
Raquel Martin‐Lanas ◽  
Miriam Recio ◽  
...  
2020 ◽  
Vol 2020 ◽  
pp. 1-10
Author(s):  
María Cristina Lopes Dos Santos ◽  
María Victoria Navarta-Sánchez ◽  
José Antonio Moler ◽  
Ignacio García-Lautre ◽  
Sagrario Anaut-Bravo ◽  
...  

Neurodegenerative diseases such as Parkinson’s and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers’ psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson’s disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson’s disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson’s or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.


Nursing Open ◽  
2019 ◽  
Vol 6 (3) ◽  
pp. 1262-1268 ◽  
Author(s):  
Mari Carmen Portillo ◽  
Leire Ambrosio ◽  
Raquel Lanas Martín ◽  
Maria Victoria Navarta ◽  
MEugenia Ursua Sesma ◽  
...  

2004 ◽  
Vol 19 (10) ◽  
pp. 1226-1232 ◽  
Author(s):  
Pablo Martínez-Martín ◽  
Carlos Salvador ◽  
Luis Menéndez-Guisasola ◽  
Sonia González ◽  
Aurelio Tobías ◽  
...  

2021 ◽  
Vol 36 (1) ◽  
pp. 97-119
Author(s):  
Beata Szluz

Due to the aging of societies the increased prevalence of patients with dementia is observed. Parkinson’s disease is one of the most frequent neurodegenerative disorders and occurs mainly among the people agedover 50 years. Caring for a person with Parkinson’s disease is not only exhausting physically and emotionally, but it also meanshigh financial costs. Caring is associated with a high risk of a decreasedquality of life, it is especially in case of the family caregivers who are emotionally attached to the patient. The article attempts to show the problems associated with caring for a person with Parkinson’s disease that set tasks for social work with a family experiencing disease and disability. The survey was conducted in July 2019 in the Podkarpackie Voivodeship, using the (In-Depth Interview – IDI technique. The study was qualitative. Its assumption was not to obtain representative data characterizing the family caregivers of people with Parkinson’s disease, but to try to capture how the problems associated with caring for this category of patients burden caregivers and to what extent they expect support (supporting supporters). Presenting the burden on family caregivers in the light of qualitative research made it possible to identify the specific tasks facing a social worker who works with the family of a chronically ill elderly person and to propose a training program for caregivers.


2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.


2019 ◽  
Vol 26 (10) ◽  
pp. 1281-1288 ◽  
Author(s):  
P. Martinez‐Martin ◽  
F. G. Radicati ◽  
C. Rodriguez Blazquez ◽  
J. Wetmore ◽  
N. Kovacs ◽  
...  

2016 ◽  
Vol 24 ◽  
pp. 87-92 ◽  
Author(s):  
Maria-Lucia Muntean ◽  
Heike Benes ◽  
Friederike Sixel-Döring ◽  
Kallol Ray Chaudhuri ◽  
Keisuke Suzuki ◽  
...  

2016 ◽  
Vol 25 ◽  
pp. 52-57 ◽  
Author(s):  
Leire Ambrosio ◽  
Mari Carmen Portillo ◽  
Carmen Rodriguez-Blazquez ◽  
Juan Carlos Martínez-Castrillo ◽  
Mayela Rodriguez-Violante ◽  
...  

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