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

Abstract

Psychosocial adjustment to a complex and disabling long‐term condition like Parkinson´s disease is a complex, dynamic, cyclical and interactive process. Family caregivers, face multiple challenges that require a significant effort in terms of psychosocial adjustment, which must be considered by healthcare professionals in order to provide a holistic care. The patients’ self‐report version of the Psychosocial Adjustment to Illness Scale (PAIS‐SR), which has been validated in Spain for use in Parkinson's disease, is designed to evaluate the psychosocial adjustment of patients. Our purpose was to validate the Spanish PAIS‐SR version for caregivers of patients with Parkinson's disease. An open, national cross‐sectional study with one point‐in‐time evaluation and retest was carried out in 450 family caregivers of patients with Parkinson's disease. Data were collected in Spain from April 2016 to September 2017. The psychometric analysis performed showed that the Spanish version of the PAIS‐SR for caregivers presents adequate indicators of reliability, internal and external validity, and is structured according to the seven‐domain model proposed by the author of the instrument.

Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis

“…Adjusting to a new normal involves tackling and disabling health problems on a daily basis [ 54 ] ( Table 5 , T 44 ). Psychosocial adjustment to the disease is a person-centered process rather than a disease-related process, showing how social functioning, mental health and vitality are fundamental to achieving adequate adjustment [ 48 ] ( Table 5 , T 43 ). Family functioning and resilience are psychosocial factors that are associated with adjustment to illness [ 47 , 48 , 56 ], and Whitehead et al [ 39 ] found a predictive relationship between family adaptability and family caregiver depression ( Table 5 , T 44 , T 45 , and T 47 ).…”

“…Psychosocial adjustment to the disease is a person-centered process rather than a disease-related process, showing how social functioning, mental health and vitality are fundamental to achieving adequate adjustment [ 48 ] ( Table 5 , T 43 ). Family functioning and resilience are psychosocial factors that are associated with adjustment to illness [ 47 , 48 , 56 ], and Whitehead et al [ 39 ] found a predictive relationship between family adaptability and family caregiver depression ( Table 5 , T 44 , T 45 , and T 47 ). Arested et al and Zhang [ 7 , 47 ] point out that the family adjustment is possible when good relationships between family members are present and adequate family functioning is achieved.…”

“…To achieve adequate psychosocial adjustment, social focus, mental health and vitality are also necessary [ 45 ]. Helping with communication skills [ 34 , 44 ] and helping the family caregiver to manage social life seems to be a way to facilitate health and foster positive living with LTCs through care plans and thus enable adjustment [ 48 ].…”

“…([33], p. 3) T43. "Psychosocial adjustment to a complex and disabling long-term condition like PD is a complex, dynamic, cyclical and interactive process in which different factors and mechanisms play key roles" ([48], p. 2) T44. "Adjustment to a "new normal" requires patients with chronic health conditions to cope with disabling health impairments on a daily basis, for example, by following a treatment regimen, managing the financial impact of treatments, or changing leisure time activities and social interactions to accommodate the impairment" ([54], p. 2) T45.…”

Understanding support systems for Parkinson's disease management in community settings: A cross‐national qualitative study

“…The lack of awareness of what support is available in the community can lead to an overlap in activities, limited use of community resources and action-planning gaps. [18][19][20] Understanding how systems of support for PD management in the community work is essential to enhance the reach of services. Moreover, it is paramount to identify the successful initiatives used by different countries and to learn from established good practices.…”