Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers

Abstract

Background: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA. Methodology: This is a mixed methods research, that includes qualitative and quantitative data, and was carried out in two phases. First phase: a pragmatic qualitative study (questionnaire construction) was conducted in two parts, a non-systematic literature review followed by interviews with primary caregivers. Second phase: a crosssectional study (questionnaire validation) to complete validation and estimate Cronbach's alphas based on tetrachoric correlation coefficients, correlation matrix and Cohen's kappa coefficient test. Results: There were 38 articles found related to the experience of caregivers. 15 primary caregivers were interviewed (female 93%, median age 45 years). Thematic analysis identified 9 important topics from the perspective of participants (economic impact, coping, family roles, impact of diagnosis, mental health, couple/mate relationships, impact at work, religion, and knowledge of the disease). These topics were combined to create the interview questionnaire (56 items). Later, it was modified to 62 items that were divided into five dimensions: impact of the disease (psychosocial, economic, family, and relationships), knowledge of the disease, alternative medicine, future, and religion. The interview questionnaire was applied to 32 primary caregivers (female 93%, median age 37 years), results identify depression on 29 (90%), 18 (56%) feel sadness at diagnosis, 20 (63%) mentioned that JIA has influenced in their financial situation, 23 (72%) feel anxiety about the future, and 11 (37%) considered that their family relationships have changed. Statistical analysis identified inconsistencies during convergent and divergent validity of the construct. Consequently, 11 items were eliminated, 3 relocated, 6 modified, and 39 compacted obtaining the "Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire" (CAREGIVERS questionnaire). This final version resulted on an eight-dimension (28 items) instrument. Conclusions: The CAREGIVERS questionnaire captures perspectives of both the participants and clinicians. It will be helpful to measure the impact of the disease and thus, to improve the quality of care of children with JIA and their families.

The Effect of the Educational Brochure Versus the Video on Disease Knowledge in Juvenile Idiopathic Arthritis Patients: A Randomized Controlled Trial

“…Another reason is educational level is associated with health literacy and health related knowledge (18). In our study, level of education in most JIA patients' caregivers were below secondary school which was lower than in western countries (10,19,20). Additionally, about 70% of participants had monthly household income lower than Thai average monthly income per household in 2017 (21).…”

Comparing parental distress and children’s difficulties between parents of children with rheumatic diseases and parents of healthy children in families facing the COVID-19 pandemic

“…PRDs affect not only children but also their entire family, with repercussions on their practical and psychological demands (Torres-Made et al, 2020 ), which could lead to worse psychological outcomes in this vulnerable population, especially during this critical COVID-19 period. In fact, the recent pandemic is affecting family interactions (Durcan et al, 2021 ), upsetting children’s environment and daily routine (Masi et al, 2021 ; Morelli et al, 2021 ) and could be a threat to the health status of individuals with a previous disease (Bramanti et al, 2021 ).…”

“…Among the chronic conditions, pediatric rheumatic diseases (PRDs) are a heterogeneous group of disorders associated with abnormal immune system functioning, starting in childhood and often persisting into adulthood. Children with PRDs could have a disabling and impairing quality of life, despite substantial progress in disease management over the years (Cohen et al, 2017 ; Torres-Made et al, 2020 ). Juvenile idiopathic arthritis is the most common chronic rheumatic disease in childhood with a prevalence of approximately 1 to 2 per 1000 children, and an incidence of 11 to 14 new cases per 100000 children (Del Giudice et al, 2017 ; Prakken et al, 2011 ).…”

Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children

“…The tool includes 28 items that assess the emotional, social, family, economic and labor impacts, in addition to the caregiver-patient relationship, partner relationship, spirituality (religion or personal beliefs) and social networks. The CAREGIVERS questionnaire has an application time of approximately 15 min [ 20 ]. The time to complete each questionnaire was reported during the duration of the study.…”

“…After a literature review focused on the impacts of PRD on caregivers, it was identified that there was no multidimensional instrument that would measure the impact that PRD had on the daily lives of caregivers of children and adolescents with these diseases. For this reason, our group developed and validated the “Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire” (CAREGIVERS questionnaire) to measure the impact on caregivers of children with JIA with the objective of creating risk profiles and perform specific interventions to lessen the impacts on caregivers [ 20 ]. With a validated instrument, measuring the impact on caregivers was necessary to understand the impact better and be able to improve the well-being of caregivers and that of their patients.…”