Coping with cystic fibrosis: An analysis from the sibling's point of view

Abstract

Background Cystic fibrosis (CF) is a chronic, life‐threatening condition that results in life‐long morbidity and premature mortality. CF has a significant impact on healthy siblings' adaptation and well‐being. Siblings of patients with a chronic disease may experience psychological difficulties, such as anxiety, depression symptoms and troubles in adaptation. This study aimed to explore the participants' experiences of growing up with a CF patient diagnosed at a paediatric age and their adaptation strategies. Methods We enrolled eight CF siblings (adolescents and young adults) in a 6‐month focus group sessions programme. Each session had two phases (psychoeducational and experiential). Transcripts were analysed and grouped through grounded theory analysis to elaborate on data‐driven theory. Results We identified 14 subthemes by which the raw data could be organized. All the subthemes were gathered together according to the axial coding process into six themes (illness, changes, communication, avoidance, normalization, and protection and care). We then grouped the six themes into two main themes (‘Growing up with a CF brother or sister’ and ‘Finding the right distance’) and conceptualized the grounded theory ‘Keeping the right distance’. The participants described the evolving process of maintaining a balance between the illness of their brother or sister, family organization and their own needs. Conclusions Knowing siblings' experiences and their common strategies to deal with the experience of having a brother or sister with a chronic health condition may be useful to ensure more tailored and specific interventions.

Living with Multimorbidity through Time: A Meta-Synthesis of Qualitative Longitudinal Evidence

“…Normalization in the context of a chronic condition was seen as a way for individuals to resume their pre-illness roles and responsibilities, such as finding ways to engage in life [32,49]. Normalization is suggested as an effective strategy for maintaining psychological well-being and making people feel more comfortable with seeking help when they have to cope with other chronic conditions [50][51][52].…”

Qualitative inquiry into the experience of suicide loss, aftereffects and coping strategies of suicide-bereaved Greek-speaking parents in Cyprus

“…Moreover, the present study, although indirectly, is among the few which provide data on the implications of suicide on bereaved siblings. Despite the evidence on the implications of chronic illness (e.g., cystic fibrosis, cancer) on siblings (Milo et al, 2021 ; Snaman et al, 2020 ); there is a lack of studies focused on suicide-bereaved siblings. Thus, according to the present findings future studies on the subject are needed.…”

Adolescent Young Carers Who Provide Care to Siblings

“…There are a number of studies that have focused on siblings of chronically ill or disabled children, but it is not clear whether these siblings provide/d care to their ill or disabled sibling, and if so, the extent of their caring role (see, for example, [1,6,7]). However, studies have shown that siblings of chronically ill or disabled children often feel worried [1,[8][9][10] and overly responsible for their sibling [1].…”

“…Their participation in everyday life is often carried out with their siblings in mind and with the family needs at the forefront [13], at the cost of their school engagement [14]. They often experience a conflict between school and being with their sibling [9] and strive to maintain a balance between their sibling's illness and needs, their family organization, and their own needs [7,15]. Their physical health, psychosocial health, and total health scores have been found to be lower [16], with more cognitive, emotional, social, and motor difficulties [17], as well as more behavioural and psychosomatic symptoms [18] compared to their peers.…”