Study Shows How Children Struggle and Adjust When Sibling Has CF

Marta Figueiredo, PhD avatar

by Marta Figueiredo, PhD |

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siblings and CF


During adolescence and young adulthood, healthy siblings of cystic fibrosis (CF) patients have to find ways to achieve a balance between the illness of their brother or sister, family organization, and their own needs, a small study in Italy reported.

Coping strategies included dampening emotional awareness, normalizing their life experiences, and becoming actively involved in the their sibling’s care. These healthy siblings also noted a decline in communication within the family, and of older siblings taking more time to adjust to the situation than younger ones.

These findings may help to increase awareness of the struggles and coping mechanisms of healthy siblings of CF patients and to tailor support programs, the researchers noted.

The study, “Coping with Cystic Fibrosis: An analysis from the sibling’s point of view,” was published in the journal Child: Care, Health, and Development.

“Several studies have shown that having a brother or sister with chronic disease affects healthy siblings in different ways, such as more internalizing and externalizing of problems, anxiety and depression symptoms, and fewer positive self-attributions,” the researchers wrote.

Notably, a previous review study found that having a sibling with CF may affect healthy siblings in different ways and throughout their lifespan.

As such, “Understanding the experience of growing up with a brother or sister with CF, as well as exploring how siblings manage their experiences … during adolescence and young adulthood could improve support for siblings and their families,” the team added.

Researchers in Rome set out to explore the experiences and coping strategies of siblings who grew up with a brother or sister diagnosed with CF at an early age (younger than 4 years old).

A total of 79 eligible families with at least one healthy child were asked to participate in the study through an email invitation between March 2019 and July 2019. Six (8%) white Italian families, including eight healthy siblings (six females and two males), agreed to take part.

Participants’ mean age at the study’s start was 20.9 years (range, 14–35 years). Their affected siblings had been diagnosed at a mean age of 1.5 years (range, 1–3 years). They all underwent a six-month focus group session program, each having a psycho-educational phase and an experiential phase.

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In the psycho-educational phase, healthy siblings were invited to discuss specific CF topics with a physician, nurse, physiotherapist, and a psychologist. In the experiential phase, they joined a focus group designed to identify key experiences and adaption strategies of people growing up with a brother or sister with CF.

Participants were divided into two focus groups according to their age: those in group 1 were adolescents ages 14–18 (mean age, 16 years), and in group 2 were adults 21–35 years old (mean age, 24).

By analyzing the sessions’ transcripts, the researchers identified 14 subthemes, which were gathered into six themes, grouped into two main themes: ‘growing up with a CF brother or sister’ and ‘findings the right distance’.

Growing up with a sibling with CF was found to affect healthy siblings’ lives in three distinct ways: by breaking down the family balance and consuming the family’s time and attention, by imposing new priorities that led to family reorganization, and by transforming a family’s usual way of communicating.

Healthy siblings highlighted lesser parental attention and family communication, and a lack of space for themselves. While parents may avoid talking about CF to protect a healthy child from its painful aspects, this can prompt a search for alternative sources of information, which can provide a different understanding of the disease, the researchers noted.

Notably, during their growing years, healthy siblings “were committed to finding the ‘right distance’ from the situation and employed various psychosocial strategies to achieve this objective,” they wrote.

These coping mechanisms included avoiding disease-related information and emotional awareness, normalizing CF-associated changes in their life, and approaching their siblings with CF by active engaging with their care.

Older siblings considered a brother or sister’s CF diagnosis a turning point in their life, and needed more time to adjust to the situation than did younger siblings. This is consistent with previous research suggesting that birth order plays “a key role in the normalization process,” the team wrote.

In addition, siblings’ active involvement in the treatment process was found to help “restore a ‘sense of control’ and increase their self-efficacy and self-esteem, particularly with advancing age,” the scientists added.

These findings point to ‘Keeping the right distance’ as a central organizing theme of healthy siblings of CF patients, in which they go through an “evolving process of maintaining a balance between the illness of their brother or sister, family organization, and their own needs,” the team wrote.

The results also have “implications for practice and have the potential to improve social and health care professionals’ awareness and ability to offer tailored support programs,” the researchers added.

Future interventions for healthy siblings of CF patients should focus on helping them express their emotional needs, including within the family, and to ‘restore’ their personal identity beyond that of being siblings of a CF patient.

In addition, these interventions “should consider the core process, used by siblings, to maintain a balance between avoiding or approaching the illness issues, keeping in mind the changing needs of advancing age,” the investigators wrote.

Among the study’s limitations, the team noted the small number of participants, potentially limiting the results’ generalization. This low participation rate may be related to the fact that siblings did not want to get further involved in the life of their brother or sister with CF, or to the identified avoidance strategies of emotional awareness.

Larger studies are needed to confirm these findings and to assess how healthy siblings’ coping strategies affect family functioning, and how their experience drives personal attitudes and lifestyle choices, the researchers noted.