The Other Sibling: Mental Health Effects on a Healthy Sibling of a Child With a Chronic Disease: A Systematic Review

Mariñez, Maria G Quintana; Chakkera, Mohana; Ravi, Niriksha; Ramaraju, Rajita; Vats, Aastha; Nair, Athira R; Bandhu, Atithi K; Koirala, Divya; Pallapothu, Manoj R; Khan, Safeera

doi:10.7759/cureus.29042

Cited by 3 publications

(2 citation statements)

References 22 publications

(33 reference statements)

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“…Studies on parent reports indicate negative aspects of their quality of life, because of their stress and the child’s diagnosis burden. Additionally, they indicate that the healthy siblings have a tendency to under report the difficulties they face in relation to their affected sibling, in order to formulate the answer they think is expected from them [ 31 , 32 , 33 ]. Another important limitation was that the order of birth of the child with a disability was not considered, as it is known that for a sibling relationship it is important whether a given child is the youngest or the oldest among siblings.…”

Section: Discussionmentioning

confidence: 99%

Sibling Relationship Dynamics in Families with a Child Diagnosed with a Chronic Mental Disorder versus a Somatic Condition

et al. 2023

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Background: Recent research still focuses on the psychological impact on siblings and the problematic relationships in families with children with chronic illnesses. Our study evaluates the dynamics in sibling relationships in families with a child diagnosed with a chronic disease. Methods: We comparatively evaluated the degree of empathy, involvement, friendship, and rivalry in sibling relationships in two groups of families who have a child with a chronic pediatric disorder versus a chronic mental disorder. Results: The levels of involvement/friendship, empathy/care/concern, and education/learning were significantly higher in the pediatric group. Where there were siblings under the age of 10, rivalry scores tended to be higher in both groups. Conclusions: Coping strategies, emphatic interactions, and implications in common activities are difficult to identify in the relationship between siblings when one of them has a chronic mental disorder. All of these negative aspects entail poor quality sibling relationships and draw alarm signals regarding the need for monitoring and intervention familial programs.

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Section: Discussionmentioning

confidence: 99%

Sibling Relationship Dynamics in Families with a Child Diagnosed with a Chronic Mental Disorder versus a Somatic Condition

et al. 2023

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“…We must not forget that in all patients with IEI, especially in those with intellectual disabilities, the burden of this disease affects the family unit as a whole, not only affecting the parents or the direct caregivers, but additionally it may take a toll on the siblings who are at risk of developing emotional and behavioral difficulties ( 32 ); for this reason, they should be included as part of the care plan ( 33 ). Even though a multidisciplinary approach ought to be stablished, the impact of frequent medical appointments and therapy sessions should be taken into account when planning the transition ( 34 ).…”

Section: Proposed Carementioning

confidence: 99%

Navigating the transition of care in patients with inborn errors of immunity: a single-center’s descriptive experience

Mejía González,

Quijada Morales,

Escobar

et al. 2023

Front. Immunol.

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The transition from pediatric to adult care is a critical milestone in managing children, especially in those with complex chronic conditions. It involves ensuring the patient and family adapt correctly to the new phase, maintaining continuity of ongoing treatments, and establishing an appropriate follow-up plan with specialists. Patients with Inborn error of immunity (IEI), formerly known as Primary Immune Disorders (PID) are part of a group of disorders characterized by alterations in the proper functioning of the immune system; as the diagnostic and treatment tools for these entities progress, life expectancy increases, and new needs emerge. These children have special needs during the transition. Particularly important in the group of children with PID and syndromic features, who often present multiple chronic medical conditions. In these cases, transition planning is a significant challenge, involving not only the patients and their families but also a wide range of specialists. To achieve this, a multidisciplinary transition team should be established between the pediatric specialists and the adult consultants, designing a circuit in which communication is essential. As few transition care guidelines in the field of PID are available, and to our knowledge, there is no specific information available regarding patients with PID associated with syndromic features, we share our experience in this issue as a Primary Immunodeficiencies Unit that is a National Reference Center for PID, and propose a guide to achieve an adequate and successful transition to adulthood in these patients, especially in those with associated syndromic features.

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Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain

Calvo Penadés,

Moreno Ruzafa,

Calzada-Hernández

et al. 2024

Pediatr Rheumatol

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Background To assess the psychosocial impact of moderate-severe juvenile idiopathic arthritis (JIA) on patients and their families, among those who had been treated with at least one anti-tumor necrosis factor (anti-TNF-α), according to routine clinical practice in Spain.Patients and methods A 24-month observational, multicentric, cross-sectional and retrospective study was performed. Children diagnosed with JIA were enrolled at three tertiary-care Spanish hospitals. The study included children treated with biologic disease-modifying antirheumatic drugs (bDMARD) who participated in a previous study, the ITACA, and who continued follow-up in these pediatric rheumatology units. Patient health-related quality of life (HRQoL) was assessed using the Pediatric Quality of Life Inventory (PedsQL ™ ). Caregivers completed an interview to gather information about school attendance, their children's participation in school and social activities, its impact on their jobs and social life and perceived psychosocial support.A descriptive statistical analysis of all the variables was performed. The Mann-Whitney-U test or Kruskall-Wallis H test were used to compare quantitative variables and Fisher's exact tests was used for qualitative variables. Tests were twotailed with a significance level of 5%. The data were analyzed using SPSS V18.0 statistical software. ResultsOne hundred and seven patients were included. Overall, patients were on inactive disease or low disease activity according to JADAS-71 score and had very low functional disability according to CHAQ score. Up to 94.4% of patients were receiving drug treatment, mainly with bDMARD in monotherapy (84.5%). Based on PedsQL, patients and parents referred a high HRQoL. School Functioning PedsQL domain achieved the lowest score. Work and social impact due to the child´s disease was greater for mothers than for fathers. The understanding of the disease was lower at school than in the with family and friends' environments. ConclusionMost of the patients had a high HRQoL and had controlled disease activity, despite having a negative psychosocial impact on some of them and their families, mainly on school functioning. Children's disease seems to involve greater work and psychosocial impacts for mothers than for fathers of children affected by JIA.

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The Other Sibling: Mental Health Effects on a Healthy Sibling of a Child With a Chronic Disease: A Systematic Review

Cited by 3 publications

References 22 publications

Sibling Relationship Dynamics in Families with a Child Diagnosed with a Chronic Mental Disorder versus a Somatic Condition

Sibling Relationship Dynamics in Families with a Child Diagnosed with a Chronic Mental Disorder versus a Somatic Condition

Navigating the transition of care in patients with inborn errors of immunity: a single-center’s descriptive experience

Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain

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