The Perspective of Siblings of Children With Chronic Illness

Knecht, Christiane; Hellmers, Claudia; Metzing, Sabine

doi:10.1016/j.pedn.2014.10.010

Cited by 100 publications

(109 citation statements)

References 18 publications

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“…Previous studies have demonstrated that well siblings of patients with chronic physical disorders are at increased risk of internalizing their problems, experiencing emotional distress, and having impaired academic performance . Increased parental focus on children with chronic disease may decrease attention given to the affected children's well siblings, resulting in jealousy, envy, and feelings of loneliness in the latter . These effects have been described anecdotally in AD, but not thoroughly explored.…”

Section: Methodsmentioning

confidence: 99%

The impact of pediatric atopic dermatitis on families: A review

Yang

Beck

Sekhon

et al. 2018

Pediatric Dermatology

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Background Atopic dermatitis (AD) is an extremely common childhood disease, with considerable impact on the quality of life of affected children and their families. While pruritus is the hallmark symptom of this disease, AD has been well‐documented to impact patients beyond physical symptoms, resulting in behavior problems, mood disorders, and sleep disturbance. Objective This literature review outlines how atopic dermatitis impacts the quality of life of families of children affected by AD. Methods A total of 3436 articles were identified via an online search of the MEDLINE health literature database and were screened for relevance to quality of life impacts on families with children affected by AD. Results Caring for children affected by AD can be an extremely time‐consuming task that can impair personal relationships, decrease psychosocial functioning, and cause sleep loss among family members of affected patients. Additionally, AD may result in work absence or decreased work productivity for caregivers. Special diets, irritant and allergen avoidance strategies, and alternative therapies are commonly used by patients to manage their disease and require large amounts of family involvement. Conclusions Atopic dermatitis can greatly decrease quality of life of families of affected children in various domains, including sleep, finances, and relationships. Early intervention and psychotherapy may be needed in some patients to address these quality of life impairments.

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Section: Methodsmentioning

confidence: 99%

The impact of pediatric atopic dermatitis on families: A review

Yang

Beck

Sekhon

et al. 2018

Pediatric Dermatology

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“…Furthermore, Knecht et al . () have argued that the different care‐taking roles undertaken by siblings should be looked into in more depth. As a result, one aim for this article is to begin to address this gap in the literature by detailing the informal caring roles that siblings in families with a child with epilepsy described.…”

Section: Children and Informal Care Within The Familymentioning

confidence: 99%

Siblings' caring roles in families with a child with epilepsy

Webster

2017

Sociology Health & Illness

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Despite large amounts of care for chronic conditions being provided within the family, information regarding the extent to which siblings contribute to informal care practices in families where a child has a chronic condition is limited. This article draws on multiple perspective data from 24 families that had a child with epilepsy. In doing so, the article illustrates siblings' significant contribution to caring for their brother or sister and further develops the alert assistant concept. Two additional distinct caring roles that the siblings took on are also outlinedthe substitute parent and parenting assistant roles. The relationship between siblings' socio-demographic characteristics and their caring responsibilities is also explored. The paper's findings are that siblings who were older, female and those in families with a higher child to parent ratio took on more caring responsibilities. Consequently, this article contributes to the currently limited literature on siblings who care for a chronically ill brother or sister by increasing understandings of different caring roles and experiences of chronic illness in families.

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“…Adolescence and young adulthood is a dynamic life stage characterised by significant cognitive, social and emotional development milestones(Arnett, ). A familial cancer diagnosis during this period can contribute to the development of mental health problems and hamper efforts to establish individual identity, pursue education and employment, form intimate relationships and gain financial and personal independence(Fleary & Heffer, ; Knecht, Hellmers, & Metzing, ).…”

Section: Introductionmentioning

confidence: 99%

An invisible patient: Healthcare professionals’ perspectives on caring for adolescents and young adults who have a sibling with cancer

et al. 2018

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The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings’ needs are limited. This study explores healthcare professionals’ (HCPs’) perspectives on engaging and supporting adolescent and young adult (AYA, 12–25 years) siblings of young cancer patients in hospital settings. Semi‐structured interviews with nine HCPs explored participants’ views on models of care, engagement and assessment of siblings, available services, barriers to care, and future directions. Participants understood the impact of cancer and need to support AYA siblings, but were unclear how these responsibilities fit in with existing models of care and clinical roles. Siblings’ absence from hospitals complicated processes of engagement, assessment and provision of care, challenging some participants to engage siblings outside the clinical context. In the absence of direct contact, HCPs largely relied on patients and parents to report or refer siblings for care. Service and resource limitations further restricted the provision of support to siblings. Despite HCPs’ recognition of the need to support siblings, their “invisibility,” lack of standardised assessment and service constraints complicate the provision of care in hospital settings. Integrating hospital‐based care with community services may better facilitate the engagement and support of AYA siblings.

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The Perspective of Siblings of Children With Chronic Illness

Cited by 100 publications

References 18 publications

The impact of pediatric atopic dermatitis on families: A review

The impact of pediatric atopic dermatitis on families: A review

Siblings' caring roles in families with a child with epilepsy

An invisible patient: Healthcare professionals’ perspectives on caring for adolescents and young adults who have a sibling with cancer

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