Quality-of-Life Evaluation of Healthy Siblings of Children with Chronic Illness

Dinleyici, Meltem; Çarman, Kürşat Bora; Özdemir, Canan; Harmancı, Koray; Eren, Makbule; Kırel, Birgül; Şimşek, Enver; Yarar, Çoşkun; Çamurdan, Aysu Duyan; Dağlı, Figen Şahin

doi:10.4274/balkanmedj.galenos.2019.2019.7.142

Cited by 38 publications

(50 citation statements)

References 40 publications

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“…However, poor emotional health of siblings of children with controlled asthma was not related to disease severity [41]. Moreover, what is worrying is that parents are sometimes unaware of the impact of their child's disease on their other children [42].…”

Section: Nature Of Relationship and Psychological Impactmentioning

confidence: 99%

Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Shah

Ali

Finlay

et al. 2021

Health Qual Life Outcomes

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Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

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Section: Nature Of Relationship and Psychological Impactmentioning

confidence: 99%

Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Shah

Ali

Finlay

et al. 2021

Health Qual Life Outcomes

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“…The incidence of psychological problems, such as poor social initiative problems, reluctance to participate in group activities, and internalizing problems such as anxiety, depression and social withdrawal was reported to be as high as 21.9% in children and adolescents with chronic illness ( 5 , 6 ). Meanwhile, childhood chronic illness has also been consistently reported to be correlated with decreased quality of life of family members and impaired family function ( 7 – 10 ).…”

Section: Introductionmentioning

confidence: 99%

Family Resilience, Parenting Styles and Psychosocial Adjustment of Children With Chronic Illness: A Cross-Sectional Study

Qiu

Pan

et al. 2021

Front. Psychiatry

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Objectives: To evaluate the level of parent-reported family resilience, parenting styles and psychosocial adjustment of children with chronic illness and to identify the relationships between family resilience, parenting styles and psychosocial adjustment in families with children with chronic illness.Methods: A cross-sectional study was conducted between June 2019 and August 2019. A total of 236 parents of children with chronic illness and 98 parents with healthy children were recruited from general hospitals by convenience sampling. A parent completed the Chinese Family Resilience Assessment Scale, the Parenting Rearing Patterns Questionnaire and the Strengths and Difficulties Questionnaire. Family resilience, parenting styles, and psychosocial adjustment of children with chronic illness were compared with those of healthy children. Structural Equation Modeling (SEM) was performed to explore the mediation effect of parenting styles between family resilience and psychosocial adjustment among children with chronic illness.Results: Parents of children with chronic illness reported lower level of family resilience and authoritative parenting, but more peer relationship problems compared to parents of healthy children. SEM showed that authoritative parenting fully mediated the relationship between family resilience and psychosocial adjustment of children with chronic illness.Conclusion: Childhood chronic illness reduces family resilience, authoritative parenting and children's psychosocial adjustment, but authoritative parenting mediated these effects, so authoritative parenting may be important for family resilience in families of children with chronic illness. Pediatric clinicians and nurses should provide family-centered interventions, as well as parenting training, to improve children's psychosocial outcomes.

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“…Although our study was not designed to identify which specific aspects contributed most to sibling mood, a majority of all groups identified disruptions in home life, fear that the sibling might die, and concerns about the burdens of responsibility and financial strain. These concerns align with stressors reported to adversely affect family psychological health when caring for children with DEEs, generalized epilepsies, and chronic illnesses in general [14,25,26]. Taken together, these stressors may lead siblings growing up in a DEE household to experience feelings of depressed mood, anxiety, and/or social isolation [10,25,27].…”

Section: Discussionmentioning

confidence: 80%

Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies

Bailey

Schwartz

Dixon‐Salazar

et al. 2020

Epilepsy & Behavior

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Caring for children with developmental and epileptic encephalopathies (DEEs) places substantial demands on the entire family unit, including siblings. The Sibling Voices Survey assesses parental and sibling responses to questions designed to assess how children adapt to growing up with siblings with DEE. Methods: Participants responded to 1 of 4 online, age-and role-specific surveys (9-12, 13-17, and ≥18-year-old [adult] siblings; parents responded with perceptions of their unaffected child's/children's feelings). Survey questions used visual analog scales, categorical responses, and free-form responses. Results: Survey submissions (n = 248) included 128 parents and 120 siblings (9-to 12-year-olds, n = 24; 13-to 17-year-olds, n = 17; adults, n = 79). All groups identified home life as the most substantially affected area of their lives (71%-84%), compared with interactions at school (21%-32%) or with friends (28%-42%). The most difficult aspect across all sibling groups was "feeling worried/scared when their sibling has seizures" (58%-70%). Feeling "overly responsible" for the sibling was reported by most adult siblings (63%), 41% of 13-to 17-yearold siblings, and 34% of parents. Siblings reported more symptoms of depressed mood (e.g., "down/unhappy," 47%-62%) than their parents perceived them feeling (25%). Most sibling groups (29%-49%) reported more symptoms of anxious mood (e.g., "nightmares/bad dreams") than parents perceived (15%). Identification of potential helpful coping mechanisms varied by age group. Most respondents (68%-76%) reported positive aspects, including greater maturity and compassion. Significance: The Sibling Voices Survey provided important insights into how DEE impacts siblings psychologically and socially. This study highlights the need for increased awareness among parents and healthcare providers to monitor siblings for potential signs of depressed or anxious mood, to provide proper support, and to decrease potential for negative long-term consequences.

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Quality-of-Life Evaluation of Healthy Siblings of Children with Chronic Illness

Cited by 38 publications

References 40 publications

Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Family Resilience, Parenting Styles and Psychosocial Adjustment of Children With Chronic Illness: A Cross-Sectional Study

Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies

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