Dataset Information

Association Between Children With Life-Threatening Conditions and Their Parents' and Siblings' Mental and Physical Health.

ABSTRACT:

Importance

Despite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members.

Objectives

To examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions.

Design, setting, and participants

This retrospective cohort study included US families with commercial insurance coverage from a single carrier. Children who had 1 of 4 LTCs (substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe neurologic impairment) were identified by a diagnosis in their insurance claim data between July 1, 2015, and June 30, 2016. Each case child and their family was matched with up to 4 control children and their families based on the age of the case and control children. Data were analyzed between August 2020 and March 2021.

Exposures

Having a child or sibling with substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe and progressive neurologic impairment.

Main outcomes

Rates of occurrence of health care encounters, physical and mental health diagnoses, and physical and mental health medication prescriptions, identified from insurance claims data, were compared between case and control families using a multivariable negative binomial regression model. The statistical analysis adjusted for observed differences between case and control families and accounted for clustering at the family level.

Results

The study included 25 528 children (6909 case children [27.1%] and 18 619 control children [72.9%]; median age, 6.0 years [IQR, 1-13 years]; 13 294 [52.1%] male), 43 357 parents (11 586 case parents [26.7%] and 31 771 control parents [73.3%]; mean [SD] age, 40.4 [8.1] years; 22 318 [51.5%] female), and 25 706 siblings (7664 case siblings [29.8%] and 18 042 control siblings [70.2%]; mean [SD] age, 12.1 [6.5] years; 13 114 [51.0%] male). Overall, case mothers had higher rates of the composite outcome of health care encounters, diagnoses, and prescriptions compared with control mothers (incident rate ratio [IRR], 1.61; 95% CI, 1.54-1.68), as did case fathers compared with control fathers (IRR, 1.55; 95% CI, 1.46-1.64). Sisters of children with LTCs had higher rates of the composite outcome compared with sisters of children without LTCs (IRR, 1.68; 95% CI, 1.55-1.82), as did brothers of children with LTCs compared with brothers of children without LTCs (IRR, 1.70; 95% CI, 1.56-1.85).

Conclusions and relevance

In this cohort study, mothers, fathers, sisters, and brothers who had a child or sibling with 1 of 4 types of LTCs had higher rates of health care encounters, diagnoses, and medication prescriptions compared with families who did not have a child with that condition. The findings suggest that family members of children with LTCs may experience poorer mental and physical health outcomes. Interventions for parents and siblings of children with LTCs that aim to safeguard their mental and physical well-being appear to be warranted.

SUBMITTER: Feudtner C

PROVIDER: S-EPMC8689391 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:IMPORTANCE:Play is essential to children and provides opportunities to promote their health and well-being. Children living with life-threatening and life-limiting conditions experience deprivation in play. OBJECTIVE:To conduct a scoping review of studies that examined play of children with a life-threatening or life-limiting condition to explore their play characteristics and possible factors influencing their participation in play. DATA SOURCES:A search of literature published between 1990 and 2017 was conducted in the health, social care, and built-environment fields. The scoping review included multiple searches in electronic databases, a gray literature search, and manual searches of relevant journals and reference lists of included articles. STUDY SELECTION AND DATA COLLECTION:Defined criteria were used to select articles describing studies that examined the daily play of children ages 5-11 yr with life-threatening and life-limiting conditions; articles that focused on play as therapy or that used parents' accounts of a service were excluded. The identified articles were critically appraised with the Critical Appraisal Skills Programme and the Joanna Briggs Institute Critical Appraisal Tools. FINDINGS:Thirteen articles were reviewed. The findings indicate that children's play is influenced by their health conditions and play opportunities and by the limited availability of appropriate play equipment and spaces allowing play and social interaction. CONCLUSIONS AND RELEVANCE:Available appropriate play opportunities need to be maximized for children living with life-threatening and life-limiting conditions. This goal can be achieved by understanding and considering the needs of these children and by facilitating environmental enablers and limiting barriers. WHAT THIS ARTICLE ADDS:Promoting the participation in play of children who live with life-threatening and life-limiting conditions is important to their health and well-being and can be achieved by targeting the cultural, social, and physical environmental factors that shape the children's play.

Project description:ImportanceIt is clear that mental disorders in treatment settings are associated with a higher incidence of chronic physical conditions, but whether this is true of mental disorders in the community, and how generalized (across a range of physical health outcomes) these associations are, is less clear. This information has important implications for mental health care and the primary prevention of chronic physical disease.ObjectiveTo investigate associations of 16 temporally prior DSM-IV mental disorders with the subsequent onset or diagnosis of 10 chronic physical conditions.Design, setting, and participantsEighteen face-to-face, cross-sectional household surveys of community-dwelling adults were conducted in 17 countries (47,609 individuals; 2,032,942 person-years) from January 1, 2001, to December 31, 2011. The Composite International Diagnostic Interview was used to retrospectively assess the lifetime prevalence and age at onset of DSM-IV-identified mental disorders. Data analysis was performed from January 3, 2012, to September 30, 2015.Main outcomes and measuresLifetime history of physical conditions was ascertained via self-report of physician's diagnosis and year of onset or diagnosis. Survival analyses estimated the associations of temporally prior first onset of mental disorders with subsequent onset or diagnosis of physical conditions.ResultsMost associations between 16 mental disorders and subsequent onset or diagnosis of 10 physical conditions were statistically significant, with odds ratios (ORs) (95% CIs) ranging from 1.2 (1.0-1.5) to 3.6 (2.0-6.6). The associations were attenuated after adjustment for mental disorder comorbidity, but mood, anxiety, substance use, and impulse control disorders remained significantly associated with onset of between 7 and all 10 of the physical conditions (ORs [95% CIs] from 1.2 [1.1-1.3] to 2.0 [1.4-2.8]). An increasing number of mental disorders experienced over the life course was significantly associated with increasing odds of onset or diagnosis of all 10 types of physical conditions, with ORs (95% CIs) for 1 mental disorder ranging from 1.3 (1.1-1.6) to 1.8 (1.4-2.2) and ORs (95% CIs) for 5 or more mental disorders ranging from 1.9 (1.4-2.7) to 4.0 (2.5-6.5). In population-attributable risk estimates, specific mental disorders were associated with 1.5% to 13.3% of physical condition onsets.Conclusions and relevanceThese findings suggest that mental disorders of all kinds are associated with an increased risk of onset of a wide range of chronic physical conditions. Current efforts to improve the physical health of individuals with mental disorders may be too narrowly focused on the small group with the most severe mental disorders. Interventions aimed at the primary prevention of chronic physical diseases should optimally be integrated into treatment of all mental disorders in primary and secondary care from early in the disorder course.

Project description:ObjectiveThis is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.Participants and settingA constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore.ResultsQualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation).ConclusionEngaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.

Project description:BackgroundThe quantity-quality trade-off theory indicates that an increase in siblings might decrease a child's well-being, but little is known about the impacts of sibling number on children's oral health-related quality of life (OHRQoL). This study aims to investigate the effects of presence of siblings on children's OHRQoL, and to further test whether there is an interaction effect between siblings' presence and locations on children's OHRQoL.MethodsData were obtained from an oral-health survey of 12-year-old children in Beijing, China, which was a part of the 4th National Oral Health Survey in the Mainland of China (2015-2016). This study included 2158 children data for analysis. OHRQoL was assessed by the child's Oral Impacts on Daily Performance (OIDP). OIDP prevalence served as an indicator of OHRQoL. Children with and without siblings were recorded as non-single and single children, respectively. Dental variables, including active caries, gingival bleeding, and calculus, were reported. A logistic regression model was applied to investigate the association of siblings' presence and OIDP prevalence. A synergy index was used to assess the possible interaction effect between siblings' presence and location on OIDP prevalence.ResultsSixty percent of Chinese children reported suffering OIDP in the previous six months. OIDP prevalence for non-single and single children were 68.3% and 56.9%, respectively. The adjusted odds ratio (OR) of OIDP for non-single children was 1.31 (95% CI: 1.05, 1.63), and the adjusted OR of OIDP for non-single and rural children was 2.03 (95% CI: 1.47, 2.81). The synergy index between siblings' presence and location on OIDP was 2.18 (85% CI: 1.30, 3.67), which indicates that an excessive risk increase for OIDP was observed among non-single and rural children.ConclusionsChildren with siblings are more likely to report OIDP and have lower OHRQoL, especially those from rural areas. These findings indicate that oral-health interventions should be given priority for non-single and rural children.

Project description:ObjectivesMethodologically, to assess the feasibility of participant recruitment and retention, as well as missing data in studying mental disorder among children newly diagnosed with chronic physical conditions (ie, multimorbidity). Substantively, to examine the prevalence of multimorbidity, identify sociodemographic correlates and model the influence of multimorbidity on changes in child quality of life and parental psychosocial outcomes over a 6-month follow-up.DesignProspective pilot study.SettingTwo children's tertiary-care hospitals.ParticipantsChildren aged 6-16 years diagnosed in the past 6?months with one of the following: asthma, diabetes, epilepsy, food allergy or juvenile arthritis, and their parents.Outcome measuresResponse, participation and retention rates. Child mental disorder using the Mini International Neuropsychiatric Interview at baseline and 6?months. Child quality of life, parental symptoms of stress, anxiety and depression, and family functioning. All outcomes were parent reported.ResultsResponse, participation and retention rates were 90%, 83% and 88%, respectively. Of the 50 children enrolled in the study, the prevalence of multimorbidity was 58% at baseline and 42% at 6?months. No sociodemographic characteristics were associated with multimorbidity. Multimorbidity at baseline was associated with declines over 6?months in the following quality of life domains: physical well-being, ?=-4.82 (-8.47, -1.17); psychological well-being, ?=-4.10 (-7.62, -0.58) and school environment, ?=-4.17 (-8.18, -0.16). There was no association with parental psychosocial outcomes over time.ConclusionsPreliminary evidence suggests that mental disorder in children with a physical condition is very common and has a negative impact on quality of life over time. Based on the strong response rate and minimal attrition, our approach to study child multimorbidity appears feasible and suggests that multimorbidity is an important concern for families. Methodological and substantive findings from this pilot study have been used to implement a larger, more definitive study of child multimorbidity, which should lead to important clinical implications.

Project description:IntroductionMental disorders affect 1 in 5 children having consequences for both the child and their family. Indeed, the siblings of these children are not insulated from these consequences and may experience elevated levels of psychological distress, placing them at increased risk for developing mental disorders. This protocol describes the methodology for a scoping review that will examine how mental disorders in children impact the mental health of their sibling(s). Further, we aim to examine the role of sex, gender, birth order, age of each child, and familial factors (e.g., parent mental illness, family structure), in sibling mental health. The proposed review will also identify resources that aim to support the needs of siblings of children with mental disorders. Taken together, this proposed review aims to take a fundamental step towards determining intervention targets to reduce the transmission of risk between siblings.AimThe proposed scoping review aims to address the following questions: i) how do mental disorders (in children <18 years of age) impact the mental health of their sibling(s) (also <18 years of age)? ii) Can we identify resources designed to address the needs of siblings of children with mental disorders?MethodsWe will conduct the proposed scoping review in keeping with the six-stage Arksey and O'Malley Framework and the scoping review methodology provided by the Joanna Briggs Institute. In section i) we outline our research questions. In section ii) we describe our process for identifying studies that examine the mental health of siblings of a child with a mental disorder and studies that provide evidence on resources directed specifically at these siblings. We will search peer-review and grey literature published between 2011 and 2022 from OVID MEDLINE, OVID EMBASE, CINAHL Complete, Proquest Nursing and Allied Health, PsycINFO (via APA platform), Proquest Sociology Collection and Web of Science Core Collection and Proquest Theses and Dissertations. Section iii) describes our process for selecting relevant studies. In sections iv and v, we describe our methods for charting and summarizing relevant data. Finally, in section vi) we describe our integrative knowledge translation plan that aims to include knowledge users in interpretating and translating evidence gathered from the proposed review.