A Roadmap to Emotional Health for Children and Families With Chronic Pediatric Conditions

Pickles, Diane; Lihn, Stacey; Boat, Thomas F.; Lannon, Carole

doi:10.1542/peds.2019-1324

Cited by 39 publications

(34 citation statements)

References 9 publications

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“…Understanding that family wellness will be the foundation for the child's healthy behavioral development, medical care routines, and self‐management skills should provide a convincing rationale for all team members. Resources for providers offer ways to encourage conversation with families in a validating manner, raising awareness of total family health 7 . Ensuring that wellness is specifically assessed and responded to in real time at diagnosis and at each visit, as appropriate, will model for families the importance of this dimension of CF care and provide the experience of getting support for psychosocial needs.…”

Section: Resultsmentioning

confidence: 99%

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Promoting emotional wellness in children with cystic fibrosis, Part I: Child and family resilience

Prieur

Christon

Mueller

et al. 2021

Pediatric Pulmonology

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Attention should be given to individual and family well‐being from a child's first interaction with the medical team and continuing throughout development, especially for families who experience chronic illnesses, such as cystic fibrosis (CF). While much attention has been given to the mental health of people with CF 12 years and older, this paper explores various areas for CF teams to assess and provide additional resources during the first 12 years of a child's life to promote child and family wellness. In this paper, we discuss parental mental health, social determinants of health, adherence/self‐care, nutrition, attention to family lifestyle factors, engagement with school and peers, and modulator therapy for this age group of people with CF. This is the first of two companion papers which examines emotional wellness of children during the early years. The second paper examines mental health assessment and intervention for children under 12. Both encourage teams to strive to promote optimal child and family emotional health and wellness, emphasizing holistic health promotion and prevention, early identification, and intervention.

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Section: Resultsmentioning

confidence: 99%

“…Too often, family needs go undetected, with missed opportunities for support. Potential missed opportunities may occur because of stigma about asking for help, cultural factors, families not knowing what they can ask and receive help for, and negative past experiences 7 …”

Section: Introductionmentioning

confidence: 99%

Promoting emotional wellness in children with cystic fibrosis, Part I: Child and family resilience

Prieur

Christon

Mueller

et al. 2021

Pediatric Pulmonology

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“…While studies of survival and core disease outcomes demonstrate improvement over time, fewer studies have assessed emotional health outcomes of patients with JM. Emotional health has been defined as the interplay of stress and coping during child development, with some children thriving and maintaining emotional wellness and others developing persistent psychosocial comorbidities like depression and anxiety (4). Early evidence suggests that patients with JM experience a rollercoaster of emotional distress related to disease manifestations, fear of flares, and medication side effects, with up to 40% of patients with JM needing psychological evaluation (5,6).…”

Section: Introductionmentioning

confidence: 99%

Parent Perspectives on Addressing Emotional Health for Children and Young Adults With Juvenile Myositis

Ardalan

Adeyemi

Wahezi

et al. 2020

Arthritis Care & Research

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Objective. To assess parent perspectives regarding the emotional health impact of juvenile myositis (JM) on patients and families, and to assess preferences for emotional health screening and interventions. Methods. Parents of children and young adults with JM were purposively sampled for participation in focus groups at the Cure JM Foundation National Family Conference in 2018. Groups were stratified by patient age group (6-12, 13-17, and 18-21 years), and conversations were audiorecorded, transcribed verbatim, and co-coded via content analysis, with subanalysis by age group. A brief survey assessed preferences for specific emotional health interventions. Results. Forty-five parents participated in 6 focus groups. Themes emerged within 2 domains: emotional challenges, and screening and interventions. Themes for emotional challenges comprised the impact of JM on: 1) patient emotional health, particularly depression and anxiety; 2) parent emotional health characterized by sadness, grief, anger, guilt, and anxiety; and 3) family dynamics, including significant sibling distress. Subanalysis revealed similar themes across age groups, but the theme of resiliency emerged specifically for young adults. Themes for emotional health screening and interventions indicated potential issues with patient transparency, several barriers to resources, the facilitator role of rheumatology providers, and preferred intervention modalities of online and in-person resources, with survey responses most strongly supporting child/parent counseling and peer support groups. Conclusion. JM is associated with intense patient and family distress, although resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.

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“…5 The opportunity to include B/MH training in the educational curriculum of subspecialty fellows aligns with current ABP initiatives focused on supporting the emotional health of children with chronic illness and their families. 5,6 Patients with chronic illness are often seeing their subspecialists more frequently than their primary care pediatricians and have an associated higher risk for mental health issues than the average population. [5][6][7] The involvement of regulatory agencies, such as the Accreditation Council for Graduate Medical Education and ABP, to revise specialty and subspecialty training requirements to include additional B/MH experiences across all disciplines could greatly support these ongoing efforts.…”

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confidence: 99%

“…5,6 Patients with chronic illness are often seeing their subspecialists more frequently than their primary care pediatricians and have an associated higher risk for mental health issues than the average population. [5][6][7] The involvement of regulatory agencies, such as the Accreditation Council for Graduate Medical Education and ABP, to revise specialty and subspecialty training requirements to include additional B/MH experiences across all disciplines could greatly support these ongoing efforts. In this survey, smaller programs fared as well, if not better, in achieving resident competence in both the assessment and treatment of common B/MH conditions.…”

mentioning

confidence: 99%

Addressing the Behavioral and Mental Health Educational Gap in Pediatric Residency Training

2020

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A Roadmap to Emotional Health for Children and Families With Chronic Pediatric Conditions

Cited by 39 publications

References 9 publications

Promoting emotional wellness in children with cystic fibrosis, Part I: Child and family resilience

Promoting emotional wellness in children with cystic fibrosis, Part I: Child and family resilience

Parent Perspectives on Addressing Emotional Health for Children and Young Adults With Juvenile Myositis

Addressing the Behavioral and Mental Health Educational Gap in Pediatric Residency Training

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