Call to Action: Screening and Addressing Caregiver Mental Health Needs Within All Pediatric Medical Subspecialty Settings as Standard of Care

Ahmed A. Crabtree V. M. Sirrine E. Elliott A. Antoniotti N. Horn S. Turner E. , & Parris K. R. (2023). Development and implementation of a telemental health program for caregivers in a children’s hospital setting. Telemedicine Journal and e-Health. Advance online publication. 10.1089/tmj.2023.0004

American Psychological Association . (2021). Professional practice guidelines for evidence-based psychological practice in health care. https://www.apa.org/about/policy/evidence-based-psychological-practice-health-care.pdf

Barkhordarian A. Hacker B. , & Chiappelli F. (2011). Dissemination of evidence-based standards of care. Bioinformation, 7(6), 315–319. 10.6026/007/97320630007315

Benini F. Papadatou D. Bernadá M. Craig F. De Zen L. Downing J. Drake R. Friedrichsdorf S. Garros D. , & Giacomelli L. (2022). International standards for pediatric palliative care: From IMPaCCT to GO-PPaCS. Journal of Pain and Symptom Management, 63(5), e529–e543. 10.1016/j.jpainsymman.2021.12.031

Biel M. G. Tang M. H. , & Zuckerman B. (2020). Pediatric mental health care must be family mental health care. JAMA Pediatrics, 174(6), 519–520. 10.1001/jamapediatrics.2020.0065

Carbonell Á. Navarro-Pérez J. J. , & Mestre M. V. (2020). Challenges and barriers in mental healthcare systems and their impact on the family: A systematic integrative review. Health & Social Care in the Community, 28(5), 1366–1379. 10.1111/hsc.12968

Centers for Disease Control and Prevention (CDC), National Center for Injury Prevention and Control . (2000–2020). Nonfatal injury reports. https://wisqars.cdc.gov/nonfatal-reports

Children’s Hospital Association. (2020). https://www.childrenshospitals.org/

Children’s Wisconsin . (n.d.). Grief support. https://childrenswi.org/patients-and-families/milwaukee-campus/inpatient-visit/during-your-stay/hospital-programs-and-services/grief-support

Cohn L. N. Pechlivanoglou P. Lee Y. Mahant S. Orkin J. Marson S. , & Cohen E. (2020). Health outcomes of parents of children with chronic illness: A systematic review and meta-analysis. The Journal of Pediatrics, 218, 166–177.e2. 10.1016/j.jpeds.2019.10.068

Correa V. C. Lugo-Agudelo L. H. Aguirre-Acevedo D. C. Contreras J. A. P. Borrero A. M. P. Patiño-Lugo D. F. , & Valencia D. A. C. (2020). Individual, health system, and contextual barriers and facilitators for the implementation of clinical practice guidelines: A systematic metareview. Health Research Policy and Systems, 18(1), Article 74. 10.1186/s12961-020-00588-8

Cousino M. K. , & Hazen R. A. (2013). Parenting stress among caregivers of children with chronic illness: A systematic review. Journal of Pediatric Psychology, 38(8), 809–828. 10.1093/jpepsy/jst049

Elliott D. A. Corneau-Dia D. E. Turner E. Barnett B. , & Parris K. R. (2021). Caregiver mental health in pediatric oncology: A three-tiered model of supports. Psycho-oncology, 30(2), 267–270. 10.1002/pon.5567

Ford K. Hughes K. Hardcastle K. Di Lemma L. C. Davies A. R. Edwards S. , & Bellis M. A. (2019). The evidence base for routine enquiry into adverse childhood experiences: A scoping review. Child Abuse & Neglect, 91, 131–146. 10.1016/j.chiabu.2019.03.007

Garg A. Boynton-Jarrett R. , & Dworkin P. H. (2016). Avoiding the unintended consequences of screening for social determinants of health. Journal of the American Medical Association, 316(8), 813–814. 10.1001/jama.2016.9282

Hoover C. G. Coller R. J. Houtrow A. Harris D. Agrawal R. , & Turchi R. (2022). Understanding caregiving and caregivers: Supporting children and youth with special health care needs at home. Academic Pediatrics, 22(2S), S14–S21. 10.1016/j.acap.2021.10.007

Jensen E. J. Wieling E. , & Mendenhall T. (2020). A phenomenological study of clinicians’ perspectives on barriers to rural mental health care. Journal of Rural Mental Health, 44(1), 51–61. 10.1037/rmh0000125

Kahhan N. A. , & Junger K. W. (2021). Introduction to the special interest issue on parent/guardian interventions in pediatric psychology: The role of the pediatric psychologist working with caregivers as the target of intervention. Clinical Practice in Pediatric Psychology, 9(2), 107–111. 10.1037/cpp0000407

Kapke T. L. Karst J. LiaBraaten B. Zhang J. Yan K. Barbeau J. , & Hainsworth K. R. (2023). Family caregiver acceptability of assessing caregiver adverse childhood experiences (ACEs) and distress in pediatric specialty care. Children, 10(2), Article 382. 10.3390/children10020382

Kazak A. E. (2006). Pediatric Psychosocial Preventative Health Model (PPPHM): Research, practice, and collaboration in pediatric family systems medicine. Families, Systems, & Health, 24(4), 381–395. 10.1037/1091-7527.24.4.381

Kazak A. E. Hwang W.-T. Chen F. F. Askins M. A. Carlson O. Argueta-Ortiz F. , & Barakat L. P. (2018). Screening for family psychosocial risk in pediatric cancer: Validation of the Psychosocial Assessment Tool (PAT) Version 3. Journal of Pediatric Psychology, 43(7), 737–748. 10.1093/jpepsy/jsy012

Kearney J. A. Salley C. G. , & Muriel A. C. (2015). Standards of psychosocial care for parents of children with cancer. Pediatric Blood & Cancer, 62(Suppl 5), S632–S683. 10.1002/pbc.25761

Kinebrew V. R. Lawson C. Rouse L. Williams T. Schuler C. L. , & Lannon C. (2023). The impact of being Black while living with a chronic condition: Inpatient perspectives. Journal of Hospital Medicine, 18(9), 856–859. 10.1002/jhm.13059

Kinney E. D. (2004). The origins and promise of medical standards of care. American Medical Association Journal of Ethics, 6(12), 574–576. 10.1001/virtualmentor.2004.6.12.mhst1-0412

Law E. Fisher E. Eccleston C. , & Palermo T. M. (2021). Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database of Systematic Reviews, 2021(6), Article CD009660. 10.1002/14651858.CD009660.pub4

Maragakis A. Ham H. Bruni T. P. Byrd M. R. LaLonde L. Neenan A. Caserta A. , & Turnier L. (2021). Promoting a holistic family care model: Ethical and practical considerations for treating adult caregivers in integrated pediatric settings. Clinical Practice in Pediatric Psychology, 9(2), 209–218. 10.1037/cpp0000390

McTate E. Szulczewski L. Joffe N. E. Chan S. F. , & Pai A. L. (2021). Implementation of the psychosocial standards for caregiver mental health within a pediatric hematology/oncology program. Journal of Clinical Psychology in Medical Settings, 28(2), 323–330. 10.1007/s10880-020-09719-3

Moffett P. , & Moore G. (2011). The standard of care: Legal history and definitions: The bad and good news. Western Journal of Emergency Medicine, 12(1), 109–112.

Molitor S. J. , & LeNoble J. (2023). Integrating parent mental health assessment into pediatric psychology: Applying an ethics-based model. Clinical Practice in Pediatric Psychology, 11(3), 350–356. 10.1037/cpp0000457

Muschol N. Giugliani R. Jones S. A. Muenzer J. Smith N. J. Whitley C. B. Donnell M. Drake E. Elvidge K. , & Melton L. (2022). Sanfilippo syndrome: Consensus guidelines for clinical care. Orphanet Journal of Rare Diseases, 17(1), Article 391. 10.1186/s13023-022-02484-6

National Survey of Children’s Health . (2018–2019). Number of current or lifelong health conditions, nationwide, age in 3 groups. https://www.childhealthdata.org/

Patten J. T. Hoag J. A. Galtieri L. R. Canavera K. , & Thompson A. L. (2022). Suicidaility in bereaved parents within pediatric institutions: Recommendations for managing ethical challenges. Clinical Practice in Pediatric Psychology, 10(3), 346–355. 10.1037/cpp0000448

Perrin E. C. (1998). Ethical questions about screening. Journal of Developmental and Behavioral Pediatrics, 19(5), 350–352. 10.1097/00004703-199810000-00006

Pickles D. M. Lihn S. L. Boat T. F. , & Lannon C. (2020). A roadmap to emotional health for children and families with chronic pediatric conditions. Pediatrics, 145(2), Article e20191324. 10.1542/peds.2019-1324

Pinquart M. (2018). Parenting stress in caregivers of children with chronic physical condition—A meta-analysis. Stress and Health, 34(2), 197–207. 10.1002/smi.2780

Rosenberg A. R. Bradford M. C. Junkins C. C. Taylor M. Zhou C. Sherr N. Kross E. Curtis J. R. , & Joyce P. (2019). Effect of the promoting resilience in stress management intervention for parents of children with cancer (PRISM-P): A randomized clinical trial. JAMA Network Open, 2(9), Article e1911578. 10.1001/jamanetworkopen.2019.11578

Rowan K. McAlpine D. D. , & Blewett L. A. (2013). Access and cost barriers to mental health care, by insurance status, 1999–2010. Health Affairs, 32(10), 1723–1730. 10.1377/hlthaff.2013.0133

Sahler O. J. Z. Dolgin M. J. Phipps S. Fairclough D. L. Askins M. A. Katz E. R. Noll R. B. , & Butler R. W. (2013). Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: Results of a multisite randomized clinical trial. Journal of Clinical Oncology, 31(10), 1329–1335. 10.1200/JCO.2011.39.1870

Salley C. G. Axelrad M. Fischer E. , & Steuer K. B. (2023). But parents need help! Pathways to caregiver mental health care in pediatric hospital settings. Palliative & Supportive Care, 21(2), 347–353. 10.1017/S1478951522001353

Scialla M. A. Canter K. S. Chen F. F. Kolb E. A. Sandler E. Wiener L. , & Kazak A. E. (2018). Delivery of care consistent with the psychosocial standards in pediatric cancer: Current practices in the United States. Pediatric Blood & Cancer, 65(3), Article e26869. 10.1002/pbc.26869

Smith H. (2005). A model for validating an expert’s opinion in medical negligence cases. Journal of Legal Medicine, 26(2), 207–231. 10.1080/01947640590949931

Thompson A. , & Connolly M. (2020). Collaborating with psychosocial colleagues in the hospital setting. In Carter B. D. & Kullgren K. A. (Eds.), Clinical handbook of psychological consultation in pediatric medical settings (1st ed.). Springer.

Vonneilich N. Lüdecke D. , & Kofahl C. (2016). The impact of care on family and health-related quality of life of parents with chronically ill and disabled children. Disability and Rehabilitation, 38(8), 761–767. 10.3109/09638288.2015.1060267

Wiener L. Kazak A. E. Noll R. B. Patenaude A. F. , & Kupst M. J. (2015). Interdisciplinary collaboration in standards of psychosocial care. Pediatric Blood & Cancer, 62(S5), Article S425. 10.1002/pbc.25718

Young M. Voll M. Noll R. B. Fairclough D. L. , & Flanagan-Priore C. (2021). Bright IDEAS problem-solving skills training for caregivers of children with sickle cell disease: A two-site pilot feasibility trial. Pediatric Blood & Cancer, 68(4), Article e28822. 10.1002/pbc.28822