For vulnerable patient populations, such as children with medical complexity (CMC), the patient journey is fraught with challenges. By providing a range of perspectives including clinicians, a family caregiver, and Human Factors/Ergonomics (HF/E) experts, the present panel will describe the unique opportunities for HF/E to design jointly optimized systems for CMC and their family caregivers, including an explication of some of the specific challenges and complexities related to studying the work of and designing systems for this population. We will also highlight the ways in which HF/E could help in the design of solutions to improve outcomes for families.
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References
1.
AntonucciT. C.AkiyamaH. (1987). SocialNetworks in Adult Life and a Preliminary Examination of the Convoy Model. Journal of Gerontology, 42(5), 519-527.
2.
BerryJ. G.AgrawalR.KuoD. Z.CohenE.RiskoW.HallM.. . . SrivastavaR. (2011). Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity. J Pediatr, 159(2), 284-290. doi:10.1016/j.jpeds.2011.02.002
3.
BerryJ. G.HallM.NeffJ.GoodmanD.CohenE.AgrawalR.. . .FeudtnerC. (2014). Children with medical complexity and Medicaid: spending and cost savings. Health Aff (Millwood), 33(12), 2199-2206. doi:10.1377/hlthaff.2014.0828
4.
BidwellJ. T.VelloneE.LyonsK. S.D'AgostinoF.RiegelB.Juárez-VelaR.HiattS. O.AlvaroR.LeeC. S. (2015). Determinants of Heart Failure Self-Care Maintenance and Management in Patients and Caregivers: A Dyadic Analysis. Research in nursing & health, 38(5), 392–402. https://doi.org/10.1002/nur.21675
5.
BlackburnE. H.EpelE. S. (2012). Telomeres and adversity: Too toxic to ignore. Nature, 490(7419), 169-171. doi:10.1038/490169a
6.
CarayonP.WooldridgeA.HoonakkerP.HundtA. S.KellyM. M. (2020). SEIPS 3.0: Human-centered design of the patient journey for patient safety. Applied ergonomics, 84, 103033. https://doi.org/10.1016/j.apergo.2019.103033
7.
CohenE.BerryJ. G.CamachoX.AndersonG.WodchisW.GuttmannA. (2012). Patterns and costs of health care use of children with medical complexity. Pediatrics, 130(6), e1463-1470. doi:10.1542/peds.2012-0175
8.
CohenE.Horvath-PuhoE.RayJ. G.PedersenL.AdlerN.OrdingA. G.. . . Toft SorensenH. (2016). Association Between the Birth of an Infant With Major Congenital Anomalies and Subsequent Risk of Mortality in Their Mothers. JAMA, 316(23), 2515-2524. doi:10.1001/jama.2016.18425
9.
CollerR. J.LernerC. F.EickhoffJ. C.KlitznerT. S.SklanskyD. J.EhlenbachM.ChungP. J. (2015). Medical Complexity among Children with Special Health Care Needs: A Two-Dimensional View. Health Serv Res. doi:10.1111/1475-6773.12416
10.
CollerR. J.NelsonB. B.KlitznerT. S.SaenzA. A.ShekelleP. G.LernerC. F.ChungP. J. (2017). Strategies to Reduce Hospitalizations of Children with Medical Complexity through Complex Care: Expert Perspectives. Acad Pediatr. doi:10.1016/j.acap.2017.01.006
11.
CollerR. J.NelsonB. B.SklanskyD. J.SaenzA. A.KlitznerT. S.LernerC. F.ChungP. J. (2014). Preventing Hospitalizations in Children With Medical Complexity: A Systematic Review. Pediatrics, 134(6), e1628-e1647. doi:10.1542/peds.2014-1956
12.
DesaiA. D.DurkinL. K.Jacob-FilesE. A.Mangione-SmithR. (2016). Caregiver Perceptions of Hospital to Home Transitions According to Medical Complexity: A Qualitative Study. Acad Pediatr, 16(2), 136-144. doi:10.1016/j.acap.2015.08.003
13.
FerroM. A.BoyleM. H. (2015). The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children. Journal of Abnormal Child Psychology, 43(1), 177–187. https://doi.org/10.1007/s10802-014-9893-6
14.
FlemingJ. W. (2004). Home health care for children who are technology dependent. New York, New York: Springer Pub Co.
15.
HoldenR. J.CornetV. P.ValdezR. S. (2020). Patient ergonomics: 10-year mapping review of patient-centered human factors. Applied ergonomics, 82, 102972.
16.
HoldenR. J.SchubertC. C.MickelsonR. S. (2015). The patient work system: an analysis of self-care performance barriers among elderly heart failure patients and their informal caregivers. Applied ergonomics, 47, 133-150.
17.
KuoD. Z.CohenE.AgrawalR.BerryJ. G.CaseyP. H. (2011). A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med, 165(11), 1020-1026. doi:10.1001/archpediatrics.2011.172
18.
LimM. L.YongB. Y. P.MarM. Q. M.AngS. Y.ChanM. M.LamM.. . .LopezV. (2018). Caring for patients on home enteral nutrition: Reported complications by home carers and perspectives of community nurses. J Clin Nurs, 27(13-14), 2825-2835. doi:10.1111/jocn.14347
19.
NackersA.EhlenbachM.KellyM. M.WernerN.WarnerG.CollerR. J. (2019). Encounters From Device Complications Among Children With Medical Complexity. Hosp Pediatr, 9(1), 6-15. doi:10.1542/hpeds.2018-0103
20.
NelsonB. B.CollerR. J.SaenzA. A.ChungP. J.KaplanA.LernerC. F.KlitznerT. S. (2016). How Avoidable are Hospitalizations for Children With Medical Complexity? Understanding Parent Perspectives. Acad Pediatr. doi:10.1016/j.acap.2016.04.009
21.
NelsonK. E.Lacombe-DuncanA.CohenE.NicholasD. B.RosellaL. C.GuttmannA.MahantS. (2015). Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review. Pediatrics, 136(1), e140-151. doi:10.1542/peds.2014-4162
22.
RainaP.O'DonnellM.RosenbaumP.BrehautJ.WalterS. D.RussellD.. . . WoodE. (2005). The health and well- being of caregivers of children with cerebral palsy. Pediatrics, 115(6), E626-E636. doi:10.1542/peds.2004-1689
23.
ShawlerC.EdwardJ.LingJ.CrawfordT. N.RayensM. K. (2018). Impact of Mother-Daughter Relationship on Hypertension Self-management and Quality of Life: Testing Dyadic Dynamics Using the Actor-Partner Interdependence Model. The Journal of cardiovascular nursing, 33(3), 232–238. https://doi.org/10.1097/JCN.0000000000000448
ThyenU.TerresN. M.YazdgerdiS. R.PerrinJ. M. (1998). Impact of long-term care of children assisted by technology on maternal health. J Dev Behav Pediatr, 19(4), 273-282. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/9717137
26.
ValdezR. S.BrennanP.F. (2015). Exploring patients' health information communication practices with social network members as a foundation for consumer health IT design. Int J Med Inform84(5), 363-374.
27.
ValdezR. S.LunsfordC.BaeJ.LetzkusL. C.Keim-MalpassJ. (2020). Self-Management Characterization for Families of Children With Medical Complexity and Their Social Networks: Protocol for a Qualitative Assessment. JMIR research protocols, 9(1), e14810. https://doi.org/10.2196/14810
28.
ValdezR. S.Zayas-CabanT. (2015). Developing hybrid macroergonomic methodologies: a systems foundation for consumer health IT design. 19th Trienial Congress of the International Ergonomics Association, Melbourne, Australia.
WernerN. E.JolliffA. F.CasperG.MartellT.PontoK. (2018). Home is where the head is: a distributed cognition account of personal health information management in the home among those with chronic illness. Ergonomics, 61(8), 1065-1078.
31.
WernerN. E.TongM.BorkenhagenA.HoldenR. J. (2019). Performance-shaping factors affecting older adults’ hospital-to-home transition success: a systems approach. The Gerontologist, 59(2), 303-314.
32.
World Health Organization. (2001). International classification of functioning, disability and health: ICF. Geneva: World Health Organization.
