Objective: Parents of children with medical complexity (CMC) experience stressors related to caregiving, navigating the healthcare system, and managing their own well-being. There is a dearth of research examining parental coping strategies used in response to these challenges. Informed by the revised Transactional Model of Coping, the current study aimed to characterize coping among a sample of parents of CMC. Methods: Twenty parental caregivers of CMC served by the Complex Care Program at a large midwestern pediatric hospital participated in one-hour semi-structured qualitative interviews. Results: Participants described a breadth of ways of coping with challenges in their lives, including problem-focused and emotion-focused coping strategies. They also described a range of meaning-making strategies, represented by themes celebration of child, maintaining a commitment to caregiving, striving to be a “good parent,” and recognizing gains from caregiving experiences.Conclusions: Parents of CMC described coping with their challenges in diverse ways, including using many meaning-making strategies. Future research should investigate coping strategies more systematically with representative samples to enable culturally informed intervention development to support parent and family well-being among those who care for CMC.
Implications for Impact Statement
This qualitative study identifies emotion-focused, problem-focused, and meaning-making strategies employed by parents of children with medical complexity. Findings inform both advocacy (i.e., policy change) and clinical care efforts to improve the well-being of families who care for children with medical complexity.
AsarnowJ. R.KolkoD. J.MirandaJ.KazakA. E. (2017). The pediatric patient-centered medical home: Innovative models for improving behavioral health. American Psychologist, 72(1), 13–27. https://doi.org/10.1037/a0040411
2.
BallyJ. M. G.SmithN. R.HoltslanderL.DuncanV.Hodgson-VidenH.MpofuC.ZimmerM. (2018). A metasynthesis: Uncovering what is known about the experiences of families with children who have life-limiting and life-threatening illnesses. Journal of Pediatric Nursing, 38, 88–98. https://doi.org/10.1016/j.pedn.2017.11.004
3.
BaumL. S. (2004). Internet parent support groups for primary caregivers of a child with special health care needs. Pediatric Nursing, 30(5), 381–401.
4.
BerryJ. G.HallM.CohenE.O’NeillM.FeudtnerC. (2016). Ways to identify children with medical complexity and the importance of why. Journal of Pediatrics, 167(2), 229–237. https://doi.org/10.1016/j.jpeds.2015.04.068
5.
BiggsA.BroughP.DrummondS. (2017). Lazarus and Folkman’s psychological stress and coping theory. The Handbook of Stress and Health, 349–364. https://doi.org/10.1002/9781118993811.CH21
6.
BirtL.ScottS.CaversD.CampbellC.WalterF.UkL. B. A. (2016). Member checking: A tool to enhance trustworthiness or merely a nod to validation?Qualitative Health Research, 26(13), 1802–1811. https://doi.org/10.1177/1049732316654870
7.
BlumR. W. M.GarellD.HodgmanC. H.JorissenT. W.OkinowN. A.OrrD. P.SlapG. B. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the society for adolescent medicine. Journal of Adolescent Health, 14(7), 570–576. https://doi.org/10.1016/1054-139x(93)90143-d
8.
BogetzJ. F.TrowbridgeA.LewisH.ShipmanK. J.JonasD.HauerJ.RosenbergA. R. (2021). Parents are the experts: A qualitative study of the experiences of parents of children with severe neurological impairment during decision-making. Journal of Pain and Symptom Management, 62(6), 1117–1125. https://doi.org/10.1016/j.jpainsymman.2021.06.011
9.
Bueno-NotivolJ.Gracia-GarcíaP.OlayaB.LasherasI.López-AntónR.SantabárbaraJ. (2021). Prevalence of depression during the COVID-19 outbreak: A meta-analysis of community-based studies. International Journal of Clinical and Health Psychology: IJCHP, 21(1), 100196. https://doi.org/10.1016/J.IJCHP.2020.07.007
10.
BurnsK. H.CaseyP. H.LyleR. E.BirdT. M.FussellJ. J.RobbinsJ. M. (2010). Increasing prevalence of medically complex children in US hospitals. Pediatrics, 126(4), 638–646. https://doi.org/10.1542/peds.2009-1658
11.
CarnevaleF. A.AlexanderE.DavisM.RennickJ.TroiniR. (2006). Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics, 117(1), e48–e60. https://doi.org/10.1542/peds.2005-0789
12.
ChanY. H.LimC. Z.-R.BautistaD.MalhotraR.ØstbyeT. (2019). The health and well-being of caregivers of technologically dependent children. Global Pediatric Health, 6, 2333794X18823000. https://doi.org/10.1177/2333794x18823000
13.
CheungW. K. H.LeeR. L. T. (2012). Children and adolescents living with atopic eczema: An interpretive phenomenological study with Chinese mothers. Journal of Advanced Nursing, 68(10), 2247–2255. https://doi.org/10.1111/j.1365-2648.2011.05915.x
14.
CohenE.KuoD. Z.AgrawalR.BerryJ. G.BhagatS. K. M.SimonT. D.SrivastavaR. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538. https://doi.org/10.1542/peds.2010-0910
15.
CousinoM. K.HazenR. A. (2013). Parenting stress among caregivers of children with chronic illness: A systematic review. Journal of Pediatric Psychology, 38(8), 809–828. https://doi.org/10.1093/jpepsy/jst049
16.
CraigF.SavinoR.ScodittiS.LucarelliE.FanizzaI.de RinaldisM.GennaroL.SimoneM.RussoL.TrabaccaA. (2019). Coping, stress and negative psychological outcomes in parents of children admitted to a pediatric neurorehabilitation care unit. European Journal of Physical and Rehabilitation Medicine, 55(6), 772–782. https://doi.org/10.23736/S1973-9087.19.05695-8
17.
DiskinC.BuchananF.CohenE.DewanT.DiaczunT.GordonM.LeeE.MooreHepburnC.MajorN.OrkinJ.PatelH.GillP. J. (2022). The impact of the COVID-19 pandemic on children with medical complexity. BMC Pediatrics, 22(1), 496. https://doi.org/10.1186/s12887-022-03549-y
18.
EdelsteinH.SchippkeJ.SheffeS.KingsnorthS. (2017). Children with medical complexity: a scoping review of interventions to support caregiver stress. Child: care, health and development, 43(3), 323–333.
FolkmanS.MoskowitzJ. T. (2007). Positive affect and meaning-focused coping during significant psychological stress. In The scope of social psychology. https://doi.org/10.4324/9780203965245-21
22.
JonesC. W.LynnM. R. (2018). Blogs written by families during their child’s hospitalization: A thematic narrative analysis. Journal of Pediatric Nursing, 41, 110–116. https://doi.org/10.1016/j.pedn.2018.03.011
23.
KritikosT. K.Stiles-ShieldsC.WinningA. M.StarnesM.OhanianD. M.ClarkO. E.del CastilloA.ChavezP.HolmbeckG. N. (2021). A systematic review of benefit-finding and growth in pediatric medical populations. Journal of Pediatric Psychology, 46(9), 1076–1090. https://doi.org/10.1093/jpepsy/jsab041
24.
KuoD. Z.BirdT. m.TilfordJ. M. (2011). Associations of family-centered care with health care outcomes for children with special health care needs. Maternal and Child Health Journal, 15(6), 794–805. https://doi.org/10.1007/s10995-010-0648-x
25.
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. Archives of Pediatrics and Adolescent Medicine, 165(11), 1020–1026. https://doi.org/10.1001/archpediatrics.2011.172
26.
KuoD. Z.HoutrowA. J.NorwoodK. W.AdamsR. C.BreiT. J.DavidsonL. F.DavisB. E.FriedmanS. L.HymanS. L.NoritzG. H.YinL.MurphyN. A.PitreJ. B.MannM.PeacockG.SimpserE.SmithP. J.MuchaS. (2016). Recognition and management of medical complexity. Pediatrics, 138(6), Article e20163021. https://doi.org/10.1542/peds.2016-3021
27.
LaMontagneL. L.PawlakR. (1990). Stress and coping of parents of children in a pediatric intensive care unit. Heart & Lung: The Journal of Critical Care, 19(4), 416–421.
28.
LazarusR. S.FolkmanS. (1984). Stress, appraisal, and coping. Springer Publishing Company, Inc.
29.
LeeR. L. T.LauV. W. K. (2013). An interpretive phenomenological study of Chinese mothers’ experiences of constant vigilance in caring for a hospitalized sick child. Journal of Advanced Nursing, 69(8), 1808–1818. https://doi.org/10.1111/jan.12042
30.
MandicC. G.JohaningsmeirS.CordenT. E.EarleA.Acevedo-GarciaD.GordonJ. B. (2017). Impact of caring for children with medical complexity on parents’ employment and time. Community, Work and Family, 20(4), 444–458. https://doi.org/10.1080/13668803.2016.1202195
McCannD.BullR.WinzenbergT. (2012). The daily patterns of time use for parents of children with complex needs: A systematic review. Journal of Child Health Care, 16(1), 26–52. https://doi.org/10.1177/1367493511420186
MurphyN. A.ChristianB.CaplinD. A.YoungP. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33(2), 180–187. https://doi.org/10.1111/j.1365-2214.2006.00644.x
36.
NicholasD. B.KeiltyK. (2007). An evaluation of dyadic peer support for caregiving parents of children with chronic lung disease requiring technology assistance. Social Work in Health Care, 44(3), 245–259. https://doi.org/10.1300/J010v44n03_08
37.
NygårdC.ClancyA. (2018). Unsung heroes, flying blind—a metasynthesis of parents’ experiences of caring for children with special health-care needs at home. Journal of Clinical Nursing, 27(15–16), 3179–3196. https://doi.org/10.1111/jocn.14512
38.
ParkC. L.ArmeliS.TennenH. (2004). Appraisal-coping goodness of fit: A daily internet study. Personality and Social Psychology Bulletin, 30(5),558–569. https://doi.org/10.1177/0146167203262855
39.
ParkC. L.FolkmanS. (1997). Meaning in the context of stress and coping. Review of general psychology, 1(2), 115–144.
40.
PerrinJ. M.BloomS. R.GortmakerS. L. (2007). The increase of childhood chronic conditions in the United States. Journal of the American Medical Association, 297(24), 2755–2759. https://doi.org/10.1001/jama.297.24.2755
41.
PitchN.VermaR.DavidsonL.RobertsonT.AnagnostopoulosG.SunkonkitK.QaziA.AmbreenM.MekhuriS.MillerM. R.OrkinJ.AminR. (2023). Screening for psychosocial risk in caregivers of children with medical complexity during the COVID-19 pandemic: A cross-sectional study. BMJ Open, 13(4), Article e068867. https://doi.org/10.1136/bmjopen-2022-068867
42.
RobertsS. O.Bareket-ShavitC.DollinsF. A.GoldieP. D.MortensonE. (2020). Racial inequality in psychological research: Trends of the past and recommendations for the future. Perspectives on Psychological Science: A Journal of the Association for Psychological Science, 15(6), 1295–1309. https://doi.org/10.1177/1745691620927709
43.
RomleyJ. A.ShahA. K.ChungP. J.ElliottM. N.VestalK. D.SchusterM. A. (2017). Family-provided health care for children with special health care needs. Pediatrics, 139(1), Article e20161287. https://doi.org/10.1542/peds.2016-1287
44.
SchadewaldA.KimballE.OuL. (2018). Coping strategies, stress, and support needs in caregivers of children with mucopolysaccharidosis. JIMD Reports, 42, 89–97. https://doi.org/10.1007/8904_2017_87
SmithJ. A.OsbornM. (2003). Interpretive phenomenological analysis. In SmithJ. (Ed.), Qualitative psychology: A practical guide to research methods (pp. 51–80). Sage Publications Inc.
47.
SobotkaS. A.LynchE.QuinnM. T.AwadallaS. S.AgrawalR. K.PeekM. E. (2019). Unmet respite needs of children with medical technology dependence. Clinical Pediatrics, 58(11–12), 1175–1186. https://doi.org/10.1177/0009922819870251
48.
TagerJ. B.KenneyA. E.LimP. S.EverhartS. A.JohaningsmeirS.BalistreriK. A.Morgan-TautgesA.BerridgeK. E.BropheyM.RothschildC. B.ScanlonM. C.DaviesW. H.LeeK. J.SchnellJ. L. (2023). The impact of the COVID-19 pandemic on families of children with medical complexity: A qualitative study of caregivers’ experiences. Child: Care, Health and Development, 50(1), Article e13187. https://doi.org/10.1111/CCH.13187
49.
ThomsonJ.ShahS. S.SimmonsJ. M.Sauers-FordH. S.BrunswickS.HallD.KahnR. S.BeckA. F. (2016). Financial and social hardships in families of children with medical complexity. Journal of Pediatrics, 172, 187–193.e1. https://doi.org/10.1016/j.jpeds.2016.01.049
50.
ThyenU.TerresN. M.YazdgerdiS. R.PerrinJ. M. (1998). Impact of long-term care of children assisted by technology on maternal health. Journal of Developmental & Behavioral Pediatrics, 19(4), 273–282.
51.
TutelmanP. R.ChambersC. T.UrquhartR.FernandezC. V.HeathcoteL. C.NoelM.FlandersA.GuilcherG. M. T.SchulteF.StinsonJ. N.MacLeodJ.SternM. (2019). When “a headache is not just a headache”: A qualitative examination of parent and child experiences of pain after childhood cancer. Psycho-Oncology, 28(9), 1901–1909. https://doi.org/10.1002/pon.5170
52.
VermaR.MehdianY.ShethN.NettenK.VinetteJ.EdwardsA.PolyviouJ.OrkinJ.AminR. (2020). Screening for caregiver psychosocial risk in children with medical complexity: A cross-sectional study. BMJ Paediatrics Open, 4(1), Article e000671. https://doi.org/10.1136/bmjpo-2020-000671
53.
WoodgateR. L.EdwardsM.RipatJ. D.BortonB.RempelG. (2015). Intense parenting: A qualitative study detailing the experiences of parenting children with complex care needs. BMC Pediatrics, 15(1), 197. https://doi.org/10.1186/s12887-015-0514-5
54.
YuS. M.SinghG. K. (2009). Household language use and health care access, unmet need, and family impact among CSHCN. Pediatrics, 124(Suppl 4), S414–S419. https://doi.org/10.1542/peds.2009-1255M
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