SPECIAL ISSUE ARTICLE

Psychological Care of the Family of

Children with Medical Complexities
Andrea Scheid, MD; and Shashi Sahai, MD, MRCP

ABSTRACT commonly been applied to children and

Advances in medical knowledge and treatments have made possible the survival of youth with chronic conditions associ-
children with diseases that require lifelong care, and increasing numbers of families with ated with medical fragility, substantial
children with medical complexity are presenting for health care. Owing to an increase functional limitations, increased health
in home-based care, the responsibility of complicated treatment regimens falls on par- and other service needs, and increased
ents and family caregivers. Based on studies and national survey, parents of children health care costs.2
with medical complexity fare worse in mental health and family functioning. This review The national goal in Healthy People
describes screening tools and research studies for family functioning and psychological 2010 (Office of Disease Prevention and
health. These data also help in designing a family centered approach to the care of par- Health Promotion)3 proposed to have
ents and caregivers to create a medical home and community support systems that inte- more CSHCN and chronic conditions
grate psychological and emotional interventions. Physician communication can be op- cared for at home because of high hos-
timized by educational tools of brief intervention and community connections. [Pediatr pital costs, reduced payer reimburse-
Ann. 2024;53(3):e93–e98.] ment, the increased number of children
with chronic illness, and a recognition

R
ecent advances in medical knowl- is important to clarify the definitions. that prolonged hospital stays are det-
edge and improved technologies In 1998, the Maternal and Child Health rimental to normal child development
and treatments have resulted in Bureau defined CSHCN as those who and family health and functioning.
longer life expectancies for children with have or are at increased risk for chronic This has led to the need for parents and
serious congenital or acquired complex physical, developmental, behavioral, family to assume greater responsibility
chronic conditions. These children of- or emotional conditions and who also for their children’s health care needs at
ten have multiple ongoing health and require health and related services of a home.
developmental issues that may include type or amount beyond that required by However, children with complex
functional impairments, neurodevelop- children generally.1 chronic conditions have needed hos-
mental disabilities, and often, lifelong However, in more recent years, health pital care at an increasing rate during
dependence on medical technology such care providers, policymakers, and re- the past couple of decades. They consti-
as feeding tubes, tracheostomy tubes, searchers of child health services have tuted 10% of admissions, 25% of hospi-
oxygen therapy, and mechanical ventila- shifted their focus from all CSHCN to tal days, 40% of hospital charges, 75%
tion. As children with medical complex- a subgroup of children with chronic ill- to 92% of technology-assistance pro-
ity (CMC) are a subset of children with ness. Although a variety of definitions cedures, and 43% of inpatient deaths
special health care needs (CSHCN), it have been used, the term CMC has most among children in the United States in
2006.4
Andrea Scheid, MD, is a Pediatric Hospitalist and a Pediatrician, Team Wellness Center; an Assistant
Professor, Department of Pediatrics, Oakland University William Beaumont School of Medicine; and TOOLS FOR SCREENING
an Assistant Professor, Department of Pediatrics, Wayne State University School of Medicine. Shashi FAMILIES OF CHILDREN WITH
Sahai, MD, MRCP, is a Pediatric Hospitalist, Beaumont Childrens’. MEDICAL COMPLEXITY
Address correspondence to Shashi Sahai, MD, MRCP, Department of Pediatrics, Oakland University Most CMC now live at home, often
William Beaumont School of Medicine, 3601 W. 13 Mile Road, Royal Oak, MI 48073; email: Shashi.sahai@ with tracheostomies, ventilators, en-
corewellhealth.org. teral feeding tubes, complex medica-
Disclosure: The authors have no relevant financial relationships to disclose. tion regimens, and life-sustaining tech-
doi:10.3928/19382359-20240109-03
nologies. There has been a shift from

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 SPECIAL ISSUE ARTICLE

hospital-based to home-based care, and able and valid for assessing the effects of to 75% among CMC. Similarly, care-
a corresponding shift in caregiving re- the pediatric chronic conditions on par- givers of CSHCN-SD and CMC were
sponsibilities from licensed health care ent HRQOL and family functioning.8,9 significantly more likely to report fre-
providers to informal family caregiv- quently feeling bothered by and angry
ers. Parents must often perform tasks PSYCHOLOGICAL AND with their child than caregivers of non-
that are the usual purview of health care FUNCTIONING PROBLEMS IN CSHCN. Significantly lower percent-
professionals, including administering FAMILIES OF CHILDREN WITH ages of CSHCN-SD and CMC families
medications or oxygen therapy, changing MEDICAL COMPLEXITY reported talking together, working
tracheostomy tubes, suctioning airways, The effects of having a health problem together, having strengths to rely on,
passing nasogastric tubes or urinary are not limited to the physical symptoms and remaining hopeful than families
catheters, giving injections, or provid- of the illness but include psychological of non-CSHCN when facing prob-
ing continuous and sometimes painful effects as well. Family members are af- lems (all P < .001). Significantly higher
therapeutic regimen. These responsibili- fected in multiple ways and are also key proportions of CSHCN-SD and CMC
ties affect parent/guardian social roles agents in the management of chronic ill- had experienced parental or guard-
and function, health, and quality of life nesses. This leads to a bidirectional rela- ian divorce or separation, death, and
(QOL). Before we consider providing tionship between child functioning and incarceration and lived with a person
psychological support, it is important to family level variables. with mental illness (20.5% and 25.8%
look at the variety of problems that fami- Yu et al.10 examined responses to vs. 5.6%) or substance abuse disorder
lies may face. survey items in the National Survey of (17.9% and 20.3% vs 6.8%), compared
The various tools that can screen for Children’s Health Combined 2016-19 with non-CSHCN (all P < .001).
psychological problems in parents and Dataset’s Family Health and Activities The experience of taking care of
family functioning for CMC are de- domain to describe (1) caregiver emo- CMC can be described as intense par-
scribed in Table A.5 The World Health tional well-being, (2) family functioning, enting, characterized by the need for
Organization frames QOL as “an indi- and (3) economic difficulties of families extra support and resources, hands-
vidual’s perception of their position in of CSHCN with significant disability on care, and increased responsibili-
life in the context of the culture and val- (CSHCN-SD) and of CMC. They also ex- ties. Intense parenting leaves parents
ue systems in which they live and in re- amined the relationships between child with little time to engage in self-care
lation to their goals, expectations, stan- disability and medical complexity sta- and social activities. The studies that
dards, and concerns.”6 QOL is affected tus with caregiver and family outcomes. have addressed various aspects of the
by the complex interactions of a person’s CSHCN-SD and CMC were more likely psychological state and experiences
physical health, psychological state, per- to be age 12 to 17 years old, male, belong of parents and caregivers of CMC and
sonal beliefs, social relationships, and to racial and ethnic minority popula- children with other chronic conditions
environment. The World Health Orga- tions, and live in poorer households are described in Table C.11-13
nization’s Constitution of 1948 defines with nontraditional (eg, single-parent, The health system’s fragmentation
health-related QOL (HRQOL) as a mul- grandparent-led) family structures than influences access to care of all children
tidimensional construct that includes non-CSHCN (all P < .001). A higher and seems to be especially problematic
satisfaction felt by a person as it pertains proportion of caregivers of CSHCN-SD for CMC. The pediatric specialists rep-
to health, with physical, emotional, cog- and CMC reported poor or fair mental resenting disciplines most needed by
nitive, and social well-being. health (13.3% and 18.3% vs 3.8%) and CMC are limited in number and pri-
It is important to understand the difficulty coping with parenting de- marily practice at children’s hospitals
tools used to measure holistic well-being mands (4.7% and 4.7% vs 1.1%) than that are not equally distributed geo-
of parents and families, and one such caregivers of non-CSHCN. As the com- graphically. The parents of CMC are
tool is the PedsQL Family Impact Mod- plexity of medical needs increased, the acutely aware of inefficient design of
ule (FIM), developed as a complement to proportion of caregivers describe pa- systems and fully understand the com-
the PedsQL. It is a quantitative measure rental aggravation rose correspondingly. plexities of fragmentation and under-
of the parent’s self-reported HRQOL and The proportion of caregivers reporting resourced care coordinators, as they
family functioning arising out of their their child was harder to care for (than are the only ones who often see across
child’s health (Table B).7 The FIM is reli- other children) increased from <10% up boundaries and silos.

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 SPECIAL ISSUE ARTICLE

INTERVENTION OVERVIEW approach are being developed and re- not give providers guidance for balanc-
Psychological care for families and searched. Platforms are in development ing the interests of the family into these
their children living with medical com- for physician-to-physician teleconsulta- complex decisions.
plexity is best provided with family cen- tion or direct-care telepsychiatry for pe- Families describe needing to “put
tered care creating a comprehensive and diatric medical teams to work with adult oxygen on [themselves] first” when
individualized plan. Parents have sig- behavioral health specialists. managing complex medical care 24-7
nificant and diverse support needs; thus, without breaks in the setting of constant
they are likely to benefit from several in- APPROACH TO SUPPORT FOR worry. Families balance the mental
terventions targeting specific issues and FAMILIES OF CHILDREN WITH health stigma with having “everything
outcomes across their child’s journey.14 MEDICAL COMPLEXITY fall[ing] apart without behavioral health
Interventions that are feasible, relevant, The pediatric medical provider is support.”19 This, balanced with the de-
and accessible need further research with integral in prevention, screening, and signed silos of care, takes a psychologi-
nonbiased evidence to quantify benefits, early interventions with the families. cal toll. Medical providers may not have
especially in inclusive, diverse popula- Working within the “two-generation” extensive training in psychological and
tions. The studies available are heteroge- care model, wherein “the best way to emotional health supports. Historically,
neous and demonstrate varying efficacy help children is to help their parents, and the psychological health for all family
based on the family needs and medical the best way to reach parents is through members has not been prioritized, nor
conditions; however, intervention did their children,”18 enables improved psy- have medical trainees been exposed to
not create significant harm. In several chological care for parents. An example strategies to address these needs. Indeed,
interventions, families noted negative would be hospital staff providing a pri- many faculty do not have the training to
experiences when the supports were vate and quiet space for a parent to par- guide this education for our residency
not tailored to the family’s needs. This ticipate in therapy telehealth addressing and fellowship programs, and those
could include supports not being easily the parent’s acute stress during their who attempt do so in the learning mode.
accessible to families; families having to child’s hospitalization. The child benefits As Dr. Wallace Crandall implores, we
navigate emotions while processing ex- as their parent is physically near by for can do better than nothing.19 Listen-
posure to differing diagnoses or stages any acute decompensation and the child ing and instilling hope are powerful
of illness; or families not developing ac- will have a parent who is functionally interventions.19  
tionable skills or knowledge.15 Clinicians coping and prepared to advocate. Dur-
do not have multiple systematic studies ing the child’s visit, the family should FAMILY/STAFF PARTNERSHIP
guiding comprehensive psychological be provided with referrals for identified A qualitative study describes that
care. Many focused studies currently gaps in their support system. For exam- this patient-child unit interacts with
demonstrate interventions that provide ple, the pediatric medical provider as- the hospital staff unit via five pillars of
improved QOL and psychological care sesses the parent’s community resources (1) social acts and relationships, (2) per-
for the families of CMC.16 by asking the parent to bring a social and ception, (3) communication, (4) role,
The Pediatric Psychosocial Preventa- emotional support person to the child’s and (5) self-concept.20 The hospital staff
tive Health Model organizes families in visit. Normalizing this holistic health provides support via these pillars by es-
terms of psychosocial risk.17 With the for the family unit should be a universal tablishing roles and responsibilities, rec-
model presented as a pyramid, the chil- goal of the pediatric medical provider’s ognizing parents’ expertise about their
dren and families who are distressed but clinical interactions. “Until holistic, fully children, being knowledgeable of the
resilient compose the largest group at integrated chronic disease models of patient’s medical history, handling de-
the base. Providing these families with health care delivery are adopted, well- manding situations, and providing in-
screening tools and universal support ness is likely to reside at the edges of the formation and care. Staff enables parents
is effective. The top tier represents the models.”19 In addition, pediatric medi- of CMC to effectively advocate, which is
lesser number of families with persistent cal providers are familiar with a specific critical for quality of care.20 The parent-
distress, targeting them with multidisci- decisional framework focused on the staff partnerships, described in a study of
plinary, intensive support, and behavior- patient’s best interests. This framework families admitted to the pediatric inten-
al health care. Integrated and colocated for medical decision-making legally sive care unit, would ideally be flexible,
mental health services having a holistic and ethically is appropriate, but it does especially when the differences in ex-

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 SPECIAL ISSUE ARTICLE

at the transition of care from hospital CARE DURING TRANSITIONS

to home.14,21 Parents of CMC felt rushed with
higher levels of anxiety when the tran-
FAMILIES LIVING WITH CHOICES sition home from the hospital was on
Parents of CMC make difficult, life- the medical staff timeline or at night.
altering decisions for their children The cognitive dissonance of approach-
within the complexity of their situation ing medical stabilization complicated
and the health care system. Strategies by oscillating clinical status and the
improve parental outcomes after these desire to be home with risk of read-
life-changing decisions such as trache- mission reinforces use of a coordinat-
ostomies. Providing information and ed discharge readiness process. Struc-
education in the process of deciding on tured evaluations of family needs and
a tracheostomy and aligning the dis- readiness for transitional care earlier
cussions with parents’ own convictions in the hospitalization is important.
of being a “good parent” reduces stress Supporting families’ normal rou-
and promotes confidence through the tines in and during posthospital care
entire journey.22 Borschuk et al.23 de- reduces the frequency of false posi-
scribes a medical team that incorpo- tive alarms and sleep deprivation.19
rates a clinical psychologist with the Detailed interviews of 23 families of
staff of a chronic ventilator unit. The CMC prioritized seven domains for
psychologist educated the staff, par- care: effective engagement with health
ticipated in psychosocial rounds, and care providers, respect for families’
provided therapy and interventions to discharge readiness, care coordina-
the families of CMC. This significantly tion, timely and efficient discharge
reduced parental distress while de- processes, pain and symptom control,
creasing time for tracheostomy train- self-efficacy to support recovery and
ing completion and increasing parent ongoing child development, and nor-
engagement.23   malization and routine.25 These seven
As expected from a quality-driven, domains serve as a guiding principle
patient- and family centered medi- of coordinating transitions home.
cal home, the staff should maintain
relationships with families of CMC SELF-EFFICACY AND HOME CARE
throughout their child’s medical jour- Once home, parents did report
ney and into bereavement. Parents of positive aspects of receiving pediatric
CMC shared that honesty and open- home care services with home health
ness during conversations about their providers being a part of their com-
child’s end-of-life care was difficult but munity, although providers’ presence
Figure 1. A clinical approach to address the helpful. Having opportunities unique also could feel like having strangers
emotional health of pediatric patients with
and individualized related to clinical in their home. Parents of CMC fulfill
chronic conditions and their families. Reprinted
with permission of Elsevier from Sood et al.30 trials or other interventions was impor- the roles of parent and home health
tant. And finally, consistent, multidis- provider. Home health care is chal-
pertise collide. The study participants ciplinary conversations without a false lenging but can develop resilience
also describe negotiating caregiving sense of hope were integral.14 Families within the family unit. Recognition
boundaries. Many other articles em- desired grief and bereavement support, and regard for this level of expertise
phasize the importance of maintain- not only to cope with the loss of their and resilience are often not conveyed
ing and supporting schedules and child but also to deal with this abrupt to the family. Self-efficacy and recog-
patterns of care provided at home for change and loss of relationships with nition of realistic family expectations
family well-being and improved safety caring professionals.24 enable personal growth and conflict-

e96 Copyright © SLACK Incorporated

 SPECIAL ISSUE ARTICLE

resolution skills.26 Maintaining a med- dividual and definable and can be sup- decreased positive emotions, social
ical home in the primary care setting ported or hindered by the medical staff isolation, stress, lower functioning,
decreases parental stress and improves unit. By recognizing the parents’ beliefs, and posttraumatic stress disorders.
family functioning because of access the staff provides affirmation and sup- Psychological care and intervention
to services and resources.27 Telemedi- ports family strength. Examples of these provided for the families of CMC need
cine and information technology can beliefs are that “good parents” are ad- more family and patient-guided, mul-
enhance information sharing and reduce vocates for their children or that “good tidimensional, systematic research for
stress, anxiety, and isolation. parents” make their children feel loved.22 comprehensive and evidence-based
Providing a strength-based approach care.
COMMUNICATING WITH FAMILIES demonstrates that staff see the parents as Research demonstrated that tar-
Creating solutions and plans best capable, especially when seeking psycho- geted interventions for psychological
starts with an open and honest space for logical and emotional help.19,29 needs focused on the child’s journey
communication, starting with a genuine In the context of the medical home, improve health and thus should be
statement of “How are you doing?”19 As staff can provide basic psychoeducation implemented. Creating and expanding
described by the Roadmap Project via the by talking about adjusting to this role, education for learners and providers
American Board of Pediatrics, clinicians normalizing negative feelings, and pro- to master psychological skills is es-
start the conversation about psycho- moting self-care. A technique studied sential for families of CMC so that the
logical and emotional health by utilizing in mothers of children with newly diag- patient and family thrive.
the “Normalize, Ask, Pause, Connect” nosed cancer is “Bright IDEAS,” meant to
technique (Figure 1). Faculty and learn- promote problem-solving skills and less- REFERENCES
1. McPherson M, Arango P, Fox H, et al. A
ers should use practical approaches en depression. The process to model the new definition of children with special
grounded in sound psychology.19,28 De- intervention is based on the mnemonic: health care needs. Pediatrics. 1998;102(1
spite open-ended inquiry into their psy- • Bright: Be optimistic about your abil- Pt 1):137-140. https://doi.org/10.1542/
peds.102.1.137 PMID:9714637
chological and emotional health, families ity to solve problems 2. Cohen E, Kuo DZ, Agrawal R, et al. Chil-
may not easily share. Scripting that can • I: Identify the problem dren with medical complexity: an emerg-
ing population for clinical and research
be helpful in these situations includes, • D: Define your options initiatives. Pediatrics. 2011;127(3):529-538.
for example, “Tell me about how you and • E: Evaluate and choose one https://doi.org/10.1542/peds.2010-0910
PMID:21339266
your family are coping. And how can we • A: Act 3. US Department of Health and Human
work together to support you and your • S: See if it worked30 Services. Healthy People 2030. Building a
healthier future for all. www.health.gov/
family better emotionally?”29 Strategies of communication with the healthypeople/
Conversations that normalize the parents can easily be extended to siblings 4. Simon TD, Berry J, Feudtner C, et al. Chil-
complexity and obstacles that families in an age-appropriate manner. Create a dren with complex chronic conditions in
inpatient hospital settings in the United
experience encourage sharing of emo- child-friendly environment in the form States. Pediatrics. 2010;126(4):647-655.
tions by parents. Important skills include of sibling care and connect them with https://doi.org/10.1542/peds.2009-3266
PMID:20855394
nonverbal and verbal communication tools such as journals, fidget toys, or vid- 5. Pai ALH, Patiño-Fernández AM, McSher-
with brief open-ended questions and eos of other siblings discussing the expe- ry M, et al. The Psychosocial Assessment
Tool (PAT2.0): psychometric properties
appropriate pauses by the clinician. The rience. Sibling camps and therapeutic of a screener for psychosocial distress in
clinician next improves competency by support groups are effective as well.31 families of children newly diagnosed with
cancer. J Pediatr Psychol. 2008;33(1):50-
learning through these conversations, 62. https://doi.org/10.1093/jpepsy/jsm053
supporting the connections that families CONCLUSION PMID:17609228
self-identify, and then connecting them Understanding the effects of pedi- 6. The World Health Organization Quality of
Life Assessment (WHOQOL): development
with additional resources.19 atric medical complexity on the physi- and general psychometric properties. Soc
Pediatric medical providers should cal and mental health of families is Sci Med. 1998;46(12):1569-1585. https://
doi.org/10.1016/S0277-9536(98)00009-4
tailor conversations with parents of CMC important for providing care, includ- PMID:9672396
to explore their self-identity related to ing mental health care, to the fami- 7. Medrano GR, Berlin KS, Hobart Davies
W. Utility of the PedsQL™ Family Im-
personal belief structures regarding their lies. Studies demonstrate that fami- pact Module: assessing the psychometric
core duties of being a “good parent.” Re- lies of CMC experience lower QOL, properties in a community sample. Qual
Life Res. 2013;22(10):2899-2907. https://
search has shown parents’ beliefs are in- increased depression and anxiety,

PEDIATRIC ANNALS • Vol. 53, No. 3, 2024 e97

 SPECIAL ISSUE ARTICLE

doi.org/10.1007/s11136-013-0422-9 16. Cohen E, Berry JG, Sanders L, Schor of advance care planning for children
PMID:23625591 EL, Wise PH. Status complexicus? The with medical complexity. JAMA Netw
8. Scarpelli AC, Paiva SM, Pordeus IA, emergence of pediatric complex care. Pe- Open. 2020;3(7):e2010337. https://doi.
Varni JW, Viegas CM, Allison PJ. The diatrics. 2018;141(suppl 3):S202-S211. org/10.1001/jamanetworkopen.2020.10337
pediatric quality of life inventory (Ped- https://doi.org/10.1542/peds.2017-1284E PMID:32721029
sQL) Family Impact Module: reliabil- PMID:29496971 25. Leyenaar JK, O’Brien ER, Leslie LK, Lin-
ity and validity of the Brazilian version. 17. Kazak A. Pediatric Psychosocial Pre- denauer PK, Mangione-Smith RM. Fami-
Health Qual Life Outcomes. 2008;6(1):35. ventative Health Model (PPPHM): re- lies’ priorities regarding hospital-to-home
https://doi.org/10.1186/1477-7525-6-35 search, practice and collaboration in pe- transitions for children with medical com-
PMID:18492262 diatric family systems medicine. Fam Syst plexity. Pediatrics. 2017;139(1):e20161581.
9. Varni JW, Sherman SA, Burwinkle Health. 2006;24(4):381-395. https://doi. https://doi.org/10.1542/peds.2016-1581
TM, Dickinson PE, Dixon P. The Ped- org/10.1037/1091-7527.24.4.381 PMID:27940509
sQL Family Impact Module: prelimi- 18. Zuckerman B. Two-generation pedi- 26. LeGrow K, Cohen E, Espin S. Relational
nary reliability and validity. Health atric care: a modest proposal. Pediat- aspects of parent and home health care
Qual Life Outcomes. 2004;2(1):55. rics. 2016;137(1):e20153447. https:// provider care practices for children with
https://doi.org/10.1186/1477-7525-2-55 doi.org/10.1542/peds.2015-3447 complex care needs receiving health
PMID:15450120 PMID:26712861 care services in the home: a narrative re-
10. Yu JA, Bayer ND, Beach SR, Kuo DZ, 19. American Board of Pediatrics Foundation. view. Acad Pediatr. 2022;22(2):196-202.
Houtrow AJ. A national profile of fami- The Roadmap Project: Supporting the Re- https://doi.org/10.1016/j.acap.2021.08.009
lies and caregivers of children with dis- silience, Emotional and Mental Health of PMID:34403801
abilities and/or medical complexity. Acad Pediatric Patients with Chronic Conditions 27. Edelstein H, Schippke J, Sheffe S, Kings-
Pediatr. 2022;22(8):1489-1498. https:// and Their Families. How Are You Doing? north S. Children with medical complex-
d o i . o r g / 1 0 . 1 0 1 6 / j . a c a p. 2 0 2 2 . 0 8 . 0 0 4 Video. American Board of Pediatrics Foun- ity: a scoping review of interventions to
PMID:36002069 dation; 2018. support caregiver stress. Child Care Health
11. Pinquart M. Featured article: depressive 20. Hagvall M, Ehnfors M, Anderzén-Carlsson Dev. 2017;43(3):323-333. https://doi.
symptoms in parents of children with A. Experiences of parenting a child with org/10.1111/cch.12430 PMID:27896838
chronic health conditions: a meta-analy- medical complexity in need of acute hospital 28. Sood E, Kenowitz J, Goldberg SW, But-
sis. J Pediatr Psychol. 2019;44(2):139-149. care. J Child Health Care. 2016;20(1):68-76. ler SC. Normalize-ask-pause-connect:
https://doi.org/10.1093/jpepsy/jsy075 https://doi.org/10.1177/1367493514551308 a clinical approach to address the emo-
PMID:30346613 PMID:25352538 tional health of pediatric patients with
12. Woolf-King SE, Anger A, Arnold EA, 21. Rennick JE, St-Sauveur I, Knox AM, Rud- chronic conditions and their families.
Weiss SJ, Teitel D. Mental health among dy M. Exploring the experiences of parent J Pediatr. 2023;255:247-252. https://
parents of children with critical con- caregivers of children with chronic medical doi.org/10.1016/j.jpeds.2022.10.019
genital heart defects: a systematic review. complexity during pediatric intensive care PMID:36270392
J Am Heart Assoc. 2017;6(2):e004862. unit hospitalization: an interpretive descrip- 29. Rotberg B, Wittenberg J, Orkin J, Saun-
https://doi.org/10.1161/JAHA.116.004862 tive study. BMC Pediatr. 2019;19(1):272. ders NR, Cohen E. Caring about care-
PMID:28151402 https://doi.org/10.1186/s12887-019-1634-0 givers: the role of paediatricians in sup-
13. Cousino MK, Hazen RA. Parenting stress PMID:31387555 porting the mental health of parents of
among caregivers of children with chron- 22. October TW, Jones AH, Greenlick Mi- children with high caregiving needs. Arch
ic illness: a systematic review. J Pediatr chals H, Hebert LM, Jiang J, Wang J. Pa- Dis Child. 2020;105(11):1028-1030. https://
Psychol. 2013;38(8):809-828. https://doi. rental conflict, regret, and short-term doi.org/10.1136/archdischild-2019-318729
org/10.1093/jpepsy/jst049 PMID:23843630 impact on quality of life in tracheos- PMID:32376696
14. Bogetz JF, Revette A, Partin L, DeCourcey tomy decision-making. Pediatr Crit Care 30. Sahler OJ, Dolgin MJ, Phipps S, et al.
DD. Relationships and resources support- Med. 2020;21(2):136-142. https://doi. Specificity of problem-solving skills
ing children with serious illness and their org / 1 0 . 1 0 9 7 / P C C . 0 0 0 0 0 0 0 0 0 0 0 0 2 1 0 9 training in mothers of children newly
parents. Hosp Pediatr. 2022;12(9):832- PMID:31568244 diagnosed with cancer: results of a mul-
842. https://doi.org/10.1542/ 23. Borschuk AP, Williams SE, McClure JM, tisite randomized clinical trial. J Clin
hpeds.2022-006596 PMID:35945359 et al. A novel behavioral health program Oncol. 2013;31(10):1329-1335. https://
15. Bradshaw S, Bem D, Shaw K, et al. Improv- for family caregivers of children admit- d o i . o r g / 1 0 . 1 2 0 0 / J C O. 2 0 1 1 . 3 9 . 1 8 7 0
ing health, wellbeing and parenting skills in ted to a transitional chronic ventilator PMID:23358975
parents of children with special health care unit. Pediatr Pulmonol. 2021;56(6):1635- 31. Holmes C, Kimbrough T, Davis T, Sam-
needs and medical complexity - a scop- 1643. https://doi.org/10.1002/ppul.25327 uel A, Smyth F. Counseling families with
ing review. BMC Pediatr. 2019;19(1):301. PMID:33647193 children with medical complexity. Fam J
https://doi.org/10.1186/s12887-019-1648- 24. Lord S, Moore C, Beatty M, et al. Assess- Alex Va. 2023;31(1):157-164. https://doi.
7 PMID:31470820 ment of bereaved caregiver experiences org/10.1177/10664807221124134

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 Table A

Screening Tools Used to Assess Psychological Problems and Functioning in Families with Children with
Medical Complexity and Chronic Conditions15
Entity screened Various screening tools used in research studies Suggested screening tool
Depression and Beck Depression Inventory-II; Beck Depression PHQ-9, PHQ-4
suicidality Inventory; Center for Epidemiologic Studies Nine items
Depression Scale; Center for Epidemiologic Studies Written self-administered
Short Depression Scale; Depression; Depressiveness
Scale, Complaints List; PHQ5
Anxiety State Trait Anxiety Inventory, State Trait Anxiety GAD 7, PHQ4
Inventory (state scale only); GAD 7; Psychiatric
Symptom Index; Beck Anxiety Inventory; State
Anxiety Inventory; Taylor’s Manifest Anxiety Scale
PTSD Post Hospitalization Stress Index for Parents; Impact PC-PTSD
of Event Scale; Posttraumatic Stress Disorder
Checklist – Specific; PTSD Checklist
Substance abuse Tobacco, Alcohol, Prescription medication, and other TAPS
Substance use (TAPS) Four items self-
administered
Stress Acute Stress Disorder Scale; Pediatric Inventory for Perceived Stress Scale
Parents (measures parenting stress); Parental Stress
Scale; Parental Stressor Scale: PICU; Parenting Stress
Index; Parenting Stress Index-Short Form; Pediatric
Stressor Scale: Pediatric Intensive Care; Perceived
Stress Scales; SPSQ (Swedish version of Parenting
Stress Index); Symptoms of stress inventory
Coping Coping Health Inventory for Parents; Family Crisis
Oriented Personal Evaluation Scale; Brief Cope
Inventory; coping question; Issues in Coping With
IDDM-Parent Scale
Family functioning Family Adaption and Cohesion Evaluation Scale; Family Adaption and
Family Management Measure; Feetham Family Cohesion Evaluation Scale
Functioning Survey; Iceland Expressive Family
Functioning Questionnaire; relationships between
family members through family arches; McMasters
Family Assessment Device
Quality of life PedsQL FIM; 36-Item Short Form Survey; Pediatric PedsQL FIM
Asthma Caregiver’s Quality of Life; Parents Diabetes
Quality of Life Questionnaire; quality of life (family
 impact scale); World Health Organization Quality of
Life – BREF
Mood Profile of Mood States; Brief Mood Rating Scale;
Profile of Mood States Short Form
Multiple targets PAT 2.0: The 15-item PAT questionnaire is completed PAT 2.09
in 5 to 10 min and assesses seven subscales: family
structure and resources, social support, patient/child
problems, sibling problems, caregiver problems,
caregiver stress reactions, and family beliefs.
Based on the PPPHM, the total PAT score stratifies
families into three levels of psychosocial risk:
“Universal” families with normal transient levels of
stress (total score < 1.0), intermediate-risk
“Targeted” families with acute or elevated levels of
stress (total score between 1.0 and 1.9), and high-
risk “Clinical” families with severe stress (total score
≥ 2.0)
Abbreviations: FIM, Family Impact Module; GAD 7, Generalized Anxiety Disorder 7; PAT 2.0, Psychosocial Assessment Tool
2.0; PC-PTSD, Primary Care PTSD Screen; PHQ, Patient Health Questionnaire; PICU, pediatric intensive care unit; PPPHM,
Pediatric Psychosocial Preventative Health Model; PTSD, posttraumatic stress disorder.
 Table B

Components of PedsQL Family Impact Module Screening Tool and Targeted Interventions7
Parent functioning Content Targeted interventions
Physical Feeling tired, Two-generational care model18
getting Support of basic needs: nutrition, physical activity, model home
headaches, feeling routine and support across care settings
weak, and getting Respite carea
stomachaches Paid family caregivers paired with outside supports to decrease
impact of monitors and alarms19
Discussion of interventions to increase sleep
Emotional Anxiety, sadness, Problem-solving education sessions (targeted to diagnosis)15
anger, frustration, Spiritual support and finding meaning
helplessness, and Parent education, child development support, and written
hopelessness disclosure components15
Social Feeling of Primary caregiver–identified personal support person15
isolation, difficulty Online communication and disease-specific forums
getting support Strength-based interviews emphasizing parents who describe
from others, and enrichments and meaning for life themes15
difficulty finding Peer-to-peer support groups15
time or energy for Community groups
social activities Advocacy for community accessibility and acceptance
Grief and bereavement support at end of life24
Cognitive Difficulty Problem-solving skills: Bright IDEAS technique30
maintaining Triple P15
attention, Paid leave
remembering Respite carea
things, and Interactive media15
thinking quickly Psychological flexibility and mindfulness15
Communication Others not Support of the referral, integrated, and colocated mental health
understanding the services29
family’s situation Open discussion about stigma, encouraging mental health care,
and difficulty and feelings of shame and guilt
talking about their Strength-based approach: potential benefits for the child, family
child’s health encouragement
condition and Platforms for physician-to-physician teleconsultation or direct-
communicating care telepsychiatry
with health Medical team–provided information and support at times during
professionals difficult decisions22
Worry Worries include PTSD and acute and chronic screening and referral
 the child’s Sibling care19
condition, the Family paid care (work in progress27)
effect of the Comprehensive catastrophic insurance and paid leave and
illness on other employment support27
family members, Supplemental Security Income, Social Security Disability Income,
and the child’s Family Medical Leave Act,27 short-term disability insurance
future Self-directed funds and support for family management and
medical supplies27
Parental support and parental education15
Teaching of stress-coping skills31
Interactive media15
Family functioning
Daily activities Problems with Creation and support of family routines including the hospital
family daily setting
activities taking Respite carea
more time and Care coordination
effort and Community support for chores, home health aides27
difficulty finding Personal assistant or community offloading nonmedical tasks27
time and energy Parent-staff partnerships21
to finish Psychological flexibility and mindfulness15
household chores
Family Communication, Peer support
relationships stress, conflict Sibling care31
between family Parenting programs: Triple P, Bespoke15
members, Parental behavioral change techniques (multifamily therapy,
difficulty making individual family therapy, adapted Chronic Disease Self-
decisions, and Management–based programs)
difficulty solving Parental education and child development support15
problems as a
family
Abbreviation: PTSD, posttraumatic stress disorder.
aThe ARCH National Respite Network and Resource Center has a national respite locator service as well as a state resources

map to help families identify funding sources and respite providers in their area: https://archrespite.org/.
 Table C

Studies Describing the Psychological Problems Among Parents of Children with CMC and Complex
Chronic Conditions
Author (year) and theme Patient characteristics Problems described Tools, if any used
and method
Medrano et al. (2013)7 929 community PedsQL FIM score of 70, which PedsQL FIM and
QOL parents of children 2 to indicated lower QOL than that of Hospital Anxiety
17 years old average population and Depression
Unclear about the severity of Scale
chronic conditions and technology A 5-point
dependence response scale
is used (0 =
never a
problem; 4 =
always a
problem). Items
are reverse-
scored and
linearly
transformed to a
0 to 100 scale
(0 = 100, 1 = 75,
2 = 50, 3 = 25, 4
= 0), so that
higher scores
indicate better
functioning
(fewer negative
effects). Scale
scores are
computed as
the sum of the
items divided by
the number of
items answered
(this accounts
for missing
data). The
PedsQL FIM
Total Scale
Score is the
 sum of all 36
items divided by
the number of
items answered.
The Parent
HRQOL
Summary Score
(20 items) is
computed as
the sum of the
items divided by
the number of
items answered
in the Physical,
Emotional,
Social, and
Cognitive
Functioning
Scales. The
Family
Functioning
Summary Score
(eight items) is
computed as
the sum of the
items divided by
the number of
items answered
in the Daily
Activities and
Family
Relationships
Scales.9
Pinquart (2019)11 460 studies provided Parents of children with chronic
Depression 58,290 parents of conditions showed small to
children with chronic moderate elevations of depressive
conditions. Children symptoms compared with parents
most often had cancer of healthy and nondisabled
(n = 10,987), asthma children and test norms.
(6,763), cystic fibrosis 12 studies using structured clinical
(6,132), epilepsy interviews provided a weighted
 (4,411), diabetes mean depression rate of 20.9%.
(4,459; predominantly The highest elevations were found
type I diabetes), heart among parents of young people
disease (3,772), and with neuromuscular disorders,
cerebral palsy (2,526). cancer, and cerebral palsy.
Compared with Elevations of depressive symptoms
parents of healthy were greater in cases with shorter
children durations of the chronic condition,
in mothers compared with fathers,
and in parents from economically
less developed countries compared
with developed countries.
Woolf-King et al. (2017)12 Systematic review PCCHDs are at an increased risk for Different tools in
Psychological health of using the Preferred psychological problems, especially each study
parents Reporting Items for in the immediate weeks and
Systematic Reviews months after cardiac surgery. Up
and Meta-Analyses to 30% of PCCHDs have symptoms
guidelines that consistent with a diagnosis of
resulted in 30 studies PTSD, with >80% presenting with
on the mental health clinically significant symptoms of
of PCCHDs trauma; 25% to 50% of PCCHDs
reported clinically elevated
symptoms of depression, anxiety,
or both, and 30% to 80% reported
experiencing severe psychological
distress. For comparison, the
prevalence of PTSD in the US
general population is 3.5%, with
18% meeting criteria for any
anxiety disorder in the last year,
9.5% meeting criteria for any mood
disorder, and 10% to 15% meeting
criteria for postpartum
depression.
Cousino et al. (2013)13 Meta-analysis of 13 Caregivers of children with chronic Parenting Stress
Parenting stress studies and qualitative illness reported significantly Index
analysis of 96 studies greater general parenting stress
on parenting stress than caregivers of healthy children
among caregivers of (d = .40; P < .0001). Qualitative
children with asthma, analysis revealed that greater
 cancer, cystic fibrosis, general parenting stress was
diabetes, epilepsy, associated with greater parental
juvenile rheumatoid responsibility for treatment
arthritis, or sickle cell management and was unrelated to
disease illness duration and severity across
illness populations. Greater
parenting stress was associated
with poorer psychological
adjustment in caregivers and
children with chronic illness.
October et al. (2020)22 39 parents of children 35 of 39 (89.7%) reported at least Decisional
Decision-making and needing tracheostomy; some decisional conflict, most conflict survey at
regret 25 of 39 completed all commonly from feeling the time of
surveys uninformed and pressured to decision,
decide. At 2 weeks, 13 of 25 (52%) decisional regret
parents reported regret, which at 2 weeks and 3
increased to 18 of 25 participants months after the
(72%) at 3 months. Regret placement and
stemmed from feeling uninformed, QOL surveys
ill-chosen timing of placement, and
perceptions of inadequate medical
care. With time, the QOL scores
declined. QOL was impacted by the
overwhelming medical care and
complexity of caring for a child
with a tracheostomy, financial
burden, and effect on parent’s
psychosocial health. The decision
to pursue tracheostomy among
parents of critically ill children
comes with conflict, with
worsening regret and QOL over
time.
Rennick et al. (2019)21 Parents of CMC who Parents reported being expected Interview
Experiences during were admitted to PICU to continue providing expert care
hospitalization during PICU admission but felt
their knowledge and expertise
were not always recognized by
staff.
Lord et al. (2020)24 Qualitative study of 13 Parents consistently raised the Interview
ACP and end-of-life care bereaved caregivers of child’s existing medical and
CMC technology supports as well as the
Thematic analysis and degree of prognostic uncertainty
inductive approach as key factors of ACP. The family’s
experiences with their child’s prior
life-threatening events emerged
repeatedly as a theme that played
a key role in informing ACP. Many
parents described a feeling of
relative shock when their child’s
death happened, although they
had experienced multiple life-
threatening events in the past. The
feeling of experiencing multiple
losses after the child’s death was
shared strongly among participants
along with loss of the presence of
health care providers in their lives.
Abbreviations: ACP, advance care planning; CMC, children with medical complexity; FIM, Family Impact Module; HRQOL,
health-related QOL; PCCHD, parent of children with critical congenital heart defects; PICU, pediatric intensive care unit;
PTSD, posttraumatic stress disorder; QOL, quality of life.
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