Abstract
Despite a growing population of children with medical complexity, little is known about the current quality of pediatric home healthcare. The objective of this study was to characterize the quality of pediatric home healthcare experienced by primary family caregivers (parents) and healthcare providers of children with medical complexity. Semi-structured, in-depth key informant interviews of 20 caregivers and 20 providers were conducted and analyzed for factors affecting home healthcare quality using the Institute of Medicine’s quality framework (effective, safe, patient-centered, timely, equitable, and efficient). System complexity, insurance denials, and workforce shortages affected patients’ ability to establish and maintain access to home healthcare leading to hospital discharge delays and negative family impacts. When home healthcare was accessible, respondents experienced it as effective in improving patient and family daily life and minimizing use of emergency and hospital services. However, respondents identified a need for more pediatric-specific home healthcare training and increased efficiencies in care plan communication. Overall, home healthcare was not perceived as timely or equitable due to access barriers. This study provides a new conceptual framework representing the relationship between home healthcare quality and outcomes for children with medical complexity for future evaluations of quality improvement, research, and policy initiatives.
Children with medical complexity (CMC) are a small but growing population requiring intensive health service utilization and/or technology assistance to achieve optimal health outcomes (Cohen et al., 2011). Examples of CMC include a young child who needs a portable ventilator to live at home due to lung damage from premature birth or a teenager with muscular dystrophy who has significant weakness requiring help with bathing, dressing, and transfers. In recent decades, family advocates and providers have supported shifting daily care of CMC away from the institutional setting to home healthcare to provide comprehensive care within a nurturing environment while maximizing a child’s capabilities (Elias, Murphy, & Council on Children with Disabilities, 2012). Home healthcare services used by CMC can range from private duty nursing, which delivers ongoing, hourly clinical care services, to personal care services, in which provider help with activities of daily living. Home healthcare may also encompass the equipment and housing modifications necessary for a child to live at home (Guidelines for Pediatric Home Health Care, 2009).
Guidelines by the American Academy of Pediatrics and the American Thoracic Society promote care of CMC at home and suggest competencies for home healthcare providers (Elias, Murphy, & Council on Children with Disabilities, 2012; Guidelines for Pediatric Home Health Care, 2009; Sterni et al., 2016). However, family caregivers (i.e. parents, grandparents, etc.) of CMC report physical, emotional, and financial challenges when caring for their child at home, particularly for children with medical technology dependence such as a home ventilator (Wang & Barnard, 2004; Meltzer et al., 2010). While home healthcare may be more cost-effective than caring for technology-dependent children in institutional settings, this may be due to shifting of financial and labor costs to families when home healthcare is not sufficiently available (Simpser & Hudak, 2017).
Recent studies have shown that 1 in 20 children are discharged after hospitalization to some level of home healthcare, and even brief periods of home care services may lower readmission rates (Berry et al., 2016; Gay et al., 2016). However, existing research on the current quality of pediatric home healthcare is insufficient to develop evidence-based quality assessment measures of home healthcare for CMC. Therefore, the objective of this study was to characterize the quality of home healthcare experienced by caregivers and healthcare providers for CMC. This information was then used to develop a conceptual framework examining the relationship between home healthcare quality – including its access – and outcomes for CMC to guide evaluation of future quality improvement, research, and policy initiatives.
Methods
Study Design
One-on-one in-depth key-informant interviews were conducted for this qualitative study by the primary investigator (CF) (Miles, 2014). Interviews were performed by phone or in-person at a regional freestanding academic children’s hospital from April to October 2016 with institutional review board approval. During these interviews, data were collected from participants on multiple topics related to community-based care received by CMC, however, the data presented here only include responses to questions about home healthcare that have not been previously described.
Study Population
Caregiver Recruitment
Patients (0–17 years of age) who might be receiving ancillary healthcare services were identified at our hospital’s neurodevelopment clinic, affiliated general pediatric clinic, or inpatient service by chart review. Patients were considered CMC if they had a complex chronic disease (Simon et al., 2014). To be eligible, a patient must have received at least three outpatient ancillary care visits of any type (e.g. private duty nursing, rehabilitative/habilitative therapies) within the past year. Caregivers of eligible patients were then approached and consented for participation and asked about these range of services. Exclusions included caregivers with limited English proficiency and/or foster children. Caregivers were purposively sampled to increase diversity in race/ethnicity, geography, and insurance type (Miles, 2014; Hailu A, 2013).
Provider Recruitment
Providers were eligible if they: a) directly provided home healthcare (e.g. home health nurse); b) managed home healthcare (e.g. agency director); c) facilitated home healthcare access (e.g. physician, social worker); or d) participated in statewide home healthcare programing (e.g. Developmental Disabilities Administration). Providers were recruited by email invitation and purposively sampled across a range of job titles and practice settings.
Interview Guide Development
Semi-structured interview guides were developed after literature review and revised for understandability and topic relevance by five non-participating providers and a parent of a CMC, then questions were tailored in real-time to the participant’s role and, if relevant, the patient’s ancillary healthcare use (Supplemental Digital Content 1). The Institute of Medicine’s (IOM) six quality domains (effective, safe, patient-centered, timely, equitable, and efficient) informed the quality-related questions (Institute of Medicine, 2001).
Analysis
All interviews were transcribed, anonymized, and then coded with qualitative software (Dedoose, V7.5.9, © 2016) using applied thematic analysis, which is a rigorous inductive approach used to represent study participants’ experiences by identifying themes from textual data (Guest, 2006). Questions related to rehabilitative and habilitative (therapy) services were analyzed separately and are not included in the current study. Directed content analysis was also used to organize thematic concepts within the a priori IOM quality framework (Hsieh & Shannon, 2005). Analysis was performed by a multidisciplinary team with expertise in general pediatrics (CF), pediatric rehabilitation medicine (MF), neurodevelopment social work (LW), and medical anthropology (EJF).
Coding
Initial open coding was performed to identify factors facilitating quality; barriers to higher quality; characteristics of home healthcare by IOM quality domains; and impact of home healthcare on patient and family outcomes (Miles, 2014; Corbin, 2015). Four caregiver and four provider transcripts were coded using the initial codebook. Analysis team members then revised the codebook over seven iterations until complete agreement of coding definitions was reached. Two coders (CF, MF) then independently coded all of the remaining transcripts with the finalized codebook.
Thematic Analysis
While interviews were conducted, the analysis team met over ten sessions to compare coded excerpts and iteratively summarize the key factors affecting the quality of home healthcare and how they relate to patient and family outcomes. Coded excerpts were reviewed until identified themes captured the majority of the data (Guest, 2006). Characteristics of high-quality pediatric home healthcare and barriers to achieving higher quality also were organized by IOM domain. A conceptual framework outlining the relationship between quality of home healthcare and outcomes for children with medical complexity was created (Figure 1).
Figure 1:
Conceptual Framework to Assess Quality and Outcomes of Home Health Care for Children with Medical Complexity
Patient/family factors (e.g. income) affect insurance access, which variably covers home health care. Insurance reimbursement level then drives workforce factors (e.g. wage) affecting workforce availability and training. Higher quality of home health care impacts children’s health and family daily life, which affects emergency and hospital use.
Results
Respondent Demographics
A total of 18 caregiver interviews and 20 provider interviews were conducted prior to achieving agreement among the analysis team that the identified themes captured the majority of the data (Guest, 2006). Two additional caregiver interviews were conducted to increase the number of non-white caregiver participants, for a final sample of 20 caregivers (Supplemental Digital Content 2 and 3).
Conceptual framework
Based on themes identified from the qualitative interviews, we developed a conceptual framework outlining the relationship between home healthcare quality and outcomes for CMC (Figure 1). We found interplay between how patient/family, insurance, and workforce factors affect the quality of the home healthcare received. For example, patient/family factors, such as income, education level, and language impact equitable access to adequate insurance coverage for home healthcare services and supplies. Insurance coverage and reimbursement levels then drive workforce factors such as home healthcare provider availability (equitable access) and training (effectiveness of services), both key aspects of home healthcare quality. Subsequent availability and receipt of high-quality home healthcare then influences CMC health and family wellbeing as well as CMC emergency room and hospital use. Details of how these factors interplayed to affect home healthcare are outlined below.
Factors Affecting Quality of Pediatric Home Healthcare
Patient/Family Factors
The patient’s level of medical complexity, particularly need for a tracheostomy and/or mechanical ventilation, increased the likelihood of insurance approval of home healthcare coverage. Social determinants of health including family income, state of residence, rural/urban location, language, and education level impacted how caregivers accessed home healthcare. Generally, the difficulty of navigating how to obtain state-based waivers and/or negotiate insurance denials was a key barrier to accessing home healthcare. Caregivers typically relied on hospital-based care coordinators or outpatient palliative care nurses with specialized knowledge of home healthcare to navigate these barriers. Developmental Disabilities Administration caseworkers were variably helpful due to worker turnover and competing priorities. Interviewees had concerns regarding equity of access to home healthcare especially for low income, lower educated, and LEP families.
“It was really hard to figure out how to even apply for a waiver program and what was available for someone like [my daughter]…I’m a well-educated person, and if it was really challenging for me, someone who might be less [educated] may struggle and never get the resources they need.”
- Mother 1
Insurance Coverage
While patient/family factors were perceived to drive insurance access, insurance plans did not consistently cover home healthcare compared to hospital-based services. Public insurance (i.e. Medicaid) was perceived to provide more comprehensive coverage than private insurance, however, because Medicaid reimbursed at lower rates, home healthcare agencies were thought to preferentially enroll privately insured patients.
“… It’s well understood that [home health agencies] prefer private insurance cases over Medicaid cases [because of the hourly rate]. If the Medicaid family has open nursing shifts and a private insurance case has open shifts, probably the private insurance case is going to get the nurses…”
- Care coordinator
Challenges with timeliness of receiving needed supplies and establishing private duty nursing or personal care services were consistently reported. Delays in insurance approvals for home healthcare supplies, including durable medical equipment ranging from diapers to electric lifts, were routine. Some caregivers also reported challenges securing Medicaid contracts for home modifications. Regulations restricting state-based waivers to Medicaid-contracted providers and contractors limited options for purchasing pediatric-specific durable medical equipment and conducting home modifications, especially in rural areas. Caregivers and home healthcare agencies reported using their own funds to “fill the gap” for basic supplies that were not covered (e.g. gloves).
“I mean it took almost a year [for my son] to get his first wheelchair and by that time he had had a pressure ulcer on his back, and he had to be in the hospital for months and months…He’s gotten the supplies eventually but having to jump through all the hoops was really hard. It’s takes weeks and so I have to figure out how to get the supplies in the meantime.”
- Mother 14
Respondents perceived that allocation of private duty nursing or personal care hours by caseworkers could vary year-to-year, but not necessarily in response to a child’s changing needs. Caregivers of CMC who had moved noted state-to-state variability in home healthcare coverage, especially private duty nursing hours. Some interviewed caregivers and providers noticed referring providers sometimes held off on referrals because of the perception that a child’s needs were not great enough to receive private duty nursing services or, in the setting of a worker shortage, that the child wouldn’t be able to get the services anyway.
“I think (clinical) providers tend to have sort of a public health viewpoint of resources; meaning, “We have this limited pool or resources we need to allocate efficiently so that we help the people who need the help the most.”…I think lawyers can bring a slightly different perspective to that and help doctors think about (legal) entitlement (to services)…”
- Attorney
Workforce Factors
Lower insurance reimbursement for home healthcare service hours compared to hospital-based care was perceived to drive an absolute shortage of home healthcare providers and low workforce retention. Respondents working in home healthcare felt that this may be due to the perception that other nursing opportunities have higher prestige, more variety, and fewer night/weekend hours. Other identified barriers were: wariness of working amongst “difficult” family dynamics, working in a perceived “unsafe” locale, and commuting to either rural or heavily urban areas.
“Right now we’re low with nurses. A lot of hospitals are offering jobs to even new students…And, even once [a family] gets a nurse it’s not guaranteed [the nurse will stay]. I guess that’s the biggest issue. You bring [the nurse] in and make sure they’re trained and then it could work for two weeks, and the nurse may come back to us and say, “Oh, I can’t do that because I feel too alone.”
- Home nurse manager
As a result, families with insurance-approved service hours reported gaps in home healthcare, particularly at night, and hospitalized patients experienced delays in discharge. Provider turnover led families to re-train providers and/or to work with multiple home healthcare agencies to cover the needed shifts.
“We went home [from the hospital] with pretty much full nursing, and within a couple weeks, it went down to one nurse a couple days a week, so we’ve managed. But even now, I only have days covered, there’s no sign of any night nurses currently, so it’s always been a challenge.”
- Mother 10
On the job training of private duty nursing by caregivers was described as routine. Interviewees had safety concerns regarding the level of private duty nursing training, especially for CMC with tracheostomies and/or mechanical ventilation, and noted the need to balance a safe hospital discharge with adequate home healthcare coverage. Concerns regarding the quality of community airway safety training led to a multidisciplinary hospital initiative to provide education outreach.
“I think the basic nursing skills are medications, basic care, moving patients, repositioning, feeding pumps. [The basic care is done well], but when you get down to [pediatric airway] emergencies that is where the nurses lack.”
- Care coordinator
Due to the many workforce challenges, respondents often characterized the workforce as “mission-driven” by providers who were intrinsically driven towards home-based work. Some caregivers reported cycling through providers until finding a long-term relationship with specific providers who created a “team” and became “part of the family” for extended periods of time.
“In the beginning of my career, I wouldn’t have chosen to do home health if I got paid half (as much as other jobs). Are you kidding me? Unless it was truly a calling.”
- Nurse
“[Our nurse] became more than just a nurse…she’s “Grandma”…She’s been with our family so long.”
- Mother 7
Characteristics of High-Quality Pediatric Home Healthcare
Characteristics of high-quality pediatric home healthcare and barriers to achieving higher quality are organized by IOM domain and shown in Supplemental Digital Content 4. Respondents experienced home healthcare as effective in preventing or minimizing acute illnesses through execution of a patient’s plan of care and early identification and treatment of acute illness. Home healthcare providers ideally would also facilitate care coordination with primary care physicians or specialists. Care was perceived as safer when home healthcare was sufficiently staffed to avoid caregiver exhaustion and home healthcare providers had received emergency training. Caregivers strongly emphasized that they valued providers who could provide individualized, reliable, developmentally-appropriate care and respected family privacy. Timely receipt of home healthcare services and equipment was desired. Respondents identified the need for equitable home healthcare for CMC regardless of family characteristics (e.g. educational level, race/ethnicity, language). Lastly, efficient communication of changes in the plan of care during and after hospitalizations or specialty visits was needed.
Patient and Family Outcomes
Children with Medical Complexity Health
Caregivers reported that home healthcare enhanced their child’s daily life through increasing participation in home and school activities. Private duty nursing, in particular, was perceived to improve the children’s health through daily symptom evaluation and management.
“Having the equipment in place and people who know how to use them has kept [child’s name] out of the hospital because we catch things earlier, and they know how to treat her… I don’t think that without it she’d be able to stay this healthy. I think she’d wind up in the hospital more frequently because I don’t have the energy to maintain that kind of regimen or focus the nurses provide and bring to the days.”
- Mother 1
Family Wellbeing
Home healthcare afforded caregivers time for self-care and to attend to their other children and household responsibilities. Caregivers reported that inadequate access to home healthcare led to caregiver physical and emotional exhaustion, financial insecurity, and social isolation; sibling wellbeing also was impacted.
“The [out-of-pocket] cost of [nursing] is prohibitive…[Child’s name] has such medical [complexity] that unless our friend who is a nurse is willing to come over [we can’t leave home]. It gets difficult to not get resentful, just because it’s overwhelming… And then unfortunately for our son, who’s older, he misses out on a lot of things.”
- Mother 13
Lack of alternative appropriate childcare for CMC meant that a caregiver, usually the mother, would limit or stop workforce participation. Protective factors included patients who were dually insured or had family members able to fill care gaps. Home healthcare did negatively impact some caregivers due to feelings of lack of privacy and guilt.
Emergency and Hospital Use
Higher quality of home healthcare, especially reliable daily access, was also perceived to minimize emergency and hospital use by supporting caregiver wellbeing. Lack of formal respite care combined with inconsistent private duty nursing was believed to increase CMC hospital use.
“I see a lot [of caregivers] that just may need respite care because there’s no nurse at night, and they might have to be up for three or four nights in a row with no one to take care of their child if the nurse calls in sick or something happens and the nurse can’t come in.”
- Primary care physician (rural)
Measurement of Pediatric Home Healthcare Quality
Respondents reported inconsistent or incomplete measurement of home healthcare quality. Home health agency managers noted that internal metrics typically were driven by voluntary accreditation and were not pediatric-specific. Some agencies conducted periodic home visits and administered non-validated satisfaction surveys. Caregivers occasionally recalled being surveyed, but most perceived that concerns were reactive to caregiver request or complaint rather than proactively addressed. When done, measurement of quality focused on timeliness.
“I don’t think [keeping track of quality] is being done at all and I think the metric has been more quantity than quality [such as]…how fast assessments are done and how fast we move eligible applications…”
- Developmental Disabilities Administration interviewee
Discussion
Our study found that high-quality home healthcare is perceived to improve a child’s health and daily life, minimize CMC’s acute medical crises, and support families’ daily life. Patient/family, insurance, and workforce factors impacted the quality of home healthcare received. Furthermore, our findings suggest that home healthcare quality for CMC in our state is perceived to be inadequate to meet their current needs.
Our study is concordant with a body of literature describing how patient and family factors such as social determinants of health impact access to high-quality care (Dreyer et al., 2016; Morrison et al., 2014; Oberg et al., 2016). Specifically, barriers to adequate insurance coverage may lead to a “squeaky wheel” phenomenon where caregivers and providers who advocate more receive more home healthcare, likely exacerbating disparities for disadvantaged groups.
The insurance coverage issues identified in this study are also consistent with the recently renewed American Academy of Pediatrics Policy Statement on the Financing of Pediatric home healthcare that describes how inadequate insurance reimbursement and workforce shortages impact home healthcare availability (Simpser & Hudak, 2017). Not only is home healthcare insurance coverage mandated by the Early and Periodic Screening, Diagnostic, and Treatment Law, but limiting coverage for home healthcare may be short-sighted for payers if a simple lack of home healthcare providers and supplies leads to more costly health services use (e.g. private duty nursing availability may prevent use of the hospital for respite; gloves to care for a technology-dependent child may prevent infection) (National Health Law Program at the University of Chicago, 2014). The current insurance model also undervalues healthcare that improves patient life at home (e.g. lifts, home modifications).
Our results also highlight the need for improved training opportunities for home healthcare providers to enhance their pediatric clinical skills and integrating home healthcare providers better into the “medical neighborhood” (Nageswaran & Golden, 2016). This finding is consistent with a recent study in North Carolina that found variation and deficits in the skill of private duty nursing care for CMC (Nageswaran & Golden, 2017). Tertiary care centers with expertise in advanced nursing and respiratory care as well as home healthcare coordination may provide a critical role in improving the quality of the home healthcare workforce and communication inefficiencies through innovative outreach education and case management unavailable in the community.
Previous work describing the normalization of extraordinary effort by family members to enable their child to live at home is also echoed in our study (Meltzer et al., 2010; S., October 2015; Wang & Barnard, 2004). Lack of high-quality home healthcare for CMC may contribute to negative family impacts (e.g. poorer caregiver health and under-employment) (Romley et al., 2017; Simpser & Hudak, 2017). Opportunities raised by this study include the need to better understand and measure caregiver and sibling mental health service need, identify specific barriers to respite care, and find ways to facilitate caregiver workforce participation. Interventions that target caregiver wellbeing may in fact provide an opportunity to mitigate healthcare utilization by their children, a goal which remains challenging in the CMC population (Coller at al., 2014).
Lastly, we found that the quality of pediatric home healthcare is often not measured in a standardized, validated, or pediatric-specific manner. We provide a new conceptual framework characterizing the relationship between high-quality pediatric home healthcare and outcomes for CMC organized by IOM domain that may be used to facilitate future work to address this measurement gap.
Limitations
This was a single institution study occurring in a state with a private duty nursing shortage, which may have overshadowed nuanced factors related to access. The generalizability of our results is limited by volunteer bias, however this allowed for reporting of in-depth experiences. Future research should include families with limited English-proficiency and more non-white respondents, as emergent themes from their perspectives may be different.
Conclusions
This study provides evidence for the value of high-quality home healthcare to improve CMC health and family daily life and potentially prevent emergency department and hospital use. However, significant gaps in the availability of pediatric-trained home healthcare providers and timely access to affordable home healthcare supplies raise concerns about maintaining effective and safe care for CMC at home with subsequent negative impacts on their health and their families’ wellbeing. This study also provides a new conceptual framework to guide the evaluation of home care quality and related outcomes. Such future work should focus on understanding how home healthcare quality varies across states as well as how home healthcare quality impacts hospitalization and previously unmeasured family costs.
Supplementary Material
Suggested callouts:
Recent studies have shown that 1 in 20 children are discharged after hospitalization to some level of home healthcare, and even brief periods of home care services may lower readmission rates
Social determinants of health including family income, state of residence, rural/urban location, language, and education level impacted how caregivers accessed home healthcare.
Lower insurance reimbursement for home healthcare service hours compared to hospital-based care was perceived to drive an absolute shortage of home healthcare providers and low workforce retention.
Lack of alternative appropriate childcare for children with medical complexity (CMC) meant that a caregiver, usually the mother, would limit or stop workforce participation.
Acknowledgements
We would like to acknowledge Seattle Children’s Research Institute’s Center for Child Health, Behavior and Development Hearst Foundation Fellowship Award for funding this project.
Funding Source: This study was conducted under funding from an intramural grant by the Seattle Children’s Research Institute’s Center for Child Health, Behavior and Development Hearst Foundation Fellowship Award. Dr. Fuentes’ time was supported by a NICHD grant 4K12HD001097-20.
Footnotes
The authors declare no conflicts of interest
Contributor Information
Carolyn C. Foster, Department of Pediatrics, Northwestern University, Feinberg School of Medicine, Mary Ann & J. Milburn Smith Child Health Research Program, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL.
Molly M. Fuentes, Department of Rehabilitation Medicine, University of Washington, Seattle, Washington, Seattle Children’s Hospital, Seattle, WA.
Lauren A. Wadlington, Social Work Clinical Supervisor, Department of Social Work, Seattle Children’s Hospital, Seattle, WA.
Elizabeth Jacob-Files, Qualitative Researcher, Seattle Children’s Research Institute, Seattle, WA.
Arti D. Desai, Department of Pediatrics, University of Washington, Seattle, Washington, Seattle Children’s Hospital, Seattle, WA.
Tamara D. Simon, Department of Pediatrics, University of Washington, Seattle, Washington, Seattle Children’s Hospital, Seattle, WA.
Rita Mangione-Smith, Department of Pediatrics, University of Washington, Seattle, Washington, Seattle Children’s Hospital, Seattle, WA.
References
- Berry JG, Hall M, Dumas H, Simpser E, Whitford K, Wilson KM,… O’Brien J (2016). Pediatric Hospital Discharges to Home Health and Postacute Facility Care: A National Study. JAMA Pediaticr, 170(4), 326–333. doi: 10.1001/jamapediatrics.2015.4836 [DOI] [PubMed] [Google Scholar]
- Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) - A Guide for States: Coverage in the Medicaid Benefit for Children and Adolescents, (2014). Retrieved from https://www.medicaid.gov/medicaid/benefits/downloads/epsdt_coverage_guide.pdf
- Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, & Srivastava R (2011). Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538. doi: 10.1542/peds.2010-0910 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Coller RJ, Nelson BB, Sklansky DJ, Saenz AA, Klitzner TS, Lerner CF, & Chung PJ (2014). Preventing hospitalizations in children with medical complexity: a systematic review. Pediatrics, 134(6), e1628–1647. doi: 10.1542/peds.2014-1956 [DOI] [PubMed] [Google Scholar]
- Corbin JSA (2015). Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory (Vol. 4th ed.). Thousand Oaks, CA: Sage Publications. [Google Scholar]
- Dreyer B, Chung PJ, Szilagyi P, & Wong S (2016). Child Poverty in the United States Today: Introduction and Executive Summary. Academy of Pediatrics, 16(3 Suppl), S1–5. doi: 10.1016/j.acap.2016.02.010 [DOI] [PubMed] [Google Scholar]
- Elias ER, Murphy NA, & Council on Children with Disablities. (2012). Home care of children and youth with complex health care needs and technology dependencies. Pediatrics, 129(5), 996–1005. doi: 10.1542/peds.2012-0606 [DOI] [PubMed] [Google Scholar]
- Gay JC, Thurm CW, Hall M, Fassino MJ, Fowler L, Palusci JV, & Berry JG (2016). Home Health Nursing Care and Hospital Use for Medically Complex Children. Pediatrics, 138(5). doi: 10.1542/peds.2016-0530 [DOI] [PubMed] [Google Scholar]
- Guest G (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82. [Google Scholar]
- Guidelines for Pediatric Home Health Care. 2nd ed. (2009). Elk Grove Village, IL: Academy of Pediatrics Section on Home Care. [Google Scholar]
- Hailu A, v. E. J. Guidelines for using rural-urban classification systems for public health assessment. Retrieved from https://www.doh.wa.gov/Portals/1/Documents/1500/RUCAGuide.pdf [Google Scholar]
- Hsieh HF, & Shannon SE (2005). Three approaches to qualitative content analysis. Qual Health Res, 15(9), 1277–1288. doi: 10.1177/1049732305276687 [DOI] [PubMed] [Google Scholar]
- Institute of Medicine: Committee on Quality of Health Care in America. (2001). In Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US) Copyright 2001 by the National Academy of Sciences. [Google Scholar]
- Meltzer LJ, Boroughs DS, & Downes JJ (2010). The relationship between home nursing coverage, sleep, and daytime functioning in parents of ventilator-assisted children. J Pediatr Nurs, 25(4), 250–257. doi: 10.1016/j.pedn.2009.01.007 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Miles MB HA, & Salda J (2014). Qualitative data analysis (3rd ed.). Thousand Oaks, CA: Sage Publications. [Google Scholar]
- Morrison AK, Schapira MM, Gorelick MH, Hoffmann RG, & Brousseau DC (2014). Low caregiver health literacy is associated with higher pediatric emergency department use and nonurgent visits. Acad Pediatr, 14(3), 309–314. doi: 10.1016/j.acap.2014.01.004 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Nageswaran S, & Golden SL (2016). Home Health Nurse Collaboration in the Medical Neighborhood of Children with Medical Complexity. Home Healthc Now, 34(9), 507–518. doi: 10.1097/nhh.0000000000000463 [DOI] [PubMed] [Google Scholar]
- Nageswaran S, & Golden SL (2017). Improving the Quality of Home Health Care for Children With Medical Complexity. Acad Pediatr, 17(6), 665–671. doi: 10.1016/j.acap.2017.04.019 [DOI] [PubMed] [Google Scholar]
- Oberg C, Colianni S, & King-Schultz L (2016). Child Health Disparities in the 21st Century. Curr Probl Pediatr Adolesc Health Care, 46(9), 291–312. doi: 10.1016/j.cppeds.2016.07.001 [DOI] [PubMed] [Google Scholar]
- Romley JA, Shah AK, Chung PJ, Elliott MN, Vestal KD, & Schuster MA (2017). Family-Provided Health Care for Children With Special Health Care Needs. Pediatrics, 139(1). doi: 10.1542/peds.2016-1287 [DOI] [PubMed] [Google Scholar]
- S., B. R. a. M. (October 2015). Hidden in Plain Sight California Children Using Long Term Care Services. Retrieved from https://www.lpfch.org/publication/hidden-plain-sight
- Simon TD, Cawthon ML, Stanford S, Popalisky J, Lyons D, Woodcox P,… Center of Excellence on Quality of Care Measures for Children with Complex Needs Medical Complexity Working, G. (2014). Pediatric medical complexity algorithm: a new method to stratify children by medical complexity. Pediatrics, 133(6), e1647–1654. doi: 10.1542/peds.2013-3875 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Simpser E, & Hudak ML (2017). Financing of Pediatric Home Health Care. Pediatrics, 139(3). doi: 10.1542/peds.2016-4202 [DOI] [PubMed] [Google Scholar]
- Sterni LM, Collaco JM, Baker CD, Carroll JL, Sharma GD, Brozek JL,… Halbower AC (2016). An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation. Am J Respir Crit Care Med, 193(8), e16–35. doi: 10.1164/rccm.201602-0276ST [DOI] [PMC free article] [PubMed] [Google Scholar]
- Wang KW, & Barnard A (2004). Technology-dependent children and their families: a review. J Adv Nurs. 2004 January;45(1):36–46. DOI: 10.1046/j.1365-2648.2003.02858.x [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.