The health care landscape has changed dramatically over the last 20 years. Family-centered care, patient-centered medical homes, and shared decision-making are no longer just distinguishing factors for primary care practices but instead are now mandatory benchmarks.1 Health care spending increases have led to new payment models focused on quality and coordinated health care, and especially on a small percentage of high utilizers of health services.2 Additionally, new health information and treatments are increasing rapidly, as is the general public's access to health information.3 These changes have shifted the focus of health care from provider-centered to patient- and family-centered.
In addition to policy changes, pediatric practice has shifted from waiting rooms filled with communicable disease to greater numbers of children with chronic diseases and using medical technology.1,4 One growing population is children with medical complexity (CMC). These are children who have complex chronic illness affecting multiple organ systems leading to significant functional impairment and fragility. Although CMC are responsible for up to 30% of pediatric health care costs, they present a unique opportunity to redesign health systems by engaging patients and their families.2,5
Implementing policy and practice changes requires accepting patients and families as participants in their own care. In the examination room we can incorporate shared decision-making, letting the family's goals and priorities for their child govern health care decisions (see article by Lee et al.6 in this issue). Medical documentation becomes family-facing using a shared plan of care created and used by families, pediatricians, and specialists. Organizations can use human-centered design, an approach starting with empathy toward patients and families, to design organizations that are usable, relatable, and desirable for families.4,7 Parents of CMC are ideal stakeholders in the human-centered design and operation of pediatric practices because of their unique knowledge, perspective, and family-centered advocacy.8
Parents as Partners
Parents serve as the primary source of knowledge regarding their child—including likes and dislikes, communication, functional capabilities, and diagnoses, prognosis, and treatments. Creating a care map with parents of CMC is a useful tool to identify the many entities involved in their child's life, including medical conditions, treatments, health insurance, medication and equipment coverage, financial and social service resources, financial assistance programs, school services, and respite to name a few.8–10 Parents of CMC report the burden of being a conduit for communication between the child's primary care physician and specialists.11,12 Caring for CMC often includes multiple trips to the doctor, careful budgeting of time and finances, medication and nutrition administration, and learning to operate and care for medical technology such as a tracheostomy, gastrostomy tube, or mechanical ventilator. Parents of CMC report spending up to 11 hours per week on care coordination and 20 to 40 hours per week on their child's direct care.13 Despite this intimate involvement with their child's care, parents of CMC frequently describe feeling left out of their child's care decisions or not being heard when voicing concerns about their child's medical care.14–16
Having a CMC in the home has a profound effect on family functioning and relationships.8 Parents often struggle to present a united front when navigating family goals and difficult decisions and to create equity among siblings when so much time and money must go toward meeting the CMC's needs. To add to these difficulties, respite opportunities are infrequent or absent, limiting leisure time.8 Caring for CMC often requires one or both parents to leave employment to provide care for their child, causing further financial strain and stress.13 Through all this, many parents of CMC learn to advocate strongly for themselves and their families. As parents gain experience, many begin to evaluate systems of care using family-centered principles, defined by the Institute for Health Improvement as “transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one's person, circumstances, and relationships in healthcare”.3 Many parents have a strong desire to ease the caregiving journey for other families and a readiness to engage as partners at all levels of the health system, from the examination room to national advocacy.
Patient Engagement Models
There are many systems for assessing patient and family engagement in health care. Some measure patient/family engagement with their own care, such as the widely used Patient Activation Measure and the less-studied Parent-Patient Activation Measure, which classify engagement into four levels: (1) belief that an active role is important, (2) confidence and knowledge to take action, (3) taking action, and (4) staying the course under stress.17,18
Family Voices developed the Family Engagement in Systems toolkit and Family Engagement in Systems Assessment Tool (FESAT).19 The FESAT provides a framework for measuring and improving family engagement in four domains: (1) commitment (family engagement is a central value), (2) transparency (providing access to needed information and support), (3) representation (engaged families represent the community demographically), and (4) impact (what has changed as a result of family engagement).
The Dimensions of Family Engagement framework proposed by Knafl et al.20 asks three questions related to intervention design: (1) focus (what is the intervention's goal?); (2) structure (who are we engaging and is anyone intentionally excluded?); and (3) level (is stakeholder involvement passive, active, or integral to intervention design?).
We chose to use the Patient Engagement in Redesigning Care Toolkit (PERCT), version 2.0 model to outline our experiences, common pitfalls, and opportunities for growth in working with CMC and their families.21 The PERCT model outlines 5 levels of patient/family engagement, ranging from traditional hierarchical approaches in which the family is a passive recipient of information to true participation by families in directing the health care organization. We have chosen this model due to its practical use for organizations to easily identify their current level and see opportunities to further engage families.22
The Milwaukee Program at Children's Wisconsin uses a tertiary center–primary care partnership model to provide CMC team-based comprehensive medical co-management and care coordination services. The program has evolved and grown over the last 18 years, expanding family engagement through the PERCT categories.
Applying Perct to Pediatric Practice
Category 1: Inform/Educate
This is the most basic type of engagement, and it is essential for the health care team to communicate health information such as diagnosis and treatment plan to the family. At this level, information is provided without significant two-way interaction, such as by using brochures, posters, or newsletters.
Risks and pitfalls. The inform/educate level assumes that families open mail, read it, remember important details, and care about the information provided. Without the opportunity for families to provide feedback, we are unsure whether learning took place or was acted upon. There is a risk of introducing unconscious or conscious biases and providing culturally insensitive or inappropriate information.
Strengths and opportunities. The widespread adoption of electronic health records allows families access to information about their own child. Most families start here, and many remain at this level, with learning and receiving information as their primary activities.10 Information dissemination methods include text messaging, social media, mailed flyers and letters, and websites.
Complex care program experience. The Milwaukee Program has used several methods to provide information and education. This is often specific to the CMC, such as providing information during appointments and following up with written notes and shared plan of care. We provide information about the program by mailed newsletters with profiles of new care team members, notices about program activities or changes, and information about community resources. We also sponsor a Facebook page for program families to share articles, resources, and events. We provide access on the hospital website to teaching tools including the Bridge to Independence curriculum for families.23
The Coordinating and Optimizing Resources Effectively (CORE) program at Stanford Children's Health offers families more than 50 self-management modules developed by parent mentors, focused on practical knowledge such as how to travel with CMC, communicating effectively with providers, and navigating financial support. Parents can choose to complete the modules that interest them.24
Category 2: Gather
At this level, patients and families move from recipients to informers, providing feedback and opinions via surveys or suggestion box. Common surveys used with families assess patient experience, quality of life, and program evaluation. Although communication goes both ways, the power still lies with providers to decide what to ask, interpret the responses, and act on feedback.
Risks and pitfalls. Surveys must be chosen carefully; using established validated surveys that don't ask the right question and creating a new unvalidated survey both present risks. Fewer measures are validated for pediatric than adult populations, with even less for CMC. Surveys often have low response rates, making them hard to interpret. Providers risk bias by asking about topics where they perform well and omitting questions that may show a need for improvement. It may be tempting to dismiss negative comments, especially with low response rates. Conversely, only responding to “squeaky wheels” may lead to changes that cater to a few rather than most patients and families.
Strengths and opportunities. Using standardized measures allows comparison to regional and national programs. Patient and parent feedback is particularly useful for process measures and patient-centered outcome measures to identify what works. Surveys also present an opportunity to involve more families, as they can participate remotely without a large time commitment.
Complex care program experience. We have used standardized surveys to compare responses over time. In one example, few parents initially responded that they had received a shared plan of care, even though each family is sent their care plan after each visit. Subsequent survey results improved after implementing a simple change to identify the information as the family's plan of care and discussing how to use it. Low response rates can adversely affect the validity of the results but achieving higher response rates can be time consuming and may require meeting the family at point-of-care to complete the survey. Families, however, rightfully complain that they feel “over-surveyed” by the health care system due to their multiple contacts and become less motivated to participate.
Category 3: Discuss
This is a two-way dialogue between families and program staff, such as focus groups, interviews, or one-on-one feedback.
Risks and pitfalls. Preparing for focus groups or interviews, carrying them out, and analyzing results takes significant time and effort. The focus group or interview guide needs to be carefully planned to address the topics of interest while remaining open-ended. A skilled facilitator is essential to make sure all feel free to speak, and families might feel more comfortable sharing sensitive information with an interviewer rather than a group of peers. Gathering a representative sample may be difficult, as families with more resources are better able to participate than those with barriers such as transportation, lack of caregiving support, and less free time.
Strengths and opportunities. Interviews and focus groups offer an opportunity to receive open feedback about what is important to patients and families. Groups of families and health care providers offer an opportunity to use iterative prototyping, a human-centered design concept where families interact with ideas or “drafts” of program changes to provide feedback prior to moving forward with a change.25
Complex care program experience. The Milwaukee Program has held focus groups when considering changes to program structure and services, asking families which aspects of the program to keep. At a time when the program was questioning the effect of inpatient rounding (the practice of visiting all patients who were admitted from the emergency department the previous day) on care outcomes, families unanimously stated that this was one of the most important program services. As a result, the authors undertook quality improvement projects with hospitalist, critical care and subspecialty colleagues to increase efficiency and helpfulness of inpatient rounding for all involved.
Category 4: Involve
At this stage, families become advisors, serving on advisory councils or as nonvoting committee members.
Risks and pitfalls. Representation continues to be an issue; consider advisory groups representing culturally diverse groups, such as Spanish-speaking families. As caregivers of CMC, even the most well-intentioned parents may not be able to consistently participate as their child's condition and care needs change. Providers must also manage their own biases around which parents have enough expertise to join. It can be challenging for the program team to allow families open access to information about internal processes. Institutional rules and practices may limit the role of family advisors and what they may do. Like with any team, clear communication of the Advisory Group's mission, expectations, and responsibilities is essential. Closed groups have their own jargon and understandings, and often families come to the table with their own agenda and purposes for the group, which can lead to personality conflicts and disagreements. Sharing how institutional processes work is helpful, as family members may want change to occur faster than is possible in a large institution.
Strengths and opportunities. Incorporating families as advisors provides programs with valuable feedback about processes working well and when improvements are needed. This feedback at the outset of planning and design allows programs to allocate resources where they will be most helpful. Ultimately, having families as advisors improves family satisfaction and allows for proactive rather than reactive strategic planning. Compensating caregivers for their time and unique expertise reflects the value of their meaningful contributions and time.
Complex care program experience. Our advisors meet quarterly to receive program updates and give input about topics related to their experiences caring for a child with complexity, eg, dealing with multiple medications. They often review and provide feedback on letters or surveys before they are sent to all program families. Advisors are invaluable advocates for the need for social support, recreation, and fun activities that all families with CMC deserve. We have found it helpful to have this group of committed parents meet regularly rather than recruiting new people every time we need family input.
Category 5: Partner
In this category, families become full participants on governance boards, design teams, improvement plan work groups, or clinical research teams. Just as we would not implement program/practices changes without nurse or physician input, program design or improvement should not occur without families.
Risks and pitfalls. Representation issues continue, as often parents can only commit to this level of involvement when their children have become more medically stable and they have external caregiving support. Although they often have advocacy experience, families may vary in their ability to continue empathizing with others at earlier stages of their care journey. This partnership category requires institutional buy-in from the top down and an infrastructure to support parents as partners.
Strengths and opportunities. Hiring parents as program employees is one approach to partner with families, creating job responsibilities, commitment from both the program and family partner, and payment structure. Parents ready for this level of engagement have invaluable experience and a desire to help other families.
Complex care program experience. The Milwaukee Program has only reached this level on select projects, with parents paid as partners on research and quality improvement projects. We have also had opportunities to partner with existing parent advocacy organizations such as Family Voices of Wisconsin. The CORE program at Stanford created a job called “parent mentor” with defined roles and scope of work. The Stanford positions are salaried jobs with full benefits. These parent mentors participate as equal members of the complex care team and are involved in the evaluation of families. In addition, they assist in care coordination, run the self-management program, head the complex care parent advisory group, participate in more than 17 parent advisory groups, and are members of the Stanford program's Governing Board.
It is important to note that whereas the PERCT model describes distinct categories of family engagement, a practice or clinical program can employ multiple categories simultaneously. Each provides opportunities to invite families into an aspect of a program, while helping the family caregiver deepen their own knowledge, skillset, and growth capacity.
Increasing family engagement is not always easy. The higher PERCT categories require the health care team to become more vulnerable and flexible. This may mandate culture change at the highest level of health care organizational leadership, with both the organization and family partners accepting some risk. Health care in general can be slow to change even with overwhelming evidence that it will be beneficial, and this applies to fostering family engagement. Providers may feel uneasy about changing models of care, with an instinct to dismiss critics of the established ways of doing things. Likewise, it takes time for individual families to grow their skills, gain confidence in their expertise, and feel comfortable progressing toward full engagement.
There is tremendous opportunity to engage families with CMC in health care. This engagement can take on many forms, from advocating for their child and partnering to develop their child's care plan, to providing feedback about programmatic decisions, to participating in the governance, planning, and design of the health care system. Taking advantage of this opportunity requires changes both at the individual pediatrician and the health care system levels. Just as family-centered care is the ideal standard, we hope that over time family engagement will be used by every organization in an effort to get to true value: better health outcomes for children and optimal wellness for their families.
- Rao SK. Utilization management in the changing health-care environment. Clin Chim Acta. 2014;427:109–110. doi:10.1016/j.cca.2013.09.036 [CrossRef] PMID:24084508
- Agrawal R, Hall M, Cohen E, et al. Trends in health care spending for children in Medicaid with high resource use. Pediatrics. 2016;138(4):e20160682. doi:10.1542/peds.2016-0682 [CrossRef] PMID:27633920
- Denmark D, Olson D. A communications canvas to improve and individualize patient engagement in healthcare systems redesign. Paper presented at: Proceedings of RSD3, Third Symposium of Relating Systems Thinking to Design. ; October 15–17, 2014. ; Oslo, Norway. . http://openresearch.ocadu.ca/id/eprint/2073/
- Matheson GO, Pacione C, Shultz RK, Klügl M. Leveraging human-centered design in chronic disease prevention. Am J Prev Med. 2015;48(4):472–479. doi:10.1016/j.amepre.2014.10.014 [CrossRef] PMID:25700655
- Fayed N, Guttmann A, Chiu A, et al. Family-provider consensus outcomes for children with medical complexity. Dev Med Child Neurol. 2019;61(9):1093–1100. doi:10.1111/dmcn.14110 [CrossRef] PMID:30536803
- Lee KJ, Hill DL, Feudtner C. Decision-making for children with medical complexity: the role of the primary care pediatrician. Pediatr Ann. 2020;49(11):e474–e478. doi:10.3928/19382359-20201013-01 [CrossRef]
- Kuo DZ, Ruud C, Tahara DC. Achieving care integration for children with medical complexity: the human-centered design approach to care coordination. Accessed October 12, 2020. https://www.lpfch.org/publication/achieving-care-integration-children-medical-complexity-human-centered-design-approach
- Allshouse C, Comeau M, Rodgers R, Wells N. Families of children with medical complexity: a view from the front lines. Pediatrics. 2018;141(suppl 3):S195–S201. doi:10.1542/peds.2017-1284D [CrossRef] PMID:29496970
- Antonelli R, Lind C. Care mapping: an innovative tool and process to support family-centered, comprehensive care coordination. Presented at: Annual Primary Care Innovation Conference of the Harvard Medical School Primary Care Center. ; October 2012. ; Boston, MA. .
- Ranade-Kharkar P, Weir C, Norlin C, et al. Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN). J Am Med Inform Assoc. 2017;24(5):933–941. doi:10.1093/jamia/ocx023 [CrossRef] PMID:28371887
- Stille CJ, Primack WA, McLaughlin TJ, Wasserman RC. Parents as information intermediaries between primary care and specialty physicians. Pediatrics. 2007;120(6):1238–1246. doi:10.1542/peds.2007-1112 [CrossRef] PMID:18055672
- Golden SL, Nageswaran S. Caregiver voices: coordinating care for children with complex chronic conditions. Clin Pediatr (Phila). 2012;51(8):723–729. doi:10.1177/0009922812445920 [CrossRef] PMID:22563062
- Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165(11):1020–1026. doi:10.1001/archpediatrics.2011.172 [CrossRef] PMID:22065182
- Denis-Larocque G, Williams K, St-Sauveur I, Ruddy M, Rennick J. Nurses' perceptions of caring for parents of children with chronic medical complexity in the pediatric intensive care unit. Intensive Crit Care Nurs. 2017;43:149–155. doi:10.1016/j.iccn.2017.01.010 [CrossRef] PMID:28539204
- Pelentsov LJ, Fielder AL, Esterman AJ. The supportive care needs of parents with a child with a rare disease: a qualitative descriptive study. J Pediatr Nurs. 2016;31(3):e207–e218. doi:10.1016/j.pedn.2015.10.022 [CrossRef] PMID:26651231
- Lin JL, Cohen E, Sanders LM. Shared decision making among children with medical complexity: results from a population-based survey. J Pediatr. 2018;192:216–222. doi:10.1016/j.jpeds.2017.09.001 [CrossRef] PMID:29102046
- Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39(4 Pt 1):1005–1026. doi:10.1111/j.1475-6773.2004.00269.x [CrossRef] PMID:15230939
- DeCamp LR, Showell N, Godage SK, et al. Parent activation and pediatric primary care outcomes for vulnerable children: a mixed methods study. Patient Educ Couns. 2019;102(12):2254–2262. doi:10.1016/j.pec.2019.07.004 [CrossRef] PMID:31288957
- Hoover C, Paladino MJ, Dworetzky B, Wells N. Issue brief: a framework for assessing family engagement in systems change. Family Voices. Updated April 2018. Accessed October 22, 2020. http://familyvoices.org/wp-content/uploads/2018/10/FamilyVoices_LPFCH_assessing_family_engagement_April2018.pdf
- Knafl KA, Havill NL, Leeman J, Fleming L, Crandell JL, Sandelowski M. The nature of family engagement in interventions for children with chronic conditions. West J Nurs Res. 2017;39(5):690–723. doi:10.1177/0193945916664700 [CrossRef] PMID:27596106
- Davis S, Berkson S, Gaines ME, et al. Implementation science workshop: engaging patients in team-based practice redesign - critical reflections on program design. J Gen Intern Med. 2016;31(6):688–695. doi:10.1007/s11606-016-3656-8 [CrossRef] PMID:26976290
- Davis S, Gaines ME, Pandhi N. Patient Engagement in Redesigning Care toolkit, version 2.0. Center for Patient Partnerships, UW Health, Primary Care Academics Transforming Healthcare, UW Health Innovation Program; 2017. Accessed October 12, 2020. http://www.hipxchange.org/PatientEngagement
- Conceicao SCO, Johaningsmeir S, Colby H, Gordon J. Family caregivers as lay trainers: perceptions of learning and the relationship between life experience and learning. Adult Learn. 2014;25(4):151–159. doi:10.1177/1045159514546216 [CrossRef]
- Children's Hospital Association. Hub model: a different approach to caring for children with medical complexity. Accessed October 12, 2020. https://www.childrenshospitals.org/newsroom/childrens-hospitals-today/articles/2017/10/hub-model-a-different-approach-to-caring-for-children-with-medical-complexity
- Roberts JP, Fisher TR, Trowbridge MJ, Bent C. A design thinking framework for healthcare management and innovation. Healthc (Amst). 2016;4(1):11–14. doi:10.1016/j.hjdsi.2015.12.002 [CrossRef] PMID:27001093