Adaptive Leadership in Parents Caring for Their Children Born with Life-Threatening Conditions

Abstract

Purpose.

The purpose of this study was to chronicle the adaptive challenges and adaptive work, including emerging leadership behaviors, demonstrated over time by the parents of very young children diagnosed before birth with life threatening conditions.

Design and Methods.

A descriptive, follow-up study design was used for the current study. Following the original grounded dimensional analysis study completed in 2012, the corpus for this analysis was collected in 2014. In-depth, audio-recorded interviews were conducted with 15 families (8 couples, 7 mothers). The 15 children, born with cardiac, abdominal, and cerebrospinal anomalies, were 14–37 months old or deceased at follow-up. A directed content analysis of transcribed verbatim interviews was structured by the Adaptive Leadership framework.

Results.

Parents demonstrated a non-linear development towards adaptive leadership as they accomplished the adaptive work within intra- and interpersonal domains that was necessary to address challenges over time. Not all parents described abilities and willingness to mobilize others to do adaptive work, suggesting that adaptive leadership remained an unrealized potential.

Conclusions.

Understanding parental care of a medically at-risk child over time as a complex adaptive system, parents’ hold potential for development toward adaptive leadership and collaborative partnership within the family and with healthcare providers.

Practice Implications.

Due to improved survival rates, parents face ongoing challenges related to their children’s unpredictable and often chronic health needs. Study findings illustrate parents’ adaptive work and leadership behaviors, which can inform nursing assessments, as well as the type and timing for intervention.

Introduction

With a decades-long focus on prenatal detection and surgical intervention, considerable improvements in survival rates for infants born with life-threatening conditions affecting the cardiovascular, digestive, and/or central nervous system have been realized (Boyd et al, 2011; Fleurke-Rozema et al, 2017; Gould, Figuera, Robinson, & Reichard, 2011; Oster et al., 2013; Van Velzen et al, 2016;). As a result, attention is shifting to fetal progress in utero and to child growth and development after birth. Becoming a competent parent in this ongoing complex course of illness and medical management requires collaboration both within the family and between parents and healthcare providers.

Parents of these children are charged with expanding their emotional and cognitive capacities and mastering a multitude of new caregiving skills. There is evidence of variation in early adaptive strategies and motivations for becoming parents and co-parenting after a fetal anomaly diagnosis (McKechnie, 2013; McKechnie, Pridham & Tluczek, 2016; McKechnie, Rogstad, Martin, & Pridham, 2018; McKechnie, Tluczek & Pridham, 2015). What these parents are challenged by, and how they adapt specifically in relation to whether and to what extent they engage and collaborate as partners in care during the child’s early months and years remains less clear. Understanding a parents’ perceptions of their responses to their children’s health-related challenges, while also considering partner and family influences, is of value for generating and tailoring psychosocial interventions.

Background

Approximately 3–7 % of infants are born with congenital anomalies that are life-threatening conditions (Christianson, Howson, & Modell, 2006; Park, 2005). These children are disproportionately affected by neurological, emotional and social dysregulation, (Bragg, 2019; Howell et al, 2019; Walker & Holland, 2019) and parents by compromised mental health and caregiving burden (Skari et al., 2006; Skreden et al., 2010; Solberg et al., 2011, 2012; Woolf-King et al, 2017). A child’s serious health condition is a primary risk factor for strained intra-couple relationships and less functional families. (Coffey, 2006; Reichman, Corman, & Noonan, 2004; Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001). The risk for maladjustment in families, in particular after a fetal diagnosis of heart disease, is relevant today as affected children are surviving and growing into adulthood (Kolaitis, Meentken, & Utens, 2017; Lumsden, Smith, & Wittkowski, 2019; McKechnie, Rogstad, Martin, & Pridham, 2018; McKechnie, Pridham & Tluczek, 2016).

Research on how parents can, or have potential to address mental health needs, achieve personal or family resilience, and develop self and family management of children’s health conditions has been foundational to understanding the adaptive process and development of child care competencies (Grey, Schulman-Green, Knafl, & Reynolds, 2015; Masten, 2018; Rempel, Ravindran, Rogers, & Magill-Evans, 2013; Ryan & Sawin, 2009). To date, however, research in this area has not included descriptions of parents’ perceived challenges, the use of adaptive strategies over longer periods of time, how parents develop new behaviors to mobilize others, or how collaboration with health care providers develops. Given the extended lifespans of these children and the demonstrated variation in adaptive responses revealed to the stresses experienced by these families in the original study (McKechnie, 2013; McKechnie, Tluczek & Pridham, 2015), we suspect that the process of ongoing adaptation is relevant to the development of collaborative behaviors over time. While it is clear that families caring for children with unpredictable health trajectories engage in ongoing adaptation, how the development of new attitudes, beliefs, and behaviors evolve led us to consider the Adaptive Leadership framework as a structure for this follow up study.

Theoretical Framework

The Adaptive Leadership Framework considers individuals (patients) as complex adaptive systems, adapting both physically and psychologically to their environment through a process of adaptive work (Thygeson, 2013). Two types of challenges and corresponding work are recognized: technical and adaptive. Technical challenges are “simple or complicated problems that can be identified and specified with considerable accuracy, and are amenable to solution by experts using methods and technologies that do not require major changes to the system itself” (Thygeson, 2013, p. 664). For example, a technical challenge could include the infant’s physiological instability prompting a technical intervention of corrective or palliative surgery. Adaptive challenges, however, are “complex problems that are hard to identify or specify completely, and that require the patient to learn new attitudes, beliefs, and behaviors” (Thygeson, 2013, p. 664). As such, adaptive challenges cannot be resolved by outside experts or technical interventions; only the system itself (the patient) can do the adaptive work required to overcome adaptive challenges. In the context of this study, an adaptive challenge is recognized by the difference found between what a parent is doing or expecting, and what needs to be done or expected. For example, an adaptive challenge could include a parent’s need to modify expectations for a child with unknown growth and development milestones. The parent who recognizes an adaptive challenge, and then chooses to do the corresponding adaptive work, develops new beliefs, attitudes, and/or behaviors that address the challenge.

Healthcare providers are seen as leaders for this adaptive process, exemplifying behaviors (shared decision-making, problem solving, collaboration) that facilitate a patient’s efforts to overcome resistance and do their own adaptive work to address challenges (Thygeson, 2013; Thygeson, Morrissey, & Ulstad, 2010; Anderson et al., 2015). The level of expertise or authority has no bearing on who can be an adaptive leader, indicating that the patient can assume leadership activities, and move towards a full collaborative relationship with a healthcare team (Thygeson, 2013, p. 667).

The application of this framework to these parents as long-term caregivers allows for the identification and description of their development towards adaptive leadership with the potential for becoming integral members of the healthcare team, and acting as “maximally autonomous producers” of their own patient-centered healthcare (Thygeson, 2013, p. 661). Parents demonstrating leadership behaviors have the potential to replace the reductionist, healthcare provider directed, technical medicine they may encounter with a holistic, collaboratively directed approach to caring for their children.

Purpose

The purpose of the study was to chronicle the adaptive challenges and adaptive work, including emerging leadership behaviors, demonstrated over time by the parents of very young children diagnosed before birth with life-threatening conditions.

Design and Methods

This descriptive, follow-up study involved in-depth interviews with parents who had received a fetal anomaly diagnosis and were caring for their children born with life-threatening conditions. Individual interviews were conducted with the 7 mothers who participated without a partner, and conjoint interviews with 8 participating couples. Conjoint interviews were conducted by design to provide the opportunity for parents to share their thoughts, expand on relevant topics, and detail collective experiences through the narrative built by each couple.

Participants.

The participants were mothers and fathers retained from an original study conducted between 2011–2012. The original study was designed to explore the process of becoming a parent as perceived by expectant parents after deciding to continue their pregnancies with non-lethal fetal anomaly diagnoses. Such diagnoses included major anomalies of the cardiovascular, digestive, and/or central nervous systems. Additional or suspected chromosomal diagnoses such as Down syndrome were not exclusionary. Recruitment was accomplished through collaborative efforts of the first author and healthcare providers who cared for these patients at two Midwestern care centers. All participants in the original study agreed to be re-contacted for follow-up. Eligibility at follow-up included participation in the original study and birth of an infant with a major anomaly. Parents who experienced the death of their affected children were invited to participate. Parents were excluded if they were not actively parenting due to lack of time before infant demise, restricted parent-child contact, or no custody of the child. Data were collected for this follow-up study during 2014.

Data collection.

The first author (ACM) scheduled and completed the follow-up data collection with each participating mother or couple. Upon recontact, parents completed an electronic survey that included questions for updating and describing demographics and child health information, as well as questions that prompted parents to recall their experiences by completing open-ended text boxes identifying the joys and challenges of preparing for and parenting the affected child. Once the survey was completed, a telephone interview was scheduled. By design, the interview could include viewing digital photographs provided by a parent, again for purposes of enhancing recall of events and to elicit the telling of their experiences related to preparing and caring for the child. The arc of the semi-structured interview and interview guide excerpts are shown in Table 1. The interview was designed to elicit in-depth data regarding the following three topics: (a) what was/is most important about the child, and her/his needs, and family needs, (b) what were the moments of joy, and those posing the greatest demands and challenges for parenting the affected child, and (c) what did the parent, couple or family do (e.g., problem-solving, identifying and using healthcare resources) that made a difference in their lives over time. Survey responses and interview data collected before birth were used to supplement the follow-up interview questions. The interview also allowed for opportunities to explore related issues raised by parents. To ensure that each parent of a couple participated throughout the interview, both the mother and father were frequently asked questions such as, “What was your experience?” Was it the same or different for you?” and “How do you feel about that?” Interviews lasted 1 – 1½ hours, were audio-recorded, and later de-identified and transcribed verbatim.

Table 1.

Arc of the interview and corresponding interview guide excerpts.

Arc of the Interview	Excerpts
Invitational statement	We last talked before your child was born. At that time, you told me about how you were experiencing the pregnancy and preparing for what might be ahead of you. Today, I would like to talk to you about your experiences since that time and about the major events you have experienced since the prenatal diagnosis. We last spoke on [date], tell me your story from that beginning point?
Questions related to major events	Talk to me about what life was like when [time frame of parent-reported major events on survey] What could you handle well, what seemed easy, or was working well? What was difficult to manage, what didn’t work well? What happened next? What [surprises, happy times, biggest challenges] did you experience? Are there photographs that show this?
Questions drawing on data from initial interview during pregnancy	When I went back to what we talked about before [child’s name] was born. You told me about (reference data collected during pregnancy). I am wondering how this has gone for you? Whether this is still important to you?
Questions related to the past	At that time, did you see yourself or your family as the same or different from others? Can you give me an example? What was [typical, routine, normal] for you then? What/Who made a difference for (your family, you, your child) at that time? What did you need that you did not get at that time? What did you have to deal with that might have been avoided? Tell me about the photograph that you sent to me.
Questions related to the present	What is it like to be a parent to [child’s name]? What is important to know about [child’s name]? What is most important for you to do now? What/Who is making a difference now for (your family, you, your child)? What are you having to deal with that might have been avoided? What do you need right now that you are not getting? What/Who can help with this?
Closing questions	Thinking about how life has been for you and your family, if this time was a [tv show, or a book], what would the title be? What would each [show, chapter] cover? Now that you have told me about your experience, looking back –  When did you feel that you could handle your circumstances the best?  At what times did you face your biggest challenges as [the parent, couple, family, or for your child]?  What do you wish would have happened? Have you had a chance to explain what you think is important about your experience, and having [child’s name] in your life? What questions should I have asked that I didn’t ask?

Ethical considerations.

Ethics board approvals were obtained from all sites involved in the follow-up study. Participants provided both verbal and written informed consent.

Data analysis.

Shortly after the follow-up study was begun, the concepts of adaptive work and also a progression towards leadership behaviors were recognized in the interview data. Considering the potential clinical value of describing this phenomenon, the analytic decision was made to use the adaptive leadership framework to guide a directed content analysis (Hsieh & Shannon, 2005; Patton, 2002). The unit of analysis was at the concept level, not the individual or dyad. MaxQDA software (Kuckartz, 2007, 2010) was employed for data management and analysis. The first three authors (ACM, KAJ, MJB) independently coded the transcripts using concepts from the adaptive leadership framework as broad, higher order coding categories. Experts on adaptive leadership concepts offered feedback and guidance on the initial 4 coded transcripts that allowed for further refinement of the coding categories, and continued to provide valuable insights throughout the analysis. As represented in Table 2, the theoretically-informed coding was refined to focus on adaptive challenges and work described by parents in terms of self in an intrapersonal domain, and in context with others in an interpersonal domain. Refined coding for adaptive leadership is shown in Table 3, which captured parents’ descriptions of their behaviors intended to prompt others (e.g., in the family, healthcare, and/or community or education settings) to do adaptive work. After 6 transcripts were coded independently and discussed by the three coding authors, the remaining 10 transcripts were independently coded by the first author (ACM) and one other author (i.e., 5 coded by KAJ; 5 coded by MJB). Coding and analysis were iterative processes incorporating parents’ quotations that exemplified the concepts and further specifying codes by consensus, until agreement and saturation were reached, with redundancies and no new aspects of the concepts found in the data. Finally, the conceptual model depicting adaptive leadership development was generated.

Table 2.

Theoretically informed categories of adaptive challenge and adaptive work, refined sub-categories, and definitions for coding.

Categories	Definitions
Adaptive Challenge	The differences found between what parents perceived they were doing or expecting, and what needed to be done or expected.
Adaptive Work	In response to the adaptive challenges posed by their fetus’/child’s health condition and caregiving demands, parents engaged in corresponding adaptive work.
Sub-categories	Definitions
Intrapersonal Domain	These adaptive challenges and corresponding emotional or cognitive work that are focused on oneself. Challenge: Increase mental and physical stamina to continue the level of engagement in fetal/infant care Work: Manage and recognize emotions related to fetal/child health, recurrent memories and traumatic events Process and accept the unknown trajectory of fetus’/child’s health and development, and dealing with the “what ifs” emotionally and cognitively Challenge: Face the child’s complex and changing condition Work: Understand the fetal/child health condition(s) and care plan, and prepare for anticipated events or specialized care Be on alert to monitor and protect the fetus/child, which includes serial surveillance and treatments, and attending to changes in health status
Interpersonal Domain	These adaptive challenges and corresponding work were in parallel or in a shared context with others. Challenge: Deal with a family divided geographically and psychologically, most often with one family member staying in or near the hospital to be close to the in-patient child Work: Record information about fetal/child health Communicate health-related information to keep others informed, answer questions, and/or to make decisions Challenge: Navigate shifting responsibilities related to specialized care and the parenting that the child needed Work: Identify who supports child health best given the medical needs, emotional state of a parent, and family demands Challenge: Reprioritize instrumental and psychosocial aspects of daily living and/or livelihood to accommodate the needs of the affected child, and/or other family members Work: Change of employment status (e.g., full/part-time, change in job) or education goals (e.g., reduce course load, re-enter school) Balance psychological needs by considering one’s own and family needs, and distributing time between work, school, and all children in the family, as well as seeking additional caregivers for affected child Challenge: Have a child who is as normal as possible Work: Seek diagnostic norm, which includes understanding and hoping for a trajectory of health and development that is typical for a fetus/child with the health condition, and how the child compares with other children with a similar condition See ordinary and extraordinary as the child can be perceived to be just like any other child, yet survived a serious health condition with a history of surgery and related physical trauma, and is exceeding expectations

Table 3.

Theoretically informed category of adaptive leadership, refined sub-categories, and definitions for coding.

Category	Definition
Adaptive Leadership	Parents’ leadership activities that included new behaviors to mobilize others by facilitating the adaptive work of another; work that could only be done by that person.
Sub-categories	Definitions
Mobilizing Behaviors	Parents explained that with the benefit of accomplishing their own adaptive work over time, they developed the following mobilizing behaviors: Ability to effectively focus on and support the adaptive work that a parent partner needs to do in response to a challenge that is partially addressed or unaddressed Experience and capacity to address, or prompt changes in healthcare practices related to condition specific problem-solving, with those in the health care system Efforts directed toward attending to the adaptive work of others in the community (e.g., neighbors, play group) or educational setting (e.g., daycare, preschool)

Rigour

Rigour was enhanced using many procedures. The semi-structured approach to interviews included an interview guide designed to capture how parents and families adapted, while also allowing parents to elaborate on the three main topics. The first author (ACM) conducted all interviews for consistency. The audio-recorded interviews were transcribed verbatim and checked for accuracy by trained study team members. Analysis was completed by three coders who independently analyzed data using broad categories that were specified during the analytic process. Differences in perspectives, and coding were discussed thoroughly, and final analytic decisions were made by consensus. Transparency was sought through detailed methods and concept definitions. Inclusion of parents’ quotations contributes to rich description and trustworthiness of the findings (Lincoln & Guba, 1985).

Findings

Participant retention is shown in Figure 1. Efforts to follow up extended over several months, and secondary contacts (e.g., close family members or friends) previously provided by the participants were used for the most difficult to reach. Despite continued expressed interest in the follow up, 4 families did not provide us with additional data. Characteristics of the follow-up sample for the study reported here is shown in Table 4. There were 22 parents who self-identified as White and 1 Hispanic. Diagnoses for the 15 infants were confirmed after birth, and included major heart anomalies (hypoplastic left heart syndrome, tetrology of Fallot, heterotaxy), gastroschisis, congenital diaphragmatic hernia, omphalocele, congenital pulmonary airway malformation, spina bifida, as well as Noonan syndrome, and Dandy Walker malformation. Table 5 provides some context for the findings, including the family, mother or couple identified by pseudonyms; the timing of the initial interview during pregnancy; and the age of the child at the follow-up interview.

Figure 1.

Follow-up contact and retention.

Table 4.

Sample characteristics.

Parent characteristics	n = 23
Parent
Mother	15
Father	8
Age
26–30	10
31–35	9
36–40	2
41–45	2
Relationship status
Married	20
Partnered	2
Single	1
Highest level of education
High school	4
Some college	7
Undergraduate degree	8
Graduate degree	4
Household characteristics	n = 15
Income (USD)
<30,000	2
30,000–49,000	1
50,000–69,000	3
70,000–89,000	4
90,000–109,000	3
>110,000	2
Number of siblings of affected child living in household
0	2
1	6
2	7

Table 5.

Family, parents and timing of interviews.

Family	Parents interviewed	Weeks of pregnancy at initial interview	Age of child at follow-up interview
1	Jessie Andrew	30 weeks	35 months
2	Laura Steve	37 weeks	37 months
3	Whitney	30 weeks	36 months
4	Becca Tyler	36 weeks	27 months
5	Lisa Sean	31 weeks	25 months
6	Amber Jeremy	30 weeks	29 months
7	Rachel	25 weeks	19 months
8	Kate	22 weeks	28 months
9	Victoria	23 weeks	17 months
10	Lindsey	29 weeks	17 months
11	Anna	34 weeks	18 months
12	Sara Patrick	25 weeks	15 months
13	Mimi	37 weeks	17 months
14	Cassie Jose	29 weeks	14 months
15	Tiffany Will	29 weeks	38 months after infant’s birtha

^ainfant demise at 6 months

Parents as Adaptive Leaders

Our findings are represented in the conceptual model of adaptive leadership development for these parents, shown in Figure 2. After addressing several challenges, many of the parents in this sample described, or seemed poised for demonstrating adaptive leadership behaviors.

Figure 2.

Parents of children born with life-threatening health conditions described developing adaptive behaviors over time. Development seemed to be an iterative process that could build on experience and situate parents as adaptive leaders.

Adaptive Challenges and Work - Intrapersonal Domain.

The self-focused adaptive challenges and work in this domain related to well-being and cognitive efforts that relied on parents’ perceptions of importance or urgency. It is of note that the mothers were most explicit and detailed regarding work in this domain. Examples are provided in Table 6.

Table 6.

Adaptation in the intrapersonal domain.

Adaptive Challenge	Adaptive Work	Parent Quotations
Increase Mental and Physical Stamina	Manage and Recognize Emotions	“… for a while, it didn’t seem like I had a child because she was in the hospital all the time, and they (healthcare providers) didn’t want me to hold her for a very long time.”
	Process and Accept Unknown	“I had gotten the holy water actually when we were pregnant, when we got the diagnosis … So it was kind of special to me. One time I had forgotten [the holy water], and I did the sign of the cross basically with my tears on her head. And I thought, God would understand that there’s nothing more holy than a mom’s tears.”
Face Complex, Changing Condition	Understand and Prepare	“I wasn’t able to bond with [my hospitalized daughter], even through the first three months. I was guarding my heart because there was so much unknown, and I just didn’t think I could really open up to her. So really, I think I was able to bond with her after her last [procedure]. It was almost like there was that relief like - she’s here to stay kind of thing.”
	Be on Alert to Monitor and Protect	“I was terrified—Terrified that he would die every day … I went for a long time being terrified. Long time. I would hardly let this kid out of the door.” “I think that’s been my biggest struggle - letting her do her own thing at her own time. I mean everybody’s different, and everybody learns different. That’s what I tell my [students] at school all the time. But I think I need to take my own advice. That’s easier said than done.”

Most accounts related to increasing mental stamina during infant hospitalization and surgeries, while the physical stamina was a practical matter whether during hospitalizations or in day to day life. Not being able to hold a newborn was recalled as particularly difficult and required adaptive work of managing and recognizing the emotions related to bonding and proximity. For one mother, holding her infant seemed to allow her to engage in other intrapersonal work. Another mother poignantly helped us understand her use of personal, spiritual resources to process her emotions and accept the unknowns before her infant’s third surgery. Fortified early on by what she could do to protect her infant, this mother went on to describe other intrapersonal work, as well as interpersonal work with her partner, and adaptive leadership through her perspective as an integral member of her daughter’s health care team.

Adaptive work in this domain was often overshadowed by uncertainty. Parents offered many examples of their work to understand, prepare for the possibility of mortality, as well as to monitor child development. Many parents described holding back, or “guarding” themselves emotionally until they could think that the infant could survive. Moving through this adaptive work allowed them to move on to monitor and protect their children and address the interpersonal challenges to support child health in collaboration with others.

The emotional cost of doing the work over longer periods of time was raised as problematic, and some parents put particularly emotionally demanding work on “the back burner,” not to be avoided, but rather to be dealt with later. When a mother’s mental health was compromised, however, fearful thoughts of losing a child could ruminate. There were some mothers who shared their experiences of needing to be hyper-alert and monitor their children. Facing the complex and changing condition was an ongoing challenge that led to intense reactions in an effort to protect the child, which appeared to interfere with adaptive work in the interpersonal domain. One mother disclosed that it was well after her son’s first birthday that she told her healthcare provider about her enduring emotions, thoughts, and behaviors, and was subsequently diagnosed and treated for post-traumatic stress.

Even as concerns of mortality faded, being on alert to monitor and protect the child remained a central focus, and child development came to the fore. One mother was monitoring her child’s development through her educational lens. She explained that although she was a teacher, it was unexpectedly hard for her to understand and accept what would be developmentally appropriate for her daughter. Her experience was echoed by nearly all parents of toddler-aged children in this sample. Overall, findings suggest a pattern showing that parents’ adaptive work in the intrapersonal domain could be accomplished in a stepwise, and also iterative manner. Practice and confidence in addressing challenges in the intrapersonal domain appeared to allow more attention to challenges in the interpersonal domain.

Adaptive Challenges and Work: Interpersonal Domain.

The adaptive challenges and work in this domain could be experienced in parallel or in shared contexts with others. The work parents did was often supported by previous work done in the intrapersonal domain, and could have tangible influences on others. Examples are shown in Table 7.

Table 7.

Adaptation in the interpersonal domain.

Adaptive Challenge	Adaptive Work	Parent Quotations
Deal with Family Divided	Record and Communicate	“I could text her a question and she could ask it and let me know. that way nothing got forgot about. You know, it’s just something her and I decided on to be useful for both of us … and (Tiffany was) recording when they [healthcare providers in the hospital] do their rounds in the morning, she would record it and then send it to me to my phone.”
Navigate Shifting Responsibilities	Identify Who Supports Child Health	“We didn’t want [our daughter] to have to sleep in the room by herself, you know, even with the nurses there, not without one of us there.”
Reprioritize	Change of Employment or Education	“(Our son) comes first, and it was hard to replace me (as primary caregiver). So I thought in [his] best interest, a job that I had been at for 12 years – (I) just let it go.”
	Balance Psychological Needs	“Now the biggest challenge is trying to balance - figuring out how to balance (our) time between everything.
Have Child as Normal as Possible	Seek Diagnostic Norm	“We are positive people anyway, there are definitely moments where we dwell on the negative (child’s slower developmental progress). But I think we both kind of realized that, you know, the negative isn’t going to get you anywhere - be positive and keep going for it (to reach developmental milestones).
	See Ordinary and Extraordinary	“You have to see where this child came from so you can appreciate where he is now … but if you notice, if you just look at the photo, you see a boy who looks like he’s just bein’ a boy. You see what presumably looks like — unless you see the scar — you see a two-year-old boy … he should be wearing a Superman shirt, yes!”

Most families had infants hospitalized many miles away from their homes with older children. Predominantly, they recalled the push and pull of demands at the hospital, home and work. When one parent was at the hospital bedside, recording and communicating information about the health status of the child to the family was needed, but varied in extent and satisfaction. During hospitalization and beyond, parents had to navigate shifting responsibilities that encompassed their decision-making about who could best support child health given the emotional and cognitive capacity to do so. For many families, parent-infant bonding and close proximity to the affected child were raised as deeply personal matters, and also essential for child health. For one couple, never leaving their daughter with “strangers” in the hospital was paramount, and this mother and father alternated their time at the bedside. In this sample, it was most often the mother at the hospital or at home after the child’s discharge. Navigating shifting responsibilities was further characterized by parents’ descriptions of the ideal work in interpersonal domain - being an informed decision-maker, and a partner who is available and ready to take on a new task or activities to support child health.

The need to re-prioritize often prompted changing employment, seeking additional education, or focusing on how time is used to balance psychological needs. The consideration or decision to change employment was brought up most frequently and required intra-couple agreement and support. Some parents, primarily mothers, left employment outside the home to allow for the child care needed. Even with one parent at home full-time, caring for a medically at-risk child involved ongoing adaptive work. Many described their work to balance time spent assuring the psychological needs within the family were met. Both mothers and fathers explained that sufficient time to do it all; to care for the affected child, older children, the partner and oneself required life changes and collaborative planning.

The challenges also included wanting the child to be “normal,” or to develop as normally as possible. Parents’ adaptive work involved seeking the diagnostic norm for a child beginning before birth, and to see the ordinary and extraordinary in their child and their family life. Being positive was taken up by some as an intentional attitude from the onset of difficulties during pregnancy that extended to focus on a child’s potential to accomplish one developmental milestone after the next. These parents put tremendous effort into scaffolding their children’s experiences to be as normal as possible, and re-imagining how they could later be “a contributing member to society.” One mother referred to a photograph she shared during the interview, and specifically pointed out how she considered her son as both ordinary and extraordinary. She embraced the notion of her child as “Superman.” She noted several Superman shirts her son owned, including those given as gifts, as well as highlighted a Superman-themed birthday party with a large number of guests. This mother poignantly explained that her little boy, with a hidden scar and heart disease, was just like a superhero, able to undergo surgeries and complications and survive again and again. At the same time, like Superman’s alter-ego, he could be seen as a normal, regular person.

Adaptive Leadership: Mobilizing Others to do Adaptive Work.

Adaptive leadership involved moving from adaptive work done by oneself to that needed to be done by another. This dynamic process appeared to allow a parent to step into leadership and then return attention to the intrapersonal or interpersonal domains, as needed. Table 8 illustrates examples of these behaviors.

Table 8.

Adaptive leadership to mobilize others.

Adaptive Leadership	Mobilize Others	Parent Quotations
Taking Up Leadership Activities and New Behaviors	Focus on Adaptive Work with Partner	“(My husband) just had a breaking point. He was so strong and so amazing and such a super dad and super the husband, and for so long … we had made it through pregnancy, we had made it through the birth … we had made it through [child’s] surgery - and all of a sudden, he was like, ‘holy shit.’ He just didn’t know which way was up anymore.” “(My husband) was the one who stood by me, and pushed me along to do something - he tried everything he could to just help me.”
	Address Technical Work with Healthcare Providers	“… they (healthcare providers) were used to dealing with young, young babies in the [neonatal intensive care unit]. They kind of forgot how old, and how steady, and healthy she could be. That was one time where I had to speak up, and be like, ‘I think she’s ready. Let’s get her off [the ventilator], and let’s get her breathing so she can start getting well.’ And I remember it being a struggle, but I remember feeling … that I did that for her … advocated for her.” “ ‘This is what’s happening, this is what we gotta do. Can you help take care of [our child]? ‘.… We know the ER. We paramedics by name. We know most of the doctors in the know our system.”
	Attend to Adaptive Work with Others	“… the more other people know too, the more accepting to they are of her differences … I think educating the people who are going to be with her when she goes to school. You know, teachers and peers. And I think that’s probably going be a constant thing … I would say, just be honest, hey, everything works above her knees! Sometimes you just have to be blunt.”

Nearly all of the couples spoke about attending to a partner’s challenge of having the stamina to endure surgeries, hospitalizations, and again the return to home throughout their children’s early months and years. Parents described their empathic responses to a partner’s unexpected needs by providing the necessary time away from child health concerns and supporting intrapersonal emotional processing to build up stamina to move ahead. Adaptive work could also be anticipated within a couple, especially before surgeries or procedures. Some parents explained how they were able to shoulder a burden and/or intentionally shield their own emotions during particularly difficult times to avoid further dysregulating the partner’s emotional state. There were also examples of one parent’s adaptive leadership to support the partner in longer term adaptive work involving symptoms of ongoing distress and mental health needs. More than one mother credited her spouse with helping her address clinically concerning symptoms of traumatic stress or depression.

There were parents who considered themselves experts on their children, and perceived themselves as integral members of the healthcare team. Some parents described how they addressed or persisted in addressing healthcare providers’ practices and decision-making. Emergent and recurrent needs for child health care led some parents to develop specific communication skills, positioning themselves to engage with healthcare providers regarding their technical work. One couple pointed out how their presence was essential, and detailed how their experiences and advocacy to support their child’s health within the healthcare system were not always easy, but became routine.

Not all of the parents in this sample took on adaptive leadership activities. Those parents who did explained how they helped family, friends, daycare providers, teachers, and community members understand and reframe their thinking about the condition, and the importance of doing so to support their child’s health and development. In contrast, those parents who did report adaptive leadership behaviors continued to grapple with their own adaptive work--wanting their child to be as normal as possible and selectively revealing the health condition to others.

Discussion

This study appears to be the first to build on the adaptive leadership framework to include parents’ adaptive work and leadership development in the context of having a child with complex health needs. These parents engaged in adaptive work in both intra- and interpersonal domains to address numerous challenges as parents and caregivers to their affected children. Variation was found in how parents addressed the work, and how some were able to become adaptive leaders by mobilizing others to do adaptive or technical work. It is possible that assessments focused on a parent’s work in the intrapersonal domain could reveal crucial mental health needs, and work in the interpersonal domain could point to differences within a family that could be problematic for supporting child health. Extensive adaptive work and adaptive leadership activities could highlight a parent’s capacity for full engagement and partnership with healthcare providers. Moreover, theoretically-based assessments of work and leadership can direct tailored and individualized psychosocial intervention to optimize parental caregiving and child health and development.

Adaptive work in the intrapersonal domain was characterized by parents’ descriptions of the major events they experienced beginning during pregnancy, and how they generated the necessary emotional and physical stamina and dealt with changes in their child’s health and development. This stamina could have been preserved by deferring emotionally demanding issues or cordoning off worry, similar to what parents of children with heart disease reported to safeguard their psychological survival (Rempel & Harrison, 2007). Beyond emotion regulation, parents explained their ongoing efforts to manage specialized care (e.g., surgeries, treatments, and surveillance) and to be on alert to monitor and protect the child while also keeping in perspective the need to experience joy and nurture a child through the early years. This perspective relates to a previously described caregiving motivation to reconcile illness and non-illness-related care, represented by one mother as “transitioning from nurse to mother” so she could relax and enjoy her child like a “normal mom.” (McKechnie, Pridham & Tluczek, 2016, p. 87). Similarly, parents have reported “going overboard” as they struggled for balance when protecting (e.g., minimizing exposure to germs) a child with heart disease (Rempel & Harrison, 2007). It is crucial to consider that parents’ adaptive work, like reconciling illness and non-illness-related care or struggling for balance, could be undermined by symptoms of depression and trauma (McKechnie, Pridham & Tluczek, 2016; Skari, Malt, & Bjornland 2006). A novel aspect of these findings is that a parent’s capacity to attend to and move through this adaptive work could reveal a pattern over time. With the variation shown in the current study, it seems possible that parents’ emotional progress could be stalled at the intrapersonal level, contributing to negative consequences. Thus, a clear implication would be the need to apply evidence that broadly supports evaluation of parents’ mental health during and after pregnancy is imperative (Beck, 2001; Cole et al, 2016; Geller & Stasko, 2017; Price, Corder-Mabe & Austin, 2012). Mothers’ and fathers’ adaptive work in this context takes shape during the transition to becoming parents; often involving paradigm-shifting turning points, and requiring extensive emotion regulation over time (McKechnie & Pridham, 2012; McKechnie, Tluczek & Pridham, 2015; McKechnie, Pridham & Tluczek, 2016). Understanding each parent’s history and perception of the trajectory can inform tailored assessment.

Adaptive work in the interpersonal domain was often described within the couple relationship, and how their efforts were complementary, in conflict, or otherwise impacted family functioning. How the couples as well as the mothers in this study described their work to communicate, navigate responsibilities and reprioritize resonated with previously described efforts for “staying on the same page” (Rempel & Harrison, 2007, p. 11). Yet, staying on the same page for those parents was far more successful in terms of sharing information and feeling satisfied as a parent partner, compared to parents in the current study. This contrast is important since, parents of children born with serious health conditions are significantly less likely to continue living together or remain married/ committed to each other as early as one year post-birth study when compared to parents of healthy children (Reichman, Corman, & Noonan, 2004). How parents work together can also be considered as co-parenting; defined by how parents identify with, negotiate and collaborate on, and complete the responsibilities of parenting (Doherty & Beaton, 2004; Feinberg, 2003; McHale & Lindahl, 2011). Co-parenting is believed to be a key mediator of family and child outcomes (Feinberg, 2003). A recent study suggested that the severity of an infant’s heart disease at birth could contribute to the development and quality of coparenting during the first year, especially in regard to the need for intra-couple support and satisfaction (Pridham, Harrison, McKechnie, Krolikowski, & Brown, 2018). Thus, how parents make progress in doing interpersonal adaptive work could be related to intra-couple communication, the quality of co-parenting, and child illness severity.

The most enduring adaptive work in the interpersonal domain, however, was to see the child as ordinary and extraordinary. For some parents, this work began after confirmation of the fetal anomaly diagnosis. The perception of the child as extraordinary included an awe for what the child had survived, while the ordinary view cultivated before and after birth could be antecedent to or an early form of normalization. Overall, normalization is considered a healthy process by which parents can view the child and their family more like others, rather than focus on management of the child’s illness as a burden that secures differences (Deatrick, Knafl, & Murphy-Moore, 2002; Knafl & Deatrick, 1999). Findings regarding the potential for parents’ normalization of a child’s delay in growth or development due to heart disease, however, could be detrimental if concerns are misattributed and/or appropriate resources are not sought (Rempel, Harrison, & Williamson, 2009).

Some parents described how they mobilized others to do their own adaptive work, representing adaptive leadership. Not all parents described abilities and willingness to mobilize others, however, suggesting that for some, adaptive leadership remained an unrealized potential. Much discussion on the nature of psychosocial adaptation (e.g., cyclical, recursive, linear-sequential, pendular, chaotic) is found in the chronic illness and disability literature (Livneh, 2001; Mishel, 1990; Parker, Schaller, & Hansmann, 2003), and raises questions about how and to what extent a parent can progress in caregiving development. Most similar to the experiences of adaptive work for the parents in this study, theory explaining a phased process for parenting young children with severe heart disease that was iterative (Rempel, et al., 2013). The current study findings suggest that attending to adaptive challenges over time, and developing into an adaptive leader appeared to be a progressive, but not linear course. What was captured through parents’ accounts was variation in who prompted the adaptive work of others, who viewed themselves as members of the healthcare team, and who collaborated with family members and healthcare providers to attend to their challenges in a way that makes sense specifically in the child’s and family’s life.

Implications for Practice

Although the literature has focused specifically on healthcare providers as adaptive leaders, leadership activities can be carried out by anyone on the care team (Anderson et al, 2015) or by the patient (Thygeson, 2013). Understanding a parent’s trajectory of adaptive work and leadership, that is underpinned by theory, is of value to focus assessments and tailor intervention; especially to support families who are experiencing emotional crisis related to fetal and child health. When healthcare providers commit their knowledge, communication skills and time to develop trust within a clinical relationship, a shared understanding with the patient about their needs can be accomplished (Rørtveit et al, 2015). In this way, a healthcare provider could bring the parents’ intrapersonal and interpersonal adaptive work to the fore and foster their capacity for becoming adaptive leaders and partners in care. Such partnerships are foundational to shared decision-making, parents’ satisfaction with care, and optimal child health (Kuhlthau et al., 2011; Kuo, Mac Bird, & Tilford, 2011).

Implications for Research

The findings from this study have implications for research, specifically for three aspects of a formative phase of intervention. First, the weeks and months following a fetal anomaly diagnosis and birth appear to mark a sensitive developmental time for parents during which their adaptive responses are forming or in flux. In addition to providing condition-specific information and education, early and consistent psychosocial components of an intervention could be particularly supportive for parents during a transition that is often filled with uncertainty. Second, mental health represents one key factor that might not be prioritized for these parents. Parents in this population report symptoms of depression, anxiety and traumatic stress, which can be acute, episodic, or chronic. Intervention components that regularly assess mental health and support holistic health and wellness for parents should be integral to the care tailored for these families. Finally, information and communication technologies are increasingly being used to address both healthcare and social needs of patients across a care continuum (Coulter, 2011; Drenkard, 2014; Drenkard, Swartwout, Deyo, & O’Neil, 2015). Such a technology-based intervention could effectively extend family-centered care and promote active involvement of parents in maternal-fetal and infant care, as well as self and family care, in a way that aligns with their needs, beliefs, values, and preferences offers potential for reaching optimal outcomes (Swartout, Drenkard, McGuinn, Grant, & El-Zein, 2016)

Limitations

The findings of this study must be considered along with the following limitations. Participants self-selected for the original and follow up studies. Approximately one-third of the original participants were retained for follow-up. This sample size was appropriate for the qualitative methods and allowed for rich description, yet conceptual saturation might not have been reached. Study participants were socio-economically diverse, however, included only those who identified as heterosexual and primarily white, which was representative of the population in the state where recruitment took place. Keen efforts were made to follow up with all original study participants, especially those who identified as Black or Hispanic, historically under-represented in research. Some explained that the demands in their lives prevented them from completing data collection, while others could not be reached. The conjoint interviews conducted for this study invited each couple to build a narrative with agreed upon responses, as well as reflections on adaptation accomplished by one or both partners (Heritage & Raymond, 2005). Nevertheless, these constructed narratives could have been shaped by social desirability, or otherwise restricted. Mothers in this sample were more explicit about their parenting experiences than their partners, which could have been due to their higher distress levels (Cole et al, 2016), or couple dynamics (Murphy, Gallegos, Jacobvitz & Hazen, 2017). It is also possible that some fathers glossed over their experiences or were reluctant to tell the whole story, a manner described as shrouding bad news to contain emotions and to keep to a certain social order (Maynard, 2003). Finally, despite the use of many prompts, including the participants’ photographs to trigger and improve their memories, recall bias must be considered.

Conclusions

Study findings describe how parents identified and responded to adaptive challenges related to their child’s health condition within intra- and interpersonal domains and developed into adaptive leaders. Doing intrapersonal adaptive work appeared to expand parents’ capacities for work in the interpersonal domain, or that done with others. Parents described struggling at times, however, and attributed compromised mental health to being stalled with steep challenges. Over time, and with practiced adaptive work, some parents developed leadership behaviors that helped others to recognize and do their own adaptive work.

Highlights.

• Parents of children with complex health conditions face ongoing challenges

• Parent-perceived adaptive challenges are within intra- and interpersonal domains

• Understanding parent-perceived challenges can shape team responses and intervention

• Parents work at adapting, with some demonstrating leadership behaviors

• Parents’ emerging leadership behaviors can cue integration with healthcare team