Family Management Skills Reported by Parents of Preterm Infants in the NICU using the Self- and Family Management Framework (SFMF)

Abstract

Background:

Across the globe, family-integrated care (FICare) has become an evidence-based standard in which parents deliver the majority of infant care in the NICU. Due to extensive barriers to parent presence, adaptations to FICare may be required for successful implementation. Family management theory may provide structure to the Parent Education Pillar of FICare and help nurses guide parents’ skill development as equal care members.

Purpose:

To identify family management skills employed by NICU parents using the Self- and Family Management Framework (SFMF).

Methods:

We conducted secondary analyses of qualitative interview data from NICU parents (n=17) who shared their experiences of using family-management skills to care for their infant. We categorized skills according to three main self-and family management processes: Focusing on Infant Illness Needs, Activating Resources, and Living with Infant Illness.

Results:

Parents reported several family management skills currently identified in the SFMF as well as new skills, such as conflict management, power brokerage, and addressing resources related to social determinants of health. Parent activation of resources was critical to sustaining parent focus on the infant’s illness needs.

Implications for Practice and Research:

By teaching skills that parents reported as helping them to manage infant care, neonatal nurses may better facilitate parent integration into the care team. Future researchers can incorporate the skills identified in this study into the design of family management interventions that facilitate FICare implementation in the United States.

INTRODUCTION

The NICU stay is a unique opportunity for neonatal nurses to engage, educate, and empower parents to effectively manage care at the beginning of their infant’s illness trajectory. Yet in the United States, parents typically receive no structured training to effectively understand, monitor, and manage complex infant care within the chaotic NICU environment.¹ As a result, parents become overwhelmed in a traumatic ICU setting and disengage early during NICU hospitalization.^2,3

In countries across the world, family-integrated care (FICare) has become a standard of care, in which parents are integrated into the care team as equal members and as partners who deliver the majority of infant care in the NICU. ^4–7 FICare results in benefits for both parents and infants, including demonstrated improvements in infant weight gain and exclusive breastfeeding rates, NICU length of stay, parent confidence and involvement in infant care, parent-infant bonding, and lower symptoms of parent stress, anxiety and depression.^1,4,8–13 Formal FICare programs do provide structured training to parents through the FICare pillar of Parent Education, in which parents learn how care for their infant through required parent presence at the bedside (e.g., 6–8 hours a day for 5 days a week), frequent small group education sessions, and participation in bedside rounds. Through prolonged parent presence and engagement with the care team, parents learn not only how to complete a wide range of infant care tasks, but also learn how to co-manage complex care in the NICU as members of the care team.

In the United States, neonatal scholars and clinicians recognize that adaptations to the traditional FICare model will likely be necessary, as lack of access to paid parental leave, affordable childcare, and transportation are major barriers to prolonged parent presence at the bedside. ¹ Additional frameworks may be needed to structure parent education within adapted FICare programs to ensure all parents gain complex knowledge, skills, and confidence required to care for their infants in the NICU.

FICare embraces both the spirit and practices of family nursing, a specialty which focuses on holistically caring for the family and its relationships, so that the family can sustain care and promote well-being for all members.¹⁴ A key concept in family nursing is family management, which is a dynamic, daily process that family members engage to manage another family member’s (e.g., the infant’s) condition and integrate care of that condition into family life. ^15,16 Parallel to self-management, effective family management includes many specific skills, such as goal setting, self-monitoring, reflective thinking, decision-making, planning, action, evaluation, and emotion control. ^15,17 Self- and family management skills have been described by well-validated and widely used theories, such as the Self- and Family Management Framework (SFMF). ^15,16 Despite the recognition that family management skills are essential to managing a child’s chronic illness, family management skills have not been identified by or applied to parents caring for infants in the NICU.

Therefore, the aim of this study was to identify family management skills employed by NICU parents of preterm infants using the taxonomy of self- and family-management skills described in the SFMF.

METHODS

We used the consolidated criteria for reporting qualitative research (COREQ) checklist ¹⁸ to describe our qualitative work (Supplemental File 1). The IRB of the university where the research team was based approved the human subjects research (FWA# 00003152, IRB#2019–0475). Research team members used reflexivity and articulated their positionality as researchers, managers of their own families, and members of society ^19–21 as described in Supplemental File 2.

Design

We used the SFMF to guide our work due to its inclusion of a practical list of sub-processes, tasks, and skills that can be easily confirmed, refuted, or refined to include more skills as needed. The list of behaviors and thought processes can be assessed by neonatal nurses. We conducted secondary data analyses of qualitative interview data from parents engaged in a larger study aimed at refining a NICU family management intervention, Preemie Progress. ²² Qualitative interviews and content analysis occurred from January, 2021 to May, 2022. The larger study purposefully sampled 35 key stakeholders, including interdisciplinary researchers, technology experts, neonatal clinicians, and parents of former/current preterm infants in the NICU. During intervention refinement, one of our goals was to incorporate family management skills identified by parents into newly created video content for Preemie Progress, a family management intervention for parents of preterm infants during the first few weeks of infant life. Both the larger project and the study described in this paper were oriented with a pragmatic philosophy ^23,24.

This secondary data analysis was guided by the SFMF, ^15,16 which delineates three major self- and family management processes and associated tasks and skills used to manage a condition, ^16,17,25 such as prematurity, which is the context for this paper. The three main processes are: Focusing on Illness Needs, which we defined as the tasks and skills that enable parents to learn about and support management of the infant’s illness; Activating Resources, defined as skills used to obtain resources that assist the parent in sustaining and optimizing their role as a family manager; and Living with a Chronic Illness, defined as skills used to manage the parent’s own physical, mental, and emotional health as a family caregiver, while adjusting to the parental role and making meaning from that role. ¹⁷

Sample

Parents were approached for participation by group email or face-to-face in the NICU when COVID-19 safety protocols allowed. For this study, we used the data from parent (n =17) stakeholders who had direct experience caring for preterm infants in the NICU. We purposively sampled veteran parents (n=14) who had experience as peer mentors or leadership in parent support organizations (i.e., expert sampling), as well as parents of preterm infants who were hospitalized (n=3) at the time of their interviews.

Procedures

All participants provided verbal informed consent at the beginning of their individual, approximately sixty-minute semi-structured interview. Due to the COVID-19 pandemic, we conducted most interviews by video-conference (n=15/17, 88%). We obtained audio recordings through the videoconferencing technology and backup digital recorders (Olympus W152, OM Digital Solutions). No one besides the parents and researchers were present during interviews. During the interviews, we first asked parents about their lived experiences, skills, and advice surrounding family management in the NICU (Table 1). Next, we provided parents with a list of the self and -family management skills delineated in the SFMF and asked them to provide examples of their development and/or use of skills while caring for their NICU infants (Supplemental File, Reprinted with Permission). To elicit potential skills not included in the SFMF, we asked parents to describe any other skills, resources, or activities they found helpful during their lived experience in the NICU.

Table 1.

Questions on Family Management in the NICU (Semi-Structure Interview Guide)

• What advice would you give to a parent to help them through the NICU?

• What was the hardest part of your experience in the NICU? How did you overcome that experience?

• What did you appreciate about your experience in the NICU?

• What resources can help meet parents’ needs in the NICU?

• I am going to show you a table about skills that families use to manage their child’s care. What skills, if any, speak to you as a NICU parent?

• What other skills have you used that you found helpful?

PROBES:

• What was your experience using this skill?

• Why was this skill important?

• How did you develop this skill?

• What would you tell other parents with infants in the NICU?

Note. Questions listed in Table 1 were included in the semi-structured interview guide of the larger study, which aimed to incorporate family management skills identified by parents into newly created video content for Preemie Progress, a family management intervention for parents of preterm infants during the first few weeks of infant life. The Self and Family Management Framework (SFMF) guided both the larger study and the study described in this paper. Some interview questions were directly mapped to SFMF concepts. For example, “What resources can help meet parents’ needs in the NICU?” directly mapped to the process of “Activating Resources.” The questions “What was the hardest part…how did you overcome?” and “What did you appreciate..?” directly mapped to the process of “Living with Chronic Illness.” Codes derived from SFMF skills were also applied to parent responses, when applicable.

Audio recordings were transcribed by an independent transcriptionist who used de-identified transcripts (Rev.com). We created analytic memos (i.e., field notes) immediately after each interview and throughout the data collection and analytic process. We only gave transcripts to participants for comment/correction if requested, out of respect for participants’ autonomy and wishes for their data use. Parents did not provide feedback on the completed findings as a whole. However, we did leverage member checking by showing parents video scripts that incorporated parents’ own words describing family management skills used in the NICU. Member checking was iteratively and cumulatively conducted during semi-structured interviews. Each parent had the opportunity to discuss how their experiences, views, and feedback were represented (or not) in the video scripts that incorporated feedback from parents interviewed earlier in the study.

Data Analysis

We collected demographic data in REDCap and used STATA software to calculate descriptive statistics. To analyze interview data, we used directed content analysis and conventional content analysis methods, ²⁶ using deductive and inductive coding methods, respectively. For deductive coding, AW, QO, and MH used a start-list of codes derived from Schulman-Green and colleagues’ skills of self-management ¹⁷ and applied these codes to applicable parent responses, with the understanding that codes would be adapted over time to reflect parent-identified family management skills. At the time of our analyses, a taxonomy of family management skills had not been published. Using inductive coding, we created new codes and family management skills when the pre-determined code list did not adequately capture transcript content, underlying meaning, or existing family management skills.

Two team members (AW and QO) independently reviewed and coded the data within Dedoose Software. A third coder reviewed a third of the transcripts for coding reliability in Dedoose (MH). After completion of initial coding in Dedoose Software, we exported coded excerpts (i.e., quotes) to Microsoft Word, and we inserted applicable excerpts into a matrix template delineated by the processes of self-management. ^17,25 A core qualitative team that met weekly (AW, RB, QO, MH) reduced data to the most pertinent quotes related to each family management skill. Conflicting data were reviewed by the larger analytic team to achieve consensus (AW, RB, QO, MH, TB, and DSG).

Results

In Table 2, we describe the parent demographics of our sample (n=17). Below, we present parent-reported family management skills specific to the NICU setting and categorized them according to themes representing three main family management processes: Focusing on Infant Illness Needs, Activating Resources, and Living with Infant Illness. We also highlight newly identified skills. Tables 3, 4, and 5 depict the family management skills NICU parents confirmed, refuted, and newly identified during our interviews. We include additional examples and quotes illustrating family management skills in Supplemental Files 3, 4, and 5.

Table 2.

Sociodemographic Characteristics of Parents

Characteristic	Parent N= 17
Gender, n (%)
Female	12 (70.6%)
Male	5 (29.4%)
Age, Years (M (SD))	47.0 (13.5)
Female	42 (9.8)
Male	47.5 (15.2)
Ethnicity, n (%)
Non-Hispanic	15 (88.2%)
Hispanic	2 (11.8%)
Race, n (%)
White/ Caucasian	13 (76.5%)
Black/African American	4 (23.5%)
a Marital status, n (%)
Married/Partnered	13 (76.5%)
Unknown	4 (23.5%)
Geographical Area of Residence, n (%)
Northeast	4 (23.5%)
Midwest	7 (41.2%)
South	4 (23.5%)
West	2 (11.8%)
Highest educational level, n (%)
Diploma/Associates Degree	1 (5.9%)
Bachelor’s Degree	6 (35.3%)
Master’s Degree	5 (29.4%)
Practice Doctorate (DNP, MD, DPT)	1 (5.9%)
Research Doctorate (Ph.D.)	4 (23.5%)
Baby Gestational Age b (M (SD))	28.3 (4.6)
Female	27.4 (4)
Male	31 (5.8)

Note.

^aMarital status was based on a lexical search (e.g., husband, wife, spouse, fiancé, partner)

^bGestational age in weeks at birth for infants

Table 3.

Self- and Family Management Process: Focusing on the infant’s illness needs

Sub-Processes	Tasks	Skills
Learning	Learning about condition and health needs	• Identifying credible sources of information a • Acquiring information • Verifying/reconciling information • Learning about regimen, how to perform care tasks, managing fluctuations in infant illness
Taking ownership of infant health needs	Recognizing and managing body responses	• Monitoring and managing symptoms, side effects, and body responses • Recognizing limits • Adjusting treatment regimen to manage symptoms and side effects
	Completing health tasks	• Keeping appointments / care team meetings • Managing/taking medications b • Performing treatments/cares and keeping up with changes in care regimen
	Becoming an expert	• Goal setting • Decision making • Problem solving • Planning, prioritizing and pacing • Knowing if/when to take a break from regimen • Developing confidence and self-efficacy • Evaluating effectiveness of self-management
Performing health promotion activities for parents and infants	Changing behaviors to minimize disease impact	• Modifying diet, nutrition, smoking, and physical activity (e.g., second-hand smoke exposure). • Reducing stress • Taking action to prevent complications
	Sustaining health promotion activities	• Keeping up with screenings, immunizations, and lifestyle modifications (expressing human milk) • Using complementary therapy

Note: While both tasks and skills are required to engage in the processes of self-and family management, tasks and skills are distinct. Tasks are defined as the essential work of self-and family management (i.e., what needs to be accomplished by the parent). Skills are defined as the specific actions and/or abilities needed or used to accomplish the tasks.

^aBold text = newly identified skills by NICU parents.

^bStrikethrough text= processes not identified by NICU parents;

Adapted from “Processes of self-management in chronic illness” by Schulman-Green, D., et al, 2012, Journal of Nursing Scholarship, 44(2), 136–144. https://doi.org/10.1111/j.1547-5069.2012.01444.x

Table 4.

Self- and Family Management Process: Activating resources

Sub-Processes	Tasks	Skills
Healthcare resources	Creating/ maintaining/ strengthening relationships with healthcare providers	• Finding the right provider(s) • Communicating effectively • Making decisions collaboratively • Conflict management / negotiating boundariesa • Power brokerage
	Navigating the healthcare system	• Coordinating services/ appointments • Using resources effectively • Creating and revisiting advance care plans
Psychological resources	Identifying and benefiting from psychological resources	• Drawing on intrinsic resources, e.g., innate creativity, humility, lifelong learning, courage, flexibility, motivation • Drawing strength/wisdom from past experiences • Cultivating courage, discipline, and motivation • Maintaining positive outlook and hope • Maintaining self-worth as a parent • Advocating for self, family, and baby • Open, honest communication • Attending counseling/ therapy / support group
Spiritual resources	Sustaining spiritual self	• Acknowledging a higher power • Nurturing the spirit • Praying • Being part of a spiritual community
Social resources	Obtaining/ managing social support	• Seeking support of family and friends • Being proactive to limit isolation • Creating a community of peers with similar experiences • Working through issues of dependence/ independence • Assisting others to become partners in disease management • Seeking support of spouse/partner/2nd parent • Seeking support from healthcare team members • Social support from community (e.g., social media, church, school district, organizations)
Community resources	Addressing social and environmental challenges Securing resources to address the social determinants of health: accessing resources from the family, community, county, state, federal levels	• Seeking resources, financial assistance (e.g., prescription subsidies), environmental support (e.g., assistive devices), and community resources (e.g., transportation)b • Obtaining transportation to hospital/ appointments • Fulfilling legal requirements (birth certificate, SSN, new insurance) • Obtaining childcare for siblings (school, daycare, babysitter, family) • Getting accommodations for work/school (paid leave / parental leave / medical leave from work, city, state, federal levels) • Obtaining financial assistance (income, parking vouchers, meal vouchers, heat/rent assistance) • Securing housing (moving to larger home, new room for baby, addressing homelessness, modifying existing rooms for baby) • Accessing community’s services / networking

Note: Tasks are defined as the essential work of self-and family management (i.e., what needs to be accomplished by the parent). Skills are defined as the specific actions and/or abilities needed or used to accomplish the tasks.

^aBold text = newly identified skills by NICU parents.

^bStrikethrough text= processes not identified by NICU parents;

Adapted from “Processes of self-management in chronic illness” by Schulman-Green, D., et al, 2012, Journal of Nursing Scholarship, 44(2), 136–144. https://doi.org/10.1111/j.1547-5069.2012.01444.x

Table 5.

Self- and Family Management Process: Living with the infant’s illness

Sub-Processes	Tasks	Skills
Processing emotions	Processing and sharing emotions	• Exploring and expressing emotional responses • Regulating / suppressing emotions • Dealing with shock of diagnosis, self-blame, and guilt • Grieving • Recovering from trauma, emotional pain, and psychological suffering
Adjusting	Adjusting to infant illness	• Making sense of illness • Identifying and confronting change and loss (e.g., changes in physical function, role, identity, body image, control, and mortality)a • Managing uncertainty • Developing coping strategies (e.g., self-talk) • Dealing with discouraging setbacks • Focusing on possibilities (e.g., envisioning the future, reframing adversity into opportunity) • Accepting the “new normal”
	Adjusting to “new” self	• Clarifying and re-establishing roles • Examining health beliefs • Making social comparisons • Choosing when and to whom to disclose illness • Dealing with stigma
Integrating infant illness into daily life	Modifying lifestyle to adapt to disease	• Reorganizing everyday life • Obtaining assistance with activities of daily living • Creating a consistent health routine • Controlling environment • Being flexible
	Seeking normalcy in life	• Carrying out normal tasks and responsibilities as much as possible • Managing disruptions in school, work, family, and social activities • Balancing living life with health needs • Finding new enjoyable activities
Meaning making	Reevaluating life	• Reflecting on/rearranging priorities and values • Reframing expectations of life and self • Coming to terms with uncertain health, lifelong disability, terminal condition, or end of life
	Personal growth	• Learning personal strengths and limitations • Becoming empowered • Being altruistic /giving back to community • Developing as an individual / Bettering self
	Striving for personal satisfaction	• Finding meaning in work, relationships, activities, and spirituality • Creating a sense of purpose • Appreciating life

Note: While both tasks and skills are required to engage in the processes of self-and family management, tasks and skills are distinct. Tasks are defined as the essential work of self-and family management (i.e., what needs to be accomplished by the parent), and skills are defined as the specific actions and/or abilities needed or used to complete the tasks.

^aBold text = newly identified skills by NICU parents.

Adapted from “Processes of self-management in chronic illness” by Schulman-Green, D., et al, 2012, Journal of Nursing Scholarship, 44(2), 136–144. https://doi.org/10.1111/j.1547-5069.2012.01444.x

Focusing on the Infant’s Illness Needs.

The process of Focusing on Infant Illness Needs includes the subprocesses of learning, taking ownership of the infant’s health needs, and performing health promotion activities (i.e., for both the parent and the infant).

Learning

Parents developed new skills in identifying a range of credible sources from which they acquired information, including from members of their care team (e.g., nurses, doctors), multidisciplinary rounds, other parents, relatives who worked in healthcare, and research articles (Table 3, Supplemental File 3). When parents did not receive information they needed or did not trust information from the healthcare team, they shifted to reconciling or verifying information with the Internet and social media: “On Facebook…this guy had a 24-weeker. I said, when are you going to hold her? …the nurse had explained they needed to apply compassionate neglect. What. The. Heck.” (Supplemental File 3). In this example, a NICU father went to Facebook to verify with a veteran parent whether his NICU’s nursing practice of kangaroo care was evidence-based.

Taking Ownership of the Infant’s Health Needs

In taking ownership of their infant’s illness needs, parents managed their infant’s immature physiologic responses to the NICU environment, completed infant health tasks (e.g., diaper changes), and became an expert on their infant’s unique developmental needs. For example, parents took ownership of managing infant symptoms from pain, stress, feeding intolerance, drops in heart rate and oxygen levels, and side effects or complications from procedures. One parent recalled, “When… you watch your child flatline, it makes you even more vigilant to watch everything and make sure everything is going right.” Parents implemented a range of nonpharmacologic interventions to manage infant symptoms, including kangaroo care, therapeutic touch, oral immune therapy, and singing or talking to their infant. One parent asserted, “Parents are the most important piece of the care… We have superpowers, we can calm them. We can reduce their pain.” (Supplemental File 3).

Parents became skilled in recognizing and responding to a range of limits during their NICU experience, including their own physical and psychological limits (e.g., exhaustion, depression, anxiety). One parent stated, “If you don’t take care of your mental stability and your self-care, you won’t make it because…everything is going to pile on top…there’s only so much you can take as one person.” Parents recognized and overcame limits the health care team placed on them as parents: “limits are different for different nurses. Some nurses don’t want the parents to be there…. Nobody ever said, “Hey, change a diaper.” … I could have, but nobody told me I could. And when I asked, they’re like, “No, that’s my job, I’ll do it” [mother then insisted on doing the diaper change] (Supplemental File 3).

Parents described ownership of completing health tasks like keeping appointments and impromptu meetings with NICU team members (e.g., neonatologist, specialists, social workers), care conferences, multidiscplinary rounds, or calling into the NICU to understand the care plan for their infant that day: “I was always available if I needed to go to the NICU. They called if something was up. I would go directly to the hospital” (Supplemental File 3). Parents used complex combinations of skills to become a family management expert, including planning, prioritizing, and pacing to set goals for themselves and their child, to develop confidence as a parent, and to obtain a clear evaluation of their family management interventions (Table 3). One mother shared how she used problem-solving to assert ownership of her son’s care:

“I asked to hold [son], the nurse said, ‘no, you need a doctor’s order’…I said, ‘Can you please get it for me?’ My mission was to hold him. When 15 minutes were up, she said, ‘…He needs to go back.’ I say, “He’s doing okay. Why do you need him to go back? Can I hold him for a bit more? That was the way that I could stretch my KC time.” (Supplemental File 3)

Performing Health Promotion Activities for Parents and Infants

Over time, NICU parents realized the importance of taking ownership in completing their own health-promotion activities so they could be healthy enough to take care of their infants. One parent advised, “be aware of what you need to do to take care of your family, whether it’s talking to somebody, whether it’s making sure you stay up on your health, whether it’s putting that time to be with your kids, canceling some plans because of bigger priorities at home.” Parents took ownership of health promotion activities not just for themselves, but also for the well-being of their infants: “I pumped every two hours like clockwork. What I needed were those thinking to know that if I do this right, if I pump and my baby can have milk, the chances of him getting better are 100. It’s liquid gold, right.” Parents frequently took action to prevent infant complications (Supplemental File 3). One parent explained how they would not go to large family gatherings or allow visits from family/friends with cold and flu symptoms—both during NICU hospitalization and after discharge, “Since he had chronic lung disease, he could not be exposed to other children because the smallest cold could kill him. No matter how much pressure from your family, no matter how much it hurts their feelings…You have to do what the experts recommend and stay with it.”

Activating Resources

Parents described the process of Activating Resources as obtaining resources related to healthcare, psychological health, spirituality, social support, and the community (Table 4).

HealthCare Resources

Activating Healthcare Resources includes the family management tasks of “Creating, maintaining, and/or strengthening relationships with healthcare providers” and “Navigating the healthcare system” (Table 4, Supplemental File 4). Parents learned to identify each provider’s role to acquire the correct information from the right provider: “My husband was a resident …I had him explain to me the respiratory therapist is managing their breathing… speech person is managing their feeding. We are motivated learners, so we would just ask them questions. And that stood out to me… some people might not know what a fellow is.” To nurture relationships with the healthcare team, parents developed effective communication and collaboration skills: “If I’m not up to par on my side [communicating], then I’m letting her down in her health. It just came to a point where I’m like, okay, can you [nurse] explain to me what this means?”

One cross-cutting and newly identified skill that parents emphasized was conflict management. For example, parents asserted their role as team leaders to improve care coordination across services: “a pulmonologist tells us… this. The spine doctor tells us… that. Both …are conflicting in the advice that they’re giving us and team [son] starts with me and my wife. When the decisions are made for this kid, we are the team who makes it.” Parents navigated the healthcare system by working closely with their care team(s) to develop, implement, and revise their infant’s care plan, even if this meant engaging in conflict to seek a resolution for their infant. One mother painfully recalled,

“the nurse said, “If you think reading a book is making you learn more than I did in 25 years of my medical career, you are mistaken.” I’m calm because I don’t want her to take it against my son. I said, “I appreciate you’re taking care of my baby. I am the voice of my baby, I am asking you to please tell me everything because I am who represents this baby in the hospital. I respect your level of knowledge and that’s why I want you to tell me what I need to know about my baby because I want to help.”

Parents used open, honest, and respectful communication to relay their needs and goals, especially if their expectations were not being met: “Some nurses were like, ‘We’ll wait for you to get here [for care times],’ they knew us and that we would be there. We’d say, ‘We’re going to come back around 6’. We would communicate that, but some nurses were like “If you’re 2 minutes past 5:45, I’m moving on.” (Supplemental File 4)

Psychological Resources

Parents described their NICU experience as raw, traumatic, and life-changing. To cope with their trauma while continuing to manage infant care, parents activated a range of innate abilities or developed new intrinsic resources, including creativity, humility, courage, flexibility, motivation, discipline, openness, and love of lifelong learning (Table 4). One parent cultivated courage from his nurse to overcome his fear of holding his infant, “The first time I saw him hooked up to all this, I said there’s no way you put him skin to skin to me, but they did and a lot was the nurse, … very helpful with that.” The foundation for parents’ activating resources was acknowledgement of their own self-worth, and the worth of their infants and families: “Don’t be afraid to ask questions. You deserve to know what’s going on with your child.” (Supplemental File 4). Parents reported they benefitted from or would have benefitted from mental health resources, a skill not previously identified in Activating Psychological Resources. Parents specifically mentioned the use of peer parents on staff, social workers and mental health providers, family and/or marriage counseling, individual therapy, and NICU parent support groups (Table 4).

Spiritual Resources

Some NICU parents looked to a higher power during their child’s NICU stay because it offered comfort in a time of turmoil: “Anybody that would pray for [son], we had every religion come…it made us feel better and I think it helped.” Whether it was praying alone, with their partner, hospital chaplain, or with a greater community, NICU parents embraced spirituality with the hope that it would help their children: “the thing that brought us together as a couple is you’ve got to have some faith. I’m a big spiritual person…Growing up in a home, my parents were pastors. They always taught me to pray your way through the tough times.”

Social Resources

NICU parents realized it was important to have layers of social support to prevent feeling overwhelmed and isolated in their journey. Parents sought support from partners, family members, friends, other NICU parents, their community, and their infant’s healthcare team (Supplemental File 4). Early in the journey, parents learned how to support each other and share responsibilities: “I can…bag up the milk pumped and store [it] away… to help [wife], massage her because maybe she backed up and there’s not enough milk coming out.” Having the support of their families lessened the burden for NICU parents. One NICU father recalled, “My father, I thought he was going to be disappointed. He was like look, man, whatever is going on with him, we’re going to love him and do whatever we can. That was a very freeing moment--it took the added pressure of worrying about my child and also disappointing my dad and my mom away.”

Community Resources for the Social Determinants of Health

Parents greatly expanded skills encompassed within “Activating Community Resources” (Table 4). Briefly, parents described having to find resources related to work and time off, transportation to and from the hospital, legal assistance (e.g., birth certificate, social security number, health insurance), housing, and childcare to babysit other children while visiting their infant in the NICU. Some NICU parents had enough resources to be able to parent in the NICU daily, which helped them connect with and better care for their infant. Other parents did not have resources to support prolonged parent presence: “We put a lot of miles on the car. Sometimes two hours because of traffic. I had to go back to work to get all of my benefits paid out. We tried to get down there every other day. I’d go to work then leave, work was like 30 minutes in the opposite direction.” (Supplemental File 4)

Living with Infant Illness

The third family-management process, “Living with Infant Illness,” included the subprocesses of processing emotions, adjusting, integrating infant illness into family life, and meaning-making (Table 5).

Processing and Sharing Emotions

Parents learned how to explore, process, express, and share their own difficult emotions surrounding prematurity with others (Supplemental File 5). One parent recalled how he overcame his grief through cognitive reframing: “Every time I felt sorry for myself, I just said to myself, man, you have it great. He’s the one that has it tough.” Parents engaged many sources to process their emotions, including partners, friends, family, counselors, their faith (e.g., God or other deity), their community, and even care team members: I was afraid I would hurt him. He was so small, so tiny. that nurse…she was very blunt but polite about it. It wasn’t argumentative, but it was like come on, you’re a tough guy. Hold this baby and you will not hurt the baby. I promise you, you will not hurt the baby.” Through activation of resources, they learned to grieve, heal their emotional pain, and recover from trauma—critical skills previously not identified in Schulman-Green’s taxonomy (Table 5). Parents even learned to suppress and regulate emotions during times of conflict and frustration with their infant’s care providers:

I knew if the doctor doesn’t feel I’m in a good frame of mind they won’t tell me something. I was always smiling but this day… this doctor said, ‘we found another infection in [son]. I had a tear in my eye…she [nurse] says, “Well, if you’re going to cry when I tell things about your baby then I’m not going to tell you anymore.” Then I was like, “Okay.”

Adjusting to the Infant’s Illness and Parental Role

Parents learned flexibility and openness as they worked to make sense of their infant’s illness. They adjusted to the presence of constant change, loss, uncertainty, setbacks, and infinite possibilities (both positive and negative) for their family’s future. They pivoted from planning life with a healthy term baby at home, to life with a critically ill infant in the NICU, sometimes within a matter of hours: “from the time I was told I could have a preemie to the time that I had a preemie was two and a half hours…[son] was born weighing 906 grams.” In other cases, adjusting to an infant with a chronic illness was described as a process that took place over the course of years: “even now, they’re three and a half and we’re still dealing, I feel, with some of the residual of preemie life. You don’t realize how much therapy.” (Supplemental File 5)

Integrating Infant Illness into Daily Life

To parent their infant in the NICU, families had to reorganize nearly every part of their lives, managing disruptions in school, work, home, and social life (Table 5). One mother recalled, “I worked remotely …I would go to the NICU at like eight in the morning …do my morning kangaroo care and…work from 12 to 6 …then I would go in …from like 8 to 10…” However, parents also strived to carry out normal tasks, continue living their lives, and even find new enjoyable activities. One father recalled, “some of my best days was doing kangaroo care with [daughter] and watch the Browns play football on a Sunday.” (Supplemental File 5).

Meaning Making

Parents learned to re-align their expectations of their infants, themselves, and their care team members with reality at the bedside. Having a critically-ill newborn in the NICU forced parents to re-evaluate nearly every aspect of their lives: “you have to look at the bigger picture of my child is in the NICU, it’s really about my child. It’s not about me.” As time went on, parents reflected on how their NICU hospitalization helped them to grow as parents, partners, and individuals (Supplemental File 5). Parents acknowledged how their journey made them more patient, empathetic, grateful, and altruistic. Many parents noted how their time in the NICU inspired them to choose or change careers, follow a calling, or advocate for future NICU parents. Turning the pain and trauma from their NICU hospitalization into a purpose or personal mission helped families to heal and make meaning from that difficult time in their lives (Table 5).

DISCUSSION

The Self & Family Management Framework as Applied to NICU Parents

This study is one of the first assessments of self- and family management skills used by parents of preterm infants hospitalized in the NICU. Numerous researchers have documented parent experiences in the NICU that align with our findings on the parent-identified family management skills used to learn and grow from those experiences. ^27–32 By acknowledging parents’ skills, clinicians put parents in a greater position of power and better articulate their unique and irreplaceable role on the healthcare team. The following paragraphs discuss how neonatal nurses and their teams can support skill development during family integration in the NICU, organized by themes reflecting parents’ three main processes of family management.

Focusing on the Infant’s Illness Needs

For the process Focusing on Infant Illness Needs, parents confirmed learning about their infant’s condition through nurses, inpatient rounds, observation of infant care, phone calls with care team members, and searching about the condition online. In a new age of mis- and disinformation concomitant with social media use,³³ parents placed new emphasis on identifying credible sources to acquire information, and these sources were not always the healthcare team. As team members who have the most frequent contact with parents, neonatal nurses can encourage parents to use the full range of opportunities to acquire information, in addition to emphasizing the importance of parenting at the bedside. Neonatal teams should anticipate that parents will be searching online for alternative sources of information, and can reduce risk of misinformation by proactively providing parents with trusted sources such as parent support and professional organizations. At the same time, nurses need to be intentional about removing barriers to parent learning by creating a learning environment where parents feel welcome, psychologically safe, and cared for. Nurses can create a learning environment by narrating (i.e. explaining) care as it occurs, encouraging parent questions, and starting conversations in which parents can openly share details about what they are experiencing, feeling, and managing in the NICU and at home. It is only when parents are supported to share barriers to learning that the care team can begin to explore potential solutions. This is because barriers to learning will be unique to each parent (e.g., not sure how to ask questions, limited presence for participation in infant care, fear of hurting infant).

In line with the goals and desired behaviors of family-integrated care, ³⁴ parents reported taking ownership of a multitude of new behaviors to minimize prematurity’s impact (e.g., frequent handwashing, modifying stimulation to infant), promote infant health (e.g. expressing human milk, oral immune therapy), and nurture infant development (e.g., kangaroo care, facilitated tucking, nonnutritive sucking). Parents highlighted how neonatal nurses were key influencers of the speed and ease in which they took ownership of their infant’s health needs. In their modified FICare program, Kubicka et al. noted how parent stress was significantly reduced if parents took ownership of at least 5 out of 15 basic care skills taught in their program.¹ And yet, parent ownership of care tasks is only the foundation of parent integration. As seen in Table 3, nurses can use care tasks as teaching tools to build parent capacity to plan, prioritize, pace, and problem solve; make decisions with the care team, and set goals for infant care.

Activating Resources

In our study, parents highlighted how activation of resources was critical to their ability to address their infant’s illness needs. Parents also recognized that activation of resources was also imperative for parents to take care of their own needs. Parents confirmed the vast majority of activation skills in the SFMF, and also identified news skills not currently represented in the SFMF (Table 4). For example, many parents emphasized that their partners were an essential social resource and that co-parenting relationships need constant attention. Based on parents’ reports and literature on the importance of co-parenting, ³⁵ we added support from partners/spouses as a stand-alone skill (Social Resources, Table 4). True family integration requires neonatal nurses care for the whole family, however the family defines its members. Neonatal nurses must be intentional in their integration of fathers and all essential family caregivers. Solely focusing on the mother deprives the family of leveraging all available layers of social support.^36,37

Consistent with recommendations on NICU parent support, ³⁸ parents newly identified activating psychological resources from mental health providers, including individual and marriage counseling, psycho-therapy, and support groups. With high rates of depression and anxiety recognized in this population,³⁹ neonatal teams must provide parents with mental health resources through the community, and ideally through a mental health professional embedded in the care team. ³⁸ Addressing parent depression and anxiety also requires that neonatal nurses and their teams change attitudes and behaviors counterproductive to FICare principles. Parent experiences of conflict and powerlessness are abundant in the neonatal literature. ⁴⁰ In our study, parents leveraged skills in conflict management, boundary negotiation, and communication to have their needs met by the neonatal team, whom they acknowledged held power over their infants and families (Healthcare Resources, Table 4). In FICare, power is shared as parents are equal team members. Much of the conflict and resulting parent stress described in our study stemmed from team members minimizing parents’ role or not sharing power when making decisions. FICare does not eliminate conflict; rather, both parents and staff are supported to respectfully communicate disagreements so that when conflict occurs, all members are heard and relationships with the healthcare team are maintained or even strengthened. ⁴¹

Living with Infant Illness

Consistent with calls for a trauma-informed approach to NICU care,³ parents described skills in confronting and recovering from a traumatic experience filled with emotional pain and psychological suffering (Table 5). Neonatal nurses need to cultivate a bedside environment that supports parents to process and share their full range of emotions. Providing a psychologically safe environment is the starting point for neonatal nurses to help parents develop skills such as confronting change and loss, managing uncertainty, and dealing with discouraging setbacks. The skills parents described while living with infant illness go far beyond the parent education provided in most neonatal units (Supplemental File 5). Yet helping parents engage in making meaning out of their experience and accomplish tasks such as personal growth describes the art of neonatal nursing, and also depicts the spirit of FICare. Fully integrating parents into care means fully caring for the whole parent.

Advancing the Science of Self- and Family Management by Expanding the SFMF

Perhaps one of the most significant ways this work advances the SFMF is through the expansion of the framework’s depiction of Activating Community Resources. Since the original publication of the SFMF in 2012, our understanding of social determinants of health and the basic resources needed to support health and self-care have advanced. The environment and society that parents live in affects their ability to care for their infant. We found that the existing self-management task of “Addressing social and environmental challenges” did not adequately detail the numerous resources parents activated to address the social determinants of health. Our results provide greater clarity and specificity in the types of resources that parents activated, so that clinicians can provide more tailored resources that better meet parents’ needs. Parents frequently activated resources to obtain transportation (e.g., personal vehicle, rides from family, friends), childcare (e.g., daycare, school, family, friends, babysitters), and accommodations for time off work/school (e.g., medical leave, parental leave, short-term disability, paid time off). Not all families have equitable access to these resources, and many families need help in identifying and activating their full range of available resources. Equitably caring for all families means that neonatal teams must partner with parents to activate the resources parents do have, and work with hospital leaders and policy makers to provide access to resources they do not. For example, clinicians and hospital leaders can promote equity in transportation by providing free parking passes, gas cards, and taxi/ride share vouchers. Equity in childcare may require more flexible sibling visitation policies, NICU-embedded child life specialists, subsidized baby-sitting services, and/or volunteers to keep very young siblings safe and non-disruptive in an ICU environment. Equity in access to paid parental / medical leave will require that clinicians and hospitals, both individually and collectively, advocate for legislation that protects families’ economic and job security while parents manage infant care in the NICU and beyond.

Limitations and Strengths

We acknowledge that this paper is based on the lived experiences of a limited number of NICU parents in the United States. This study only includes parents of preterm infants (although some parents had infants born prematurely and with congenital anomalies / genetic syndromes), with most parents having high education levels and more resources. Replication of this work is needed with larger and more diverse parent samples. Parents did not report on every skill, and some skills were discussed more than others. However, we were able to refine and expand upon currently identified skills, contributing to self- and family management science and specifying skills used by NICU parents. We conducted this work prior to publication of the Schulman-Green et al. article on processes of and factors affecting family management, ⁴² thus we used the taxonomy of self-management processes during our analysis. However, the processes of family management (i.e., Focusing on the Patient’s Illness Needs, Activating Resources to Support Oneself as the Family Caregiver, and Supporting a Patient Living with a Chronic, Life-Limiting Illness) very closely parallel self-management processes, and Schulman-Green et al. noted the need for expansion of family management processes. Our work is significant because it adds to the conceptualization of family management as described in the Self- and Family Management Framework. ⁴²

CONCLUSION

In this paper, we showcase self- and family management skills used by parents of preterm infants hospitalized in the NICU, advance self- and family management science, and guide clinical practice. We provide a framework for both parents and clinicians to build parent confidence, competence, and skill in caring for their NICU infants. We must acknowledge the incredible growth, perseverance, and skill of parents to truly be equal partners in their infant’s care. By teaching skills that parents self-identified as helping them to manage infant care, neonatal nurses can better facilitate parent integration into the care team. Finally, future researchers may build upon findings from this study to design, test, and translate efficacious family management interventions that facilitate FICare implementation in the United States.

Supplementary Material

SF 2 Author reflexivity

Supplemental File 2. Consolidated criteria for reporting qualitative studies (COREQ): Domain 1: Research team and reflexivity

SF 1 COREQ checklist

Supplemental File 1. COREQ Checklist

SF 4 activating resources quotes

Supplemental File 4. Parent quotes depicting Self- and Family Management Process: Activating resources

SF 5 living with illness quotes

Supplemental File 5. Parent quotes depicting Self- and Family Management Process: Living with the infant’s illness

SF3 illness needs quotes

Supplemental File 3. Parent quotes depicting Self- and Family Management Process: Focusing on the infant’s illness needs

Acronyms and Abbreviations:

NICU

Neonatal Intensive Care Unit

SFMF

Self and Family Management Framework

FICare

Family-integrated Care