Life After Discharge: What Parents of Preterm Infants Say About Their Transition to Home

    Life After Discharge: What Parents of Preterm Infants Say about their Transition to Home Marina Boykova PhD, RN PII: DOI: Reference:

S1527-3369(16)00029-5 doi: 10.1053/j.nainr.2016.03.002 YNBIN 50644

To appear in:

Newborn and Infant Nursing Reviews

Please cite this article as: Boykova Marina, Life After Discharge: What Parents of Preterm Infants Say about their Transition to Home, Newborn and Infant Nursing Reviews (2016), doi: 10.1053/j.nainr.2016.03.002

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ACCEPTED MANUSCRIPT Life After Discharge: What Parents Of Preterm Infants Say

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About Their Transition To Home

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Marina Boykova, PhD, RN Project Coordinator, Council of the International Neonatal Nurses (COINN) 2110 Yardley Road, Yardley, PA 19067 USA [email protected]

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 1 Abstract Transition from hospital to home for parents of preterm infants (less than 37

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weeks gestation) is fraught with challenges. This article presents findings from a descriptive qualitative pilot study and describes experiences of transitioning from

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hospital to home for parents of preterm infants. An online survey was conducted; parental narratives were analyzed using thematic analysis. The analysis showed tightly

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interwoven themes1: parenting of the preterm infant is challenging2; caregiving is physically demanding3; having a preterm infant alters parental role4; having a preterm

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infant can be socially disruptive; and5 having a preterm infant requires enhanced health care professionals‟ support. The findings provide evidence for the complexity of

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transition in this vulnerable population. This phenomenon has been studied for over

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three decades and yet our knowledge from parental experiences has not led to

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eradicating many of the difficulties parents face post discharge at present.

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Keywords: transition to home, preterm, infant, parents

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 2 Introduction In the United States, the rate of preterm births (birth before 37 weeks‟ gestation)

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increased 36% in the past 25 years; in 2014, 9.6% of all live births, or approximately

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380,000 infants, were premature.1 Due to technological progress and advances in

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medicine and nursing most of the preterm infants survive; neonatal mortality, which is mostly related to prematurity and low birth weight, has decreased to 4.04 deaths per

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1000 live births in the last decades.2 At present, health care professionals in primary health care settings are providing care to a larger number of preterm infants who

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survived yet are at risk for experiencing continuing or developing health problems. 3 Provision of adequate post discharge care for those infants is vitally important as they

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are medically fragile and require thorough follow-up care.4 Often, readmissions and

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rehospitalizations in this population are higher than in other groups of infants. 5-7 The

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epidemiological data explain the medical reasons for infant readmissions and rehospitalizations; however, other possible factors for higher health services usage

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could be related to parental transitional challenges post discharge. It has been suggested that the provision of effective and efficient post discharge care for a preterm infant can be affected by the health professionals‟ inadequate understanding of parental challenges8 and more attention should be given to parents of preterm infants who need support.3 Through the decades, researchers have repeatedly reported the significant challenges parents of prematurely born infants face. The need for advanced caregiving skills and knowledge of the infant‟s health and development, uncertainty of the infant‟s health outcomes, higher caregiving demands, and the need for thorough follow up care

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 3 place a tremendous burden on families.9-12 These parents have elevated stress levels1316

; anxiety17 and depression,18 grief and guilt.19-21 Parents also often require additional

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social and professional supports22,23 and want to be reassured about their skills in

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parenting of their preterm infant.24 However, despite the wealth of research on parenting

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of preterm infants, the phenomenon of transition from hospital to home in the population of parents of preterm infants has received limited attention from nurse researchers. 25 At

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present, there is no definition, no specific theoretical frameworks, and no measurement tools that address transition to home in this particular population to help to prevent

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inadequate health services use and promote infant and family health and wellbeing. There is the need for better understanding of the transition to home after hospital

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discharge in parents of prematurely born infants. This paper describes the data from a

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pilot qualitative study of parental transition to home with the main goal of illustrating the

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parental experiences and challenges after discharge. Purpose of the study

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The main purpose of this study was to explore and describe the experiences of parents of preterm infants after hospital discharge. This study was conducted in 2012 and it was a part of a larger methodological study (instrument development) for doctoral degree (PhD) in nursing. The qualitative data from the study described below were used for revisions and modifications of the Transition Questionnaire items26,27; the revised instrument was tested in 2014 (data not presented here). Design A descriptive qualitative design was chosen for the exploration and description of parental transitional challenges.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 4 Setting The study was conducted online using the SurveyMonkey® web platform. The

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recruitment of the parents of preterm infants for the survey was performed with the help of the moderator of the online blog for parents of preterm infants, Deb Descenza, on the

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www.inspire.com. Data collection

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The survey consisted of 11 questions (see Table 1) in order to explore post discharge experiences of parents of preterm infants; there were also 29 demographic questions.

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After approval by the investigator‟s Institutional Review Board, the survey was opened in mid-July of 2012; the data collection period was one week.

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What was your life like after discharge of your premature baby from a hospital? What were the challenges in the first months after discharge?

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Table 1. Questions for Online Qualitative Study

What has it been like for you taking care of your infant after discharge?

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4. What concerns or problems related to your baby‟s health and care have you had since discharge? 5. Was there anyone who helped you with the baby‟s care? If so, who was that person (or people)? 6. Was there anyone who helped you with information you needed? If so, who was it? 7. How have you been managing your own time? 8. Were you able to share your experiences and feelings with anyone? If so, who was that person (or people)? 9. What health care services did you use after discharge (if any)? What do you think about services provided to you (if any)? 10. Is there anything that could have been done to help make caring for your baby easier for you in the immediate period after hospital discharge? 11. Is there anything else you want us to know about beyond the survey questions listed?

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 5 Participation in the online study was anonymous, with no identifying information collected. Participants self-identified themselves for eligibility in the study; there were no

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limits for the time after discharge of the infant. Inclusion criteria were:1 parents of prematurely born infants who had been hospitalized after birth and discharged home

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(mother or father),2 able to read/write English,3 able to provide informed consent to participate (online version), and4 be at least 18 years of age (as reported by a parent).

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Data analysis

Thematic analysis of the parental narratives was conducted using both inductive and

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deductive approaches28,29 as parental problems have been widely researched during the last three decades, but transition from hospital to home in the population of parents

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of preterm infants has not been well understood and defined. Thus, the inductive

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approach was warranted.28 A deductive approach to content analysis was also applied as all previous knowledge should not have being discarded but used to bring needed

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changes to the existing theoretical frameworks.29 As this study was a part of the larger

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methodological inquiry concerning transition to home and its measurement, emerging themes and subthemes were compared with those postulated by Kenner.30 Qualitative data were organized and open coding was used to create content categories using key ideas in parental narratives. The units of analysis were portions of descriptions given by parents; a key word was assigned to the manifest content of a portion, considering the common theme and meaningfulness.28 A coding scheme was developed; then, codes were grouped and categorized under higher order headings through data interpretation and abstraction.28,31,32

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 6 Results Demographics of the sample

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A total of 52 parents provided full answers to all 11 survey questions. Mothers made up 92.3% of respondents (n = 48). Their mean age was 34.2 (range 20 to 47 years); most

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mothers were married (71.2%) and had health insurance (93.8%). Nine parents were parents of twins. Participants were from four countries (United States of America USA,

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Canada, Australia, and New Zealand); most respondents were from the USA (18 states, n = 42). Fifty-two percent of respondents had over 17 years of education. Those who

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answered the question about annual income (n = 28) had over $50,000 a year; 44.2% of the respondents (n = 48) stated that they did not participate in transitional care

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programs. Mean gestational age for infants was 28 weeks (range 23 to 35), with

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average birthweight 1192 grams and length of hospitalization of 82 days. Time since

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initial discharge ranged from one month to ten years, with 37.5% of the sample being home within last 12 months. Only about half of the sample (48.1%) reported

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participation in transitional/follow-up care programs; 43.8% of parents had their infants rehospitalized after initial discharge; mostly, rehospitalizations were unplanned (66.7%). Themes

Participants provided rich descriptions and reflected on their experiences during transition to home, providing over 120 pages of completed narratives. The essential themes were identified as follows: 

Parenting of the preterm infant is a challenging task.

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Parenting of preterm infant is physically demanding.

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Having a preterm infant alters the parental perception of their role as a parent.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 7 

Having a preterm infant can be socially disruptive.

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Having a preterm infant requires enhanced health professional support.

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Main themes and sub-themes are presented below (see Table 2); direct quotes from parental narratives illustrate the experiences of parents post discharge.

Demanding

Parental Role

Social Disruption

Joy and worry

Sleep deprivation

Confidence

Isolation

Being a parent

Sharing feelings

Knowledge

Decision making

Misundersta nding from others

Reassurance

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Fatigue

Schedule

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Long-lasting impact of initial trauma Learning and informational needs Feeding

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Challenging

Professiona l Support Attitudes

Guilt

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Subthemes

Main themes

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Table 2. Main themes and subthemes emerged in the study

Main theme 1. Parenting of the preterm infant is challenging

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Having a preterm infant at home after discharge brought many challenges to the

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parents. Three sub-themes occurred in parent‟s descriptions of their transition to home: joy with worry, learning and informational need, and feeding difficulties. Joy with worry

Parents reported that joy of being home and worry went hand by hand. They were happy to be home, but constantly worried. Their prominent worries included fear about the infant being sick again or something bad happen with the infant. My life was filled with joy and trepidation. I was happy because after 29 days he was finally able to be with us at home and did so in time for Christmas, but I was nervous about taking care of him.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 8 My life turned upside down. I was EXCITED to finally have him home. Couldn't believe he was mine. I was SCARED that I wasn't doing the right things for him. I

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was very nervous.

I was ecstatic, but terrified at the same time. I remember being confident that I

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was ready to care for them, but terrified that something would happen, and they would have to be readmitted.

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…the first month, even the first year, was full of lack of sleep, a lot of worrying, and yet joy at being with our tiny miracle.

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We were constantly checking to make sure he was breathing and we were always worried something was wrong.

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It was wonderful to have him home, but I was definitely scared that he would

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have another apnea spell or heart rate drop that we would not know about

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because he was not hooked up to monitors. I did not want to leave his side at all. Long-lasting impact of initial trauma

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Importantly, effects of the traumatic initial hospitalization, worries about infant health and development, fears of rehospitalization and symptoms corresponding with the post-traumatic stress disorder (PTSD) were reported during the transition to home. These traumatic experiences and worries about infant sometimes persisted for a very long time and affected parenting styles and parental use of health care services after discharge. Even now that he… is 18 months actual 14 corrected, a cough in the night makes me panic… Every time she gets a cold I feel helpless and worry this will put her back in ICU.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 9 Our daughter is three years old now and we still run her to the emergency room for nearly anything.

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PTSD is not just for soldiers. Any alarm, bell, or cough sends both my husband and myself into a panic attack, dripping with sweat.

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Parents reported life changes that were caused by having a preterm infant and affected the overall wellbeing of the families.

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It was strange getting back to "normal", because things weren't going to be normal anymore.

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My husband and I both had three children separately before this one, and the whole NICU experience just turned our lives around completely.

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We never left him with anyone and even the little things I, as a mother would get

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paranoid about. We still to this day have him sleep in our room, and he is almost

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5… life changes, not only after being home, but forever. Learning and informational needs

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Parents also reported that they had to learn how to provide care to their frail infant. Their learning needs included specific techniques in feeding, managing equipment or administering medications while wishing for more knowledge and information on infant caregiving, behavior, development and growth. Informational resources were not always available and they often had to find information on their own. …steep learning curves – learning how to administer all the meds, learning how to use the g-tube (he didn't have it long before discharge), learning how get from place to place with oxygen, monitor, diaper bag, medical records folder, feeding pump, feedings and meds…

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 10 There were also the issues of knowing when and what to adjust due to their prematurity.

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I have no idea what to feed him because I don't know how old I should treat him. I found it hard to know where to go for help. The internet has a lot of information

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and that was certainly overwhelming and hard it know which was the part to focus on.

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My daughter came home with a g-tube and it was a week old so the wound was still fresh so when she started crying uncontrollably I had no idea what to do. I

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had to teach myself all about the g-tube by doing. …most of my knowledge came from the tons of research that I did on my own.

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…I could have been sent home with a bit more info and maybe training on

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watching the eyelids and finger nails instead of the monitor. Feeding

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Feeding and breastfeeding challenges were prominent in the parents‟ descriptions of

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their experiences post discharge. Feeding and breastfeeding problems (such as lactation issues, latching, spitting and reflux, or knowing what formula would be best for the infant) were interwoven with the needs for more specific information and knowledge about caring for a preterm infant. Breastfeeding was important for mothers to feel themselves as a mother. Formula intolerance and problems with feeding tubes were the reasons for readmissions. Feeding difficulties added to physical exhaustion in parents. Breastfeeding was our biggest challenge. We worked our hardest with breastfeeding using the pump, nipple shields and not being able to latch properly, I had gotten thrush, nipple cracks, and bleeding nipples, blisters, and mastitis.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 11 The other huge challenge we faced was feeding him. After he had been home about 2 weeks he started refusing to eat. I think the worst part was that none of

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his doctors believed me; they all thought I was over reacting. It reached the point that he stopped eating altogether and had to be hospitalized again. He came

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home with an NG tube. This battle has continued, and he is finally starting to eat and gain a little weight at the age of 2-1/2.

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…severe reflux and not tolerating formula she was put in in the NICU about two days before discharge, the constant feedings were really hard too.

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…after one day at home, it was clear that our daughter was not managing on oral feeding alone - she would take a very small amount at a time and we were frantic

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trying to get her to feed any time she opened her eyes. We were readmitted to

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hospital and an ng tube was reinserted and she was fed.

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…feeding has been a constant problem. It would have been easier to move straight to bottles, but I really wanted to nurse him, and after a long battle he took

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to it well. But for whatever reason, he just didn't get enough from it, and we have had to supplement him almost all of the time. Now at 6 months adjusted, we are accepting that he doesn't get enough from it and are moving to formula and using up the last of the frozen pumped milk. My daughter had a lot of feeding challenges. She basically spit up everything she ate. Main theme 2. Parenting of preterm infant is physically demanding. The infant‟s busy and demanding daily care routine combined with parental worries and stress

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 12 placed high physical demands on the parents. Sleep deprivation and fatigue related to busy schedule were the main sub-themes occurred during analysis.

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Sleep deprivation

Constant worries about the infant resulted in heightened parental vigilance at home,

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which, in turn, caused sleep deprivation. Busy caregiving and feeding schedules, most of the time overwhelming, also influenced the amount of sleep in parents.

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The first month or so I feel like we slept with one eye open making sure she was still alive and breathing. I guess I felt hyper vigilant, paranoid that anything

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different might mean something was wrong…

There was little time for my husband and I and if I took that time, there was no

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expense of my sleep.

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time left to take care of me… If I want to do something for myself it comes at the

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My husband and I took turns sleeping on the floor so we could silence the alarm w/out waking up the whole family.

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Fatigue

Fatigue and exhaustion related to caregiving were mentioned; parents had little time for themselves due to multiple caregiving tasks and schedules, numerous visits to health checks and specialists. Being tired produced feelings of being „not a good‟ parents because parents were not able to enjoy their infant. Life was a combination of joy and fatigue. …emotionally, there was the disappointment – thinking it was supposed to be some panacea getting the baby home and really, it was just a different kind of hard.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 13 We enjoyed having him home, but it was hard to adjust to doing all that extra work and still find time to just enjoy him.

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When you have a child with special needs or the potential for special needs, you don't really have your own time. Sometimes I get to watch some TV at night…

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but usually I have been too tired.

The overwhelming thing on discharge was the tiredness.

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It was exhausting being alert for signs of distress all the time. Schedule

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A tough schedule for medication administration at home, feedings, frequent health check visits, and specialist appointments added to parental caregiving fatigue and

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exhaustion, increasing stress already caused by constant worries about the infant.

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Life after my son came home was very stressful. We had a strict feeding

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schedule and a strict medication schedule to keep. We also had many doctors and therapists to juggle. At one point he had five or six specialists, a home nurse

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and six therapists.

Maintaining medication schedules, doctor visits (pediatrician and specialists), and worrying about them becoming ill were the biggest challenges. …the schedule was grueling. My son was tube fed around the clock every three hours with each feed lasting an hour. He received ten different from one to four times a day – In total I gave 28 syringes of medicine every day. He was/is on oxygen with a continuous monitor… we also had non-stop appointments. Nurses coming for visits, going to see one of the many specialists and just checking in with the pediatrician.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 14 Keeping on schedule, whether it be feeding or sleep/napping schedule with all of the outside specialist appointments was difficult. This was one of our biggest

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hurdles…

Main theme 3. Having a preterm infant alters the parental perception of their role

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as a parent. The early birth, which is often unexpected, and the infant‟s hospitalization affected parents‟ perceptions of their own role as a parent. It included their confidence

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levels, feelings of not being a parent, ability to make decisions and expressed feelings of guilt.

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Confidence

The infant‟s initial life-threatening illness and hospitalization, caregiving and parenting

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under supervision in a hospital produced feelings of low self-confidence and fear of

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making mistakes in the caring and nurturing of the infant. The fear of not understanding

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the behaviors and needs of their own infant was mentioned. Would I be able to tell what he needs, what if he cries a lot? Is my breastmilk

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going to be enough for him? I was scared that I couldn’t handle the job. Before he was born I was very confident that I was prepared due to my time as a nanny. After a month in the hospital of asking permission to hold, feed, diaper and bathe our son, my confidence was shot… When we were in hospital there was always someone there watching them, and access to medical care immediately – there was a feeling of security in that. When we were discharged it was hard to be confident in ourselves and in the fact that our babies were doing well and that they didn't require the monitors and care.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 15 Being a parent Parents reported feelings of „not being a parent‟ which they had connected with

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overwhelming and advanced caregiving routines at home and special health needs of an infant. They questioned their own abilities to advocate for their infant and relied on

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health professionals as the major players for decisions in infant care. I feel often that I am more a nurse and therapist than a mother but it's all I know.

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I sometimes think that looking after his medical needs prevented me from just being his mother and having time to enjoy that.

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I am afraid that I am not asking enough questions, or the appropriate question. If I ask for certain procedures or referrals am I being to overpowering, in the end,

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her physician is the expert.

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Caregiving was… emotionally challenging, you have nurses around you in the

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hospital to help you, when you come home, you are alone and the normal joys that a mother experiences, are there, but your thoughts are mainly around is your

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baby doing what normal babies do, you feel on edge and worried, not happy all the time. added to that, being a mom and not knowing if what you are doing is right.

Decision making Hospitalization of the premature infant also influenced parental perception of their abilities to make decisions for their baby. Impaired decision making ability was connected with being in the hospital where health care professionals were making decisions most of the time.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 16 It took a while to get used to making decisions about my daughter, I had got very used to the hospital team deciding everything. It was very hard to not react to

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every little thing.

There was a nurse by our side "in charge" while we were in the NICU and it was

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weird to be home by ourselves. It took a few days to really feel comfortable taking care of our daughter even though we'd been doing it all in the level 2

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NICU.

Challenges in the first months after discharge included learning how to care for a

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baby on our own without nurses or doctors. We were used to having someone to answer our questions on a daily basis and when we were at home we didn't have

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that.

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Guilt

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Guilt about giving premature birth was expressed by mothers and affected their emotional wellbeing in addition to existing worries about the infant and distorted

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parental role. Feeling tired all the time due high caregiving demands and not being able to enjoy baby‟s being home added to maternal guilt. I have lingering guilty feelings that I did this to them, but there are worse things than being tired. I just take everything day by day and hope that I'm doing things right! Emotionally, there was the disappointment – thinking it was supposed to be some panacea getting the baby home; and really, it was just a different kind of hard. And guilt, like you should be happy and you’re just overtired and crabby.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 17 Feeling guilty influenced the way mothers started to parent their infants trying to compensate for a NICU stay.

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I feel more inclined to give him whatever he wants – I cannot let him cry – because I feel like he went through so much already. Plus, I want to hug him

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constantly. It was absolutely horrible for me when I had to return to work. Main theme 4: Having a preterm infant can be socially disruptive. Often, social

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routines were disrupted: parents reported that many life changes occurred due to having a preterm infant at home. Parents were unable to live their lives, as they were

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able to do it before the birth and discharge of their preterm infant. Respondents emphasized three major experiences: social isolation, difficulties in sharing feelings, and

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misunderstanding from others.

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Social isolation

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Parents expressed feelings of social isolation and loneliness, often related to parental willingness to protect the infant from any health risks outside the house and, thus,

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limiting their social activities.

My husband and I were home-ridden and fearful of leaving our child alone with anyone. We never took our child anywhere because we were afraid any little bug would kill him. We were all alone and stuck in our house and felt like we got hit by a train. For a long time I didn't feel like I could relate to other new moms. I couldn't take my baby anywhere for fear he would catch something.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 18 I guess I felt more alone as people (outside of husband and other preemie parents) don't get what you go through… you really feel alone in it all once you

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take your fragile child home.

We were also aware of the risks of illness post discharge so were very careful

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about where we went (when we finally left the house) and who we had into the house. Life was very restricted and we felt very socially isolated…

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Difficulties in sharing feelings

Mostly, parents reported that they shared feeling with husbands, friends, and family

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members. However, despite such support in many cases, many parents also had difficulties in sharing their feelings with members of their close networks.

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…not many people know all the details of his birth or what I feel.

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I have shared my son's story but not in great detail. As far as how I feel now, no, I

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haven't told a soul how I'm feeling. I found it extremely hard to share with people. No one understood.

talk to.

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No one I knew had even heard of what I had, and I really didn't know anyone to

No one else understands, not even my husband. I think I shared things mainly with my mother, and close friends. I didn't have anyone else who had dealt with prematurity to share with. Misunderstanding from others Mothers also reported misunderstanding of infant‟s vulnerability from their close network members. This attitude towards their preterm infants increased parental feelings of isolation and difficulties in sharing what they were feeling.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 19 When I shared with friends who had children, I found they didn't understand my concerns or they would ask questions like I was such a novelty. I found that lack

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of understanding early on quite difficult.

Although people knew that our son was born premature, only we knew what the

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potential risks involved were when exposing him to the real world and with people who didn't understand why we were asking them to wash their hands and

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they would look at us funny.

Life… was very stressful, hectic and isolating. A lot of my family and friends didn't

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understand why I couldn't allow them to visit or if they visited they had to sanitize, scrub up and be free of colds/sickness.

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…it was also really hard to maintain outside relationships and make time for my

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husband. We felt like we spent all of our time and energy taking care of our son,

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and the other people in our lives couldn't understand that. Everyone thought because he was out of the NICU we should be able to go do things and be like

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other parents of newborns. It was hard to realign everyone's expectations including my own. Main theme 5: Having a preterm infant requires enhanced health professional support. Health professionals‟ support was important for parents post discharge and its significance was strongly reflected in parental narratives. Several sub-themes occurred: attitudes of health professionals toward prematurely born children, their professional knowledge and parental need to be reassured by trusted health care professionals. Attitudes of the professionals

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 20 Attitudes of health professionals were critical for parental transition to home and primary care settings. Parents were willing health professionals acknowledge their infant as a

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special and unique one, but also as „normal‟ and they were upset with „labeling‟ of their

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infant as „small‟ or „preemie‟. Parents also wanted to be „heard‟ and „listened to‟ when

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meeting with health care professionals.

It would have been helpful for medical professionals to listen before making

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pronouncements. That was the biggest road block. A parent of a child with special needs shouldn't have hurdles placed in front of them by "professionals."

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Listening is key.

I sometimes feel as though our providers don't listen to me as a parent… I speak

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up for myself, but feel like they run over me or push their own agendas rather

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than allowing me the opportunity to advocate for my child.

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The biggest challenge is medical "professionals" treating parents as though they are anxious beings who can't handle information. If doctors, therapists, and

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nurses actually took the time to hear what parents are saying, then real problems could be identified early. When I said my son was sleeping, I wasn't some new parent who was exaggerating. Clinic reminds me that we have preemies, and I leave those appointments feeling guilty that my body rejected my babies. After our last appointment, I was terribly depressed for several days afterwards. I'm starting to wonder about the importance of this intervention service. Knowledge of the professionals

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 21 Having knowledgeable physician/specialist, consistency in given information and better coordination of care for their infant were ones of the prominent needs that parents

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mentioned in their recollections of post discharge experiences.

Pediatricians and pediatric RNs were woefully ignorant of most things preemie,

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so I sought out online advice forums, which helped… The pediatrician didn't know/understand preemie life, so his advice was for term babies (adjusted, of

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course). He underestimated reflux, undertreating it…. Medical incompetence? It wasn't malpractice, it's just that finding people who specialized in understanding

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the needs of preemies was hard.

Medical professionals treated us as if they had never seen a premature child

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before. Our child was treated like a typical child, only smaller. We had to fight for

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everything… We were sent home with our child and written off. We were given

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the attitude that, because he was home, he was fine. He was not. The pediatrician is not a neonatologist... or experienced with IUGR babies and

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offers little guidance. He treats her like a regular baby. we used… pediatrician, pediatric GI, pediatric ENT, developmental pediatrician, public health nurse (weekly in-home measurements), emergency room. All but the developmental pediatrician lacked the knowledge they should have had about early preemies. Misdiagnoses reigned. Need for reassurance Parents also wanted to be reassured in their parenting and caregiving by health care professionals. Being used to having trusted health professionals in the hospital settings,

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 22 parents wanted someone like that to be present at home to check on them and reassure that everything is going okay.

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Coming home from NICU was bitter sweet… It felt so good to finally be able to take my son home after 86 long days in the NICU. However, it was kinda

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worrisome without my nurses by my side and there to answer any question I had. I wished I could have taken a nurse home with me, to walk me through

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everything. I wish that there would have been someone for me to talk to, to reassure me that everything I was feeling was completely normal.

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I think it would have been helpful to have a nurse visit the home once or twice in the first month after discharging from hospital. Just to help parents feel like they

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are on the right track with care.

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Availability of other supports and resources (such as about financial help or having a

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babysitter for a vulnerable infant) were also important for parents. Since he was on oxygen when he was released most people were afraid of him,

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and it was extremely difficult to find a baby sitter if I needed one. I think if there had been more education about the benefits he could receive with his Medicaid it would have helped. With his feeding issues we really struggled to buy his food and pay our bills. We didn't find out until much later that he could have gotten WIC. I think some sort of support group afterwards would have been helpful. I wasn't given any online groups or information about local help.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 23 Discussion Results of this study are consistent with the findings of some of the previous

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research on transition and the parenting of once sick infants. Several researchers reported that while parents are looking forward to taking their infant home, they are also

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anxious and worried about their abilities to provide proper care at home. 33-35 As this study, worries and anxiety were also related to the fear of infant‟s repeated sickness

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and the occurrence of breathing problems.35 As in this study, the other study also reported that mothers felt unprepared and have to learn how to care for their infant

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through trial-and-error when resources are not available.36 As decades ago,30,37,38 learning caregiving and parenting is still difficult for parents of preterm infants at

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present. The other qualitative studies reported that mothers often struggle with all the

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parenting and intensive caregiving responsibilities33,36,39 Specific caregiving at home (e.g., tube feeding, home oxygen therapy, monitoring) is physically demanding and

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exhausting: fatigue and caregiving burden were underlined in several studies. 21,34,40

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Feeding and breastfeeding a preterm infant were found to be the biggest challenges in this study as well as in other studies.41-44 Lower parental confidence and uncertainty about their own parenting abilities has been previously reported as well. Being separated from infants and restricted from decision making and caregiving while in the hospital, parents often begin to question their own parenting abilities and exhibit lower parental self-confidence, uncertainty about being „good‟ parent and perceived inability to perform proper caregiving. 35,45,46 Feeling of “not being a parent”, alteration of parental role due to the hospital

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 24 environment and the medical fragility of the infant have as well as determination to do everything for the infant have also been documented.34,47,48

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The psychological consequences of a preterm birth and infant hospitalization such as significant anxiety, emotional distress, PTSD, and depression, which can be

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lasting for a long time, have been repeatedly reported in the population of parents of preterm infants.46,49,50 In this study, where the period after discharge was up to ten

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years, parents reported the long-lasting impact of premature infant birth and transition to home on their lives. Other studies also reported these long-term psychological

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consequences as affecting parental attachment to the infant, infant‟s development, distorting parent-infant interactions and producing higher parenting stress.51-54 Grief and

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guilt as well as mothers‟ difficulties in sharing feelings with others and forming secure

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relationships with their infants and close social network members have been reported by other researchers.19-21,47,55 Social isolation and misunderstanding from others about

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infant‟s vulnerability and fragility added to challenges of parents post discharge. The

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same findings have been reported elsewhere.21,56 Professional support was found influencing parental transition to home on other studies as well.45,57 Several recent review papers on parenting and transition to home in parents of preterm infants 25,57,58 have provided similar conclusions: compensating for the past, protecting infant fragility, constant worry, developing sense of family and being a parent, improved confidence in care with support and importance of health professionals‟ qualifications and communication with families were named as major aspects of transition and parenting at home after hospital discharge.

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 25 In summary, the findings of this qualitative online survey demonstrated the myriad of tightly interwoven challenges that parents of preterm infants faced after

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discharge. Within the long awaited joy of finally being home with their infant, parents described their post discharge caregiving and parenting as a very demanding and

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challenging task, accompanied with high levels of anxiety and worry with long-lasting psychological consequences and changes in ways of parenting. Intensive caregiving,

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the infant‟s busy daily routine and schedule placed high physical demands on the parents causing sleep deprivation, fatigue, and exhaustion. Having the infant

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hospitalized also altered their parental perception of their role as a parent, lowered their self-confidence and produced feelings of being not a parent, decreased their ability to

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make decisions for their infant‟s care and health. This feeling of role alteration occurred

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in first time as well as multiple time parents. Parental willingness to protect their vulnerable infant from any possible health risks often led to social isolation, which was

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also associated with misunderstanding of the infant‟s conditions and needs from

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parents‟ close social networks and family members. Professional support was critical for parental transition to home and influenced their emotional and psychological wellbeing as well as infant‟s health. Parents wanted health professionals who were more educated in the specific primary care of premature infants; they also wanted more individualized and coordinated care as well as to be reassured by professionals in their parenting and caregiving during post discharge transition to home. Conclusion From the findings of this study and available literature, transition from hospital to home in parents of preterm infants appears to be a multidimensional, complex, and

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 26 dynamic phenomenon. Parental stress, worry, and anxiety exist to a large extent when parents take on all the responsibilities for care of their preterm infant after hospital

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discharge. Parenting preterm infant post discharge involves fatigue and social isolation; parental confidence in independent caregiving is lowered. During transition to home

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parents often require enhanced professional support from health care providers. Despite recent changes in the provision of health care (e.g., family-centered and

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developmental care in the hospitals, rooming in, availability of follow up clinics and transitional programs, counselling services), parents continue to have a lot of

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transitional challenges at home. The findings of this study and evidence from available research suggest that parental challenges and inadequate health care provision post

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discharge could collectively result in less than optimal care for the infant, affect the

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infant‟s and family‟s health and increase the health care costs related to avoidable

Limitations

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complications, readmissions, and rehospitalizations.

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Findings from the study should be taken with some degree of caution for several reasons. First, the sample consisted mostly of mothers, so paternal experiences have not been completely represented. Second, there were parents of twins and respondents from various countries, which could influence the findings. Third, the post discharge time had a wide range (from few months to 10 years), thus parental recollections of their experiences could be affected. Fourth, infants were comparably small and could have many health issues, prematurity-related complications and specific needs; these data were not collected and findings might not be applicable to larger or healthier premature infants. Also, only English language speaking participants could participate, so findings

ACCEPTED MANUSCRIPT Boykova – Life After Dishcarge 27 might not be applicable for non-English speaking parents from other cultural and ethnic groups.

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Implications

This paper adds to the evidence that transition from hospital to home in parents of

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preterm infants is challenging and might influence health outcomes for infants and their families. More research is needed in the area of transition to home with parents of

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preterm infants, as transition to primary care settings in this population has not been fully explored. Attention to the effects of health care professionals‟ support and trust

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between parents and health professionals that could add to parental stresses or use of the emergency room or readmissions should be given.

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Acknowledgement

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This article described what parents reported as transition experiences and

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challenges; findings from this online qualitative study were used for revisions and modification of the items of the Transition Questionnaire26 that was subjected for field

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testing and exploratory factor analysis in 2014 (manuscript preparation in progress).

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