SEARCH

SEARCH BY CITATION

Keywords:

  • parent decision making;
  • trust;
  • provider communication;
  • theory;
  • NICU;
  • ethics

ABSTRACT

  1. Top of page
  2. ABSTRACT
  3. Method
  4. Findings
  5. Discussion
  6. Conclusion
  7. Acknowledgement
  8. REFERENCES
  9. Biographies

Objective

To synthesize the existing qualitative literature about parent ethical decision making in the neonatal intensive care unit (NICU) and to investigate the potential impact of culture on parents’ decision making experiences.

Data Sources

PubMed, CINAHL plus, and PsychInfo using the search terms parental decision making, culture, race, decision making, and parental decisions.

Study Selection

Qualitative research studies investigating decision making for infants in the NICU from the parents’ perspective were included. Studies involving older pediatric populations were excluded.

Data Extraction

Ten primary qualitative research articles were included. The primary author read all manuscripts and tabulated themes related to parents’ ethical decision making.

Data Synthesis

Study findings were synthesized using meta-ethnography involving translating concepts of separate studies into one another, exploring contradictions, and organizing these concepts into new theories. Key themes included parent involvement in decision making, parental role, necessity of good information, need for communication, desire for hope and compassion conveyed by providers, decision making satisfaction, and trust in caregiving team. A preliminary theoretical framework of ethical parent decision making was modeled based on the proposed relationships between the themes.

Conclusions

Parent preferences for their involvement in decision making, their perceptions of communication with providers, and their relationships with providers are all important factors in the experience of making decisions for their infants. Needs of parents were the same regardless the ethnic or racial diversity of study participants.

Approximately 12% of all births in the United States are preterm, occurring before 37 weeks of completed gestation (Martin et al., 2010). Prematurity is one of the leading causes of childhood death in the United States, and a significant cause of morbidity and poor neurodevelopmental outcomes in those who survive (Behrman & Butler, 2007; Field & Behrman, 2003; Martin et al.). Because parents are viewed as moral surrogates for their infants and because they and their infants must deal with the lifelong consequences of preterm birth, it is important for parents to be involved in ethical treatment decisions that are made for their critically ill neonates.

The American Academy of Pediatrics has emphasized the need for shared parent-physician decision making when considering initiation or withdrawal of intensive care for high risk newborns (American Academy of Pediatrics Committee on Newborn and Fetus, 2007). Yet physicians who specialize in care of newborns in the neonatal intensive care unit (NICU) are often unprepared to engage parents in end-of-life decision making (Boss, Hutton, Donohue, & Arnold, 2009). Adding to the complexity of these discussions, it is not always clear what level of involvement parents wish to have in treatment decisions regarding their critically ill newborns. Many factors could potentially influence parents’ desired participation as well as their satisfaction with decisions made for their infants.

Qualitative research approaches are often ideal for examining understudied phenomena in health care because they allow full exploration of the patients’ experience of health care services. Synthesis of qualitative research is viewed as particularly valuable in examining health care decisions, the decision making process, and the context in which patients view decision making (Hansen, Draborg, & Kristensen, 2011). Therefore, the purpose of this paper is to synthesize the existing qualitative literature about parental involvement in ethical decision making for critically ill neonates. Synthesis of qualitative findings can also be used for theory development by identifying common domains of interest across studies (Hansen et al.). The resulting theory can then suggest hypotheses for further testing. A secondary aim of this study is the development of a preliminary theoretical framework of parent ethical decision making.

Method

  1. Top of page
  2. ABSTRACT
  3. Method
  4. Findings
  5. Discussion
  6. Conclusion
  7. Acknowledgement
  8. REFERENCES
  9. Biographies

Search Strategy

A literature search was performed using the PubMed, CINAHL plus, and PsychInfo databases. The search terms utilized were parental decision making, culture, race, decision making, and parental decisions. Limits were set to include only research articles published from 1998 to 2011. Additional limits were English language publications and research involving human neonates (birth to 28 days).

Inclusion and Exclusion Criteria

Primary qualitative research articles were included in this synthesis if they addressed decision making for critically ill neonates from the parents’ perspective. Articles involved decisions for infants who were being treated in a NICU or whose preterm birth was imminent and for whom resuscitation and treatment decisions were made at birth. Studies in which researchers investigated decision making in older pediatric populations or decisions of a less critical and non-ethical nature, such as immunization decisions, were excluded. Studies were excluded if they focused primarily on decision making from the health provider's perspective.

A table describing the sample, purpose, method, and study outcomes was created to summarize the studies (see Table 1). Each study was given a number. Meta-ethnography synthesis was used that involved translating concepts of separate studies into one another, exploring contradictions, and organizing these concepts into new theories (Barnett-Page & Thomas, 2009).

Table 1. Summary of Qualitative Studies of Parent Decision Making in the Neonatal Intensive Care Unit
Study #1st Author/ YearSampleRace/ EthnicityPurposeMethodDecision Making Themes
1Alderson, 2006Parents of 80 infants (all mothers, 15 fathers). 40 healthcare practitioners England52% White 25% Black African or African-Caribean 3% Asian 9% mixed race 11% not stated“…compares standards in the recent guidance with parents’ views and experiences of shared decision-making…”Ethnographic, observation and semi-structured interviewsfirst meetings and ‘minor’ informed decisions, contrasting decision contexts, clinical and parental choices and consent, helpless observers, missed opportunities, parents’ standards for informed consent,
2Boss, 200826 mothers of infants who died within the previous 5 years. USA62% white 38% black/other1) Describe values parents apply to delivery room resuscitation decisions; 2) Describe parents’ recall of discussions with physicians; 3) Identify what parents want from physicians as they make delivery room resuscitation decisionsMulti-center qualitative study, semi-structured interview.Perception of resuscitation options; consideration of physicians’ predictions; reliance on religion, spirituality and hope; desire for physician hope and compassion, regardless of the predicted neonatal outcome
3Brinchmann, 200235 parents of 26 children who were hospitalized at birth. NorwayNot StatedDescribe parents’ attitudes towards involvement in decision making in the NICUUnstructured, in-depth interviews, grounded theory.Indecision and uncertainty (ambivalence), information and communication, participate but do not decide, seeming to be included, the parents’ child, individual consideration
4Brosig, 200719 interviews with parents. (Mothers, Fathers, and 1 Aunt) USA84% Caucasian1) How do bereaved parents handle their grief? 2) What is important to parents during their child's end-of-life (EOL) care? 3) What helped parents cope? 4) What recommendations do parents have for improving EOL care?Semi-structured interviewHonesty, empowered decision making, faith/trust in nursing care, validation of decision
5Einarsdottir, 200928 mothers and 25 fathers of 32 surviving invants who were born weighing less than 1,000 grams IcelandNot StatedDescribe how parents of ELBW infants relate to questions about withholding/withdrawing life support therapy (LST).Ethnographic observation, interviews.Parental involvement, difficult decisions, alternative help
6Kavanaugh, 20056 mothers, 2 fathers, 4 maternal-fetal medicine physicians, 2 neonatologists, 2 obstetric nurses. USAAll but 1 parent identified as African American or BlackDescribe decision making and support needs of parents, physicians and nurses dealing with life support decisions for premature infants.Qualitative collective case study methodShared decision making, information and involvement, encouragement and hope
7McHaffie, 2001108 parents of 62 deceased infants. ScottlandNot StatedExplore parents’ perceptions of witholding/withdrawing treatments for their neonateSemi-structured interviewsActive decision making, full and honest information, concrete evidence of a poor prognosis
8Orfali & Gordon, 200475 mothers of critically ill or deceased babies USA, FranceNot StatedExamine parents’ experiences of decision making in the NICUEthnographic, in-depth, semi-structured interviewsLength of stay – more experience = more comfort with the situation and greater ability to participate, trust, medical paternalism, parental autonomy
9Payot, 200713 French-speaking couples at risk of preterm delivery CanadaNot StatedExplore how parents engage in decision making surrounding imminent preterm deliveryIn-depth semi-directed interviews, qualitative analysis using constant comparison method.Parents attempts to counterbalance uncertainty, parents: a decision that is supported, “shared space”
10Wocial, 200020 parents whose infants were treated (and died) in a NICU USA94% White 67% had some college ed. 92% had health insuranceExplore parents’ perceptions of decision making regarding withdrawal of LST in the NICU.Qualitative, open-ended interviews.Meaning, information, trust, involvement

Quality Evaluation

An evaluation of the quality of the literature is a common step in synthesizing quantitative study findings. However, Sandelowski, Docherty, and Emden (1997) in their seminal work on qualitative metasynthesis concluded that studies should not be excluded from a review based on quality, but that those individuals synthesizing the literature should use quality criteria general enough to be applied to any qualitative study. Therefore, seven criteria suggested by Kitto, Chesters, and Grbich (2008) were used for assessing qualitative research in this synthesis: (a) clarification refers to a statement about the aims or research question; (b) justification is an explanation of why qualitative approach was the best for addressing the study aims/question; (c) procedural rigor is a statement about data collection and analysis methods; (d) representativeness refers to the sampling techniques used to address the question; (e) interpretation is a conceptual discussion about the results and their linkage to existing or new theory; (f) reflexivity is a statement of the effect of the data on the investigator's views; and (g) transferability is the evaluation of the extent to which findings can be applied to similar contexts or to policy or practice. Two authors reviewed the selected articles independently regarding these criteria and then discussed any conflicts to reach consensus on whether the criterion was present in a particular article.

Method of Synthesis

Meta-ethnography was the method of synthesis used in this review. This method involves the translation of concepts of separate studies into one another, exploring contradictions, and organizing this into new theories (Barnett-Page & Thomas, 2009). The selected articles were reviewed in detail for themes that related to parents’ experiences and thoughts on treatment decision making for their critically ill newborn. Decision making themes from each article were entered into a chart, and similar themes collapsed for brevity and simplicity. Quotes from the original publications are provided to illustrate the various aspects of these themes in the following sections. One author created the initial themes that were refined after discussion with a second author who reviewed all articles and the initial themes.

Findings

  1. Top of page
  2. ABSTRACT
  3. Method
  4. Findings
  5. Discussion
  6. Conclusion
  7. Acknowledgement
  8. REFERENCES
  9. Biographies

The searches returned 776 citations, and after a review of their abstracts, only 21 articles potentially met the inclusion criteria. These articles were reviewed in detail and 11 additional studies were excluded. A total of 10 qualitative articles met the inclusion criteria of this study. Tables 1 and 2 summarize the characteristics of the selected studies. Table 3 summarizes whether the seven quality criteria for quality research were present.

Table 2. NICU Parent Decision Making Study Design Details
   Parents ofParents of   
 IncludedDescribeddeceasedliving  Time Between Discharge/
StudyFathersRaceinfantsinfantsRetrospectiveProspectiveDeath and Interview
1x  x x4–6 yrs (for subset of 15 parents)
2 xx x 10 months- 5 years
3xxxxx 1–8 years
4xxx x Mean 1.91 years
5x  xxx?
6xxxxxx28 days after birth or 3 weeks after
       death
7x x x 3 months and 13 months after death
8  xxxx?
9x xxxx4–6 months
10xxx x 3–11 months
Table 3. Assessment of Quality of the NICU Parent Decision Making Studies
Study #12345678910
Clarificationxxxxxxxxxx
Research question/aims          
Justification     x xxx
Why design was chosen          
Procedural Rigorxxxxxxxxxx
Method well-described          
Representativenessxxxxxxxxxx
Sampling technique supports study aim          
Interpretationxxxxxxxxxx
Conceptual discussion of findings          
Reflexivity        x 
Statement of effect of findings on researcher's views          
Transferabilityxxxxxxxxxx
Relevance of findings to practice/policy          

Most parents wanted to be involved in ethical decision making for their infants.

Four studies included parents of only deceased infants, two included only parents of living infants, and four included parents of both living and deceased infants. The time between the infant's death or discharge and the interview ranged from 28 days to 8 years. Only five of the 10 studies described participants’ race. In those five studies, four included samples that were 52–94% White, while one noted that all but one parent identified themselves as African American or Black. When measured against one another, the diversity of participants did not appear to make any difference in the reports of the study findings. Eight of the ten studies included fathers. In three of these studies the proportion of fathers who participated was not indicated, while in the remaining five studies 18–78% of fathers participated. The study purposes all included some aspect of describing parents’ experiences with and/or views on treatment decision making for their infants. Although some studies provided sparse details on the study methods, others described their methods, which included ethnographic observation, semi-structured interviews, and unstructured interviews. Five studies were completed in the United States, and the other studies took place in England, Norway, Scotland, Iceland, France, and Canada.

A total of six ethical decision making themes were found in the selected articles. Key themes discovered included: parent involvement in decision making, the parental role, necessity of good information, need for communication, decision making satisfaction, and trust in caregiving team. Table 4 describes the frequency with which these themes occurred among the selected articles.

Table 4. Decision Making Themes by Study
 Parental  Decision   
 involvement inParental role/ MakingHope/  
Study #decision makingresponsibilityInformationSatisfactionCompassionTrustCommunication
1xxxx  x
2xxx xx 
3 xxxx  
4x  x   
5xxxx   
6xxxxxx 
7xxxx   
8xxxxxxx
9xxxxx  
10xxx xxx

Parent Involvement in Decision Making

The theme of parent involvement in decision making refers to the amount of input parents want to have (or actually do have) on treatment decisions for their infants, as well as the conditions of involvement in these decisions imposed on the parents by the medical setting. Most parents wanted to be involved in decision making for their infants. The type of involvement differed, with some parents feeling that being well-informed about the infant's plan of care was sufficient (Einarsdottir, 2009; Orfali, 2004). These parents preferred that the health providers made the final decision:

As long as the doctor is fully communicating, tell you exactly what's going on, if, if this can work or if that can work and doctors know what can work and what cannot work, just tell us what you are going to do and what's going to work and just do it…. It wasn't a decision for me to make. Whatever decision, everything they did for her, the doctors and the nurses made that decision. (Kavanaugh, Savage, Kilpatrick, Kimura, & Hershberger, 2005, p. 354)

Other parents preferred shared decision making in which they and the health provider made the decisions together (Alderson, Hawthorne, & Killen, 2006; Boss, Hutton, Sulpar, West, & Donohue, 2008; Brosig, Pierucci, Kupst, & Leuthner, 2007; Einarsdottir, 2009; McHaffie, Lyon, & Hume, 2001; Payot, Gendron, Lefebvre, & Doucet, 2007; Wocial, 2000). One parent described her satisfaction with her perception of shared decision making, “I am so glad that they made me a part of it. […] They made me a part of it; I was happy, cried and angry with them [the doctors]. We worked together well…” (Orfali & Gordon, 2004, p. 354). Finally, some parents preferred to be the primary decision makers (with or without input from the health providers): “I would like to decide… In fact parents should have the last word and the neonatologists should give advice… that is their work,” (Einarsdottir, p. 40).

The conditions for parental involvement in treatment decisions varied by unit and by parent experiences. Some parents felt that they were welcomed as a member of the team and were encouraged to participate. This variation was true even in some units that had a more paternalistic approach, as long as the healthcare team communicated freely and openly with parents. Feeling freely included and involved was generally experienced by parents in a positive way. For example, one parent described feeling included in the process despite not actually making the decisions:

We did not decide anything, but they talked with us a lot. We were kept informed the whole time. There were probably things that they did not tell us, but we felt that we were in some way participating in the decision without being included in the final decision, which we were not. (Brinchmann, Forde, & Nortvedt, 2002, p. 396).

In contrast, some parents felt that they had to force their involvement in decision making by asking questions and negotiating with health providers. One parent described having to force her involvement in decisions about life-sustaining treatment for her child:

One of the pulmonary doctors called me in and said, ‘she is having a hard time breathing and we are going to put her on a respirator,’ and I said ‘no you are not’ and he said ‘yes we are.’ I said ‘I don't want any extra measures taken if she is going to die; we are going to let her die.’ He's like ‘you can't do that’ and I said ‘yes I can’. (Brosig et al., 2007, p. 512)

Some parents felt that they had to force their involvement in decision making by asking questions and negotiating with health providers.

Feeling the need to force involvement in decision making was generally experienced by parents in a negative way.

Parental Role

Parental role was described by parents as their duty to care for their infants in a certain way. Some parents felt that their role was to participate in “minor” decisions only. One mother described her participation in such decisions:

When it isn't anymore about life and death, you can start questioning things. Last week for example, they wanted to have a procedure done for this and that reason… Well, I doubt that it is so indispensable to have a tube pulled through the mouth to the stomach of a tiny little one who weighs 1.8kg! See, now it is different because you can start to question if it really has to be done! (Orfali & Gordon, 2004, p. 342)

Other parents felt that they were responsible for making all important decisions about the care of their infants, no matter how unpleasant it might be. One parent who felt this way stated, “It is very convenient to push this all away and say the physicians should decide, but I think that in the long run one would like to make the decision rather than blame others” (Einarsdottir, 2009, p. 41). Finally, some situations occurred where parents felt that there was no choice. For example, some parents felt that the decision was up to God: “When they told me they thought she was not going to survive, I put it in God's hands. God had made her into a baby, and if I had made it that far [with the pregnancy], it was up to Him.” (Boss et al., 2008, p. 585)

Information

Information was an important aspect of parents’ experiences making decisions for their infants. This theme encompasses the information provided to parents by healthcare providers about their infants’ condition, prognosis, and possible treatments. Parents differed on the amount of information they preferred, as well as their experiences in obtaining information about their infants’ condition. Some parents wanted all information to be provided to them: “My view is that it is better to know: ‘Possibly your child has a problem, and therefore […] we are going to give you physiotherapy from day one’” (Alderson et al., 2006, p. 1326). Other parents wanted to be spared all of the details because they felt that knowing all of the possibilities would be stressful, “I did not want to be worried about something that might never happen. When the problem is there, you tackle it” (Einarsdottir, 2009, p. 39). The availability of information differed from unit to unit and parent to parent. Some parents felt that information was freely available to them, “I always felt everyone was open with information…I can't think of anything they could have done differently” (Brosig et al., 2007). Other parents felt that they had to actively seek out information in order to make informed decisions, “some nurses it's, ‘Yes he's ok.’ ‘OK?’ And I find I have to push and I have to ask questions. I don't want to be pushy, but I want to know the smallest detail” (Alderson et al., p. 1323).

Parents’ perceptions of the information received also varied. One parent felt that the health providers manipulated information in order to make parents more likely to agree with their recommendations. One parent who was concerned about the way that information was presented to parents stated, “This is the decision of parents, but they will not make that decision without having information from physicians. The question is: how will they present the information” (Einarsdottir, 2009, p. 40). In some situations parents also felt that important information was regularly withheld from parents: “They don't tell parents until the parents show concern [… or if] there is a chance of not getting the severity level right […] I think that is wrong. Even if they only slightly think there might be a problem, they should be right on it, explaining it and giving you a list of things you can do” (Alderson et al., 2006, p. 1325). However, the majority of parents did not have such negative experiences and felt generally well informed.

Communication

The theme communication involved parents’ experiences with both good and bad communication with the health providers in the NICU and how it affected their participation in decision making for their infants. Good communication was described by parents as having easy access to health providers and feeling that information was readily provided to them: “Number one, lay it on the table, be truthful with the parents…So I would say to any physician give as much information as needed. Allow the parents to ask. I don't care how silly it may seem to them, but allow them to ask the questions so they can better understand what's taken place” (Kavanaugh et al., 2005, p. 355). Parents felt that good communication enhanced their participation in decision making for their infants.

Decision Making Satisfaction

This theme describes parents’ satisfaction with the experience of making decisions for their infants’ care. Parents were satisfied when they felt included and involved in the decision and had the support of health providers: “It was our decision to make and everyone was very wonderful in that way. There was no one that ever said to us ‘I think you should do this or I really think you should do that,’ or even made us feel in any way that the decision we were making was inappropriate” (Brosig et al., 2007, p. 512). Parents felt dissatisfied when they thought that providers had gone over their heads and excluded them. This situation occurred with a couple who believed that health providers had determined to end their child's life without their consent (McHaffie et al., 2001, p. 342).

Good communication was described by parents as easy access to health providers and the feeling that information was readily provided to them.

Trust

Trust in the health provider is the parents’ confidence in the healthcare provider's competence, confidentiality, and dependability. Parents mentioned trust in health providers across studies as a factor that was important in helping them make decisions for their infants. Trust in the health providers may have influenced parents’ participation in decision making for their infants. Parents specifically spoke about factors that facilitated trust and factors that were barriers to trust. Parents developed trust when providers appeared knowledgeable, freely provided information to the parents, and seemed to have the best interests of the infant in mind. A parent from a French NICU explained why he trusted the providers he encountered:

I had total trust in the team. They were always straightforward, and nice and talking to you. You would ask questions and they would immediately answer. You had the impression that nothing was withheld from you, that everything concerning your child's health was told. That was so important. To have a good doctor-parent relationship, a trust between us… well, as a physician I knew he would do the best for my child. I knew he would act ethically anyhow… (Orfali & Gordon, 2004, p. 345)

However, parents were hesitant to trust providers when they provided only negative information, when the information they provided did not match the parents’ own observations of their infants, and when they stressed the uncertainty of the situation. The following is a parent's explanation of the confusing situation when the health provider's statements contrast with the parent's own observations:

The things that they said he couldn't do, he could do… She said he would never suck on a pacifier, well he… he loved sucking on a pacifier. …They said he could not recognize us, but yet when [the father]… especially [the father], [was there] he [the baby] would light up. I mean you could just see it in his eyes. So we knew that he was conscious… it was confusing. I mean they were telling you one thing, but yet another thing happened. (Wocial, 2000)

Discussion

  1. Top of page
  2. ABSTRACT
  3. Method
  4. Findings
  5. Discussion
  6. Conclusion
  7. Acknowledgement
  8. REFERENCES
  9. Biographies

Some of the themes identified in this synthesis were consistent with the findings of previous studies of parents with ill children. The finding that parents had a certain idea of what their duty as a parent was regarding decision making is consistent with the findings of Maurer and colleagues (2010) who studied parents of children with terminal cancer. In this study, parents also had an idea of what parents who did right did and this included providing support and presence, and sacrificing for the child. Hinds and colleagues (2009) found that making prudent decisions in the best interest of the child was the most frequent example given by 89% of 62 parents of a child with terminal cancer.

The finding that trust in the health providers in the NICU was important to help parents make decisions for their newborns is consistent with the findings of Huang and colleagues (2010) who studied 266 parents of children with life-limiting conditions. These authors found that greater trust in the physician was related to greater desire for information about their child's quality of life.

Relationships among Themes

Relationships among the themes identified are proposed in Figure 1. The proposed relationships are derived from the literature cited earlier in this paper, as well as the qualitative findings of the articles cited in this synthesis. The process of ethical decision making begins with parents receiving information and communicating with providers. The freedom with which information is provided and the ease and frequency of communication impacts parents’ trust in the providers. Parents’ level of trust also affects their integration of the information they receive as well as their need for further communication. Hope and compassion conveyed by providers is another factor that may affect parents’ level of trust. It also may influence their evaluation of information received and their experiences communicating with health providers. The process of decision making is facilitated by obtaining information and communicating with health providers. Parents’ trust in the health providers also influences the process of ethical decision making for their infants. Finally, parents’ experience of decision making depends on the decision making process itself, as well as their feelings about the trustworthiness of the health providers they interacted with surrounding the decision making.

image

Figure 1. Theoretical Framework on Parental Ethical Decision Making.

Download figure to PowerPoint

Limitations

Several limitations influenced this integration of qualitative studies. First, few researchers investigated decision making for critically ill neonates from the parents’ perspective. Of the ten studies that fit our selection criteria, only half described the participants’ race and ethnicity, and most of those studies had predominantly white/Caucasian participants. The studies included very sparse details on the methods used, making it difficult to evaluate the study design and findings. Additionally, a limitation of qualitative synthesis is that it may be difficult to synthesize results from methodologically different studies and it may be difficult to know if some content relevant to the synthesis was omitted because it was not the primary focus of the original study (Thorne, 2009). In this synthesis, some studies did not have parent decision making as their primary focus, and therefore may not have discussed more detailed information about decision making in their findings. Finally, while the majority of the studies had a retrospective component, only 5 of the 10 studies included a prospective component, increasing the risk of recall bias. Despite these limitations, this study is unique as the focus was to integrate the existing qualitative study findings on parent decision making for critically ill neonates.

Implications for Practice

The findings of this integration of qualitative literature have many implications for practice. First, parents of critically ill infants have varying preferences for involvement in decision making. Health providers need to take time to discern these preferences. It may be helpful for providers to sit down with parents at regular intervals and assess their satisfaction with communication as well as their current needs and preferences. In this way, provision of information, communication, and parent participation could be tailored to each family. In the absence of time to individually discuss each family's needs and preferences, care should be taken to allow the family ample opportunity to ask questions and discuss procedures and test findings. Even parents who do not want to actually participate in the decision making for their infants appreciate the feeling of being involved and listened to.

Implications for Future Research

Though the study findings included in this integration can be extremely valuable to health providers who work with critically ill infants and their parents, further targeted research will significantly add to our knowledge in this area. Studies that focus specifically on parents' experiences of decision making for their infants will be helpful in identifying further parent decision making themes. In addition, particular attention should be paid to factors that impact parents’ trust in providers, as this appears to influence their participation in decision making as well as their satisfaction with the experience of decision making for their infants. Finally, prospective studies that focus on parents who are currently experiencing the hospitalization experience should be performed in order to reduce the risk of recall bias.

Conclusion

  1. Top of page
  2. ABSTRACT
  3. Method
  4. Findings
  5. Discussion
  6. Conclusion
  7. Acknowledgement
  8. REFERENCES
  9. Biographies

Approximately 14% of infants are admitted to intensive care units after birth (National Perinatal Information System, 2011). For some infants, their lives will end here. How parents are integrated into the care of their children, how they are assisted to make ethical decisions, and how they are treated by providers will be remembered by parents all of their lives. This study contributes to our knowledge of parental wishes to shape how our care of them is derived.

Acknowledgement

  1. Top of page
  2. ABSTRACT
  3. Method
  4. Findings
  5. Discussion
  6. Conclusion
  7. Acknowledgement
  8. REFERENCES
  9. Biographies

Funded by National Institute of Nursing Research, 1 F31 NR011375 and National Institute of Health T32 NR07968–05, and Ellen Zamoiski Predoctoral Fellowship, Johns Hopkins University School of Nursing.

REFERENCES

  1. Top of page
  2. ABSTRACT
  3. Method
  4. Findings
  5. Discussion
  6. Conclusion
  7. Acknowledgement
  8. REFERENCES
  9. Biographies
  • Alderson, P., Hawthorne, J., & Killen, M. (2006). Parents’ experiences of sharing neonatal information and decisions: Consent, cost and risk. Social Science and Medicine, 62(6), 13191329.
  • American Academy of Pediatrics, Committee on Fetus and Newborn. (2007). Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics, 119(2), 401403.
  • Barnett-Page, E., & Thomas, J. (2009). Methods for the synthesis of qualitative research: A critical review. BMC Medicine, (9), 59.
  • Behrman, R. E., & Butler, A. S. (Eds.) (2007). Preterm birth: Causes, consequences, and prevention. Washington, DC: National Academies Press.
  • Boss, R. D., Hutton, N., Donohue, P. K., & Arnold, R. M. (2009). Neonatologist training to guide family decision making for critically ill infants. Archives of Pediatrics & Adolescent Medicine, 163(9), 783788.
  • Boss, R. D., Hutton, N., Sulpar, L. J., West, A. M., & Donohue, P. K. (2008). Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics, 122(3), 583589.
  • Brinchmann, B. S., Forde, R., & Nortvedt, P. (2002). What matters to the parents? A qualitative study of parents’ experiences with life-and-death decisions concerning their premature infants. Nursing Ethics, 9(4), 388404.
  • Brosig, C. L., Pierucci, R. L., Kupst, M. J., & Leuthner, S. R. (2007). Infant end-of-life care: The parents’ perspective. Journal of Perinatology, 27(1), 510516.
  • Einarsdottir, J. (2009). Emotional experts: Parents’ views on end-of-life decisions for preterm infants in Iceland. Medical Anthropology Quarterly, 23(1), 3450.
  • Field, M. J., & Behrman, R. E. (Eds.) (2003). When children die: Improving palliative and end-of-life care for children and their families. Washington, DC: National Academies Press.
  • Hansen, H. P., Draborg, E., & Kristensen, F. B. (2011). Exploring qualitative research synthesis: The role of patients’ perspectives in health policy design and decision making. Patient, 4(3), 143152.
  • Hinds, P. S., Oakes, L. L., Hicks, J., Powell, B., Srivastava, D. K., Spunt, S. L., . . . Furman, W. L. (2009). “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. Journal of Clinical Oncology, 27(35), 59795985.
  • Huang, I. C., Kenzik, K. M., Sanjeev, T. Y., Shearer, P. D., Revicki, D. A., Nackashi, J. A., & Shenkman, E. A. (2010). Quality of life information and trust in physicians among families of children with life-limiting conditions. Patient Related Outcome Measures, 2010, (1), 141148.
  • Kavanaugh, K., Savage, T., Kilpatrick, S., Kimura, R., & Hershberger, P. (2005). Life support decisions for extremely premature infants: Report of a pilot study. Journal of Pediatric Nursing, 20(5), 347359.
  • Kitto, S. C., Chesters, J., & Grbich, C. (2008). Quality in qualitative research: Criteria for authors and assessors in the submission and assessment of qualitative research articles for the Medical Journal of Australia. Medical Journal of Australia, 188(4), 243246.
  • Martin, J. A., Hamilton, B. E., Sutton, P. D., Ventura, S. J., Mathews, M. S., & Osterman, M. J. K. (2010). Births: Final data for 2008. National Vital Statistics Reports, 59(1), 371.
  • Maurer, S. H., Hinds, P. S., Spunt, S. L., Furman, W. L., Kane, J. R., & Baker, J. N. (2010). Decision making by parents of children with incurable cancer who opt for enrollment on a phase I trial compared with choosing a do not resuscitate/terminal care option. Journal of Clinical Oncology, 28(20), 32923298.
  • McHaffie, H. E., Lyon, A. J., & Hume, R. (2001). Deciding on treatment limitation for neonates: The parents’ perspective. European Journal of Pediatrics, 160(6), 339344.
  • National Perinatal Information System/Quality Analytic Services, Prepared by March of Dimes Perinatal Data Center. (2011). Special care nursery admissions. Retrieved from http://www.marchofdimes.com/peristats/pdfdocs/nicu_summary_final.pdf
  • Orfali, K. (2004). Parental role in medical decision-making: Fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units. Social Science and Medicine, 58(10), 20092022.
  • Orfali, K., & Gordon, E. J. (2004). Autonomy gone awry: A cross-cultural study of parents’ experiences in neonatal intensive care units. Theoretical Medicine, 25(4), 329365.
  • Payot, A., Gendron, S., Lefebvre, F., & Doucet, H. (2007). Deciding to resuscitate extremely premature babies: How do parents and neonatologists engage in the decision? Social Science and Medicine, 64(7), 14871500.
  • Sandelowski, M., Docherty, S., & Emden, C. (1997). Qualitative metasynthesis: Issues and techniques. Research in Nursing and Health, (20), 365371.
  • Thorne, S. (2009). The role of qualitative research within an evidence-based context: Can metasynthesis be the answer? International Journal of Nursing Studies, 46(4), 569575.
  • Wocial, L. D. (2000). Life support decisions involving imperiled infants. Journal of Perinatal and Neonatal Nursing, 14(2), 7386.

Biographies

  1. Top of page
  2. ABSTRACT
  3. Method
  4. Findings
  5. Discussion
  6. Conclusion
  7. Acknowledgement
  8. REFERENCES
  9. Biographies
  • Sara A. Rosenthal, PhD, RN is an assistant professor in the School of Nursing, Notre Dame of Maryland University, Baltimore, MD.

  • Marie T. Nolan, PhD, RN is a professor and Chair of the Department of Acute and Chronic Care, School of Nursing, Johns Hopkins University, Baltimore, MD.