Table 1.

Integrative literature review method.

Stage of review	Decisions and rationale
Problem identification	Over the past decade, healthcare systems and providers have opted to include parents in making decisions for medically complex children. Parents who participate in decision-making can regret their decisions resulting in psychological stress, increased parental mortality, mental illness, and morbidity. To gain a better understanding of influences effecting parents making decisions and potentially develop interventions to support parents, a literature review was proposed. Therefore, the purpose of this integrative review was to describe possible factors that affect parental decision-making for medically complex children.
Literature search	The overarching focus of this review was parent decision-making for medically complex children. In an effort to identify the maximum number of articles, initial search strategy included the term ‘parent’ combined with ‘decision-making’ in PubMed, Cumulative Index of Nursing and Allied Health Literature, and PsycINFO using English language and dates between 2000 and June 2013. The large number of articles yielded from this strategy was reduced by excluding duplicate articles identified from multiple databases and applying the following criteria first through review of article titles and then through a more comprehensive review of the remaining article abstracts. The inclusion criteria were decisions involving life-sustaining treatments with the intent to ‘cure’ life-threatening illnesses or withdrawal and termination of treatments with probable death as the outcome and empirical data with a sample size greater than 1. For example, life-sustaining treatments could include invasive cardiac surgery for a child with hypoplastic left heart syndrome (HLHS). The children in the studies needed to be less than 12 years of age, as well.
	Rationale for life-sustaining treatments with the intent to ‘cure’ life-threatening illnesses or withdrawal and termination of treatments with probably death as the outcome:
	These types of decisions were exclusively chosen because they often involve death as a possible outcome even with treatment. Parents are stressed and can regret their decisions later and have psychological problems years following the decisions. Therefore, providing support through interventions is necessary to possible prevent or lessen the extent of psychological problems these parents face.
	Rationale for empirical data only:
	Results from literature will guide future research designed as interventions to help parents make decisions or support them through the process. Using expert opinions when empirical data is available is not advisable when using evidence-based medicine.
	Rationale for selecting studies with a sample size greater than one:
	Sample size of one can be powerful, but when designing interventions for parents using studies with greater power is more desirable. Choosing to use studies with a larger sample size did exclude studies exploring legal rulings on single cases because they involved only one subject. It could be argued that these rulings have a broad impact because they change the way the health care system interprets laws and guidelines; however, the author felt that many of the cases are single examples that represent special circumstances that cannot always be understood without studying all the details of the cases which was not the intent of this review.
	The exclusion criteria were decisions surrounding the death of a child including organ donation and location of death, child participation in decisions, and samples of children with cancer. Rationale for excluding decisions surrounding the death of a child including organ donation and location of death:
	Organ donation and location of death are both important in the trajectory of a child’s death, but the decisions that occur prior to the donation or the actual death may have more bearing on the psychology effect on the parents. Therefore, these studies were excluded.
	Rationale for excluding child participation in decisions:
	When children participate in the decision-making process more variation is added and was excluded at this point because the author was trying produce recommendations for interventions to help parents exclusively make decisions for their children.
	Rationale for excluding samples of children with cancer:
	Parents of children with cancer are often faced with multiple different types of decisions about treatment. The decisions do include life-sustaining treatments and also decisions about experimental treatments and sometimes decisions about withdrawal and termination of treatments, but the trajectory of making decisions for these children is often prolonged and is affected by the previous decisions. Therefore samples of children with cancer were excluded because it was not possible to disentangle how previous difficult decisions effected the current decision being examined by the study.
Data evaluation	The final sample for this integrative review included empirical reports. The primary sources included multiple methods to examine factors that effect parental decision-making: retrospective chart reviews, collective case-studies, longitudinal descriptive studies, qualitative descriptive studies, qualitative interpretive studies, prospective cohort studies, phenomenology, retrospective review of state registries, qualitative symbolic interactionism, and ethnography. Since many standard scoring systems are based on the quality of the research design, attempting to assign scores to each of the different types of study designs in this integrative review would have been complex and likely would not have yielded any additional information. Thus quality scores were not assigned.
Data analysis	Data were extracted from the primary source and recorded in a matrix in Table 2. The data included study design, decision type, child diagnosis, sample characteristics, and results. The results from each study were the influences that effected parental decision-making. These influences were defined from each article individually and then synthesized into major themes. If the themes varied across types of decisions these differences were also explained. The following themes were identified: information needs, seriousness of illness, no other treatment options, child’s best interests, religiosity and spirituality, parental characteristics and past experiences, and emotional support.