Table 2.

Matrix of empirical evidence.

Authors (year) Country	Purpose	Design	Decision type	Child diagnosis	Sample	Influences of decision-making
Pepper et al. (2012) Canada	To determine perceptions of parental decision-making for extremely premature infants	Qualitative, interpretive description, semi-structured interviews	All NICU decisions	Extreme prematurity	N = 5 families (5 mothers and 2 fathers)	Statistics on outcomes Spiritual and religious beliefs
Chenni et al. (2012) France	To determine the effect of different fetal and maternal variables on parental decision making with CHD	Retrospective chart review	Continuation or termination of pregnancy	CHD	N = 209 fetus	Severity of structural malformation Ethnicity Gestational age Chromosomal abnormalities
Kavanaugh et al. (2010) USA	To describe behaviors nurses use to assist parents in making decisions about life-support for extremely premature infants	Qualitative, longitudinal, collective case study	Preterm delivery	Extremely premature infants	N = 40 cases (n = 40 mothers, n = 14 fathers, n = 29 nurses, and n = 42 physicians)	Parent and nurses’ description of nursing behaviors that promoted decision-making: Providing emotional support Giving information Meeting physical needs of infants and parents Physician description of nurses behaviors that facilitated decision-making: Emotional support Giving information
Grobman et al. (2010) USA	To determine approaches that health care providers could use when caring for parents at risk of giving birth to an extremely premature infant	Longitudinal descriptive	Preterm delivery	High risk periviable infants	N = 40 mothers N = 14 fathers N = 35 physicians N = 17 nurses	Knowledge of condition Clear communication of information Hope
Balkan et al. (2010) Southeast Turkey	To explore factors that impacted parental decision-making about termination or continuation of pregnancy after diagnosis of chromosomal abnormalities	Qualitative descriptive	Continuation or termination of pregnancy	Prenatal diagnosis of aneuploidy	N = 38 mothers	Severity of abnormality Religiosity Family and social influences Perceptions of mother’s health Feeling about having a child with a syndrome Resources to care for child
Feudtner et al. (2010) USA	To test the hypothesis that parental hope and parental perception of the child’s illness course and their positive and negative affect would be associated with decision to enact limitation of intervention order for patients referred to palliative care	Prospective cohort	Limitation of intervention	Neuromuscular disease Metabolic disease Congenital malformation Cancer Respiratory disease GI disease	N = 43 parents of 33 patients	Hope
Dussel et al. (2009) USA	To determine factors associated with planning location of death for a child	Retrospective cross sectional survey	End-of-life	Children who died	N = 140 parents	Diagnosis Religiousness Experience with previous loss Communication with physician Home care services Not significant: Child age Child gender Parental age Marital status Education level Parental support by psychosocial clinician Distance from hospital Number of other children Income Christianity
Einarsdottir (2009) Iceland	To explore how parental influences on making end-of-life decisions for extremely low birth weight infants	Qualitative descriptive	End-of-life	Extremely low birth weight infants	N = 28 mother and N = 25 fathers of 29 infants	No meaningful life Information Knowing another person with disabilities Trust Religiosity and Spirituality Dreams and mediums (spiritism) Diagnosis
Michelson et al. (2009) USA	To explore parental willingness to consider hypothetical withdrawal of life-sustaining therapies and what influences this decision	Cross sectional descriptive study	Withdrawal of life-support	Chronic illnesses Complications from cancer treatment Post surgical Acute diseases	N = 70 parents	Quality of life Suffering Lack of effective treatments available Faith Length of time since diagnosis Finances Inability to consider withdrawing life-sustaining therapies Mistrust/doubt toward physicians Reliance on self/intuition Hope
Lam et al. (2009) Hong Kong	To examine the impact of personal characteristics on ‘life or death’ decision-making for infants	Cross sectional descriptive study	Initiation of life-sustaining treatment	Term infants and premature infants	N = 34 physicians N = 103 nurses N = 189 mothers with term infants N = 297 parents with preterm infants	Parents of premature infants: Secondary education Severity of illness
Verhagen et al. (2009) The Netherlands	To determine the frequency of conflicts about end-of-life decision-making and explore how these conflicts were resolved	Qualitative descriptive	End-of-life	Infants who died in the NICU	N = 147 physicians of 150 infants	Sources of conflict related to neurologic prognosis generally Conflict occurred in 6 cases between medical team members Conflict resolved through: Meetings Clinical deterioration Conflict occurred in 18 cases between medical team and parents (3 cases involved conflict within medical team and between parents) Conflict resolved through: Additional tests Clinical deterioration Meetings Second opinions
Zyblewski et al. (2009) USA	To determine influences of parental treatment decisions for a fetus with prenatally diagnosed with congenital heart disease	Retrospective chart review	Continuation or termination of pregnancy	Congenital heart disease	N = 229 children	Presence of chromosomal abnormality Severity of defect Maternal gravida Maternal age Not significant: Maternal race Fetus gender Maternal parity Insurance status
Boss et al. (2008) USA	To determine the factors parents use in making decisions about delivery room resuscitation	Cross sectional descriptive	Resuscitation	Extremely premature Major anomaly	N = 26 mothers	Intuition about condition Religion and spirituality Hope Relationship with providers
Lan et al. (2007) Taiwan	To investigate the experience of mothers during the decision-making process for child undergoing heart surgery due to congenital heart disease	Phenomenology	Cardiac surgery	Congenital heart disease	N = 9 mothers	What is best for the child Trust the medical profession
Payot et al. (2007) Canada	To describe how parents and providers engage in the decision to resuscitate an extremely premature infant	Longitudinal interpretive qualitative method (prenatal and 4–6 months post delivery)	Resuscitation	Infants at risk for premature delivery at 23–25 weeks	N = 8 couples N = 5 physicians	Information Desire to be a parent Desire to make the ‘right’ decision Support
Ahmed et al. (2006) UK	To explore the attitudes of individuals from four ‘faith’ communities and the attitudes of parents with a child with a sickle cell disorder or thalassaemia major for hypothetical pregnancy of infant with sickle cell or thalassaemia major	Cross sectional descriptive	Termination of pregnancy and reproduction choices	Sickle cell disorders and thalassaemia major	N = 44 members of faith community groups N = 8 mothers of children with sickle cell disorders or thalassaemia major N = 3 fathers of children with sickle cell disorders or thalassaemia major	Termination: Religion Suffering of child Reproductive decisions: Personal moral judgments and beliefs Relationship with God
Snowdon et al. (2006) UK	To explore how parents decide to participate in perinatal randomized controlled trials	Qualitative descriptive	Experimental treatments	Critically ill infants	N = 24 mothers only N = 27 couples (both parents)	Fear No other options Trust Pace of communication
Chaplin et al. (2005) Australia	To explore parents’ experience with a prenatal diagnosis of spina bifida and/or hydrocephalus	Qualitative descriptive	Termination or continuation of pregnancy	Spina bifida Hydrocephalus	N = parents from 13 families (n = 11 mothers and n = 4 fathers)	Inability to understand information Severity of illness Religion Provider recommendations
Partridge et al. (2005) Pacific Rim USA	To determine factors that influence parental decision-making about delivery resuscitation of very low birth weight infants	Cross sectional descriptive	Resuscitation	Very low birth weight infants	N = 327 parents	Emotional attachment Severity of illness Religion Finances Physician opinion Family opinion
Rauch et al. (2005) USA	To identify factors that predict the decision to terminate pregnancy of fetuses with structural anomalies	Retrospective review of state registry and questionnaires to physicians	Termination of pregnancy	Fetuses with structural abnormalities	N = 97 case of fetuses with structural abnormalities	Significant: Gestational age at diagnosis Presence of multiple anomalies Anomalies presumed lethal Not significant: Maternal age Gravida Parity Race Assisted reproductive technology Genetic counseling
Sharman et al. (2005) USA	To determine factors that influence parental decision-making about end-of-life care	Cross sectional descriptive	Limitation of care or withdrawal of support	Malignancy Respiratory failure Neurologic condition Metabolic condition	N = 14 parents of 10 patients	Past experiences with limitation or withdrawal of life support Child’s ‘will’ to survive Do what is best for child Child’s condition Child’s understanding of condition Family opinions Religion and faith Finances
Moseley et al. (2004) USA	To determine if differences exists between White and AA parents when a physician recommends withholding life-sustaining treatment	Retrospective chart review	Withholding life-sustaining treatment	Infants who died in NICU	N = 38 infants	Race not statistically significant between parents of white and AA and those who received recommendation for withholding life sustaining treatment and those who accepted recommendation to withhold life sustaining treatments Descriptively there were differences between whether parents accepted recommendation for withholding life-sustaining treatment. *Not powered to detect differences statistically
Rempel et al. (2004) Canada	Describe how parents make decisions following prenatal diagnosis of CHD	Qualitative, symbolic interactionism	Further testing and continuation or termination of pregnancy	Congenital heart disease	N = 19 mothers and N = 15 fathers of 19 infants	Information about implications for infant and family Chromosomal abnormalities Communication of information
Roy et al. (2004) UK	To determine the frequency and reason for withdrawal or withholding of life sustaining treatments and DNR in infants who died	Retrospective chart review	Withdrawal of life sustaining treatments, withholding life sustaining treatments, and DNR orders	Respiratory failure Congenital anomalies Complications HIE	N = 85 infants who died	Religion Culture
Vermeulen (2004) The Netherlands	To determine influences of decision-making for children born extremely premature	Ethnography	Initiation of treatment	Extremely premature infants	N = 1 hospital	Severity of illness Quality of life
Menahem and Grimwade (2003) Australia	To determine how parents decide to terminate a pregnancy following a prenatal diagnosis of a complex congenital heart defect	Cross sectional survey	Continuation or termination of pregnancy	Complex congenital heart disease	N = 9 couples	No chance for health Suffering Chromosomal anomaly Prognosis Quality of life Fear of loss after surgical intervention Best for family
Redlinger-Grosse et al. (2002) USA	To explore how parents make decisions about prenatally diagnosed infants with HPE	Qualitative descriptive	Continuation or termination of pregnancy	HPE	N = 10 couples and N = 4 mothers	Revisited the decision throughout the pregnancy Religion Personal belief system Information Communication of information Perceived anticipated grief
Brinchmann et al. (2002) Norway	To understand how parents’ participate in life-and-death decisions about very premature or critically ill infants in the NICU	Qualitative descriptive	End-of-life	Infection Birth injury Cerebral hemorrhage Chromosomal abnormality Incorrect diagnosis Complications	N = 35 parents	Survival Varying levels of participation desired Information Communication style
Meyer et al. (2002) USA	To identify influences about end-of-life care	Cross sectional, descriptive	End-of-life care	Children who died	N = 56 bereaved parents	Quality of life Chance of meaningful recovery Pain or discomfort Information Religion and spirituality Child appearance or behavior Advice of providers Attitudes of staff
McHaffie et al. (2001) Scotland	To explore parent perceptions of withdrawing or withholding treatments	Retrospective, longitudinal survey	Withdrawing or withholding treatment	Children who died	N = 59 families at 3 months N = 50 families at 13 months	Visible deterioration Suffering Information about child’s condition Prognosis
Vandvik and Forde (2000) Norway	To understand how parents make autonomous decisions for infants with HLHS	Cross sectional descriptive	Surgical intervention or comfort care	HLHS	N = 20 mother (10 chose surgery and 10 chose comfort care)	Surgical intervention: Death not an option Felt physicians should decide Comfort care: Time Prevention of suffering Parents felt they should decide or collaborative decision with physician

USA, United States of America; UK, United Kingdom; CHD, congenital heart disease; HPE, holoprosencephaly; HIE, hypoxic ischemic encephalopathy; HLHS, hypoplastic left heart syndrome; DNR, do not resuscitate.