title: Good-parent beliefs of parents of seriously ill children.
abstract: OBJECTIVE
  Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support.
  
  
  OBJECTIVE
  To assess parents' perceptions regarding the relative importance of 12 good-parent attributes.
  
  
  METHODS
  A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness.
  
  
  METHODS
  Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics.
  
  
  RESULTS
  The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions.
  
  
  CONCLUSIONS
  Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Chris
authors.initials: C
authors.lastname: Feudtner
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Jennifer K
authors.initials: JK
authors.lastname: Walter
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Faerber
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Douglas L
authors.initials: DL
authors.lastname: Hill
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Karen W
authors.initials: KW
authors.lastname: Carroll
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Cynthia J
authors.initials: CJ
authors.lastname: Mollen
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Victoria A
authors.initials: VA
authors.lastname: Miller
authors.affiliation: Department of Anesthesiology and Critical Care Medicine, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Wynne E
authors.initials: WE
authors.lastname: Morrison
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: David
authors.initials: D
authors.lastname: Munson
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Tammy I
authors.initials: TI
authors.lastname: Kang
authors.affiliation: Department of Nursing Research and Quality Outcomes, Children's National Health System, Washington, DC4Department of Pediatrics, School of Medicine and Health Sciences, George Washington University, Washington, DC.
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
mesh_terms: D000208:Acute Disease / Q000523:psychology*; D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D002669:Child Welfare / Q000523:psychology*; D002675:Child, Preschool; D002908:Chronic Disease / Q000523:psychology*; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D015143:Philadelphia; D013315:Stress, Psychological; D011795:Surveys and Questionnaires