TABLE 1

Study Characteristics and Quality, in Chronological Order (n = 13)

StudyDesignSettingSampleLoE
Jefferson et al 19911Qualitative, retrospectiveICU17 patients with various illnesses (2 mo–15 y)IV
Wharton et al 19962Quantitative, descriptiveNSConvenience sample of 76 parents of patients with physical/cognitive disabilities and/or chronic illnesses (mean = 8.4 y)IV
Schultz-Grant et al 19983Quantitative, descriptiveSchoolConvenience sample of 214 school nursesIV
Parker et al 19994QualitativeInpatient, outpatientConvenience sample of 13 family members of patients with DMD, BMD, or SMA (mean = 16.4 y, range: 8–21 y)IV
McAliley et al 20005Quantitative, descriptiveDifferent schools, hospital107 adolescents, healthy or with various illnesses (15–18 y)III
Toce and Collins 20036Quantitative, descriptiveNSCarers of 83 pediatric patients with various life-limiting illnesses, 40% imminently dying (30% ≤ 6 mo at enrollment in program)IV
Lyon et al 20047Quantitative, descriptiveInpatient, outpatientConvenience sample of 50 patients, 50% with chronic illnesses (13–21 y)IV
Erby et al 20068Qualitative mainlyNS24 and 17 parents of patients with DMD (2–37 y)IV
Hammes et al 20059Qualitative, retrospectiveNS17 patients with AD and various illnesses (2 mo–12 y) and 13 parentsIV
Wiener et al 200810QualitativeOutpatient20 patients with HIV-1 or cancer (16–28 y)IV
Lyon et al 2009a,11 2009b,12 and 201013Quantitative, RCTOutpatient HIV-adolescent clinics38 dyads of HIV-infected patients (14–21 y) and surrogatesI
  • BMD, Becker muscular dystrophy; DMD, Duchenne muscular dystrophy; LoE, level of evidence: I. RCT, II. non-RCTs, III. Observational studies with controls, IV. Observational studies without controls and qualitative studies. NS, not stated; SMA, spinal muscular atrophy.