Table 1.

Summary of Included Papers

Author last name and study	Year	Study population	Study objective	Benefit assessed by	Benefit described	Burden assessed by	Burden described	Mechanism of reporting benefit/burden	MMAT score (%)
Allen19	2016	n = 13 Bereaved parents of infants w/HIE	Understand the risks and benefits of conducting sensitive research to understand parental experiences of caring for infants with HIE	Parent	Benefit of expression of intense emotions in a nonjudgmental environment; reflection on child's milestones	—	Burden not reported	Structured interviews with content analysis	50
Bingen20	2011	n = 16 Parents with child actively receiving palliative care; n = 9 bereaved parents	Explore respondent comfort with completing a parental palliative care parental self-efficacy measure instrument	Parent	55/58 questions were rated as “important” to ask by >80% of respondents	Parent	53/58 questions were rated as “comfortable being asked” with 5 questions presumably less comfortable areas of inquiry	Focus group interview format conducted by a psychologist to review family experience using the PCPEM	66
Briller21	2012	n = 6 Medical professionals and n = 5 bereaved parents	Explore conceptual and design issues encountered in creating a bereaved parents needs assessment in intensive care setting	Parent	Opportunity to express feelings and remember child	Parent	Evocation of powerful memories and emotions	Qualitative interviews to review participant experience in completing the Bereaved Parent Needs Assessment–PICU	50
Butler22	2017	n = 19 Bereaved parents	Inquire into preferred method of recruitment approach for bereavement studies	Parent	Time and opportunity to “think” about the study and the child; being known, remembered, and included by staff	Parent	Sense of “shock” (2/19) about unexpected research contact after death of child	Interview-based follow-up phone calls with parent participants	75
Cook23	2014	n = 2 Online focus groups with 220 participant posts over five days	Understand impact of electronic bulletin board focus groups for medically fragile populations	Child	Accessibility; opportunity for reflection; community-building interaction	—	Burden not reported	Analysis of focus group postings and researcher reflection	50
Currie24	2016	n = 10 Bereaved parents	Inquire about recruitment approach for bereaved parents after death of infant in neonatal intensive care setting	Parent	Freedom to share stories; opportunity to help others, meaning reconstruction, and increased awareness of their own experience	Parent	None of the bereaved parents reported negative experiences associated with research participation in this study or the timing of the interviews	Qualitative interviews	100
						Researcher
Dallas14	2016	n = 97 Adolescent and surrogate decision-maker dyads	Report the acceptability of and experience with family-centered advance care planning research for adolescents with HIV	Parent	Adolescents and family dyad members, respectively, found participation useful (98%, 98%) and helpful (98%, 100%)	Parent	Experience feelings of sadness with topic (25% parent, 17% child)	Satisfaction Questionnaire by blinded research assistant	75
				Child		Child
Dyregov32	2004	n = 64 Bereaved parents completed questionnaire and n = 69 interviewed	Describe the research participation experience of bereaved parents	Parent	Research participation was positive/very positive in 100% of respondents; benefit themes of telling the story and helping others	Parent	Parents reported that they experienced “some” anxious/tense feelings before interview, interview required “mustering energy” prior	Qualitative interviews	100
Eilegard33	2013	n = 187 Bereaved siblings of pediatric patient with cancer	Describe the research participation experience of bereaved siblings	Sibling	79% of siblings perceived long-term study value such as feeling like their bereavement was more noticed or that participation helped their own grief work	Sibling	14% of siblings reported emotion as “sad” or “stirred up feelings”	Six-item questionnaire	66
					84% perceived short-term benefit such as less anxiety and helping others
Hinds25	2007	Researchers who had participated in at least one of eight end-of-life studies in pediatric oncology	Provide strategies that have been used to implement and complete pediatric end-of-life research studies in oncology	Parent	Positive reports about research participation, including “I like talking about my child,” “I want to help others,” and “I like being in contact with the hospital”	Parent	Only 1 of 191 parents perceived “nothing good” from study participation	Follow-up phone call with three questions to assess positive/negative aspects of participating in research	100
				Researcher		Researcher
				Clinician		Clinician
Hynson26	2006	n = 69 Bereaved parents	Explore the impact of the research process on bereaved parents	Parent	Desire to benefit others (33/47 interviews) from participation in the research; participation provided therapeutic benefit	Parent	One bereaved parent reported that a later approach by the study team (more than two years post the death of the child) would be more appropriate timing for emotional ability to participate. Note: 19/64 upfront participation decline rate (concern participation “would be too difficult”)	In-depth qualitative interviews	75
Jacobs15	2015	n = 17 Adolescent and family member dyads	Report on adolescent and surrogate experience in advance care planning research	Clinician	75% of adolescents believed it was appropriate to discuss end-of-life decisions not only “if dying”	Child	When asked how comfortable are you talking about death, only 12% of adolescent respondents were “not at all comfortable,” and 54% were “somewhat” or “very comfortable”	Oral surveys administered by trained facilitators; written surveys sent to health care providers (after participation in Advance Care Planning research)	66
				Child
					82% considered it important to let their loved ones know their wishes.
					Eighty-three percent of those providers surveyed felt participation in the study was “somewhat”/“very much” helpful to their patients, and 78% felt it was “somewhat”/“very much” helpful to them as providers
Kavanaugh27	2005	n = 23 Bereaved parents	Examine the experience of parents surrounding perinatal loss research	Parent	Cited emotional relief, unique opportunity to talk, opportunity to help others, better understanding of experiences, and evidence someone cared	—	Burden not reported	Standard qualitative question regarding participation experience	75
Kreicbergs16	2004	n = 432 Bereaved parents	Assess the harm and benefit of a questionnaire for bereaved parents	Parent	285/432 participants reported being positively affected by answering the survey	Parent	123/432 participants reported being negatively affected by answering the survey	Written survey	75
Michelson28	2006	n = 70 Parents of hospitalized patients	Examine the reactions of patients' parents to end-of-life decision making research for their child in the intensive care unit	Parent	Perceived sense of “relief” to talk with someone; felt altruistic; opportunity for reflection	—	Burden not reported	Qualitative interview questions	100
Mongeau29	2007	In-home respite program team members	Report on participatory research projects evaluating a new in-home respite program for children requiring pediatric palliative care	Parent	Parent perspective of “being heard” through research participation; parent goal of improving palliative program through research participation; shared vision	—	Burden not reported	Meeting note analysis, researcher reflections, interview questions	75
				Clinician
				Child
Price30	2013	n = 2 Nurse reflections on prior interviews with parents of children with complex palliative care needs	Provide guidance on parental research participation for children with life-limiting conditions	—	Benefit not reported	Researcher	Vulnerability based on both topic and timing of data collection; insensitive wording of research documents (e.g., life-limited vs. complex needs)	Narrative review and researcher reflections	100
							Difficulty ending research relationship especially with multiple interviews; emotional impact
Scott17	2002	n = 81 Bereaved parents	Investigate family members' experiences of involvement in a study following their child's diagnosis with Ewing's sarcoma	Parent	Most parents believed participation would benefit others; 2/3 thought participation was personally beneficial because of communication opportunity; 43% felt the interview “produced good from a bad situation”	Parent	11% parents shared that some questions made them feel “uncomfortable,” 7% found the interview more painful than expected	Mailed, self-administered follow-up questionnaire in follow-up to prior qualitative research participation	75
Starks3	2016	n = 220 Pediatric intensive care patients	Describe a research intervention designed to reduce family stress symptoms through early support from the palliative care team	Parent	Parents voiced appreciating “being able to vent”; “feeling cared about” through the interview, and the interview allowing them to gauge their feelings/experiences	Parent	Low burden scores reported by parents related to their participation in research across all three time points: mean (SD) scores were 1.1 (1.6), 0.7 (1.5), and 0.9 (1.6).	Qualitative inquiry thematic content analysis and written question asking parents to rate level of burden on 0–10 point scale with 0 = no burden	75
Steele37	2013	n = 40 Families to include mothers and fathers	Determine how to improve care for families by obtaining their advice to health care providers and researchers after a child's death from cancer	Parent	Grateful for being remembered and included; maintained connection with the hospital through research; self-expression; helping others; contribution to child's legacy; sense of meaning	—	Burden not reported	Qualitative interviews	100
Steele34	2014	n = 232 Parents caring for child with progressive and incurable condition	Obtain parents' perceptions about their experience of participating in one of two pediatric palliative care research studies	Parent	310/322 (96%) thought conducting research about their families' experiences had at least some value; 163/323 (50%) said that the study had at least some positive effect	—	Burden not reported	“Impact of Participation” interview study assessment	100
Stevens31	2010	n = 91 Family members	Describe the process to design and conduct a research study with families caring for children with life-limiting conditions	Parent	Interviews described as “cathartic” and “helpful”; “no adverse effects” reported by parents or siblings	Parent	Fatigue with interview (tired); emotion of content	Follow-up phone call after qualitative interview	66
				Sibling		Sibling
				Child		Researcher Child
Taneja18	2007	n = 86 Bereaved parents	Assess parents' perceptions of their experience being interviewed after the death of their child	Parent	Appreciated opportunity to talk about their child; 79/86 reported willingness to participate again	Parent	75/86 (87.2%) reported that participation was “not at all” or “a little” stressful	Open-ended verbal questions about interview length, stress, and participation experience	75
Tomlinson35	2007	Review format	Address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care in research	Researcher	Opportunity to share story and provide input for future palliative care programs	Researcher	Time spent participating in research could be spent in other ways, such as with child; burden of being approached for multiple studies	Review of the literature	100

HIE, hypoxic-ischemic encephalopathy; MMAT, Mixed Methods Appraisal Tool; PCPEM, Pediatric Palliative Care Self-Efficacy Measure; SD, standard deviation.