Table 1.

Second Order Findings Reported by Publication Type

ORIGINAL RESEARCH – MIXED METHOD STUDIES
Study	Participants	Risk of Bias	Second Order Findings by Care Grouping
Edwards, 2008 – United States One-time point cross-sectional interview and survey to determine alignment of parental understanding of prognosis and treatment goals at diagnosis and EoL	Bereaved parental dyads (n=76 parents)	1. Yes 2. Yes 3. Yes 4. No 5. No 6. No	SC: Within couples disagreement on goals at EoL correlated with both parents who reported greater suffering for child (p=0.03). FS: Many families reported their child’s QoL fair/poor and described the child’s death as not very peaceful. DM: Poor agreement was noted about primary goal of care within couples (k=0.07). Agreement within couples not critical factor in allowing both parents to feel they had accomplished their goals for child (78% parents felt goals accomplished). However, both parents were more likely to achieve their goals when at least one parent focused on lessening suffering.
Heath, 2009 – Australia Self-report questionnaires and semi-structured interviews on perceived quality of EoL care	Bereaved parents (n=96 interviewed, n=89 completed surveys)	1. No 2. Yes 3. No 4. No 5. No 6. Yes	FS: Of those parents who believed their children were old enough to participate in discussions with their doctor, 90% felt that the primary oncologist included their child to the right extent while 10% of parents felt that their child was not involved enough in discussions. Parents rated the primary oncologist’s care positively when believed the primary oncologist gave bad news in a sensitive and caring manner (p<0.01), gave clear information about what to expect in EoL period (p<0.01), provided a feeling of preparedness for EoL period (p<0.01), and communicated directly with the child (p<0.01).
Hinds, 2012 – United States Experimental, non-randomized feasibility study which involved timely placement of a summary of parent decision-making and good parent definition in the medical record as a parent-clinician EoL communication intervention	Parents (n=62) of 58 children and their oncologists (n=126)	1. No 2. Yes 3. No 4. No 5. No 6. No	FS: Six out of tensatisfaction and preferences measures had >97% agreement within three days of intervention (overall parent satisfaction); remained high three months after intervention. SS: Physicians reported intervention helped to reduce tension among clinicians. Soc: The largest category of clinician response (n=75) indicated improved professional interaction (efforts to support parents) and many clinicians (n=22) described increased personal connection with parents through intervention.
Jones, 2006 – United States Pilot mixed-method survey on social workers’ perceptions regarding EoL needs	Pediatric oncology social workers (n=131)	1. Yes 2. No 3. No 4. No 5. No 6. No	DM: Social workers recognized that adolescents need control over treatment decisions and choice of where to die. Q: Social workers ranked pain control and symptom management, ability to talk freely about feelings and fears, consistent caregivers, normal childhood activities, companionship, and assistance with telling parents and siblings their concerns as highest child needs. Psych: Supportive counseling and emotional support at EoL recognized as a need; traditional counseling services as well as companionship and guidance. Soc: Social workers emphasized attentiveness to child’s unique and widely affected social network.
Saad, 2011 – Lebanon Self-report questionnaires and semi-structured interviews on perceived quality of EoL care	Bereaved parents (n=29)	1. No 2. Yes 3. Yes 4. No 5. No 6. No	DM: Only one third of parents reported involvement in resuscitation and home-based care decision-making options. SC: Children experienced an average of 8.3 symptoms (range 2–12) with fatigue, anorexia, depression, and pain highest prevalence. Parents reported child suffered “a lot/great deal” from ≥1 (93%) and ≥5 symptom (69%) at EoL. FS: While parents rated care as “very good/excellent” (93.1%); 83% of parents identified deficiencies in communication. CB: Barriers to the parent’s adjustment included fear of clinical deterioration (50%) and perceived failure as parent (25%) Q: Themes for improving care included service accessibility and empathy. Psych: Three-fourths of parents suggested improved psychological support, developing social and spiritual support for both children and parents, and care coordination. Soc: Support was the most prevalent facilitator theme (55% mentioned spiritual support, 48% mentioned family support, and 10.3% mentioned friends/health care team relationships).
Wiener, 2008 – United States Survey and interview investigation into AYA readiness to discuss advanced care planning using Five Wishes tool.	AYA patients (n=20); n=10 with cancer and n=10 with HIV	1.No 2. Unclear 3. No 4. No 5. No 6. No	DM: 95% of participants reported the advance directive document was “helpful” or “very helpful”; 90% believed that the document would be helpful to others. Participants were more interested in items of how they wished to be remembered or treated (example: “What I want my loved ones to know”) than items of decision-making.
Wiener, 2012 – United States Survey and interview to assess perceived usefulness, helpfulness, and stress associated with two advanced care directive tools	AYA patients (n=52); n=26 with cancer and n=26 with HIV	1. No 2. Unclear 3. No 4. No 5. No 6. No	DM: All wishes were rated by at least >85% of respondents as being helpful. Most participants preferred advance care document formatting that included both closed choices and open-ended questions that would reflect their voice.

ORIGINAL RESEARCH – QUALITATIVE STUDIES
Study	Participants	Quality Rating	Second Order Findings by Care Groupings
Bousso, 2012 – Brazil Semi-structured individual interviews with families of a child receiving palliative care at home	Family caregivers (n=14) of 11 children receiving outpatient palliative care; n=6/11 with cancer	1. Yes 2. Yes 3. Yes 4. Yes 5. Yes 6. Yes 7. Unclear 8. Yes	HU: Families preferred taking care of child at home rather than inpatient setting. DM: Mothers primarily bore responsibility for providing care and making decisions. Mothers’ described family agreement as key element to making decisions less burdensome. SC: Family members described feeling overwhelmed by the responsibility of managing symptoms at home, although they worked toward symptom control to keep child home (viewed as helpful to maintain the normality of family environment). CB: Mothers described feeling overwhelmed and alone. Psych: Parents were fearful of what family life would feel like following the death of the child.
Cataudella, 2012 – Canada Semi-structured focus group interviews for investigation into the psychosocial experiences of children with brain tumors at EoL.	Bereaved parents (n=24); neuro-oncology specific	1. Yes 2. Yes 3. Yes 4. Yes 5. Yes 6. Yes 7. Yes 8. Yes	Psych: Depression in the neuro-oncology pediatric population was related to decreased QoL, communication difficulties, and change in appearance. Anxiety was related to pain and awareness of death. Themes of post-traumatic growth were described by parents the child taking an active role in care, humor, maturity, empathy, hopefulness, and goal-setting. Soc: Parents recalled their children wanting to maintain peer relationships, attend school, achieve developmental goals, and maintain a sense of control. Moments of remaining connected with others and being treated as non-sick were recalled by bereaved parents as the most meaningful interactions for children with brain tumors at EoL.
Contro, 2002 – United States Family interviews as prelude to establishing pediatric palliative care service	Bereaved family members (n=68); n=28/64 cancer-specific	1. Yes 2. Unclear 3. Unclear 4. Yes 5. Yes 6. Yes 7. Unclear 8. Unclear	SC: Family members reported their loved ones were in pain at the EoL, simultaneously then rating pain management as adequate. The authors speculated that parents assumed everything that could be done was being done (or, that parents could not live with the idea that more could have been done to control the child’s pain at EoL). Family members reported home hospice workers were not well trained in pediatric-specific pain management. FS: Families preferred direct, honest, accurate, compassionate communication. Families also felt it essential to feel connected to the provider who talked to them about the impending death of their child. A one-time communication event perceived as insensitive/uncaring was freshly recalled with pain even years after the conversation. Q: Areas of unsatisfactory health delivery were preventable oversights and lack of coordination of services. Soc: Parents reported failure to include Spanish-speaking family members, to meet the needs of siblings, and inconsistent bereavement follow-up.
Heath, 2012 – Australia Semi-structured parent interviews on use of CAM in children with cancer during EoL	Bereaved parents (n=96)	1. Yes 2. Yes 3. Yes 4. Yes 5. No 6. Yes 7. Unclear 8. Unclear	SC: Thirty percent (n=27) of children used CAM during EoL. Primary goal of CAM use was to lessen suffering. Perceived benefits for child: relaxation, energy, less pain, positive attitude, more hope, and spiritual strength. FS: Sixty-three percent of parents who used CAM thought the care their child received was excellent-to-good (not significantly different from group not using CAM, p=0.891). Parents who used CAM were significantly more likely to strongly agree/agree that child’s oncologist had provided clear explanations about treatment alternatives (p<0.001).
Hinds, 2009 – United States Face-to-face interviews for descriptive, content analysis definition of good parent role.	Parents (n=62) of children with advanced cancer who had made a non-curative treatment decision within 72 hrs	1. Yes 2. Yes 3. Yes 4. Yes 5. Yes 6. Yes 7. Yes 8. Yes	FS: Parents identified positive and supportive staff care efforts: providing comfort, knowing child/family, liking child, pleasant, coordinating care, giving facts, asking about faith, telling parents they are good parents. CB: Achieving internal definition of being a good parent helped parents emotionally survive the dying and death of their child. Psych: To help parents explore their definition of being a good parent may offer parents/clinicians insight into parent choices and preferences and therefore foster psychological congruence.
Robert, 2012 – United States Exploratory focus group interview method to perceived quality of care at EoL.	Bereaved parents (n=14)	1. No 2. Yes 3. Yes 4. Yes 5. Yes 6. Yes 7. Yes 8. Yes	CB: Parents felt unable to support their other children and spouse. Q: “Standards of care” arose as an unexpected interview theme depicting processes and negotiation (relationships over rules) and the need for personalized accommodations for caregivers and visitors (including younger siblings). Psych: Emotional care included personalized prognostic communication and EoL discussions tailored to participants. In hindsight, parents described family need for anticipatory grief counseling. Soc: Parents described the need for social support (maintaining social relationships and connections) during the course of a child’s serious illness. Long-term relationships and effective communication with their child’s health care providers improved perception of care. Development of trusted relationships with providers arose as an interview focus.
Zelcer, 2010 – Canada Three semistructured focus group interviews to explore EoL experience of children with brain tumors and their families.	Bereaved parents (n=25); neuro-oncology specific	1. Yes 2. Yes 3. Yes 4. Yes 5. Yes 7. Yes 8. Yes	HU: Parents spoke of the importance of access to home health services and feasibility of home as a location of death. SC: Parents described distress of neurologic deterioration and uncontrolled symptoms (seizures) with mention of need for early anticipatory symptom guidance. CB: Parents spoke of the challenge of balancing care of the child with the parents’ own internal struggles and the reality of competing home responsibilities. Q: Home care challenges included suboptimal symptom management, financial and practical hardships, and difficulty with arranging home health services. Psych: Children were described as aware of their deterioration with parental recognition that the child felt frustrated, sad, and depressed by inability to play or partake. Loss of play was described as hardest on child psychologically and painful for parents to witness. Soc: Families who were linked with supportive community physician and care services believed they were supported well at home, whereas families without such network access often felt “lost and abandoned”.

ORIGINAL RESEARCH – QUANTITATIVE STUDIES
Study	Participants	Risk of Bias	Second Order Findings by Care Groupings
Bell, 2010 – United States Retrospective chart review to explore the experience of adolescents dying from cancer	Charts from adolescents (n=103) who died of cancer	1. No 2. Unclear 3. No 4. No 5. No 6. No	HU: The majority of adolescents (n=58) died in the hospital. Nearly half (n=24) of the hospital deaths occurred in the ICU. DM: Discussions about death occurred in most cases (n=80) although n=23 charts were without documentation of EoL discussions. Documentation rarely identified whether the adolescent was included in the discussion. Half of the documented conversations began in the last 30 days of life. EOL discussions more likely to occur in the last 7 days of life (p=0.002) for adolescents with leukemia/lymphoma. Psych: More than a third of adolescents used anxioltyics at EoL. Anxiolytic use was significantly higher during late adolescence (p=0.037). Feelings of loneliness and anxiety interfered with a peaceful death.
Bona, 2011 – United States Written survey investigating experiences and satisfaction with a state-funded Pediatric Palliative Care Network (PPCN)	Caregivers (n=227) of children receiving or having received PPCN services; one-third with cancer diagnosis	1. Yes 2. No 3. Unclear 4. No 5. No 6. No	HU: PPCN prevented unnecessary transfers/hospital admissions. CE: Volunteers provided 2296 hrs in 2010; low state administrative overhead noted ($680,850) with 87% direct contract funds to hospice. SC: Families highly valued 24-hour emergency symptom management as part of PPCN. FS: Parents (n=31/36) described their child’s quality of life as “mostly better” as a result of PPCN. CB: Families valued respite services, requesting additional respite coverage. Psych: PPCN included counseling for parents, grandparents, and siblings in addition to providing psychological, social, and/or spiritual support for the child. Soc: Bereavement services provided by PPCN included caregivers, siblings, and other family members for up to 13 months.
Bradford, 2012 – Australia Database analysis of implemented toll-free, after-hours PPC telephone service	Caregivers of n=106 children with cancer	1. No 2. Yes 3. No 4. Unclear 5. No 6. Yes	HU: A total of 1,954 after-hour phone calls were placed over eight years with mean duration 11 minutes. Paper alluded to the telephone service sparing unnecessary emergency room visits for these families. SC: Service improved management of symptoms at home with 21% of calls for symptom support. FS: Families appreciated availability, clear communication, and reassurance through phone service. SS: Regional clinic staff felt supported by ability to reach palliative providers more familiar with complex patients. Psych: Parents reported comfort knowing service was available (regardless of phone use): 41% of calls were for communication support; 18% for practical advice; 20% for emotional support. Soc: Phone service reduced families’ sense of isolation when caring for child at home.
Dussel, 2009 and 2010 – United States Retrospective questionnaire in 2009 paper; inclusion of vignettes to investigate hastening death discussions in 2010 paper	Bereaved parents (n=140 in 2009 paper and n=141 in 2010 paper)	1. No 2. Yes 3. Yes 4. No 5. No 6. No	HU (2009): Planning LOD associated with more home deaths (72% vs 8%, p<0.001). SC (2010): 34% of parents reported that they would have considered hastening child’s death had the child been in uncontrollable pain while ≤15% would consider this for nonphysical suffering (95% CI, 26%–42%). If the vignette involved a child in uncontrolled pain compared with coma, parents more likely to endorse hastening death (OR, 1.4; 95% CI, 1.1–1.8). The authors emphasized importance of intensive pain management at EoL. Q: “Opportunity to plan LOD” emphasized as an outcome associated with high-quality palliative care. Psych (2009): Parents who planned LOD were more likely to feel very prepared for child’s death (33% vs 12%, p=0.007) and very comfortable with LOD (84% vs 40%, p<0.001) with less decisional regret when LOD when planning/communication had occurred.
Hays, 2006 – United States Pre- and post-intervention survey (baseline and 3-month follow-up) to evaluate PPC intervention focused on education for HCPs, shared decision-making, and co-case management	Families (n=41) of pediatric patients expected to live ≤ 1 year; 34% with cancer	1. Yes 2. Unclear 3. No 4. No 5. No 6. Yes	CE: Co-case manager improved families’ appraisal of responsiveness of their health plan, including ease of accessing services, ease of ensuring share of the costs, and clarity of insurance benefits (p<0.05). FS: Parents rated the providers’ ability to keep the child comfortable as significantly better post-intervention (p=<0.05). Q: Parents reported significant improvement in quality of information received by the child regarding condition and prognosis, child’s understanding, care transitions, and promptness of provider response to patient needs (p<0.05). Parents reported significant improvement in emotional support, comprehension, provider communication and sensitivity, and joint decision-making (p<0.05). Psych: Emotional domain of HR-QoL improved post-intervention (p=0.021).
Hechler, 2008 – Germany Semi-structured interview investigating quality of EoL care.	Bereaved parents (n=56)	1. No 2. Yes 3. No 4. No 5. No 6. Yes	HU: DNR was more frequent in those who discussed EOL with team (p=0.009). Half of parents were informed of home care option. DM: Two-thirds of parents reported having an EoL planning discussion with care team; 48% of the children died at home even though 88% of the parents chose “at home” as the most appropriate locale in hindsight. SC: All children reported to have experienced at least one “distressing” EoL symptom. CB: 92% of parents experienced “significant impact” on lives after child’s death; n=29 parents observed significant change religious, employment, partnership/marital status, or social contacts and n=15 reported significant financial burdens. Psych: High proportion of children suffered from depression or anxiety at EoL. Majority of children still perceived as happy, displaying good mood and peacefulness. Parental mention of “good/very good” quality of care from psychologist/social worker and spiritual mentor for both child and parents. Soc: n=41 parents reported team contacted them after child’s death while 7/48 reported (15%) not being contacted.
Hilden, 2001 – United States Survey of pediatric oncologists to assess attitudes, practices, and challenges associated with EoL care	Pediatric oncologists (n=228)	1. No 2. No 3. No 4. No 5. No 6. No	SC: The majority (91%) of pediatric oncologists scored their pain management skills as 4 or 5 in competency [on 5-point scale] and reported that most of their patients do not die in pain. The authors reflected on discrepancy between physicians’ perception of the child’s pain and the child’s perception of that pain. FS: Oncologists perceived themselves as competent at communicating with dying children and their families and at discussing the transition to palliative care. The authors referred to literature suggesting bereaved families may have found physician communications at EoL vague and confusing. CB: For pediatric oncologists, the function and condition of the child, the presence of severe pain, and the family’s caregiving burden were less of an influence in shifting from curative to palliative intent than was the availability of an effective therapy. Psych: Many surveyed oncologists described ready access to psychosocial staff, but suggested that a multidisciplinary approach to terminal care was not yet incorporated into mainstream. Overall, pediatric oncologists did not feel competent managing depression in children with 58% rated their skill level as less than competent. Feelings of anxiety about having to manage “difficult symptoms” in a dying child were reported by 48%. Some pediatric oncologists reported a sense of personal failure at the prospect of patient’s death.
Hunt, 2006 – Sweden Questionnaire to examine the impact of care and illness factors on maternal and paternal thoughts about child’s death	Bereaved parents (n=449)	1. No 2. Unclear 3. No 4. No 5. No 6. No	DM: Maternal thought that death would be best for the child was related to the child’s ability to communicate during the final month of life, the child being confined to bed, parent awareness of the child’s pending death, having talked to the child about what is important to the child, and whether the child had ever experienced unrelieved pain. Fathers thought the child’s death would be best for the child when the father was emotionally aware of the time for the child’s death, age of the child at death (<10 years), the context of children who had been ill for six or more years, and the child having unrelieved pain (p<0.05). Psych: The child’s fear of death was prioritized in parental consideration.
Johnston, 2008 – Global Cross-sectional survey exploring the institutional practices and resources surrounding EOL care at COG institutions in 2005	Principal Investigator or his/her designee (n=187)	1. No 2. No 3. No 4. No 5. Nov 6. No	Q: Only 58% of the COG institutions had palliative care teams in 2005. The team consisted of physicians (91% of institutions); social workers (78%); spiritual care workers (70%); nurses (60%); nurse practitioners (59%); bereavement counselors (39%); psychologists (37%); volunteers (27%); expressive therapists (26%); nutritionists (21%); and child life workers (10%). A hospice service was available in 65% of the institutions. SC: The majority of institutions (83%) allowed children to receive both chemotherapy and to be enrolled onto Phase I, II or III clinical trials while also receiving palliative care services. Institutions with a palliative care team were more likely to offer CAM therapies (P = 0.03) and have a pain service (P = 0.02). Psych: A psychosocial support team was available in 80% of the institutions with teams dedicated to pediatric oncology patients 81% of the time. Soc: Bereavement programs dedicated to pediatric oncology patients were available at 59% of the institutions.
Kreicsberg, 2004 – Sweden Questionnaire to investigate whether parents had talked with their child about death and regret associated with decision	Bereaved parents (n= 449 answered survey, 429 stated whether or not they had talked to their child about death)	1. No 2. Unclear 3. Yes 4. No 5. No 6. No	CB: None of the 147 parents who talked with their child about death regretted conversation. In contrast, 69/258 parents (27%) who did not talk with their child about death regretted decision. Parents who sensed child was aware of imminent death were more likely to regret not having talked about death (47%) than were those who had not sensed this awareness (13%) with RR 3.7. Psych: Authors recognized that children are often aware of their imminent death; emphasized fostering the child’s inner life (awareness of their imminent death) and the outer reality (information received from HCP and parents).
Lyon, 2013 – United States Experimental, randomized control trial in which the intervention group received three 60-minute family centered ACP sessions	AYA patients with surrogate decision maker (n=17 intervention dyads and n = 13 control dyads)	1. No 2. Unclear 3. No 4. No 5. No 6. No	HU: Intervention dyads were more likely to limit treatment than controls. PS: The intervention AYAs self-reported as better informed about EoL decisions than control group adolescents (p=0.007). Soc: All intervention AYAs endorsed that the surrogate “do what he/she thinks is best at the time, considering my wishes” whereas only 62% control group adolescents endorsed this (p=0.009). ACP allowed families to understand adolescents’ wishes.
Mack, 2005 – United States Survey of parents and questionnaire of clinicians to ascertain factors associated with quality EoL care	Bereaved parents (n=144) and their child’s primary oncologist (n=52)	1. No 2. Yes 3. No 4. No 5. No 6. No	FS: High EoL care quality ratings were associated with a parental perception that the primary oncologist: gave bad news in a sensitive and caring manner (p<0.001), provided clear information about what to expect (p<0.001), elicited trust (p<0.001), provided a feeling of preparedness for circumstances surrounding death (p=0.001), and communicated directly with the child (p<0.001). Medical outcomes (including time spent in the hospital and pain control in the last month of life) were not important determinants of parental ratings of quality. SS: Factors associated with physician ratings of care were parent report of pain in the last month of life (p=0.01) and a hospital stay of 10 days or more in the last month of life (p<0.001).
McCarthy, 2010 – Australia Structured interview by trained clinical psychologist to examine factors related to burden of illness during EoL care as potential predictors of parental grief and depression outcomes	Bereaved parents (n=58)	1. No 2. Unclear 3. No 4. No 5. No 6. No	Q: Child QoL during treatment and preparedness for death independently predicted depression. Perceived quality of physician care and time since death independently predicted grief. Psych: Parents fulfilled criteria for diagnosis of prolonged grief disorder (10.3%), traumatic distress clusters (16%), separation distress (41.4%). Prevalence of clinically significant levels of depression was reported at 22.4%. Separation distress and traumatic distress (subcomponents of the Grief Inventory) and total grief were all significantly correlated with depression.
Mitchell, 2005 – United Kingdom Inventory of psychosocial support service provisions available at pediatric oncology centers	Pediatric oncology treatment centers (n=21) and adolescent care units (n=3) for 24 total centers	1. No 2. Yes 3. Unclear 4. No 5. No 6. No	DM: Only 6/24 centers reported involving siblings and 1/24 involved grandparents in decision-making processes. Psych: Formal psychosocial assessment of patients not routine, as only 3/24 centers formally assessed every patient. Most (20/24 centers) carried out informal assessments of new patients and then followed-up if need identified. Some (7/24 centers) reported regular reviews of psychosocial assessments. Only 4/24 centers reported the input of psychologists in treatment preparations. Lack of standard practices and procedures for psychosocial support documented by study. Soc: Support groups could be accessed at 21/24 centers with wide variety of meeting frequency. Social workers (16/24) and nursing staff (15/24) reported regularly providing bereavement support, usually as home visits. At 14/24 centers, staff also referred families to external bereavement agencies.
Tomlinson, 2011 (3 papers) – Canada Interviews using hypothetical scenarios to investigate chemotherapy versus supportive care alone decision-making (couple and HCP concurrence considered in separate papers)	Parents (n=77) of children with cancer determined to have <5% chance of survival and their HCPs (n=128); separate study of fewer parents (n=73)	1. Unclear 2. Yes 3. Unclear 4. No 5. No 6. No	DM: Parents identified hope (OR 1.339), increased survival time (OR 0.868), and child’s QoL (OR 0.596) as the three most important considerations in deciding between aggressive chemotherapy and supportive care alone. HCP factored child’s QoL, followed by survival time and other family members’ QoL. HCPs placed greater emphasis on families’ financial considerations than parents. Soc: Unmarried/single parents may be more resistant to giving up aggressive treatment if they lack supportive family structure. Psych: Concordance between parents was poor for interpretation of child’s psychosocial health, emotional function, treatment anxiety, communication, and cognitive fatigue; authors conclude one parent’s assessment may not be considered synonymous with other parents’ assessment and thus encourage inclusive communication.
Van der Geest, 2014 – Netherlands Retrospective questionnaire to explore impact of parental perception of EoL care on parental grief	Bereaved parents (n=89)	1. Yes 2. Unclear 3. No 4. No 5. No 6. No	Psych: Higher parental ratings on communication quality (p =0.03) and care continuity (p=0.01) were associated with lower levels of long-term parental grief. Severity of child’s dyspnea (p=0.05), anxiety to be alone (p < 0.01), anxiety about the future (p < 0.01), anger (p< 0.01), and uncontrolled pain (p< 0.01) were associated with higher levels of parental long-term grief.
Von Lutzau, 2012 – Germany Semi-structured questionnaire to investigate EoL care experience	Bereaved parents (n=48)	1. Yes 2. No 3. No 4. No 5. No 6. No	HU: 38/48 parents report having been informed of home care. 92% chose to accept home care and ultimately 62% received home care. 82.2% of the children had a DNR. Half of the children died at home and 10% in the ICU. SC: Parents report symptoms successfully treated more than 65% of time per parents with fatigue and pain most frequent reported symptom occurrence. Psych: Almost half (43.8%) of children received psychosocial aid during end-of-life care. However, study reported that 64.3% of the children who suffered from anxiety were not treated. Soc: Author endorsed reasonableness of assumption that “parents’ perception of their child’s suffering would have an impact on the psychosocial functioning of the entire family.”
Wolfe, 2008 – United States Retrospective time lapse cohort study from one institution using parent survey and chart data to evaluate changes in patterns of care, ACP, and symptom control among children with cancer at EoL	Parents of children who died of cancer between 1990-1997 (n=102, Cohort 1) and parents of children who died of cancer between 1997-2004 (n=119, Cohort 2)	1. Unclear 2. Unclear 3. No 4. No 5. No 6. No	HU: Cohort 2 had more hospice discussions (p<0.001) and earlier hospice discussions (p <.002) and earlier documentation of DNR orders (p=0.03) ICU and hospital deaths deceased significantly in Cohort 2 (p=0.024). SC: Parents reported less suffering in terms of pain and dyspnea in Cohort 2. FS: More parents in Cohort 2 felt prepared for their child’s death than in Cohort 1. Psych: Parents in Cohort 2 reported less anxiety in child at EoL.
Zhukovsky, 2009 – United States Retrospective chart review of consecutive PPC consults at cancer center	Charts from children (n=15) with palliative care referrals	1. Yes 2. Yes 3. No 4. No 5. No 6. Yes	DM: In chart review of documentation of communication about EoL issues at the time of consult, documented involvement of the child occurred in n=2 (13%) cases. Psych: The most commonly recommended interventions from the palliative consult documentation were pharmacologic (14 patients) followed by patient and family counseling (11 patients). Soc: Well-being of siblings was not documented by primary oncologist (n=0) and was documented by palliative care consultant in n=4 (27%) cases.

ORIGINAL RESEARCH – REVIEW PAPERS
Study and Purpose	Included Papers	Quality Report	Second Order Findings by Care Groupings
Hinds, 2007 Systematic Review – Identify empirical papers that included patient reported outcomes for pediatric oncology patients at EoL	26	1. Yes 2. Yes 3. Unclear 4. Yes 5. Yes	PS: Nearly 85% of completed studies do not include patient reported outcomes. Q: Patient-reported outcomes facilitated patient perspectives and indicators of quality of care at EoL
Mack, 2006 Narrative Review – Explore impact of early integration of palliative care for children with life-limiting illnesses	20	1. Yes 2. Yes 3. Unclear 4. Yes 5. Yes	DM: Pediatric deaths occurring in intensive care unit at the EOL lent to earlier consideration of expected trajectory of illness and communication of goals. Discussion about EoL preferences may be appropriate as early as the time of diagnosis. PS: Children with cancer may wish to talk about the meaning of being ill and physician involvement in these conversations may be important for individual children FS: Families bring a combination of a need for information about EoL and combination for need for sensitive and caring nature of communication (criteria for value of communication). Psych: Integration of palliative care at the time of diagnosis can allow children and families to make decisions about care that fit their needs and values and maintain better psychological health for the child and family.
Rosenberg, 2012 Systematic Review – Review of existing studies that used validated instruments to measure psychosocial outcomes among bereaved parents of children who had died from cancer.	13	1. Yes 2. Yes 3. Yes 4. Unclear 5. Yes	Psych: Bereaved parents of children with cancer versus non-bereaved parents had increased anxiety, depression, prolonged grief, and poor psychological QoL. Outcome predictors included: parental history of loss, economic hardship, duration and intensity of treatment, satisfaction with care team, location of death, and child’s QOL prior to death. Factors associated with psychosocial morbidity included parental history of loss, financial hardship, duration and intensity of cancer-therapy, perception of care, child’s QoL, location of death, and time since death. Parents fared worse with less preparative time before their child’s death or if the parent carried dual morbidities (i.e., grief plus anxiety).
Wiener, 2013 Narrative Review – Explore and review how culture and religion informs and shapes PPC.	37	1. Yes 2. Yes 3. Unclear 4. Yes 5. Yes	HU: Cultural and religious factors influenced palliative care utilization; ethnic minorities tended to underutilize PPC. DM: While many cultures may prefer not to disclose life-threatening diagnoses to children, this may lead to emotional distance at a time when emotional closeness is needed. Paper discussed opportunities to include the family and patient in planning advanced directives. Q: Trained medical interpreters, careful choice of words, and attention to non-verbal cues noted as necessary to ensure the patient/family and provider understand each other. Psych: In order to provide culturally competent care, the HCP must first acknowledge his/her own beliefs about culture and religion. Cultural education of staff should be balanced with individual conversations with patients/families to assess family psychosocial needs. Patients and families facing the EoL often contemplate the meaning in their illness and life.

Abbreviations: AYA = adolescent young adults; EoL = end of life; 1=insufficient sample size; 2=lack of blinding; 3=selective reporting; 4=incorrect analysis; 5=stopped early; 6=large losses to follow-up. HU=healthcare utilization; CE=cost effectiveness; DM = decision-making; SC=symptom control; PS=patient satisfaction; FS=family satisfaction; SS=staff satisfaction; CB=caregiver burden; Q=quality of care delivery; Psych=Psychological impact; Soc=social support. All participants were cancer-specific study populations, unless otherwise noted.

Abbreviations: ACP = advanced care planning; AYA = adolescent young adult; CAM; complementary and alternative medicines; EoL = end of life; QoL = quality of life; 1=research question clearly stated; 2=qualitative approach clearly justified; 3=study context clearly described; 4=role of the researcher clearly described; 5=sampling strategy appropriate for research question; 6=method of data collection clearly described; 7=method of data analysis clearly described; 8=analysis appropriate for research question; HU=healthcare utilization; CE=cost effectiveness; DM = decision-making; SC=symptom control; PS=patient satisfaction; FS=family satisfaction; SS=staff satisfaction; CB=caregiver burden; Q=quality of care delivery; Psych=Psychological impact; Soc=social support. All participants were cancer-specific study populations, unless otherwise noted.

Abbreviations: ACP = advanced care planning; AYA = adolescent young adult; CAM; complementary and alternative medicines; CI = confidence interval; COG = Children’s Oncology Group; EoL = end of life; HCP= health care professionals; HR-QoL = Health-related quality of life; LOD = location of death; NA = not available; OR = odds ratio; PPC = pediatric palliative care; QoL = quality of life; RR = relative risk; USA = United States of America. 1=insufficient sample size; 2=lack of blinding; 3=selective reporting; 4=incorrect analysis; 5=stopped early; 6=large losses to follow-up. HU=healthcare utilization; CE=cost effectiveness; DM = decision-making; SC=symptom control; PS=patient satisfaction; FS=family satisfaction; SS=staff satisfaction; CB=caregiver burden; Q=quality of care delivery; Psych=Psychological impact; Soc=social support.

Abbreviations: EoL = end of life; HCP = health care professional; PPC = pediatric palliative care; QoL = quality of life. 1=Right types of papers included; 2=Important, relevant studies included; 3=Appropriately assessed for quality of studies; 4=Reasonable to combine results in this way; 5=Important outcomes considered. HU=healthcare utilization; CE=cost effectiveness; DM = decision-making; SC=symptom control; PS=patient satisfaction; FS=family satisfaction; SS=staff satisfaction; CB=caregiver burden; Q=quality of care delivery; Psych=Psychological impact; Soc=social support.