Reference | Objective | Study design | Participants | Setting | Results | Methods/Quality |
---|---|---|---|---|---|---|
Maurer SH et al. 2010. [24] | Compare the parental self-reported rationale about treatment decisions. | Cross-sectional study. | Parents (n = 62) of children (n = 58) whose disease had progressed to the terminal stage. | 1 Hospital: USA | Parental reasons for: | Interview questions pilot tested. |
─Do not resuscitate status or terminal care: concern with quality-of-life (74%) and patient wishes (67%). | Trained interviewers. | |||||
Private and separately semi-structured interviews within 72 hours of participating in non-curative treatment decisions. | ||||||
A convenience sampling technique. | ||||||
Most parents were women. | ||||||
No sample size estimation. | ||||||
─Phase I Research Controlled Trial: the need to continue cancer-directed treatment (71%). | ||||||
Reasons for both groups of treatment: | Semantic content analysis. | |||||
Treatment decisions: | The children of these parents ranged in age from 0.6 to 21.6 years; median, 11.4 years). | |||||
─Do not resuscitate or terminal care (47%), | ||||||
To make a decision that did right by their child. | ||||||
─Phase I Research Controlled Trial (53%), | ||||||
Parents were the only decision-makers. | ||||||
To take into account the medical facts. | ||||||
To preserve the child’s legacy. | ||||||
Tomlinson D et al. 2011. [25] | To identify the factors influencing decision making about treatment options for end-of-life. | Cross-sectional study. | One parent per child (n = 77; response rate = 67%) of children at end-of-life. | 1 Hospital: | Parental factors: hope, increased survival time, and child’s quality-of-life. | Interview questions pilot tested. |
Canada | ||||||
Trained interviewers. | ||||||
Single face to face interviews. All items of the questionnaire were closed ended with categoric responses. | ||||||
Healthcare professionals’ factors: financial considerations and parent opinion. | No sample size estimation. | |||||
No probabilistic sampling. | ||||||
Median age of children was 8.6 years (range, 6.2-13.3 years). | ||||||
Response rate of healthcare professionals = 100% | ||||||
Treatment decisions: | ||||||
─Palliative cytotoxic chemotherapy: | ||||||
Most parents were women (78%). | ||||||
Parents (n = 42, 54.5%), | ||||||
Univariate logistic regression analysis | ||||||
Healthcare professionals (n = 20, 15.6%). | ||||||
Hypothetical scenario was presented to parents and to healthcare professionals. | ||||||
─Supportive care alone: | ||||||
Parents (n = 35), Healthcare professionals (n = 108). | Healthcare professionals (n = 128): | |||||
Primary oncologist (n = 25). | ||||||
p < 0.0001 | ||||||
Nurses (n = 97) | ||||||
Factors of options given to them: | Social workers (n = 6). | |||||
Child’s quality-of-life. | Most healthcare professionals were women (85%). | |||||
Survival time. | ||||||
Probability of cure. | ||||||
Wolfe J et al. 2000 [26] | To describe the primary goal of cancer-directed treatment during end-of-life period. | Cross-sectional study. | One parent per family (n = 103; response rate = 72%) of children who died of cancer (median 3 years; range 1.1-8.0, years after death). | 2 Hospitals: USA | Parental goal: | Interview questions pilot tested. |
─To extent life (n = 87, 84%) | ||||||
Trained interviewers. | ||||||
Oncologist goal: | ||||||
─To lessen suffering (n = 18, 42%). | ||||||
No sample size estimation. | ||||||
All items of the questionnaire were closed ended with categoric responses. | ||||||
No probabilistic sampling. | ||||||
(k = 0.16; 95% CI -0.11 - 0.42) | Regression analysis | |||||
Children mean age 10.8 years; SD, 6.7 years old at death. | ||||||
The majority of parental interviews were administered by telephone. | ||||||
Most parents were women (86%). | ||||||
Primary oncologist (n = 42; response rate was not declared). Most of them were men (69%). | ||||||
Only 16% of children participated in the decision-making process. | ||||||
De Graves S et al. 2002 [27] | To explore the shift from cure to palliation. | In-depth history audit of medical records. | Medical records of 18 (64%) children who died of cancer. They ranged in age from 2 to 17 years; median age at death 10 years old). | 1 Hospital: | For many families the hope of cure continued until the child was close to death. | Pretesting of the audit form used is not reported. |
Australia | ||||||
No probabilistic sampling technique. | ||||||
They continued to seek curative or life extending options. | No sample size estimation. | |||||
Parents participated in the decision-making. | ||||||
Content analysis technique. | ||||||
Bell CJ et al. 2010 [28] | To explore the experiences in adolescents dying from cancer, including end-of-life discussions. | Retrospective review of medical charts. | 103 medical charts from adolescents who | 1 Hospital: USA | Timing of end-of-life discussions occurred very | Pretesting of the instrument used is |
Parents were directly involved in the end-of-life decision. | died of cancer. | close to death for a significant number of adolescents. | not reported. | |||
No sample size estimation. | ||||||
No probabilistic sampling. | ||||||
Children mean age at death 14.4 years; SD, 2.9 years old. | ||||||
Univariable analysis. | ||||||
Hilden JM et al. 2001 [29] | ─ To explore perceived barriers to the delivery of end-of-life care. | A mailed questionnaire survey | 228 (55%) paediatric oncologists responded the survey. Gender distribution was not reported. | All members of American Society of Clinical Oncology in the USA, Canada and the UK. | Barriers: | Validated instrument |
Multivariate analysis | ||||||
─ Family’s unrealistic expectations for cure (n = 98, 43%). | ||||||
─ Family denial of the illness as terminal (n = 63, 27.6%). | ||||||
─ To describe the factors influencing decision-making. | ||||||
─ Family conflicts (n = 24, 10.5%). | ||||||
Factors influencing d-m: | ||||||
─ Absence of effective therapy (n = 213, 93.4%) | ||||||
─ Request by patient/parent(s) to stop treatment (n = 198, 87%) | ||||||
Mack JW et al. 2005 [30] | To identify the determinants of high-quality care at the end-of-life for children, as perceived by parents and physicians. | Cross-sectional survey. | One parent per family (n = 144; response rate = 65%) of children who had died of cancer (a mean of 3.2 years after death). | 2 Hospitals: USA | The parents’ principal determinant was doctor-patient communication. | Interview questions pilot tested. |
Trained interviewers. | ||||||
No sample size estimation. | ||||||
All items of the questionnaire were closed ended with Likert scales. | Physicians’ care ratings depend on biomedical rather than relational aspects of care. | No probabilistic sampling. | ||||
Recall bias. | ||||||
Selection bias. | ||||||
Multivariable analysis. | ||||||
Median age of children at death was 8.9 years (range, 0.3-25.3 years). | No association was found between parent and physician care ratings (p = .88). | |||||
The majority of interviews were administered by telephone. | ||||||
Most parents were women (83%). | ||||||
Child’s primary oncologist (n = 52; response rate = 100%), most of them were men (65%). | ||||||
All participants were directly involved in the end-of-life decision. | ||||||
Edwards KE et al. 2008 [31] | To explore how closely mothers’ and fathers’ understandings of prognosis and treatment goals during the child’s end-of-life period were aligned. | Cross-sectional survey. | Pairs of mothers and fathers (n = 38; response rate = 56%) were interviewed an average of 4 years after their child’s death. | 2 Hospitals: USA | During end-of-life, the lessening of suffering was the main primary treatment goal reported. However, only 34% of couples agreed on this goal (k = 0.07; 95% CI, 0.20 to 0.44). During the last month of life, 42% of parents concurred regarding lessening suffering (k = .0.35; 95% CI, 0.05 to 0.65). Among discordant pairs, there was no parental gender preference for a particular goal. | Interview questions pilot tested. |
Trained interviewers unclear. | ||||||
The majority of interviews were administered by telephone. | ||||||
No sample size estimation. | ||||||
No probabilistic sampling. | ||||||
Bivariate analysis. | ||||||
Median age of children at death was 10.3 years (range, 0.9-24 years). | ||||||
The items of the questionnaire were closed ended, yet some of them requested open-ended elaboration. | ||||||
All participants were directly involved in the end-of-life decision. | ||||||
Hechler T et al. 2008 [32] | To investigate the bereaved parents’ perspective on end-of-life decisions. | Cross-sectional study. | Parents of 48 (Response rate = 35%) children who died of cancer (range 3 - 5, years after death). | 6 Hospitals: Germany | 64% discussed end-of-life decisions with the healthcare team. | Interview questions pilot tested. |
Semi-structured, single interviews. | Trained interviewers | |||||
Depending on whether parents had had a discussion on decisions with the team, their decision on resuscitation differed. | No sample size estimation. | |||||
The majority of parental interviews were face-to-face. | No probabilistic sampling technique. | |||||
Children mean age 8 years at death, SD, 4.9 years old. | ||||||
Fisher exact test | ||||||
Most parents were women (94%). | ||||||
Treatment decisions: | All participants were directly involved in the end-of-life decision. | |||||
─ Cancer-directed treatment (n = 18) | ||||||
─ Do not resuscitate (n = 24) | ||||||
─ Terminal care (n = 6). | ||||||
Mack JW et al. 2008 [33] | To assess parent’s experiences who continued cancer-directed treatment after they had recognized that the child had no realistic chance for cure. | Cross-sectional study. | One parent per family (n = 53) of children who had died of cancer (a mean of 3.2 years after death). | 2 Hospitals: USA | The main goals to continue cancer-directed treatment were: cure (20%), life extension (22%) and to lessen suffering (20%). | Interview questions pilot tested. |
All items of the questionnaire were closed ended with categoric responses or Likert scales. | Trained interviewers. | |||||
No sample size estimation. | ||||||
Response rate = 64% | ||||||
31 parents reported that their child suffered as a result of cancer-directed treatment. | No probabilistic sampling. | |||||
Median age of children at death was 8.9 years (range, 0.3-25.3 years). | ||||||
Multivariable analysis | ||||||
29 reported that their child had received little to no benefit. | ||||||
The majority of interviews were administered by telephone. | ||||||
Most parents were women (83%). | ||||||
All participants were directly involved in the end-of-life decision. | ||||||
Hinds P et al. 1997 [34] | To identify the factors influencing decision making about treatment options for end-of-life. | Cross-sectional study. | Parents (n = 37, response rate = 44.6%) of children who had died of cancer (6─24 months after death). | 1 Hospital: USA | Parental factors: | Interview questions pilot tested. |
Information and recommendations given by healthcare professionals. | Trained interviewers. | |||||
Semi structured interviews were conducted via telephone with parents and face-to face with healthcare professionals. It was then followed up with a questionnaire with a Likert response option. | No probabilistic sampling. | |||||
Oncologist factors: | No sample size estimation. | |||||
Content analysis and | ||||||
Children mean age at death 13.4 years; SD, 5.10 years old. | Patient and family preferences. | |||||
Treatment choices between curative and non curative measures. | Logistic regressions. | |||||
Patient’s prognosis and comorbid conditions. | ||||||
Gender distribution was not reported. | Information and opinions from colleagues. | |||||
Healthcare professionals | ||||||
(16 oncologists, 3 nurses, and 2 chaplains). | ||||||
All parents were directly involved in the EOL decision. |