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. 2022 Jun 3;9(6):830. doi: 10.3390/children9060830

Table 4.

Evidence from mixed-method studies.

Author, Year, Country * Aim (A), Design (D) Population (Age in Years), n Outcome Parameters Risk of Bias Total Score (6) Quality of Reporting Total Score (32)
Quantitative Qualitative
Kline, 2012, USA [46] A: To assess family satisfaction and preferences with their palliative care program and its DMT tool (Decision-Making Tool)
D: Supportive care survey and open-ended questions interview study
Guardians of high-risk hemato-oncology pediatric patients (mean of 9.7),
n = 20 (quantitative outcomes) and
n = 6 (qualitative outcomes)
  1. Understanding treatment options

  2. Factors, people and services guiding treatment decisions

  3. Effectiveness of the decision-making conference, the palliative care program and DMT

Open-ended questions on the palliative care program and DMT; questions NS 4 6
Lyon, 2019, USA [47] A: To assess the feasibility and acceptability of FACE-Rare (FAmily-CEntered pediatric Advance Care Planning-Rare)
D: Pre–post-test questionnaire study
Pediatric patients with rare diseases (≥1–≤21) and their legal guardians or family caregivers (all mothers),
dyads n = 6
FACE-Rare
  1. Caregiver appraisal

  2. Family satisfaction based on positive and negative experienced emotions

  3. Families’ quality of communication with providers

Questions NS 5 8.5
Noyes, 2013, UK [50] A: To evaluate ‘My Choices’ and enhance future care planning
D: Pre–post-test questionnaire (quantitative) and semi-structured interview (qualitative) study
Children and young people (0–≥16) with complex health and palliative care needs, as well as their parents and health-care providers,
children n = 11
parents n = 12, bereaved parents n = 3,
professionals n = 13
(qualitative outcomes),
professionals (pre-study)
n = 27, and professionals (post-study) n = 20
(quantitative outcomes)
Professionals
evaluating My Choices on
preferred:
  1. Location of care

  2. Diverse aspects in palliative care

Views of parents, children, and professionals on the My Choices booklets; questions/themes NS 2 12
Wiener, 2008, USA [49] A: To assess the acceptability of Five Wishes, helpfulness, and defining important EOL concerns
D: Descriptive study data and closed- and open-response interviews
Adolescents and young adults with HIV-1 or metastatic/recurrent cancer (16–28), n = 20 Five Wishes:
  1. Age appropriateness for someone their age

  2. Helpful for someone of the participant’s age

  3. Helpful or stressful to the participant

Adjustments to the Five Wishes document 4 11
Wiener, 2012, USA [48] A: To assess and compare the usefulness, helpfulness, and stressfulness of the MTMWMV (My Thoughts, My Wishes, My Voice) with the Five Wishes
D: Descriptive study data and closed- and open-response interviews
AYAs with metastatic or recurrent cancer or HIV infection
(16–28), n = 52
Evaluating both tools regarding:
  1. Age appropriateness for someone their age

  2. Helpful for someone of the participant’s age

  3. Helpful or stressful to the participant

  4. Perceived legality of the document

Adjustments to the MTMWMV document 4 4.5

AYAs: adolescents and young adults; EOL: end of life, HIV: human immunodeficiency virus; NS: not specified; * Country where study was conducted.