Scoping Review on Transitions in the Context of Pediatric Palliative Care.

Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be bewildering and highly anxiety-inducing. However, clinical observations seem to point to a more heterogenous care offer, including a lack or discontinuity of services, at the expense of their quality of life. Objective: This paper aims to establish a portrait of the existing literature and identify research gaps on the multiple transitions experienced by this population. Design: A scoping review is provided, following a PRISMA protocol. MEDLINE, PubMed and CINAHL were consulted. The search strategy is based on three key concepts: (1) palliative care/complex condition, (2) child/adolescent, and (3) transition. Articles were screened with the help of Covidence. Results: A total of 72 articles are included for analysis. The aimed population is either identified by age group or by medical status. Respondents are most often parents rather than the children themselves. Transitions include: reaching adulthood, changes in care environment, changes in medical status, and school integration. Conclusion: The discussion notices a definitional murkiness about transitions and highlights the fact that the multifaceted and complex nature of transition over time is largely ignored. New research should involve a diversity of participants and include children's voices. Recommendations include clearer concept definitions, health care policies that adopt an ecosystemic approach, and professional training in the systemic family approach in palliative care.

Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL.

A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with advanced cancer. We adopted a four-phase research plan: (1) to elaborate the Advance QoL questionnaire for youth (8-12 and 13-18 years old) with a team of young research partners; (2) to evaluate the understandability of these versions in a sample of 12 young patients from the target population using cognitive interviews; (3) to assess social validity in the same group using a questionnaire and the content validity index (CVI); and (4) to refine the questionnaires according to these results. Four major themes were identified: (1) issues affecting the understanding of the tool; (2) issues that did not affect the understanding of the tool; (3) modifications to improve the tool; and (4) positive features of the tool. Advance QoL was well received, and feedback was positive. Adjustments were made according to young people's comments and two self-reported versions are now available. It is essential to measure the key domains of QoL in advanced cancer. Advance QoL self-report versions will help target the specific needs of young people with this condition and their families.

The needs of siblings of children with a life-threatening illness, part 1: Conceptualization and development of a measure.

OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children]. METHOD: The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings. RESULTS: The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items. SIGNIFICANCE OF RESULTS: The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.

The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS.

OBJECTIVE: Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument. METHOD: In a prospective cohort study, the 48-item instrument was administered via a website or paper to 58 siblings. RESULTS: Our study revealed that the measure has an estimated internal consistency of 0.96 and a temporal stability intraclass correlation coefficient (ICC) of 0.86 (p < 0.01). Its convergence validity is also satisfactory. SIGNIFICANCE OF RESULTS: Our findings suggest that the IBesFEMS is highly relevant for pediatric palliative care clinicians and researchers. Future studies should investigate its factorial structure and predictive validities.

Motivations of physicians and nurses to practice voluntary euthanasia: a systematic review.

BACKGROUND: While a number of reviews have explored the attitude of health professionals toward euthanasia, none of them documented their motivations to practice euthanasia. The objective of the present systematic review was to identify physicians' and nurses' motives for having the intention or for performing an act of voluntary euthanasia and compare findings from countries where the practice is legalized to those where it is not. METHODS: The following databases were investigated: MEDLINE/PubMed (1950+), PsycINFO (1806+), CINAHL (1982+), EMBASE (1974+) and FRANCIS (1984+). Proquest Dissertations and Theses (1861+) was also investigated for gray literature. Additional studies were included by checking the references of the articles included in the systematic review as well as by looking at our personal collection of articles on euthanasia. RESULTS: This paper reviews a total of 27 empirical quantitative studies out of the 1 703 articles identified at the beginning. Five studies were in countries where euthanasia is legal and 22 in countries where it is not. Seventeen studies were targeting physicians, 9 targeted nurses and 1 both health professionals. Six studies identified the motivations underlying the intention to practice euthanasia, 16 the behavior itself and 5 both intention and behavior. The category of variables most consistently associated with euthanasia is psychological variables. All categories collapsed, the four variables most frequently associated with euthanasia are past behavior, medical specialty, whether the patient is depressed and the patient's life expectancy. CONCLUSIONS: The present review suggests that physicians and nurses are motivated to practice voluntary euthanasia especially when they are familiar with the act of euthanasia, when the patient does not have depressive symptoms and has a short life expectancy and their motivation varies according to their medical specialty. Additional studies among nurses and in countries where euthanasia is legal are needed.