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Introduction: Parental burnout, known as a state of physical and psychological exhaustion, results in an imbalance between the parent's perceived stressors in relation to parenting, and the resources available to the parent to cope with such stressors. The causes and consequences of parental burnout for the parents themselves have been studied from the parents' point of view, but the perception of parents regarding the impact of parental burnout on the parent-child relationship has not yet been documented., Methods: We conducted a qualitative study through semi-structured interviews with exhausted parents (n=21). We aimed to better understand their general interactions with their children, as well as the way they communicate with them about their state of exhaustion, knowing that dealing with parental suffering can have a long-term impact on the child., Results: Our results reveal that exhausted parents experience a widespread loss of control in all areas of their lives, particularly in their interaction with their children, which generates feelings of guilt and shame. Communicating their experience to their children can create various difficulties for both parents and children. This may complicate the process of seeking help and reinforce the feeling of isolation., Discussion: An emerging result from our analysis leads us to identify a need for the parents to be heard and validated in their suffering who took part in this research., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Dubois, Roberti-Lintermans, Mallien, François, Lahaye, De Mol and Aujoulat.)

Background: Parents of children and youth with special healthcare needs (PCHN) are under particular pressure that can lead to physical, emotional, and social difficulties. Respite care services provide temporary relief for PCHNs from their caregiving responsibilities. Several studies have examined why PCHNs do not make greater use of these potentially supportive services, but existing studies do not focus on the psychological or subjective aspects of this process., Objectives: The present study aims to understand the reasons why PCHNs, mothers in particular, (do not) use these services, with the underlying goal of understanding what parents' needs and expectations are regarding these services., Methods: The present study is based on a qualitative thematic analysis of the experience of respite services of 14 Belgian mothers PCHN., Results: The results showed that PCHNs regularly exceed their limits and are often on the verge of physical and emotional exhaustion and that respite services could be a way to meet their needs. However, issues of availability and accessibility impede equal access to these services., Conclusions: These findings highlight the need for a comprehensive approach to respite care, by including PCHNs in the process as early as possible, not normalizing exhaustion as the trigger, and not focusing solely on the needs of children when the need arises., Implications for Practices: Increasing the flexibility of the services, providing a reassuring environment, facilitating administrative procedures, and providing information about these services as early as possible appear to be priorities for facilitating the use of respite care services., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Background: Since the Convention on the Rights of the Child in 1989, interest in the ethical and methodological challenges involved in conducting research with children has increased considerably. Researchers who work with children have to take into account children's intrinsic physical, mental and emotional vulnerability as well as their interdependence with other family members, particularly their parents. This is especially challenging in research that seeks to explore children's lived experience in relation to aspects of their family lives., Objective: We aimed to identify specific ethical issues and ways of overcoming challenges in conducting research with children on some aspects of their family lives., Methods: We conducted a scoping review according to the PRISMA Extension for Scoping Reviews Checklist. Seventeen publications were selected for data extraction and synthesis, 4 of which were original studies and 13 reflexive papers., Results: Our results confirm that a research project that asks children about aspects of their family lives leads to a number of ethical tensions: While children depend on their parents and family to ensure that their safety and physical needs are met, they also greatly contribute to the development of family dynamics. We highlight methodological strategies that allow researchers to mitigate the ethical challenges that are inherent to this type of research., Discussion/conclusion: A promising approach is to use participative methods at each stage of research, including developing a trusting and triadic partnership that includes parents, children, a multidisciplinary research team and professional gatekeepers. Benefits as well as possible risks for participants should also be considered when children and their parents are engaged in a study., (© 2021 John Wiley & Sons Ltd.)

Context: Pediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging., Objective: To review the instruments used to assess the impact of PPC interventions., Data Sources: Five databases (Embase, Scopus, The Cochrane Library, PsychInfo, Medline) were searched., Study Selection: Inclusion criteria were as follows: definition of PPC used; patients aged 0 to 18 years; diseases listed in the directory of life-limiting diseases; results based on empirical data; and combined descriptions of a PPC intervention, its outcomes, and a measurement instrument., Data Extraction: Full-text articles were assessed and data were extracted by 2 independent researchers, and each discrepancy was resolved through consensus. The quality of the studies was assessed by using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers From a Variety of Fields checklist., Results: Nineteen of 2150 articles met the eligibility criteria. Researchers in 15 used quantitative methods, and 9 were of moderate quality. Multidimensional outcomes included health-related quality of life, spiritual well-being, satisfaction with care and/or communication, perceived social support, and family involvement in treatment or place-of-care preferences. PPC interventions ranged from home-based to hospital and respite care. Only 15 instruments (of 23 reported) revealed some psychometric properties, and only 5 included patient-reported (child) outcome measures., Limitations: We had no access to the developmental process of the instruments used to present the underlying concepts that were underpinning the constructs., Conclusions: Data on the psychometric properties of instruments used to assess the impact of PPC interventions were scarce. Children are not systematically involved in reporting outcomes., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2019 by the American Academy of Pediatrics.)