How do exhausted parents experience their interactions with their children? A qualitative and participative study.

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.

From research 'on' to research 'with' children about their family lives: A scoping review of ethical and methodological challenges.

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.

Access to paediatric palliative care in children and adolescents with complex chronic conditions: a retrospective hospital-based study in Brussels, Belgium.

BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.

Non-disease Specific Health Promotion Interventions for Chronically Ill Adolescents in Medical Settings: A Systematic Review.

Adolescents with chronic conditions are highly likely to encounter physical, social and psychological difficulties that can threaten their overall wellbeing and health. As any other adolescent, they need to be helped to tackle the non-medical determinants of their health. This is the aim of primary prevention and general health promotion interventions. The present paper aims to review any hospital-based intervention that strives to promote general health in chronically ill teenagers. A systematic process of search and screening revealed four articles that presented and evaluated non-disease specific interventions that explicitly aimed to promote the overall health of chronically ill teenagers in clinical settings. Congruently with health promotion principles and values, the interventions described in our selection of articles targeted positive health determinants, in terms of personal skills and attitudes that contribute to psychosocial resiliency. The clinical relevance and feasibility of developing non-disease specific health promotion interventions in clinical settings was confirmed. However, the lack of relevant reported details did not allow us to highlight the key factors and mechanisms associated with successful interventions for health promotion targeted at chronically ill adolescents attending health care settings. Moreover, the design of the included studies varied in quality: number of participants, presence of a post-test and a follow-up, use of validated questionnaires, etc. Well-conducted non-disease specific clinical health promotion interventions still remain an under-investigated area of research, and maybe even of practice.

Long-Term Effects of Haematopoietic Stem Cell Transplantation after Pediatric Cancer: A Qualitative Analysis of Life Experiences and Adaptation Strategies.

Haematopoietic stem cell transplantation (HSCT) improves the survival rate of children and adolescents with malignant and non-malignant conditions; however, the physical, psychological and social burden of such a procedure is considerable both during and after treatment. The present qualitative study investigated the long-term effects of HSCT after pediatric cancer. Thirty adolescent and young adult (AYA) survivors (Mage = 23.61 years, SD = 5.21) participated in individual interviews and were invited to speak about their life experiences following their treatment and strategies they use to deal with their past medical experiences and the long-term sequelae. Our results showed the presence of ongoing physical and psychosocial consequences of their past illness and its treatments with wide ranging psychosocial impacts, such as affected self-image, social withdrawal, sense of lack of choice, and need for specific attention. Different strategies were reported to overcome these consequences, such as talking about illness, giving a sense to their past medical experiences, and developing meaningful social relationships. Clinical and research implications are also discussed.

Attentional impairments in Huntington's disease: A specific deficit for the executive conflict.

OBJECTIVE: Huntington's disease (HD) is characterized by motor and cognitive impairments including memory, executive, and attentional functions. However, because earlier studies relied on multidetermined attentional tasks, uncertainty still abounds regarding the differential deficit across attentional subcomponents. Likewise, the evolution of these deficits during the successive stages of HD remains unclear. The present study simultaneously explored 3 distinct networks of attention (alerting, orienting, executive conflict) in preclinical and clinical HD. METHOD: Thirty-eight HD patients (18 preclinical) and 38 matched healthy controls completed the attention network test, an integrated and theoretically grounded task assessing the integrity of 3 attentional networks. RESULTS: Preclinical HD was not characterized by any attentional deficit compared to controls. Conversely, clinical HD was associated with a differential deficit across the 3 attentional networks under investigation, showing preserved performance for alerting and orienting networks but massive and specific impairment for the executive conflict network. This indexes an impaired use of executive control to resolve the conflict between task-relevant stimuli and interfering task-irrelevant ones. CONCLUSION: Clinical HD does not lead to a global attentional deficit but rather to a specific impairment for the executive control of attention. Moreover, the absence of attentional deficits in preclinical HD suggests that these deficits are absent at the initial stages of the disease. In view of their impact on everyday life, attentional deficits should be considered in clinical contexts. Therapeutic programs improving the executive control of attention by neuropsychology and neuromodulation should be promoted. (PsycINFO Database Record

Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals.

OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement strategies are available. The present study aims to describe the domains of QoL in the context of PPC in oncology, according to the perceptions of professional caregivers. METHOD: Semistructured interviews were conducted with a random sample of 20 professional caregivers from the Division of Hematology/Oncology at Le Centre Hospitalier Universitaire Sainte-Justine (Montréal, Canada). The caregivers were asked about their perceptions about the QoL of the children they have cared for in this context. The data were analyzed using inductive thematic content analysis. RESULTS: The analysis allowed us to identify seven domains of QoL: "physical comfort," "alleviation of psychological suffering," "fun and the present moment," "sense of control," "feeling valued and appreciated," "feeling that life goes on," and "meaningful social relationships." SIGNIFICANCE OF RESULTS: Caregivers recount the regard that should be accorded to maintaining well-being and a sense of fun, as well as fostering the child's abilities, taking account of the progression of the disease, and to fulfilling his or her needs, especially social ones. Our results also demonstrate that all domains were positively referred to by professional caregivers. The data from our study will lead to better assessment of QoL according to the trajectory of a child with advanced cancer while undergoing PPC.

Dissociating emotional and cognitive empathy in pre-clinical and clinical Huntington's disease.

Huntington's disease (HD) is centrally characterized by motor, neurocognitive and psychiatric symptoms, but impaired emotional decoding abilities have also been reported. However, more complex affective abilities are still to be explored, and particularly empathy, which is essential for social relations and is impaired in various psychiatric conditions. This study evaluates empathic abilities and social skills in pre-clinical and clinical HD, and explores the distinction between two empathy sub-components (emotional-cognitive). Thirty-six HD patients (17 pre-clinical) and 36 matched controls filled in the Empathy Quotient Scale, while controlling for psychopathological comorbidities. At the clinical stage of HD, no global empathy impairment was observed but rather a specific deficit for the cognitive sub-component, while emotional empathy was preserved. A deficit was also observed for social skills. Pre-clinical HD was not associated with any empathy deficit. Emotional deficits in clinical HD are thus not limited to basic emotion decoding but extend towards complex interpersonal abilities. The dissociation between impaired cognitive and preserved emotional empathy in clinical HD reinforces the proposal that empathy subtypes are sustained by distinct processes. Finally, these results underline the extent of distinct affective and social impairments in HD and the need to grasp them in clinical contexts.

Predicting quality of life in pediatric asthma: the role of emotional competence and personality.

PURPOSE: The present study examined the predictive value of emotional competence and the five-factor model of personality on the quality of life of children with asthma. METHODS: Participants were 90 children (M age = 11.73, SD = 2.60) having controlled and partly controlled asthma, undergoing everyday treatment. Children filled in questionnaires assessing emotional competence and quality of life. Parents completed questionnaires assessing the personality of their child. RESULTS: Results showed that two emotional competences, bodily awareness and verbal sharing of emotions, were related to the quality of life of children with asthma. Moreover, one personality trait, benevolence, was associated with children's quality of life. Regression analyses showed that the predictive value of these three dimensions remained significant over and above asthma control and socio-demographic variables frequently associated with the quality of life of children with asthma (age, gender, and educational level of parents). CONCLUSIONS: These findings emphasize the importance of alerting the clinician who works with children with asthma to observe and assess the child's expression of emotions, attention to bodily sensations, and benevolence.

Emotional competence and quality of life of children with asthma: The mediating effect of coping strategies.

This study explored the mediating effect of coping strategies on the relationship between emotional competence (EC) and quality of life (QOL) among children with asthma. Participants were 87 children (M age = 11.72, SD = 2.58) with controlled and partially controlled asthma, undergoing everyday treatment. They filled in questionnaires assessing EC, coping strategies and QOL. Results showed that the association between some ECs and the QOL of children with asthma was fully mediated by two maladaptive cognitive coping strategies. Among children with asthma, a greater ability to differentiate their emotions, a reduced attention to bodily signals of emotions and a reduced analysis of their current emotional state were related to decreased engagement in two coping strategies ('Ignoring Asthma' and 'Worrying about Asthma'), which in turn increased their QOL. These findings show that EC has an indirect effect on QOL through very specific coping strategies. They also emphasise the importance of screening EC in children with asthma and the importance of developing and using multidisciplinary interventions for them.

Psychometric properties of the emotion awareness questionnaire for children in a French-speaking population.

In this study, we investigated the psychometric properties of the French version of the Emotion Awareness Questionnaire (EAQ30; Rieffe et al., 2008). The EAQ30 was administered to 707 French-speaking children aged 8 to 16 years old. The original 6-factor structure was replicated in our data. The internal consistency coefficients of the EAQ30 subscales were satisfactory. We found small significant differences for gender and age. Regarding convergent validity, we found positive correlations between EAQ30 scores and emotional intelligence and negative correlations between EAQ30 scores and alexithymia. There was preliminary evidence of discriminant validity, with EAQ30 scores being weakly related to school performance, and concurrent validity, with EAQ30 scores being negatively related to somatic complaints, depression, and anxiety. Finally, except for 1 dimension, EAQ30 scores were not susceptible to social desirability. Although some weaknesses of the scale remain to be addressed, these findings support the use of the EAQ30 for research and clinical purposes.

Cortisol awakening response (CAR)'s flexibility leads to larger and more consistent associations with psychological factors than CAR magnitude.

The cortisol awakening response (CAR) is increasingly recognized as a potential biological marker of psychological and physical health status. Yet, the CAR literature is replete with contradictory results: both supposedly protective and vulnerability psychosocial factors have been associated with both increased and decreased CAR. In this study, we tested the hypothesis that the CAR flexibility would be a better indicator of psychological status than CAR magnitude. Forty-two men measures of happiness, perceived stress and neuroticism, and took saliva samples immediately on awakening, then at 15, 30, 45 and 60min post-awakening on three study days (i.e., Sunday, Monday and Tuesday). When considering the CAR magnitude, our effects perfectly reflect the inconsistencies previously observed in the literature (i.e., the main effects of the psychological predictors are not consistent with each other, and the effect of one predictor on a given day contradicts the effect of the same predictor on another day). However, considering the CAR flexibility leads to a fully consistent pattern: protective factors (i.e., high happiness, low stress, low neurotiscim) are associated with a flexible CAR (i.e., lower CAR during weekends compared to workdays) whereas vulnerability factors (i.e., low happiness, high stress, high neurotiscim) are associated with a stiff CAR (i.e., same magnitude during weekends and workdays). We conclude that considering the CAR flexibility (e.g., between weekends and workdays) rather than the traditional CAR magnitude might be a way to understand the apparent conflicts in the CAR literature.