Parental Bereavement: Looking Beyond Grief - Challenges and Health

For most parents there is no imaginable event more devastating than the death of their child. Nevertheless, while bereaved parents grieve they are also expected to carry on with their life. The day-to-day activities that were once routine for these parents may now be challenging due to the emotional turmoil they are experiencing. To date parental bereavement has been described as complex, intense, individualized, and life-long and their grief responses are interwoven with their daily activities, but the nature of their daily life challenges are not known.

This dissertation highlights the significance of how parents respond to their bereavement challenges because bereaved parents have higher morbidity and mortality rates than non-bereaved parents or adults who have lost their spouse or parents. Many bereaved parents in their daily routines include activities that allow them to maintain a relationship with their deceased child. These behaviors have been described as “continuing bonds”, but with this dissertation the continuing bonds concept is analyzed to provide a clear conceptual definition, which can be used for future research.

Using the Adaptive Leadership Framework as the theoretical lens and a mixed method, multiple case study design, the primary study in this dissertation aims to provides knowledge about the challenges parents face in the first six months following the death of their child, the work they use to meet these challenges, and the co-occurrence of the challenges, and work with their health status. Bereaved parents challenges are unique to their individual circumstances, complex, interrelated and adaptive, as they have no easy fix. Their challenges were pertaining to their everyday life without their child and classified as challenges related to: a) grief, b) continuing bonds, c) life demands, d) health concerns, f) interactions, and g) gaps in the health care system. Parents intuitively responded to the challenges and attempted to care for themselves. However, the role of the healthcare system to assist bereaved parents during this stressful time so that their health is not negatively impacted was also recognized. This study provides a foundation about parental bereavement challenges and related work that can lead to the development and testing of interventions that are tailored to address the challenges with a goal of improving bereaved parents health outcomes.

Obstetric mode of delivery and child psychological development

Background/aims: Objective of the current thesis is to investigate the potential impact of birth by Caesarean section (CS) on child psychological development, including autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), behavioural difficulties and school performance. Structure/methods: Published literature to date on birth by CS, ASD and ADHD was reviewed (Chapter 2). Data from the UK Millennium Cohort Study (MCS) were analysed to determine the association between CS and ASD, ADHD and parent-reported behavioural difficulties (Chapter 3). The Swedish National Registers were used to further assess the association with ASD, ADHD and school performance (Chapters 4-6). Results: In the review, children born by CS were 23% more likely to be diagnosed with ASD after controlling for potential confounders. Only two studies reported adjusted estimates on the association between birth by CS and ADHD, results were conflicting and limited. CS was not associated with ASD, ADHD or behavioural difficulties in the UK MCS. In the Swedish National Registers, children born by CS were more likely to be diagnosed with ASD or ADHD. The association with elective CS did not persist when compared amongst siblings. There was little evidence of an association between birth by elective CS and poor school performance. Children born by elective CS had slight reduction in school performance. Conclusions: The lack of association with the elective CS in the sibling design studies indicates that the association in the population is most probably due to confounding. A small but significant association was found between birth by CS and school performance. However, the effect may have been due to residual confounding or confounding by indication and should be interpreted with caution. The overall conclusion is that birth by CS does not appear to have a causal relationship with the aspects of child psychological development investigated.

Étude moléculaire de la régulation du canal calcique ECaC-TRPV5 : rôle de la phosphorylation et des interactions protéines-protéines

Mémoire numérisé par la Direction des bibliothèques de l'Université de Montréal.

Hearing the Child's Voice: Their Lived Experience in the Pediatric Intensive Care Unit

Background: More than 200,000 children are admitted annually to Pediatric Intensive Care Units (PICUs) in the US. Research has shown young children can provide insight into their hospitalization experiences; child reports rather than parental reports are critical to understanding the child’s experience. Information relating to children’s perceptions while still in the PICU is scarce. Aims: The purpose of this qualitative study was to investigate school age children’s and adolescents’ perceptions of PICU while in the PICU; changes in perceptions after transfer to the General Care Unit (GCU); differences in perceptions of school age children/adolescents and those with more invasive procedures. Methods: Interviews were conducted in PICU within 24-48 hours of admission and 24-48 hours after transfer to GCU. Data on demographics, clinical care and number/types of procedures were obtained. Results: Participants were 7 school age children, 13 adolescents; 10 Hispanic; 13 males. Five overarching themes: Coping Strategies, Environmental Factors, Stressors, Procedures/Medications, and Information. Children emphasized the importance of peer support and visitation; adolescents relied strongly on social media and texting. Parent visits sometimes were more stressful than peer visits. Video games, TV, visitors, and eating were diversional activities. In the PICU, they wanted windows to see outside and interesting things to see on the ceiling above them. Children expressed anticipatory fear of shots and procedures, frustration with lab work, and overwhelming PICU equipment. Number of child responses was higher in PICU (927) than GCU (593); the largest difference was in Environmental Factors. Variations between school age children and adolescents were primarily in Coping Strategies, especially in social support. Number of GCU procedures were the same (8 children) or greater (2 children) than PICU procedures. Discussion: Admission to PICU is a very stressful event. Perceptions from children while still in PICU found information not previously found in the literature. Longitudinal studies to identify children’s perceptions regarding PICU hospitalization and post-discharge outcomes are needed.

The Effects of a Group-Based Approach to Parent-Mediated Early Behavioral Intervention for Very Young Children with or At-Risk for Autism

Thesis (Ph.D.)--University of Washington, 2016-08

Managing Transition from Curative to Palliative: GP and Bereaved Parent Experiences

Background Children with cancer in the UK are treated in regional childhood cancer centres (RCCC). Families and health care professionals can develop close working relationships over the often-long duration of treatment. Cancer still accounts for largest numbers of childhood disease related deaths and as home is commonly the choice of location for palliative and end of life care, the child and family can face transitions both from curative to palliative care and from hospital to home. This paper reports on findings relating to these transitions from the perspectives of parents and family doctors highlighting implications for both hospital and community based health care practitioners. Aims To explore the experiences of bereaved parents and family doctors following the death of a child with cancer in the family home. Methods Ethical approval was sought and obtained. In this qualitative study one-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents were those whose child had received treatment for cancer at a RCCC in the UK and who died at home, the GPs were those involved in the palliative care. Chronological comparative data analysis using grounded theory was completed. Results Cessation of contact with the RCCC when the child receives palliative care at home can be traumatic for parents. Hospital and community based health care professionals need to carefully consider how they establish, maintain and end working relationships with the child and family. Conclusions Findings from this study provide a new perspective to the effective management of transition in paediatric oncology palliative care; managing working relationships. Findings highlight the need for hospital and community based staff to identify and employ strategies that ensure working relationships with families are effectively managed prior to, during and following the child’s transition from curative to palliative care.

Challenges Facing Long Term Foster Carers: Exploration of the Nature of Psychoanalytic Parent/Carer Support

This research study investigates the role and impact of psychoanalytically-informed short-term parent work with long-term foster carers of looked-after children, in support of the foster placement. The study reflects on the data gathered from four child assessments and five foster families seen by a psychoanalytic child psychotherapist for four sessions each. It draws on psychoanalytic ideas from a range of theoretical traditions, exploring such concepts as trauma, defences, compulsion to repeat, psychological-mindedness, ‘container/contained’ (Bion) and ‘holding environment’ (Winnicott). One distinctive contribution of this research is what it adds to our already existing understanding of the defences (or responses) aroused in the carer when faced with the intense and distressing affect associated with the child’s early trauma; and the impact of this legacy of trauma on the child, on the carer and on the wider Social Services system. Applying Grounded Theory and psychoanalytically-informed clinical case study methodology to the research material, the study breaks down the data analysis into seven stages of coding, from the initial reading of the data to the eventual development of two key hypotheses. One of the predominant themes that emerged from the analysis was the carer’s capacity to remain focused on the child’s emotional needs and how this in turn was linked to the direction of the therapist’s focus. The successive analyses of the data culminated in the hypothesis that the more the therapist focused on the carer and the carer’s emotional states in the course of the parent work, the more the carer was enabled to focus on the child’s emotional needs. As the system of categories emerged according to the themes exemplified in the sessions, a particular focus of analysis became the concept of psychologicalmindedness, considered under several sub-categories: displaying insightful comments; awareness of the child’s bodily states; awareness of the child’s affect; the carer’s ability to recognize the child’s defences; and the carer’s ability to make links between the child’s current difficulties and the child’s past experiences. Through this analysis it became apparent that degree of psychological-mindedness was closely linked to the individual carer’s capacity to metabolize the child’s distressed and distressing communication. This in turn led to a deeper exploration of the situations that were particularly challenging for the carers: i.e., instances when the child was compelled to repeat past traumatic emotional states and as a result was communicating intense distress. This exploration eventually generated the second hypothesis: that in reaction to the child’s distress, the response of each carer could be plotted somewhere along a spectrum, from either distancing themselves from the child’s emotional state to seeking excessive closeness with the child (merging). The next stage of the analysis developed four new categories of carer responses to the distressed child: identification and distancing from the child; identification and merging with the child; the category that describes the carer’s psychologicalmindedness as being ‘impaired’; and ‘good enough’ caring. This then led to an exploration of the carer’s own defences at these most challenging times. This research demonstrates clearly that even within the short space of four sessions of weekly psychoanalytic parent work, it is possible to achieve significant improvement in a carer’s capacity to bear the child’s compulsion to repeat early traumas, and to help the carers become more emotionally available to provide the child with effective psychological parenting at such difficult and challenging times. Key words: looked-after children; long-term foster carers; psychoanalytic short-term parent work; trauma; compulsion to repeat; psychological-mindedness; empathy; defences; psychoanalytically-informed clinical case study research methodology; Grounded Theory research methodology.

A qualitative study of the emotional coping and support needs of children living with a parent with a brain injury

Primary objective: To examine emotional coping and support needs in children of persons with acquired brain injury, with a view to understanding what interventions would be helpful for these children. Design: The study was qualitative, using a thematic analysis approach. Methods and procedure: Six children between 9 and 18 years of age, six parents (three with ABI), and three support workers were interviewed either at home or at a support centre, using a semi-structured interview guide. Results: Children reported using a variety of adaptive and maladaptive emotional coping strategies, but were consistent in expressing a need for credible validation, i.e. sharing experiences with peers. The results are presented under four overarching themes: difficulties faced; emotions experienced; coping strategies; and reported support needs. Conclusions: The results reveal an interaction between the child’s experiences of complex loss that is difficult to acknowledge, emotional distancing between parent and child, and the children’s need for credible validation. All children expressed a desire for talking to peers in a similar situation to themselves, but had not had this opportunity. Interventions should set up such peer interaction to create credible validation for the specific distress suffered by this population.

Perturbative 2-body parent Hamiltonians for projected entangled pair states

We construct parent Hamiltonians involving only local 2-body interactions for a broad class of projected entangled pair states (PEPS). Making use of perturbation gadget techniques, we define a perturbative Hamiltonian acting on the virtual PEPS space with a finite order low energy effective Hamiltonian that is a gapped, frustration-free parent Hamiltonian for an encoded version of a desired PEPS. For topologically ordered PEPS, the ground space of the low energy effective Hamiltonian is shown to be in the same phase as the desired state to all orders of perturbation theory. An encoded parent Hamiltonian for the double semion string net ground state is explicitly constructed as a concrete example.

Child anxiety, resiliency, and the FRIENDS for Life program

Anxiety disorders are the most commonly diagnosed group of mental disorders in children (Kessler et al., 2012). Resiliency, defined as a child’s ability to successfully overcome an adverse event (Newland, 2014) is believed to be comprised of protective factors such as self-esteem and positive coping strategies (Rutter, 1987). These protective factors are related to child anxiety in that their presence or absence may augment or hinder a child’s resiliency towards anxiety-provoking events and situations (Lo Casico, Guzzo, & Pace, 2013; Thorne, Andrews, & Nordstokke, 2013). The FRIENDS for Life (FFL) program is a school-based anxiety prevention program which aims to decrease anxiety and increase resiliency in 8- to 11-year-old children (Barrett & Sonderegger, 2003). Previous studies have shown FFL to be an effective tool in decreasing anxiety and increasing resiliency; however, not all previous studies have utilized control or comparison groups (Brownlee et al., 2013; Neil & Christensen 2007; Stopa, Barrett, & Golingi, 2011). Moreover, existing FRIENDS literature has not previously considered the potential role of parent anxiety in child outcomes. The present study aimed to evaluate child anxiety, resiliency, and parent anxiety in relation to the FFL program while including a no-treatment control group. It was hypothesized that child anxiety would decrease and child resiliency would increase following FFL. Results obtained from a non-identified school-based sample were not entirely consistent with predictions, such that decreases in anxiety and increases in resiliency were observed in both the experimental and control groups.

Non-communicable diseases among children in Ghana: health and social concerns of parent/caregivers.

Background: Globally, there is a progressive rise in the burden of non-communicable diseases (NCDs). This paper examined the health and social concerns of parents/caregivers on in-patient care for children with NCDs in Ghana. Methods: This was a cross-sectional study in three large health facilities in Ghana (the largest in the South, the largest in the North and the largest in the Eastern part of Ghana. Data was collected with a structured questionnaire among 225 caregivers (≥18 years) of 149 children with NCDs in health facilities in the three regions. Data was analyzed with simple descriptive statistics. Results: Most caregivers 169(75.0%) were women, relatively young (median age 35years), mostly married and resided in urban areas. Sickle cell disease was the commonest NCD among the children. All 169(75.0%) caregivers believed children suffer NCDs because of sins of parents/ancestors, 29(12.9%) believed herbalists/spiritualists have insights into treating NCDs and 73(32.6%) have previously used herbs/traditional medicine for child's illness. NCD in children was a burden and caused financial difficulties for families. Most caregivers (>96.0%) indicated NCDs in children should be included in national health insurance benefits package and a comprehensive national NCD policy is needed. Conclusion: Absence of national NCD policy for children is a major challenge. The burden of care rests mainly on the parents/ caregivers. A national strategic intervention on the importance of awareness generation on the causes, risk factors, prevention and treatment of NCDs for families and communities is essential. Government support through national health and social policy initiatives are essential.

Parental feelings face to hospitalization of the child

The hospitalizatíon of a child carnes with it major changes, etther in the child's life or parent. lllness and hospttalizatíon constitute a crisis situation for both the child and the famHy as it incorporates financiai, psychotogical, relational and social changes. The purpose of this work and analyze the satísfactíon and parents' perception on the importance of nursing care during hospttalizatíon and feelings experienced by parents. Objectives: To know the opinions and feelings of the parents in relation to the admlsston of the child 1n the service of Pediatrics at North of Portugal. Methods: Integrated this study parents of chtldren hospttalized in the pediatric inpatíent at the Hospital Trás-os-Montes e alto Douro, Vila Real, whose children were in the service to at least more than 48 hours, In total 33 escorts that replied to the questionnaire. For such a study we chose the type quantitative deschptíve. We proceeded to collect data by conductíng a questíonnaire, and the results of it were drafted in the SPSS program through Quantitatíve model wtth exploratory qualitatíve approach. Results: The age ofthe partícipants is between the 21 and 46 years - old, 75. 8% of respondents were married, 78. 8% of chtldren was hospitalized in the first time. We conclude that the mother is who else accompanies the chtld in the hospital. We had positive feedback regarding the interactíon parent-nurses since many parents stressed the good relatíonship with the nursing team (It reported that "Nurses" and "Nurses and "auxiliaries" were who else helped them, with 30. 3% and 21. 2% respectively). The feelings more mentioned were: anxiety -21 answers, sadness-20, fear-15 and hope with 15. The conditions offered to the parents were considered goodfor60.6%.

Unemployment, parental distress and youth emotional well-being: The moderation roles of parent-youth relationship and financial deprivation

We investigated, in a sample of 112 unemployed parents of adolescents aged 10-19 years, the links between parental distress and change in youth emotional problems related to parental unemployment, and the moderation roles of parent-youth relationship and financial deprivation. Data were analyzed using descriptive statistics and correlations. Further, simple moderation, additive moderation, and moderated moderation models of regression were performed to analyze the effects of parental distress, parent-youth relationship and financial deprivation in predicting change in youth emotional problems related to parental unemployment. Results show that parental distress moderated by parent-youth relationship predicted levels of change in youth emotional problems related to parental unemployment. This study provides evidence that during job loss, parental distress is linked to youth emotional well-being and that parent-youth relationships play an important moderation role. This raises the importance of further researching parental distress impacts on youth well-being, especially during periods of high unemployment rates.

Drinking water disinfection by-products, genetic polymorphisms, and birth outcomes in a european mother-child cohort study

International audience

Cortisol Awakening Response in Preschoolers and Depression Risk: Relations with Maternal History of Depression and Child Temperament

Increasing research suggests that elevations in the cortisol awakening response (CAR), the natural increase of cortisol 30 to 40 minutes after waking, may serve as a vulnerability marker for depression. However, existing studies have focused on adolescence and adulthood; very little is known about the CAR in early childhood and the factors that are associated with it. The current study aimed to examine the validity of the CAR as a potential early-emerging vulnerability marker for depression in a sample of preschool-age children. We examined associations between the CAR and two well-established risk factors for depression: maternal psychopathology and early child temperament (high negative emotionality (NE) and/or low positive emotionality (PE)). The sample consisted of 146 preschool-age children, of whom 71 (49.3%) had a biological mother with a history of depression and 65 (45.5%) had a biological mother with a history of anxiety. To assess the CAR, salivary cortisol samples were collected from the child upon waking, 30 and 45 minutes post-waking on two weekdays. Children’s CAR was examined as the total volume of cortisol secreted (AUCg) and the total increase in cortisol (AUCi) across waking. Evening cortisol was collected 30 minutes before bedtime. Child temperament was assessed using observational laboratory measures. Maternal depression and anxiety were assessed with clinical interviews. Associations with children’s CAR, as indicated by AUCg or AUCi, appeared to be specific to maternal current psychopathology and symptoms of anhedonia. Additionally, we observed significant interactions for both maternal lifetime and current depression and anxiety, in combination with child NE and PE, on elevated evening cortisol levels and flattened diurnal cortisol rhythms, indicating altered patterns of basal cortisol activity in offspring. Our study contributes to the limited but growing knowledge on the development of the CAR in preschool age children and as a marker of early risk. Findings suggest that there is a complex interplay between familial risk, affective vulnerability, and their joint effects on neuroendocrine dysfunction in young children, and highlight the need for future research to examine which aspects of the early diurnal rhythm predict the emergence of later depressive illness.