Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people.

A specific and rapid neural signature for parental instinct

Darwin originally pointed out that there is something about infants which prompts adults to respond to and care for them, in order to increase individual fitness, i.e. reproductive success, via increased survivorship of one's own offspring. Lorenz proposed that it is the specific structure of the infant face that serves to elicit these parental responses, but the biological basis for this remains elusive. Here, we investigated whether adults show specific brain responses to unfamiliar infant faces compared to adult faces, where the infant and adult faces had been carefully matched across the two groups for emotional valence and arousal, as well as size and luminosity. The faces also matched closely in terms of attractiveness. Using magnetoencephalography (MEG) in adults, we found that highly specific brain activity occurred within a seventh of a second in response to unfamiliar infant faces but not to adult faces. This activity occurred in the medial orbitofrontal cortex (mOFC), an area implicated in reward behaviour, suggesting for the first time a neural basis for this vital evolutionary process. We found a peak in activity first in mOFC and then in the right fusiform face area (FFA). In mOFC the first significant peak (p<0.001) in differences in power between infant and adult faces was found at around 130 ms in the 10-15 Hz band. These early differences were not found in the FFA. In contrast, differences in power were found later, at around 165 ms, in a different band (20-25 Hz) in the right FFA, suggesting a feedback effect from mOFC. These findings provide evidence in humans of a potential brain basis for the "innate releasing mechanisms" described by Lorenz for affection and nurturing of young infants. This has potentially important clinical applications in relation to postnatal depression, and could provide opportunities for early identification of families at risk.

Chronic illness in non-heterosexual contexts: towards a critical LGBTQ health psychology

In this thesis, I contribute to the expansion of lesbian, gay, bisexual, trans and queer (LGBTQ) psychology by examining chronic illness within non-heterosexual contexts. Chronic illness, beyond the confines of HIV/AIDS, has been a neglected topic in LGBTQ psychology and sexual identity is often overlooked within health psychology. When the health of lesbian, gay and bisexual (LGB) people has been considered there has been an over-reliance on quantitative methods and comparative approaches which seek to compare LGB people?s health to their heterosexual counterparts. In contrast, I adopt a critical perspective and qualitative methods to explore LGBTQ health. My research brings together ideas from LGBTQ psychology and critical health psychology to explore non-heterosexuals? experiences of chronic illness and the discursive contexts within which LGB people live with chronic health conditions. I also highlight the heteronormativity which pervades academic health psychology as well as the „lay? health literature. The research presented in this thesis draws on three different sources of qualitative data: a qualitative online questionnaire (n=190), an online discussion within a newsgroup for people with diabetes, and semi-structured interviews with 20 LGB people with diabetes. These data are analysed using critical realist forms of thematic analysis and discourse analysis. In the first analytic chapter (Chapter 3), I report the perspectives of LGB people living with many different chronic illnesses and how they felt their sexuality shapes their experiences of illness. In Chapter 4, I examine heterosexism within an online discussion and consider the ways in which sexuality is constructed as (ir)relevant to a diabetes support forum. In Chapter 5, I analyse LGB people?s talk about the support family and partners provide in relation to their diabetes and how they negotiate wider discourses of gender, sexuality and individualism. In Chapter 6 I explore how diabetes intersects with gay and bisexual men?s sex lives. In the concluding chapter, I discuss the contributions of my research for a critical LGBTQ health psychology and identify some possible areas for future research.

Medical treatment contrary to parents wishes: the illusion of parental autonomy

The NHS Trust v A (a child) & Ors [2007] EWHC 169

The relationship between parental perceptions of diabetes and glycaemic control

Aim: To measure the relationship between perceived child competence, parental self-efficacy, and children's glycaemic control. Methods: Cross-sectional outpatient based questionnaire survey of 78 parents of children aged 6-12 years with insulin dependent diabetes mellitus, diagnosed for at least one year. Parental perceptions of their child's competence were assessed, together with parental perceptions of their own self-efficacy in managing their child's diabetes. Glycaemic control was assessed by the average annual HbA 1C level. Results: The response rate was 64.5% (51 parents); 82% were mothers and the socioeconomic class and ethnicity spread was representative of the general population. The mean age of the children was 10 years and duration of diabetes 4.4 years. Poorer glycaemic control was associated with higher perceived child competence, together with lower perceived age of responsibility, lower perceived seriousness, and less frequent blood tests. Higher parental self-efficacy and higher perceived child competence predicted a higher level of normalisation, as did lower perceived seriousness, a lower perceived parental responsibility for management, and a less protective style of parenting. Conclusion: Parents' perceptions of their children's diabetes are significantly related to glycaemic control; however, those who appear more competent at managing diabetes may overestimate their child's capabilities, leading to poorer glycaemic control.

Contextualising accounts of illness:Notions of responsibility and blame in white and South Asian respondents' accounts of diabetes causation

We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed subtle, but important, differences in the ways in which these respondent groups attributed responsibility and blame for developing the disease. Whereas Pakistani and Indian respondents tended to externalise responsibility, highlighting their life circumstances in general and/or their experiences of migrating to Britain in accounting for their diabetes (or the behaviours they saw as giving rise to it), white respondents, by contrast, tended to emphasise the role of their own lifestyle 'choices' and 'personal failings'. In seeking to understand these differences, we argue for a conceptual and analytical approach which embraces both micro- (i.e. everyday) and macro- (i.e. cultural) contextual factors and experiences. In so doing, we provide a critique of social scientific studies of lay accounts/understandings of health and illness. We suggest that greater attention needs to be paid to the research encounter (that is, to who is looking at whom and in what circumstances) to understand the different kinds of contexts researchers have highlighted in presenting and interpreting their data. © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

Parental information needs in chronic renal failure and diabetes mellitus

The information needs of parents of children with end stage renal failure (ESRF) or with insulin dependent diabetes mellitus (IDDM) were assessed by questionnaires over a 2-year period. Questionnaires were posted on seven occasions at 4-monthly intervals and were sent to both mothers and fathers. Most information needs were reported to be for detailed test results, for new information about the condition and about the child's future social development. Questions responsible for the three highest scores were concerned with the future: the child's fertility; their social, career and marriage prospects; and the hope for a new improved treatment. For the IDDM mothers, scores were significantly different depending on age of the child (P = 0.02). Change in treatment mode had no significant effect on the information needs of parents of children with ESRF (P = 0.81). Occupation was significantly associated with the mean general information needs scores for parents, with occupations of a lower socioeconomic status associated with higher information needs scores. There were no significant differences between the reported mean general information needs scores of parents of children with ESRF and of parents of children with IDDM (P = 0.69) or between mothers and fathers mean general information needs scores (P = 0.58). CONCLUSION: Multidisciplinary team members need to tailor information to the needs of the individual families and be sensitive to socioeconomic factors and communication issues.

Chronic illness in non-heterosexual contexts: an online survey of experiences

In this article we contribute to the expansion of lesbian, gay, bisexual, transgender and queer (LGBTQ) health psychology beyond the confines of sexual health by examining the experiences of lesbian, gay and bisexual people living with non-HIV related chronic illness. Using a (predominantly) qualitative online survey, the perspectives of 190 LGB people with 52 different chronic illnesses from eight countries were collected. The five most commonly reported physical conditions were arthritis, hypertension, diabetes, asthma and chronic fatigue syndrome. Our analysis focuses on four themes within participants’ written comments: (1) ableism within LGBT communities; (2) isolation from LGBT communities and other LGB people living with chronic illness; (3)heteronormativity within sources of information and support and; (4) homophobia from healthcare professionals. We conclude by suggesting that LGBTQ psychology could usefully draw on critical health psychology principles and frameworks to explore non-heterosexual’s lived experiences of chronic illness, and also that there remains a need for specifically targeted support groups and services for LGB people with chronic illnesses.

Decompression illness and its regulation in contemporary UK tunnelling : an engineering perspective:an engineering perspective

This thesis records the findings of a retrospective study of decompression illness (DCI) in the UK compressed air tunnelling industry since the mid-1980s. The thesis describes how the study arose, its scope and objectives, along with an overview of tunnelling and shaft-sinking. The development of compressed air working techniques is reviewed along with a description of decompression practice and DCI, and an outline of relevant legislation and guidance. The acquisition and manipulation of data to form a number of databases and spreadsheets on which the analysis was performed is discussed. That analysis examined measures of DCI incidence and quantified that incidence using these measures. Also considered is the variation in tolerance and susceptibility to DCI in the workforce, and the phenomenon of acclimatisation. An examination of the extent to which men worked on multiple contracts and the variation in their susceptibility to DCI on these contracts is included. Options are then considered for reducing the incidence of DCI. The first retained air-only decompression through the application of restrictions on exposure. The second related to the use of oxygen decompression. Finally the adequacy of the existing Regulations and Guidance is considered and recommendations made for possible changes to them, arising from the study. The main conclusions are that a number of measures of DCI incidence were identified, some more appropriate than others and that the incidence of DCI when so measured was high, disproportionately so in shift workers. No reasonably practicable restrictions on exposure were identified which would have allowed the retention of air-only decompression. Oxygen decompression looked promising but had yet to be used sufficiently extensively to generate enough data for analysis. Recommendations included one that an alternative technique for monitoring the effectiveness of decompression should be developed. The thesis ends with recommendations for further research.

Adolescents and the experience of parental divorce:including reference to the expectations of teacher trainees

The aims of this study were to investigate the impact of parental divorce on adolescents, and the expectations of teacher trainees with regard to children of divorce. The literature related to children of divorce is reviewed and the results of interviews with a sample of recently divorced custodial parents and their adolescent children, using a structured interview schedule, are described. The semantic differential technique was used to obtain ratings of a sample of teacher trainees' expectations of children of divorce as compared with their ratings of several other categories of children. The results of the interviews with parents and their adolescent children suggested that parental divorce does not necessarily interfere with adolescent development and that for some adolescents the reduction of conflict in the home might enhance normal development. They also suggest that adolescents would prefer to live in a one parent home rather than a two parent home which is fraught with conflict, and that it is preferable for parents who are unable to resolve such conflict in any other way to separate rather than allow it to persist. The ratings of children of divorce by teacher trainees suggest that they hold more negative expectations of such children than of other groups • such as adopted children. The contrast between this finding and the results of the interviews with adolescents and their parents lends some support to the existence of the divorce myth; that is, the cultural belief that divorce has the inherent power to make people unhappy. The implications for policy, practice and further research are discussed.

Validation of the food allergy quality of life:parental burden questionnaire in the UK

Purpose - Food allergy can have a profound effect on quality of life (QoL) of the family. The Food Allergy Quality of Life—Parental Burden Questionnaire (FAQL-PB) was developed on a US sample to assess the QoL of parents with food allergic children. The aim of this study was to examine the reliability and validity of the FAQL-PB in a UK sample and to assess the effect of asking about parental burden in the last week compared with parental burden in general, with no time limit for recall given. Methods - A total of 1,200 parents who had at least one child with food allergy were sent the FAQL-PB and the Child Health Questionnaire (CHQ-PF50); of whom only 63 % responded. Results - Factor analysis of the FAQL-PB revealed two factors: limitations on life and emotional distress. The total scale and the two sub-scales had high internal reliability (all a > 0.85). There were small to moderate but significant correlations between total FAQL-PB scores and health and parental impact measures on the CHQ-PF50 (p < 0.01). Significantly greater parental burden was reported for the no-time limited compared with the time-limited version (p < 0.01). Conclusions - The FAQL-PB is a reliable and valid measure for use in the UK. The scale could be used in clinic to assess the physical and emotional quality of life in addition to the impact on total quality of life.

Inducing preschool children's emotional eating:relations with parental feeding practices

Background: Children's emotional eating is related to greater body mass index and a less-healthy diet, but little is known about the early development of this behavior. Objective: This study aimed to examine the relations between preschool children's emotional eating and parental feeding practices by using experimental manipulation of child mood and food intake in a laboratory setting. Design: Twenty-five 3–5-y-old children and their mothers sat together and ate a standard meal to satiety. Mothers completed questionnaires regarding their feeding practices. Children were assigned to a control or negative mood condition, and their consumption of snack foods in the absence of hunger was measured. Results: Children whose mothers often used food to regulate emotions ate more cookies in the absence of hunger than did children whose mothers used this feeding practice infrequently, regardless of condition. Children whose mothers often used food for emotion regulation purposes ate more chocolate in the experimental condition than in the control condition. The pattern was reversed for children of mothers who did not tend to use food for emotion regulation. There were no significant effects of maternal use of restriction, pressure to eat, and use of foods as a reward on children's snack food consumption. Conclusions: Children of mothers who use food for emotion regulation consume more sweet palatable foods in the absence of hunger than do children of mothers who use this feeding practice infrequently. Emotional overeating behavior may occur in the context of negative mood in children whose mothers use food for emotion regulation purposes. This trial was registered at clinicaltrials.gov as NCT01122290.

The Maudsley Early Onset Schizophrenia Study:The effect of age of onset and illness duration on fronto-parietal gray matter

Objective: In Early Onset Schizophrenia (EOS; onset before the 18th birthday) late brain maturational changes may interact with disease mechanisms leading to a wave of back to front structural changes during adolescence. To further explore this effect we examined the relationship between age of onset and duration of illness on brain morphology in adolescents with EOS. Subjects and methods: Structural brain magnetic resonance imaging scans were obtained from 40 adolescents with EOS. We used Voxel Based Morphometry and multiple regressions analyses, implemented in SPM, to examine the relationship between gray matter volume with age of onset and illness duration. Results: Age of onset showed a positive correlation with regional gray matter volume in the right superior parietal lobule (Brodmann Area 7). Duration of illness was inversely related to regional gray matter volume in the left inferior frontal gyrus (BA 11/47). Conclusions: Parietal gray matter loss may contribute to the onset of schizophrenia while orbitofrontal gray matter loss is associated with illness duration. © 2008 Elsevier Masson SAS. All rights reserved.