A qualitative exploration of health-related quality of life and health behaviours in children with sickle cell disease and healthy siblings.

OBJECTIVES: This study explored the health-related quality of life (HRQL) and health behaviours of children with sickle cell disease (SCD) and healthy siblings, drawing on Gap theory, which suggests HRQL is the discrepancy between current and ideal selves. DESIGN: Thirty-two interviews, facilitated by children's drawings of their current and ideal selves were thematically analysed. RESULTS: Two themes were identified. First, limitations of SCD and adjusted expectations. Children with SCD report some discrepancy in HRQL as they would like to participate in more physical activity, but overall, they appear to have normalised their condition and adjusted their expectations in the context of the limits of their condition. Healthy siblings worry about their sibling and have greater expectations about engaging in adventurous activities and for their future. Second, coping with SCD. Children have limited social support, although children with SCD seek support from their mothers. They also modify health behaviours, like reducing exercise to help prevent and cope with sickle-related pain. CONCLUSION: Children have some discrepancies in their HRQL but adjusted expectations among children with SCD may reduce discrepancy. Adapting health behaviours may help to cope with SCD but it is important that reductions in physical activity do not impair HRQL.

Mental health and coping with fertility treatment cessation during the COVID-19 pandemic in the UK.

PURPOSE: This study examined experiences during the cessation of fertility treatment due to the COVID-19 pandemic, including levels of mental health, coping strategies used to manage uncertainty about treatment due to the pandemic, sources of support, and predictors of mental health. METHODS: One hundred and seventy-five participants in the UK completed an online survey. RESULTS: Half of the participants experienced clinical levels of anxiety and/or depression, and 20% reported suicidal feelings as a result of the uncertainty about treatment due to the pandemic. Support from friends, family and online forums were reported by more than half of participants, but support from fertility clinics or counsellors were reported by less than one quarter. The strategy used most frequently to cope with the uncertainty about treatment due to the pandemic was self-distraction, and this predicted reduced depression. However, self-blame, behavioral disengagement and venting predicted increased depression and self-blame, behavioral disengagement, and denial predicted increased anxiety. CONCLUSIONS: Fertility clinic communication and psychological support, such as counselling, which had substantially reduced during treatment cessation, could include some focus on personal coping, including what to avoid. Psychological support is likely to be more important now than ever. Despite resumption of treatment, the impacts of the period of cessation and of COVID-19 are likely to continue to reverberate.

Transition to parenthood after successful non-donor in vitro fertilisation: The effects of infertility and in vitro fertilisation on previously infertile couples' experiences of early parenthood.

Recent social science research in the field of parenting following assisted conception has focused on the experiences of donor-assisted conception and surrogacy. This article draws from a study which explored the experiences of the transition to early parenthood in 16 heterosexual non-donor couples and includes a specific consideration of the experiences of men as they navigate this journey. We argue that these couples' transition to early parenthood can be as complex and provisional as in other newer forms of family making as they struggle with an emerging identity as a parent after successful non-donor in vitro fertilisation following their experiences of infertility. Their family making is contingent upon their ability to work at integrating their experiences of infertility and in vitro fertilisation into their emerging identity as a parent. This struggle is prominent when they contemplate a further pregnancy. Considering a sibling causes them further uncertainty and anxiety because it reminds them of their infertile identify and the possibility of further in vitro fertilisation. We report novel findings about the experiences of this transition to parenthood: how couples' identity as parents is shaped by the losses and grief of infertility and the anxiety of in vitro fertilisation. We argue that their struggle with an emerging parenthood identity challenges the normative, naturalised view of non-donor heterosexual in vitro fertilisation parenthood. Our work contributes to the work on identity in parenthood after in vitro fertilisation in an ongoing effort to understand how assisted technologies shape infertile parents' lives. This article reports a small study with a relatively homogeneous sample recruited from one fertility clinic. Nevertheless as an exploratory study of an under researched topic, we discuss useful insights and ideas for further research with larger and more diverse samples.

Experiences of involuntary childlessness and treatment in the UK: what has changed in 20 years?

This study examined the financial, emotional and relationship impacts of involuntary childlessness and treatment, and the satisfaction with support from professionals. 796 participants in the UK completed an online survey based on a similar survey conducted in 1997. 55% of participants had to pay for at least part of their treatment. High levels of distress were experienced and 42% experienced suicidal feelings at least occasionally. Those most at risk of distress and suicidal feelings had experienced unsuccessful treatment outcomes, spent longer trying to conceive and reported some relationship strains. While 75% would like to have received counselling if it had been free, 45% only received such counselling and 54% of these had to fund some of it themselves. Although advances have been made in improving the availability of funded treatment and psychological support, involuntary childlessness and treatment continue to have financial, emotional and relationship consequences for many people. While counselling was generally reported to be useful, an approach involving all fertility clinic staff in the psychosocial care of clients is advisable.

Experiences and psychological distress of fertility treatment and employment.

Purpose: This study examined experiences and psychological distress about fertility treatment in people combining work and treatment. Methods: Five hundred and sixty-three participants in the UK completed an online survey asking about difficulties in combining work and treatment; workplace disclosure, support, absence and policy; and psychological distress about treatment. Results: Absence from work and perceptions that treatment has an impact on work and career prospects were reported by the majority of participants and this was related to the psychological distress of treatment. Around three quarters of participants disclosed to their employer and colleagues. The key reason for disclosure was needing to ask for absence from work and the main reason for non-disclosure was privacy. Workplace policy relating to managing fertility treatment and support from colleagues and their employer was related to reduced psychological distress but workplace policy was reported by less than one quarter of participants. Conclusion: Difficulties experienced in combining work and treatment suggest that support is needed. Specific workplace policy, guidance for supervisors and flexibility in fertility clinic times should help support employees during treatment and reduce psychological distress, thereby potentially influencing physical health and treatment outcomes.

Does working memory training improve dietary self-care in type 2 diabetes mellitus? Results of a double blind randomised controlled trial.

AIMS: Controlling food intake despite adequate knowledge remains a struggle for many people with type 2 diabetes. The present study investigated whether working memory training can reduce food intake and improve glycaemic control. It also examined training effects on cognition, food cravings, and dietary self-efficacy and self-care. METHODS: In a double-blind multicentre parallel-group randomised controlled trial, adults with type 2 diabetes mellitus were randomly allocated to receive 25 sessions of either active (n = 45) or control (n = 36) working memory training. Assessments at baseline, post-training and 3-month follow-up measured cognition, food intake (primary outcomes), glycaemic control (HbA1c) and cholesterol (secondary outcomes). Semi-structured interviews assessed participants' experiences of the training. RESULTS: Intention-to-treat ANOVAs (N = 81) showed improved non-trained updating ability in active compared to control training from pre-test (active M = 34.37, control M = 32.79) to post-test (active M = 31.35, control M = 33.53) and follow-up (active M = 31.81, control M = 32.65; η2 = 0.05). There were no overall effects of training on other measures of cognition, food intake, HbA1c, cholesterol, food cravings and dietary self-efficacy and self-care. In post-hoc analyses, those high in dietary restraint in the active training group showed a greater reduction in fat intake pre to post-test compared to controls. Interviews revealed issues around acceptability and performance of the training. CONCLUSIONS: Transfer of working memory training effects to non-trained behaviour were limited, but do suggest that training may reduce fat intake in those who are already motivated to do so. TRIAL REGISTRATION: Current Controlled Trials ISRCTN22806944.

Depression and state anxiety scores during assisted reproductive treatment are associated with outcome: a meta-analysis.

This meta-analysis investigated whether state anxiety and depression scores during assisted reproductive technology (ART) treatment and changes in state anxiety and depression scores between baseline and during ART treatment are associated with treatment outcome. PubMed, PsycInfo, Embase, ScienceDirect, Web of Science and Scopus were searched and meta-analytic data analysed using random effects models to estimate standardized mean differences. Eleven studies (2202 patients) were included. Women who achieved pregnancy had significantly lower depression scores during treatment than women who did not become pregnant (-0.302; 95% CI: -0.551 to -0.054, z = -2.387, P = 0.017; I2 = 77.142%, P = 0.001). State anxiety scores were also lower in women who became pregnant (-0.335; 95% CI: -0.582 to -0.087, z = -2.649, P = 0.008; I2 = 81.339%, P = 0.001). However, changes in state anxiety (d = -0.056; 95% CI: -0.195 to 0.082, z = -0.794; I2 = 0.00%) and depression scores (d = -0.106; 95% CI: -0.296 to 0.085, z = -1.088; I2 = 0.00%) from baseline to treatment were not associated with ART outcome. Clinics should aim to promote better psychosocial care to help patients manage the psychological and physical demands of ART treatment, giving realistic expectations.

Secrets and disclosure in donor conception.

This article considers the disclosure, sharing and exchange of information on being donor conceived within families, drawing on data from a study undertaken with donor-conceived adults registered with UK Donor Link (a voluntary DNA-linking register). This paper considers the narratives of how respondents found out they were donor-conceived and what events triggered disclosure of this information. This paper then goes on to examine the role secrecy played in their family life and uses the concept of 'display' to explore how secrecy affected their relationships with their immediate and extended family. Secrets are notoriously 'leaky' and we found complex patterns of knowing and uncertainty about whom in the family knew that the person was donor-conceived. We argue that what is kept secret and from whom provides insights into the multifaceted web of social relationships that can be created by donor-conception, and how knowledge can be managed and controlled in attempts to display and maintain family narratives of biogenetic connection.

The role of working memory sub-components in food choice and dieting success.

Evidence suggests a role for self-reported working memory (WM) in self-reported food intake, but it is not known which WM sub-components are involved. It is also important to consider how individual differences in dietary restraint and disinhibition influence WM and the impact of this on food choice. The current study assessed the relationship between WM sub-components and food choice, using computerised measures of WM sub-components and a direct assessment of food intake. The role of dieting success (measured by restraint and disinhibition) as a distal predictor of food choice that influences food choices via WM, and the role of WM more generally in dieting success were investigated. Female undergraduate students (N = 117, mean age: 18.9 years, mean BMI: 21.6 kg/m2) completed computer tasks assessing three components of WM (updating, phonological loop and visuospatial sketchpad) and a snack food taste-test. Greater visuospatial WM span was associated with a higher (lower) percentage of food intake that was low (high) energy dense. It was also found that unsuccessful dieters (high restraint, high disinhibition) had poorer visuospatial WM span and consumed a lower (higher) percentage of low (high) energy dense food. Visuospatial WM span significantly mediated the relationship between dieting success and percentage of low energy dense food intake. Further, dietary restraint was associated with poorer updating ability, irrespective of disinhibition. These findings suggest that better visuospatial WM is associated with a greater (reduced) preference for low (high) energy dense foods, and that deficits in visuospatial WM may undermine dieting attempts. Future work should assess whether the ability to deal with food cravings mediates the relationship between visuospatial WM and dieting success and investigate how WM may influence the mechanisms underlying behavioural control.

Gamete donors' reasons for, and expectations and experiences of, registration with a voluntary donor linking register.

This paper reports on a study of the views and experiences of 21 sperm donors and five egg donors registered with UK DonorLink (UKDL), a voluntary DNA-based contact register established to facilitate contact between adults who wish to identify and locate others to whom they are genetically related following donor conception. Specifically, the paper examines donors' reasons for searching for, or making information about themselves available to donor-conceived offspring. Their expectations of registration with UKDL, experiences of being registered and finally, the experiences of those who had contacted donor-conceived offspring and other genetic relatives are investigated. While most respondents reported largely positive experiences of registration, the study found significant issues relating to concerns about donation, DNA testing, possible linking with offspring and expectations of any relationship that might be established with offspring that have implications for support, mediation and counselling. Research that puts the experiences, perceptions and interests of gamete donors as the central focus of study is a relatively recent phenomenon. This study contributes to this debate and highlights directions for future research in this area.

Maternal psychosocial consequences of twins and multiple births following assisted and natural conception: a meta-analysis.

The aim of this meta-analysis is to provide new evidence on the effects on maternal health of multiple births due to assisted reproductive technology (ART). A bibliographic search was undertaken using PubMed, PsycINFO, CINAHL and Science Direct. Data extraction was completed using Cochrane Review recommendations, and the review was performed following PRISMA and MOOSE guidelines. Meta-analytic data were analysed using random effects models. Eight papers (2993 mothers) were included. Mothers of ART multiple births were significantly more likely to experience depression (standardized mean difference [SMD] d = 0.198, 95% CI 0.050 - 0.345, z = 2.623, P = 0.009; heterogeneity I(2) = 36.47%), and stress (SMD d = 0.177, 95% CI 0.049 - 0.305, P = 0.007; heterogeneity I(2) = 0.01%) than mothers of ART singletons. No difference in psychosocial distress (combined stress and depression) (SMD d = 0.371, 95% CI -0.153 - 0.895; I(2) = 86.962%, P = 0.001) or depression (d = 0.152, 95% CI -0.179 - 0.483: z = 0.901; I(2) = 36.918%) were found between mothers of ART and naturally conceived multiple births. In conclusion, mothers of ART multiple births were significantly more likely to have depression and stress than mothers of ART singletons, but were no different from mothers of naturally conceived multiples.

Posttraumatic stress and posttraumatic stress disorder after termination of pregnancy and reproductive loss: a systematic review.

OBJECTIVE: The aims of this systematic review were to integrate the research on posttraumatic stress (PTS) and posttraumatic stress disorder (PTSD) after termination of pregnancy (TOP), miscarriage, perinatal death, stillbirth, neonatal death, and failed in vitro fertilisation (IVF). METHODS: Electronic databases (AMED, British Nursing Index, CINAHL, MEDLINE, SPORTDiscus, PsycINFO, PubMEd, ScienceDirect) were searched for articles using PRISMA guidelines. RESULTS: Data from 48 studies were included. Quality of the research was generally good. PTS/PTSD has been investigated in TOP and miscarriage more than perinatal loss, stillbirth, and neonatal death. In all reproductive losses and TOPs, the prevalence of PTS was greater than PTSD, both decreased over time, and longer gestational age is associated with higher levels of PTS/PTSD. Women have generally reported more PTS or PTSD than men. Sociodemographic characteristics (e.g., younger age, lower education, and history of previous traumas or mental health problems) and psychsocial factors influence PTS and PTSD after TOP and reproductive loss. CONCLUSIONS: This systematic review is the first to investigate PTS/PTSD after reproductive loss. Patients with advanced pregnancies, a history of previous traumas, mental health problems, and adverse psychosocial profiles should be considered as high risk for developing PTS or PTSD following reproductive loss.

Persian couples' experiences of depressive symptoms and health-related quality of life in the pre- and perinatal period.

OBJECTIVES: The aim of this study was to estimate the effect of changes in depressive symptoms on health-related quality of life (HRQoL) in couples. This was examined before, during and after the pregnancy. In addition, (HRQoL) was examined in relation to the mode of delivery. METHODS: A prospective longitudinal study of 416 couples was conducted in two teaching hospitals in Tehran, Iran. The translated Medical Outcomes Study-Short Form 36 (SF-36) and the Edinburgh Postnatal Depression Scale (EPDS) were used to measure health-related quality of life and depressive symptoms respectively, and are reported here. RESULTS: The results showed that women and their spouses experienced a noticeable decline in their physical HRQoL during and after the pregnancy. However, their mental health functioning showed a significant improvement following conception. The prevalence of depressive symptoms was high but decreased over the course of the pregnancy. Finally, HRQoL was affected by mode of delivery. CONCLUSIONS: The results show that women and their husbands experienced marked changes in perceived health-related functioning and depressive symptoms during and after pregnancy. In addition, the study found that those women who had undergone Cesarean section had higher mental well-being scores. Future research should determine the benefits of extending pre-conception and pre-natal guidelines on the benefits of regular physical activity throughout and after pregnancy in Persian couples.

For your eyes only: bio-behavioural and psycho-social research priorities.

Infertility is experienced as a deeply personal and private condition, which has been investigated across disciplines, from psycho-social to bio-behavioural (van den Akker, 2012). This is undoubtedly, in part, because the interactions between the biological-behavioural axis and psychological-social axis have been linked to aetiological and treatment factors and to the consequences of infertility. Recent data from the Human Fertilization and Embryology Authority (HFEA, 2012) show that medically assisted reproduction (MAR) for infertility is continuing to increase, with 46,000 women in the UK seeking treatment in 2010 alone. Infertility is therefore considered to be a public health concern. However, prevention and ethical treatment require individual and collective responsibility. The currently identified public health concerns are compounded by evidence that genetic factors are linked to infertility, with new generations of children conceived through IVF/ICSI potentially affected by inherited damaged DNA (Bonde et al., 2008) that would otherwise not have found its way into the gene pool of new generations. Since treatment takes place at one point in time, and consideration of the moral rights and wrongs of the consequences of some treatments takes place at another, usually much later on within the social contexts in which they coexist with others, there is a discontinuity between the initial treatment and the future consequences of these treatments. In this paper I propose a simple prevention outcome consequences (POC) model for future comprehensive research priorities with substantial policy and practice implications. The time has come to face the new challenges with all eyes wide open.

Completing the surrogate motherhood process: parental order reporters' attitudes towards surrogacy arrangements, role ambiguity and role conflict.

This study investigated the attitudes of parental order reporters (PORs) towards their work with surrogacy arrangements and their experiences of role conflict and role ambiguity. A questionnaire was used to assess PORs' perceptions of their role in parental order [PO] applications, attitudes towards surrogacy arrangements and the legal process and the influence of role ambiguity or conflict. Questionnaires were distributed to all PORs employed by the Children and Family Court Advisory and Support Service in England. Thirty-three PORs participated (response rate 46%) who, on average, had each completed five PO applications (range 1-40). Positive attitudes towards surrogacy and the child's needs for openness about origins were found. Concerns about the inadequacy of preparation and assessment arrangements, overseas arrangements and non-regulation of surrogacy agencies were evident. PORs with high-role ambiguity were more likely to report less positive attitudes towards the emotional consequence of surrogacy on offspring. High scores on role ambiguity and role conflict were reflected in less positive attitudes towards the parties' preparation towards parenthood. These results have implications for training, policy and practice in this area.

Attitudes and intention to donate oocytes for research.

OBJECTIVE: In 2007, the Human Fertilization and Embryology Authority permitted oocyte donation for research through voluntary donation or within an oocyte share model. The aims of this study were to investigate volunteer (nonpatient) women's attitudes and intentions to donate using components of the Theory of Planned Behavior and their attitudes toward parenthood through structural equation modeling. DESIGN: Questionnaires. SETTING: Online. PATIENT(S): A total of 253 nonpatient women. MAIN OUTCOME MEASURE(S): Attitudes towards oocyte donation for research and reasons for parenthood scale. RESULT(S): Of the 253 respondents, 94 were potential donors, 98 were possible donors, and 61 were non-donors. Most potential donors (68%) reported no preference towards donating their oocytes for research or an infertile couple. Structural equation modeling revealed that age (beta = -.03) and components of the TPB (beta = .16) had a statistically significant direct effect on intentions to donate for research. Attitudes toward parenthood was not linked to intentions to donate for research. CONCLUSION(S): There appears to be a strong altruistic motive along with the theoretical underpinnings of positive attitudes, feeling supported, and accepting the consequences of oocyte donation for research, suggesting these have the potential to inform recruitment practices and tailor clinical services.

eHealth as a challenge to 'expert' power: a focus group study of internet use for health information and management.

OBJECTIVE: To investigate current use of the internet and eHealth amongst adults. DESIGN: Focus groups were conducted to explore participants' attitudes to and reasons for health internet use. MAIN OUTCOME MEASURES: The focus group data were analysed and interpreted using thematic analysis. RESULTS: Three superordinate themes exploring eHealth behaviours were identified: decline in expert authority, pervasiveness of health information on the internet and empowerment. Results showed participants enjoyed the immediate benefits of eHealth information and felt empowered by increased knowledge, but they would be reluctant to lose face-to-face consultations with their GP. CONCLUSIONS: Our findings illustrate changes in patient identity and a decline in expert authority with ramifications for the practitioner-patient relationship and subsequent implications for health management more generally.

Psychological trait and state characteristics, social support and attitudes to the surrogate pregnancy and baby.

BACKGROUND: Personality differences between surrogate mothers (SMs) who gestate and relinquish and intended mothers (IMs) who commission a genetically related or unrelated baby have been unexplored in the UK. Furthermore, the psychological effects of the arrangement have not been determined in a prospective longitudinal study, making this the first quantitative report of psychological functioning in SMs and IMs. METHODS: SMs and IMs (n = 81: 61 surrogate, 20 intended) undergoing genetic or gestational surrogacy (4 groups) were assessed by postal questionnaire during the first, second and third trimesters of pregnancy. Those with a positive outcome were assessed again in the first week, at 6 weeks and 6 months post-delivery of the surrogate baby. RESULTS: There were no significant differences between or within SM and IM groups on personality characteristics. Social support, marital harmony and state anxiety differed significantly (to P < 0.01) between SMs and IMs at different stages of the arrangement. Differences in attitudes towards the pregnancy and the baby were also observed between groups during pregnancy (to P < 0.001), but there was no evidence of post-natal depression amongst the groups studied. CONCLUSIONS: These results are important because they demonstrate psychological effects of the surrogate arrangement are notable and occur over an extended period of time. It also shows that psychological screening and support prior to, during and following surrogacy is indicated.

The socio-cultural and biological meaning of parenthood.

Parenting a child is one of the most universal, common and fundamental assumptions the majority of men and women make from an early age about their future. This common and historic assumption was challenged in modernized Western societies in the 1960s with the opportunities for 'mass control' of reproduction and then again supported in the 1980s with the advance of 'mass enhancement' of reproduction. This study qualitatively assessed the meaning of parenthood of post modern British individuals of different ages, gender, cultural backgrounds and parity. The results of the Interpretative Phenomenological Analyses revealed a number of common ideologies about parenthood, and a number of specific age, gender, parity and cultural differences in how individuals interpret and experience parenthood. These individual differences play a significant part in the quality of life of people gaining or losing the opportunity to parent, as has been discussed 'around the globe' by Frank van Balen and his team, and must be considered in counselling people faced with decisions which challenge their personal and universal assumptions to parent a genetically related child.

Psychosocial aspects of surrogate motherhood.

This review addresses the psychosocial research carried out on surrogacy triads (surrogate mothers, commissioning mothers and offspring) and shows that research has focused on a number of specific issues: attachment and disclosure to surrogate offspring; experiences, characteristics and motivations of surrogate mothers; and changes in profiles of the commissioning/intended mothers. Virtually all studies have used highly selected samples making generalizations difficult. There have been a notable lack of theory, no interventions and only a handful of longitudinal studies or studies comparing different populations. Few studies have specifically questioned the meaning of and need for a family or the influence and impact that professionals, treatment availability and financial factors have on the choices made for surrogate and intended mothers. Societal attitudes have changed somewhat; however, according to public opinion, women giving up babies still fall outside the acceptable remit. Surrogate and intended mothers appear to reconcile their unusual choice through a process of cognitive restructuring, and the success or failure of this cognitive appraisal affects people's willingness to be open and honest about their choices. Normal population surveys, on the contrary, are less accepting of third party reproduction; they have no personal need to reconsider and hence maintain their original normative cognitively consonant state.