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Intellectual disability has a complex effect on the well-being of affected individuals and their families. Previous research has identified multiple risk and protective factors for parental mental health, including socioeconomic circumstances and child behaviour.
This study explored whether genetic cause of childhood intellectual disability contributes to parental well-being.
Children from across the UK with intellectual disability due to diverse genetic causes were recruited to the IMAGINE-ID study. Primary carers completed the Development and Well-being Assessment, including a measure of parental distress (Everyday Feeling Questionnaire). Genetic diagnoses were broadly categorised into aneuploidy, chromosomal rearrangements, copy number variants (CNVs) and single nucleotide variants.
Compared with the UK general population, IMAGINE-ID parents (n = 888) reported significantly elevated emotional distress (Cohen's d = 0.546). Within-sample variation was related to recent life events and the perceived impact of children's difficulties. Impact was predicted by child age, physical disability, autistic characteristics and other behavioural difficulties. Genetic diagnosis also predicted impact, indirectly influencing parental well-being. Specifically, CNVs were associated with higher impact, not explained by CNV inheritance, neighbourhood deprivation or family structure.
The mental health of parents caring for a child with intellectual disability is influenced by child and family factors, converging on parental appraisal of impact. We found that genetic aetiologies, broadly categorised, also influence impact and thereby family risks. Recognition of these risk factors could improve access to support for parents, reduce their long-term mental health needs and improve well-being of individuals with intellectual disability.
To identify discrete approaches to specialist healthcare support for older care home residents in the UK and to estimate their prevalence.
Internationally, a range of new initiatives are emerging to meet the multiple and complex healthcare needs of care home residents. However, little is known about their relative effectiveness and, given their heterogeneity, a classification scheme is required to enable research staff to explore this.
A UK survey collected information on the funding, age, coverage, aims, staffing and activities of 64 specialist care home support services. Latent class analysis (LCA) was used to allocate the sample into subgroups with similar characteristics.
Three classes were identified. Class 1 (55% of sample) contained services with a high probability of providing scheduled input (regular preplanned visits) and support for all residents and a moderate probability of undertaking medication management, but a low probability of training care home staff (‘predominantly direct care’). Class 2 (23% of sample) had a moderate/high probability of providing scheduled input, support for all residents, medication management and training (‘direct and indirect care’). Class 3 (22% of sample) had a low probability of providing scheduled input, support for all residents and medication management, but a high probability of providing training for care home staff (‘predominantly indirect care’). Consultants were more likely to be members of services in Class 1 than Class 2, and Class 2 than Class 3.
LCA offers a promising approach to the creation of a taxonomy of specialist care home support services. The skills and knowledge required by healthcare staff vary between classes, raising important issues for service design. The proposed classification can be used to explore the extent to which different organisational forms are associated with better resident, process and service outcomes.
Adverse effects of early exposure to parental mood disturbance on child adjustment have been documented for both mothers and fathers, but are rarely examined in tandem. Other under-researched questions include effects of changes over time in parental well-being, similarities and contrasts between effects of parental mood disturbance on children's internalizing versus externalizing problems, and potential mediating effects of couple relationship quality. The current study involved 438 couples who reported symptoms of depression and anxiety at each of four time points (i.e., last trimester of pregnancy and 4, 14, and 24 months postbirth). Mothers and fathers also rated their couple relationship quality and their child's socioemotional adjustment at 14 months, as well as internalizing and externalizing problems at 24 months. Latent growth models indicated direct effects of (a) maternal prenatal well-being on externalizing problems at 24 months, and (b) paternal prenatal well-being on socioemotional problems at 14 months. Internalizing symptoms at 24 months showed only indirect associations with parental well-being, with couple relationship quality playing a mediating role. Our findings highlight the importance of prenatal exposure to parental mood disturbance and demonstrate that, even in a low-risk sample, poor couple relationship quality explains the intergenerational stability of internalizing problems.
A new Health Technology Assessment (HTA) agency, Health Technology Wales (HTW), has been established to consider the identification, appraisal, and adoption of non-medicine health technologies. This includes, for example, medical devices, surgical procedures and diagnostics. HTW recognizes the importance of effective patient and public involvement (PPI) and is building smart capabilities.
HTW consulted with external organizations to identify the first steps toward effective PPI. Public partners were recruited as a priority before working together on a PPI strategy. Building smart capabilities is key to establishing effective PPI and future-proofing. HTW established a PPI Standing Group to inform HTW throughout its work, including the development of processes and procedures.
Knowledge and resources have been shared and future collaborations identified, including events to encourage new topics from patients and the public. The HTW PPI lead has become a member of key PPI groups, locally and internationally. HTW has recruited public partners who are actively contributing as full members of the Assessment Group and the Appraisal Panel; two members on each Committee. The PPI Standing Group has been established. They have provided advice and co-produced PPI tools for piloting.
The PPI Standing Group concluded that PPI methods and approaches should be tailored for each project based on best practice, and should be piloted to allow them to evolve based on impact evaluation. A PPI strategy or framework would be more useful at a later stage. HTW is committed to identifying and following best practice. Future-proofing and building smart capability will be key to ensuring that HTW develops effective PPI that can be dynamic and responsive to the evolving PPI and HTA landscapes.
Research suggests that a significant minority of hospital in-patients could be more appropriately supported in the community if enhanced services were available. However, little is known about these individuals or the services they require.
To identify which individuals require what services, at what cost.
A ‘balance of care’ (BoC) study was undertaken in northern England. Drawing on routine electronic data about 315 admissions categorised into patient groups, frontline practitioners identified patients whose needs could be met in alternative settings and specified the services they required, using a modified nominal group approach. Costing employed a public-sector approach.
Community care was deemed appropriate for approximately a quarter of admissions including people with mild-moderate depression, an eating disorder or personality disorder, and some people with schizophrenia. Proposed community alternatives drew heavily on carer support services, community mental health teams and consultants, and there was widespread consensus on the need to increase out-of-hours community services. The costs of the proposed community care were relatively modest compared with hospital admission. On average social care costs increased by approximately £60 per week, but total costs fell by £1626 per week.
The findings raise strategic issues for both national policymakers and local service planners. Patients who could be managed at home can be characterised by diagnosis. Although potential financial savings were identified, the reported cost differences do not directly equate to cost savings. It is not clear whether in-patient beds could be reduced. However, existing beds could be more efficiently used.
This article presents an analysis of challenges and considerations when developing digital mental health innovations. Recommendations include collaborative working between clinicians, researchers, industry and service users in order to successfully navigate challenges and to ensure e-therapies are engaging, acceptable, evidence based, scalable and sustainable.
A characteristic pattern of solar hard X-ray emission, first identified in SOL1969-03-30 by Frost & Dennis (1971), turns out to have a close association with the prolonged high-energy gamma-ray emission originally observed by Forrest et al. (1985). This identification has become clear via the observations of long-duration γ-ray flares by the Fermi/LAT experiment, for example in the event SOL2014-09-01. The distinctive features of these events include flat hard X-ray spectra extending well above 100 keV, a characteristic pattern of time development, low-frequency gyrosynchrotron peaks, CME association, and gamma-rays identifiable with pion decay originating in GeV ions. The identification of these events with otherwise known solar structures nevertheless remains elusive, in spite of the wealth of EUV imagery available from SDO/AIA. The quandary is that these events have a clear association with SEPs in the high corona, and yet the gamma-ray production implicates the photosphere itself, despite the strong mirror force that should focus the particles away from the Sun We discuss the morphology of these phenomena and propose a solution to this problem.
Tschumi’s experimental use of the literary text as part of design briefs for students at the Architectural Association in the late 1970s formed the basis for a preoccupation with what he termed the disjunction between space and the events that happen within it. For Coates, the literary briefs triggered a fixation with what was happening in space – but instead of focusing on its conceptual interaction with events, he moved towards the dramatisation of architecture. Grounded in the architects' shared teaching at the AA, the article discusses the early briefs and projects that shaped the directions they would each take.
Research on paranoia in adults suggests a spectrum of severity, but this
dimensional approach has yet to be applied to children or to groups from
To investigate the structure, prevalence and correlates of mistrust in
children living in the UK and Hong Kong.
Children aged 8–14 years from the UK (n = 1086) and Hong
Kong (n = 1412) completed a newly developed mistrust
questionnaire as well as standard questionnaire measures of anxiety,
self-esteem, aggression and callous–unemotional traits.
Confirmatory factor analysis of the UK data supported a three-factor
model – mistrust at home, mistrust at school and general mistrust – with
a clear positive skew in the data: just 3.4%, 8.5% and 4.1% of the
children endorsed at least half of the mistrust items for home, school
and general subscales respectively. These findings were replicated in
Hong Kong. Moreover, compared with their peers, ‘mistrustful’ children
(in both countries) reported elevated rates of anxiety, low self-esteem,
aggression and callous–unemotional traits.
Mistrust may exist as a quantitative trait in children, which, as in
adults, is associated with elevated risks of internalising and
Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia.
This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically.
People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare.
Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.
Background: Childhood worry is common, and yet little is known about why some children develop pathological worry and others do not. Two theories of adult worry that are particularly relevant to children are Davey's problem-solving model in which perseverative worry occurs as a result of thwarted problem-solving attempts, and Wells’ metacognitive model, in which positive and negative beliefs about worry interact to produce pathological worry. Aims: The present study aimed to test hypotheses that levels of worry in young children are associated with poor or avoidant solution generation for social problems, and poor problem-solving confidence. It also aimed to explore beliefs about worry in this age group, and to examine their relationships with worry, anxiety and age. Method: Fifty-seven young children (6–10 years) responded to open ended questions about social problem-solving situations and beliefs about worry, and completed measures of worry, anxiety and problem-solving confidence. Results: Children with higher levels of worry and anxiety reported using more avoidant solutions in social problem situations and children's low confidence in problem solving was associated with high levels of worry. Children as young as 6 years old reported both positive and negative beliefs about worry, but neither were associated with age, gender, or level of anxiety or worry. Conclusions: Results indicate similarities between adults and children in the relationships between problem-solving variables and worry, but not in relationships between beliefs about worry and worry. This may be due to developmental factors, or may be the result of measurement issues.
To evaluate a mentoring circle workforce development intervention among a group of public health nutrition novices.
The mentoring circle intervention focused on facilitating practice-based public health nutrition competence development and supporting reorientation of practice from clinical services to preventive services. A retrospective post-intervention qualitative semi-structured interview was used to explore the experiences of those participating in the mentoring circle and to make evaluative judgements about intervention attributes and effectiveness.
Thirty-two novice public health nutrition practitioners employed in the state public health system.
Key evaluative theme categories relating to the mentoring circle intervention were identified, including the structure and function of the group, the utility of using advanced-level competency items to guide planning, having a safe and supportive environment for learning and the utility of learning via mentoring and on-the-job experiences. These qualitative evaluation data identify the attributes of the mentoring circle intervention contributing to intervention effectiveness.
This qualitative evaluation indicates that mentoring circles can be an effective workforce capacity-building intervention, particularly in novice workforces characterised by professional isolation and split function roles.