Young carers' experiences of services and support: What is helpful and how can support be improved?

Globally, many children and young people provide support to family members who have poor physical or mental health, are disabled, or misuse drugs and alcohol. These young carers are at higher risk of poorer education, employment, health, and social participation outcomes compared to their peers without caring responsibilities. In the UK, awareness of the challenges faced by young carers, and a framework of their legal rights, are relatively well-developed. However, it is unclear how support can most effectively be provided. Taking a qualitative approach we explored experiences and views of young carers (aged 9-25), conducting focus groups or interviews with 133 young carers and 17 parent care recipients. We explored what aspects of services and support are seen as helpful, valued, and acceptable to young people, and what could be improved. A reflexive, thematic analysis was conducted. Valued support came from: young carers groups (including peer support), school-based and mental health support, and support for the care recipient. Helpful aspects of support included someone who listens and understands, and can be trusted not to break confidentiality; involving the young person in information, decision-making and planning (sometimes including regarding the care recipient); and finding and linking to other services. There was a difficult balance for practitioners between being perceived as proactive, persistent or intrusive when offering support to a young carer, but it was important to allow opportunities for young carers, and those they care for, to change their minds about when and whether to access support. Many interactions were perceived as unhelpful or threatening to the family, and there was often not enough of the type of support that was valued. Sharing of positive experiences can be beneficial for both people seeking support and those delivering it; key messages on what is helpful from the perspective of young carers can help support and shape practice approaches.

The link between cognitive health and neighbourhood: perceptions of the public, and of policy-makers, about problems and solutions.

BACKGROUND: Growing evidence indicates associations between neighbourhood-related factors such as pollution, social isolation and physical inactivity, and cognition, that is, our ability to think clearly, learn and remember. The evidence raises the possibility of neighbourhood intervention playing a role in protecting population cognitive health. However, there is little understanding of these associations among the public and policy-makers, what they mean and how they might be acted on. In this study we explored perceptions of the public and policy-makers about influences of neighbourhood factors on brain functioning, and how they should inform policy. METHODS: Qualitative methods were used in three phases; the study ran in parallel with a quantitative study looking at neighbourhood influences on cognition. In phase one, focus groups were conducted with middle-aged (40-69) members of the public to inform statistical modelling. In phase two, similar focus groups were held in four case study areas chosen based on the modelling results. In phase three, interviews with people in public health and policy roles were conducted, including people in the case study sites. RESULTS: Participants described effects on their cognition from community, culture and social interactions, access to green spaces and nature, upkeep and safety of the area, and pollution, traffic and noise. Solutions included better local consultation and involvement in policy and planning, support for community interactions and active and public transport, and education on cognition. There was little awareness, but much interest, from local policy-makers and implementers, about links between cognition and place. Barriers to implementation included lack of: effective engagement with local communities, local funding and joined-up health and neighbourhood policy. CONCLUSIONS: People can perceive impacts of neighbourhoods on brain functioning and suggest ways local areas can be improved to support cognitive health. There is support for the idea of population-level interventions to support cognitive health.

The development and validation of the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia).

BACKGROUND: The recent World Health Organization (WHO) blueprint for dementia research and Lancet Commission on ending stigma and discrimination in mental health has identified a gap around dementia-related measures of stigma and discrimination that can be used in different cultural, language and regional contexts. AIMS: We aimed to characterise experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia. METHOD: We analysed data from 704 people living with dementia who took part in a global survey from 33 different countries and territories. Psychometric properties were examined, including internal consistency and construct validity. RESULTS: A total of 83% of participants reported discrimination in one or more areas of life, and this was similar across WHO Regions. The exploratory factor analysis factor loadings and scree plot supported a unidimensional structure for the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). The instrument demonstrated excellent internal consistency, with most of the construct validity hypotheses being confirmed and qualitative responses demonstrating face validity. CONCLUSIONS: Our analyses suggest that the DISCUS-Dementia performs well with a global sample of people living with dementia. This scale can be integrated into large-scale studies to understand factors associated with stigma and discrimination. It can also provide an opportunity for a structured discussion around stigma and discrimination experiences important to people living with dementia, as well as planning psychosocial services and initiatives to reduce stigma and discrimination.

Counseling With Male Clients: The Case for Relational Resilience Approach.

Although there is no lack of research on masculinity and help-seeking behavior, men continue to seek counseling less often than women. It is crucial we find effective therapeutic approaches to connect and meet men where they are, acknowledging the positive aspects of their masculinity while addressing their needs in the counseling setting. In this conceptual research article, we propose a new approach for counselors to utilize with men seeking counseling, the Relational Resilience Approach, which applies tenets of Relational-Cultural Theory, Positive Psychology, and Shame Resilience Theory.

Secure attachment predicts lower societal cost amongst severely antisocial adolescents.

BACKGROUND: Social and economic costs associated with antisocial behaviour are well-established, but little is known about the potential costs savings/benefits of secure attachment in this high-risk group. We aimed to provide the first test of attachment quality as a distinct predictor of economic costs. METHODS: 111 adolescents (10-17 years of age, M = 15.0, SD = 1.6; 71% male) referred to young offender services due to high levels of antisocial behaviour were included. Costs were measured by detailed service-use interview, and attachment security to mother and father elicited through the Child Attachment Interview. The level of antisocial behaviour and callous-unemotional traits were assessed. Cost predictors were calculated using generalised linear models. RESULTS: Mean 12-months service costs were £5,368 (sd 5,769) per adolescent, with justice system and educational service costs being the main components. After adjusting for covariates, economic costs were predicted by attachment quality to fathers, with a difference of £2,655 per year between those with secure (£3,338) versus insecure attachment (£5,993); significant cost effects were not found for attachment quality to mothers. Higher levels of callous-unemotional traits, lower verbal IQ, higher levels of antisocial behaviour, and older age were also significant cost predictors. CONCLUSIONS: Secure attachment to fathers is a predictor of reduced public cost in adolescents with severe antisocial behaviour. This novel finding for severely antisocial youth extends previous findings in less antisocial children and underscores the public health and policy benefits of good caregiving quality and the value of population-level dissemination of evidence-based interventions that improve caregiving quality.

Pilot evaluation to assess the effectiveness of youth peer community support via the Kooth online mental wellbeing website.

BACKGROUND: Mental health problems among young people are of growing concern globally. UK adolescent mental health services are increasingly restricted to those with the most severe needs. Many young people turn to the internet for advice and support, but little is known about the effectiveness, and potential harms, of online support. Kooth is a widely-used, anonymised and moderated online platform offering access to professional and peer support. This pilot evaluation sought to assess changes in the wellbeing and mental health of Kooth users, and changes in their use of formal services, over one month. We explored how community aspects of the site were used, and we considered the economic implications for commissioners making Kooth available to young people. METHODS: We surveyed young people when they first accessed Kooth and again one month later (n = 302). Respondents completed measures of mental health and wellbeing, including family relationships and pandemic-related anxiety, and reported on their use of services and, at follow-up, their perceptions of whether and how they had benefitted. We carried out qualitative interviews with ten participants, exploring perceptions of the Kooth community and its impact. RESULTS: We found improvements across nearly all measures, including reductions in psychological distress, suicidal ideation and loneliness. Subsample analyses suggested similar benefits for those who used only the community/peer parts of Kooth as for those who engaged with Kooth's counsellors. Participants reported learning from peers' suggestions and experiences, described as different from the advice given by professionals. Helping others gave users a sense of purpose; participants learnt self-help strategies and became more confident in social interactions. Service use and opinion data suggested Kooth experiences may help users make more appropriate and effective use of formal services. CONCLUSION: This pilot evaluation suggests that Kooth is likely to be a cost-effective way of providing preventative support to young people with concerns about their mental health, with possible benefits across a range of domains which could be investigated in a future controlled trial.

Mobilising social support to improve mental health for children and adolescents: A systematic review using principles of realist synthesis.

Social support is a well-recognised protective factor for children's mental health. Whilst many interventions exist that seek to mobilise social support to improve children's mental health, not much is known about how to best do this. We sought to generate knowledge about the ways in which social support can be mobilised to improve children's mental health. We conducted a systematic review, which followed the principles of a realist synthesis. The following databases were searched: PubMed, CINAHL, Ovid MEDLINE, PsychINFO, EMBASE, Child and Adolescent Studies, EconLit and SocINDEX. Studies were included if the age of participants was between 0 and 18 years and they evaluated or described programme theories of interventions that sought to improve children's mental health by mobilising social support. Relevance and quality of studies were assessed, and data were extracted and analysed narratively. Thirty-three articles were included. Studies varied substantially with regard to the detail in which they described the processes of mobilising social support and expected mechanisms to improve children's mental health. Those that provided this detail showed the following: Intervention components included explaining the benefits of social support and relationships to families and modelling friendly relationships to improve social skills. Pathways to improved outcomes reflected bi-directional and dynamic relationships between social support and mental health, and complex and long-term processes of establishing relationship qualities such as trust and reciprocity. Parents' ability to mobilise social support for themselves and on behalf of children was assumed to impact on their children's mental health, and (future) ability to mobilise social support. Although interventions were considered affordable, some required substantial human and financial resources from existing systems. Mobilising social support for vulnerable children can be a complex process that requires careful planning, and theory-informed evaluations can have an important role in increasing knowledge about how to best address social support and loneliness in children.

The high cost of unpaid care by young people:health and economic impacts of providing unpaid care.

BACKGROUND: Many countries worldwide have experienced reductions in provision of formal long-term care services amidst rising need for care. Provision of unpaid care, meanwhile, has grown. This includes care provided by young people. Care responsibilities can affect a young people's health, education and employment. We aimed to investigate the impacts on the employment and health of young people aged 16 to 25 of providing care, and the associated individual and public expenditure costs. METHODS: We examined employment, earnings and health impacts for individuals, and a range of economic impacts for society, focusing on young people aged 16 to 25 providing unpaid care in England. We applied regression analysis to data from three waves of the UK Household Longitudinal Study (2013/2015, 2014/2016, and 2015/2017) to compare employment and health outcomes among carers and non-carers, and two-part Generalised Linear Models to estimate costs. To address potential selection bias, we then used propensity score matching methods to explore outcomes for a matched sub-sample of young adult carers who started providing care at baseline (2014/16). RESULTS: Young people aged 16 to 25 who provided care at baseline (2014/16) were less likely to be in employment, had lower earnings from paid employment, and had poorer mental and physical health at follow-up (2015/17) compared to young people of the same age who were not providing care at baseline.. There were substantial costs to the state of young adults providing care from lower tax revenue, welfare benefit payments, and health service use. In aggregate, these costs amounted to £1048 million annually in 2017. CONCLUSIONS: High individual impacts and costs to the state of providing unpaid care, and the potential of such impacts to compound existing inequalities, have many implications for policy and practice in the health, social care, employment and welfare benefits sectors. In particular, the findings reinforce the case for reducing the need for young people to provide unpaid care, for example through better provision of formal care services, and to provide ongoing support for those young people who do provide care. As impacts are seen in a number of domains, support needs to be multidimensional.

Preventing at-risk children from developing antisocial and criminal behaviour: a longitudinal study examining the role of parenting, community and societal factors in middle childhood.

BACKGROUND: Many childhood risk factors are known to be associated with children's future antisocial and criminal behaviour, including children's conduct disorders and family difficulties such as parental substance abuse. Some families are involved with many different services but little is known about what middle childhood factors moderate the risk of poor outcomes. This paper reports the quantitative component of a mixed methods study investigating what factors can be addressed to help families improve children's outcomes in the longer term. The paper examines six hypotheses, which emerged from a qualitative longitudinal study of the service experiences of eleven vulnerable families followed over five years. The hypotheses concern factors which could be targeted by interventions, services and policy to help reduce children's behaviour problems in the longer term. METHODS: The hypotheses are investigated using a sample of over one thousand children from the Avon Longitudinal Study of Parents and Children (ALSPAC). Multiple logistic regression examines associations between potentially-moderating factors (at ages 5-10) and antisocial and criminal behaviour (at ages 16-21) for children with behaviour problems at baseline. RESULTS: ALSPAC analyses support several hypotheses, suggesting that the likelihood of future antisocial and criminal behaviour is reduced in the presence of the following factors: reduction in maternal hostility towards the child (between ages 4 and 8), reduction in maternal depression (between the postnatal period and when children are age 10), mothers' positive view of their neighbourhood (age 5) and lack of difficulty paying the rent (age 7). The evidence was less clear regarding the role of social support (age 6) and mothers' employment choices (age 7). CONCLUSION: The findings suggest, in conjunction with findings from the separate qualitative analysis, that improved environments around the child and family during middle childhood could have long-term benefits in reducing antisocial and criminal behaviour.

Investigating changes in use of services by high-need families following the Helping Families Programme, an innovative parenting intervention for children with severe and persistent conduct problems.

BACKGROUND: Interventions aimed at high-need families have difficulty demonstrating short-term impact on child behaviour. Measuring impact on use of services could provide short-term indication of longer term benefits. METHOD: During a feasibility pilot study we collected data on service use and attitudes to services from a small sample of parents from high-need families, before and after receiving the Helping Families Programme. RESULTS: Respondents provided a range of opinions on a variety of social and community services received. CONCLUSIONS: The study demonstrates the potential of short-term changes in enhanced service use data for building hypotheses of longer term change.

Costs and longer-term savings of parenting programmes for the prevention of persistent conduct disorder: a modelling study.

BACKGROUND: Conduct disorders are the most common psychiatric disorders in children and may persist into adulthood in about 50% of cases. The costs to society are high and impact many public sector agencies. Parenting programmes have been shown to positively affect child behaviour, but little is known about their potential long-term cost-effectiveness. We therefore estimate the costs of and longer-term savings from evidence-based parenting programmes for the prevention of persistent conduct disorder. METHODS: A decision-analytic Markov model compares two scenarios: 1) a 5-year old with clinical conduct disorder receives an evidence-based parenting programme; 2) the same 5-year old does not receive the programme. Cost-savings analysis is performed by comparing the probability that conduct disorder persists over time in each scenario, adopting both a public sector and a societal perspective. If the intervention is successful in reducing persistent conduct disorder, cost savings may arise from reduced use of health services, education support, social care, voluntary agencies and from crimes averted. RESULTS: Results strongly suggest that parenting programmes reduce the chance that conduct disorder persists into adulthood and are cost-saving to the public sector within 5-8 years under base case conditions. Total savings to society over 25 years are estimated at £16,435 per family, which compares with an intervention cost in the range of £952-£2,078 (2008/09 prices). CONCLUSIONS: Effective implementation of evidence-based parenting programmes is likely to yield cost savings to the public sector and society. More research is needed to address evidence gaps regarding the current level of provision, longer-term effectiveness and questions of implementation, engagement and equity.

Children's play narratives: what they tell us about lesbian-mother families.

Play narratives can offer a unique insight into the child's internal world. This study compared the play narratives of children in 38 lesbian-mother families; 73 two-parent, heterosexual-mother families; and 58 single-heterosexual-mother families recruited from a general population sample. Findings indicated positive mother-child relationships and well-adjusted children. Girls' narratives showed more affection than boys' and were more strongly associated with mothers' interview measures, suggesting that girls' play narratives reveal a more accurate picture of family relationships.

Children with lesbian parents: a community study.

Existing research on children with lesbian parents is limited by reliance on volunteer or convenience samples. The present study examined the quality of parent-child relationships and the socioemotional and gender development of a community sample of 7-year-old children with lesbian parents. Families were recruited through the Avon Longitudinal Study of Parents and Children, a geographic population study of 14,000 mothers and their children. Thirty-nine lesbian-mother families, 74 two-parent heterosexual families, and 60 families headed by single heterosexual mothers were compared on standardized interview and questionnaire measures administered to mothers, co-mothers/fathers, children, and teachers. Findings are in line with those of earlier investigations showing positive mother-child relationships and well-adjusted children.

Prenatal stress and gender role behavior in girls and boys: a longitudinal, population study.

Prenatal stress influences neural and behavioral sexual differentiation in rodents. Male offspring of stressed pregnancies show reduced masculine-typical characteristics and increased feminine-typical characteristics, whereas female offspring show the opposite pattern, reduced feminine-typical and increased masculine-typical characteristics. These outcomes resemble those seen following manipulations of gonadal hormones and are thought to occur because stress influences these hormones during critical periods of development. Research on prenatal stress and human sexual differentiation has produced inconsistent results, perhaps because studies have used small samples and assessed prenatal stress retrospectively. We related maternal self-reports of prenatal stress to childhood gender role behavior in a prospective, population study of 13,998 pregnancies resulting in 14,138 offspring. Neither stress reported during the first 18 weeks of pregnancy nor stress reported from week 19 of pregnancy to week 8 postnatal related to gender role behavior in male offspring at the age of 42 months. In female offspring, maternal reports of stress during both periods showed only small correlations with masculine-typical behavior. Although this relationship remained significant when other factors that related to stress were controlled, these other factors made larger contributions to girls' gender role behavior than did prenatal stress. In addition, in both boys and girls, older male or female siblings, parental adherence to traditional sex roles, maternal use of tobacco or alcohol during pregnancy, and maternal education all related significantly to gender role behavior. Our results suggest that prenatal stress does not influence the development of gender role behavior in boys and appears to have relatively little, if any, influence on gender role behavior in girls.