Ana Macedo

Communication about colorectal cancer screening in Britain: public preferences for an expert recommendation

Background:Informed decision-making approaches to cancer screening emphasise the importance of decisions being determined by individuals’ own values and preferences. However, advice from a trusted source may also contribute to autonomous decision-making. This study examined preferences regarding a recommendation from the NHS and information provision in the context of colorectal cancer (CRC) screening.Methods:In face-to-face interviews, a population-based sample of adults across Britain (n=1964; age 50–80 years) indicated their preference between: (1) a strong recommendation to participate in CRC screening, (2) a recommendation alongside advice to make an individual decision, and (3) no recommendation but advice to make an individual decision. Other measures included trust in the NHS and preferences for information on benefits and risks.Results:Most respondents (84%) preferred a recommendation (47% strong recommendation, 37% recommendation plus individual decision-making advice), but the majority also wanted full information on risks (77%) and benefits (78%). Men were more in favour of a recommendation than women (86% vs 81%). Trust in the NHS was high overall, but the minority who expressed low trust were less likely to want a recommendation.Conclusion:Most British adults want full information on risks and benefits of screening but they also want a recommendation from an authoritative source. An ‘expert’ view may be an important part of autonomous health decision-making.

Mental health of carers of children affected by HIV attending community-based programmes in South Africa and Malawi

There is strong evidence that both adults and children infected with and affected by HIV have high levels of mental health burden. Yet there have been few studies investigating carer mental health outcomes in the context of HIV in Malawi and South Africa. The objective of this study was to assess the mental health of carers of children affected by HIV as a part of the Child Community Care study, which aims to generate evidence on the effectiveness of community-based organisation (CBO) services to improve child outcomes. In a cross-sectional study, we interviewed 952 carers of children (aged 4–13 years) attending 28 randomly selected CBOs funded by 11 major donors in South Africa and Malawi. Psychological morbidity was measured using the Shona Symptom Questionnaire and suicidal ideation was measured using an item from the Patient Health Questionnaire. Carers were asked about care-seeking for emotional problems. Overall, 28% of carers scored above the clinical cut-off for current psychological morbidity and 12.2% reported suicidal ideation. We used logistic regression models to test factors associated with poor outcomes. Household unemployment, living with a sick family member and perceived lack of support from the community were associated with both psychological morbidity and suicidal ideation in carers. Reported child food insecurity was also associated with psychological morbidity. In addition, carers living in South Africa were more likely to present with psychological morbidity and suicidal ideation than carers in Malawi. Rates of help-seeking for mental health problems were low. Carers of children affected by HIV are at risk for mental health problems as a result of HIV, socio-economic, care-giving and community factors. We call for increased recognition of the potential role of CBOs in providing mental health care and support for families as a means to improve equity in mental health care. Specifically, we highlight the need for increased training and supervision of staff at CBOs for children affected by HIV, and the inclusion of CBOs in broader efforts to improve population mental health outcomes.

The effects of caregiver and household HIV on child development: a community-based longitudinal study of young children.

OBJECTIVE Many studies that document child outcomes in the context of parental HIV - which has been established as a risk factor for child development - focus on older children/adolescents. Studies also concentrate on the status of the primary caregiver, not other household members who might be infected. DESIGN This study examined the effects of caregiver and household HIV on child development (4-13 years) in South Africa and Malawi (2011-2014). METHODS Data were gathered from 989 children and their primary caregivers at baseline and repeated at 12-15 months follow-up (86.5% follow-up rate). Only caregivers of a single child and caregiver/child dyads without missing data were included, providing a sample of 808 dyads for analysis. Children were divided into three groups according to caregiver-reported HIV burden: having an HIV-positive primary caregiver (19.8%), having HIV in the household (14.2%) or no HIV (66%). RESULTS The HIV burden was positively associated with an array of negative child outcomes, often mediated by caregiver depression levels. Family HIV burden at baseline affected child behavioural problems at follow-up indirectly through carer depression (B = 0.02; CI = 0.003, 0.06). Internalizing (B = 0.02; CI = 0.002, 0.05) and externalizing problems at follow-up (B = 0.01; CI = 0.0002, 0.03) were also indirectly affected by family HIV burden through caregiver depression. CONCLUSIONS The data suggest that family HIV can affect child development, emphasizing the important role of depression in the pathway to such an effect. Community-based interventions directed at alleviating parental depression in the presence of HIV may help to interrupt the cycle of family HIV and adverse child outcomes.

Exposure to violence and psychological well-being over time in children affected by HIV/AIDS in South Africa and Malawi

ABSTRACT Many of the risk factors for violence against children are particularly prevalent in families and communities affected by HIV/AIDS. Yet, in sub-Saharan Africa, where HIV rates are high, efforts to prevent or address violence against children and its long-lasting effects are hampered by a lack of evidence. We assessed the relationship between violence exposure and mental health among HIV-affected children attending community-based organisations in South Africa (n = 834) and Malawi (n = 155, total sample n = 989) at baseline and 12–15-month follow-up. Exposure to violence in the home and in the community was high. HIV-negative children who lived with an HIV-positive person experienced most violence overall, followed by HIV-positive children. Children unaffected by HIV experienced least violence (all p < .05). Interpersonal violence in the home predicted child depression (β = 0.17, p < .001), trauma symptoms (β = 0.17, p < .001), lower self-esteem (β = −0.17, p < .001), and internalising and externalising behavioural problems (β = 0.07, p < .05), while exposure to community violence predicted trauma symptoms (β = 0.16, p < .001) and behavioural problems (β = 0.07, p < .05). Harsh physical discipline predicted lower self-esteem (β = −0.18, p < .001) and behavioural problems for children (β = 0.24, p < .001). Exposure to home (OR: 1.89, 95% CI: 1.23–2.85) and community violence predicted risk behaviour (OR: 2.39, 95% CI: 1.57–3.62). Over time, there was a decrease in depressed mood and problem behaviours, and an increase in self-esteem for children experiencing different types of violence at baseline. This may have been due to ongoing participation in the community-based programme. These data highlight the burden of violence in these communities and possibilities for programmes to include violence prevention to improve psychosocial well-being in HIV-affected children.

How effective is help on the doorstep? A longitudinal evaluation of community-based organisation support

Community-based responses have a lengthy history. The ravages of HIV on family functioning has included a widespread community response. Although much funding has been invested in front line community-based organisations (CBO), there was no equal investment in evaluations. This study was set up to compare children aged 9–13 years old, randomly sampled from two South African provinces, who had not received CBO support over time (YC) with a group of similarly aged children who were CBO attenders (CCC). YC baseline refusal rate was 2.5% and retention rate was 97%. CCC baseline refusal rate was 0.7% and retention rate was 86.5%. 1848 children were included—446 CBO attenders compared to 1402 9–13 year olds drawn from a random sample of high-HIV prevalence areas. Data were gathered at baseline and 12–15 months follow-up. Standardised measures recorded demographics, violence and abuse, mental health, social and educational factors. Multivariate regression analyses revealed that children attending CBOs had lower odds of experiencing weekly domestic conflict between adults in their home (OR 0.17; 95% CI 0.09, 0.32), domestic violence (OR 0.22; 95% CI 0.08, 0.62), or abuse (OR 0.11; 95% CI 0.05, 0.25) at follow-up compared to participants without CBO contact. CBO attenders had lower odds of suicidal ideation (OR 0.41; 95% CI 0.18, 0.91), fewer depressive symptoms (B = -0.40; 95% CI -0.62, -0.17), less perceived stigma (B = -0.37; 95% CI -0.57, -0.18), fewer peer problems (B = -1.08; 95% CI -1.29, -0.86) and fewer conduct problems (B = -0.77; 95% CI -0.95, -0.60) at follow-up. In addition, CBO contact was associated with more prosocial behaviours at follow-up (B = 1.40; 95% CI 1.13, 1.67). No associations were observed between CBO contact and parental praise or post-traumatic symptoms. These results suggest that CBO exposure is associated with behavioural and mental health benefits for children over time. More severe psychopathology was not affected by attendance and may need more specialised input.

Interventions to improve psychosocial well-being for children affected by HIV and AIDS: a systematic review

ABSTRACT In addition to its contribution to child mortality, HIV/AIDS has a substantial impact on the psychosocial well-being of children. We conducted a systematic review to identify studies that assess the effectiveness of interventions developed to improve the psychosocial well-being of children affected by HIV/AIDS, published between January 2008 and February 2016. Studies were eligible for the review if they included children under the age of 18 years, who had lost a parent to HIV/AIDS, were living with a parent with HIV/AIDS, or were vulnerable because of other factors and living in communities of high HIV/AIDS prevalence. Studies documented any intervention to improve the psychosocial well-being of children including psychological, psychosocial, medical, and social interventions, with psychological and/or social factors as outcomes. We identified 17 interventions to improve the psychosocial well-being of children affected by HIV/AIDS. Of these, 16 studies took place in 8 different low- and middle-income countries (LMIC), and 6 in Southern and Eastern Africa. Of the total, 15 showed some significant benefits of the intervention, while 2 showed no difference to psychosocial outcomes. The content of interventions, dosage and length of follow-up varied substantially between studies. There were few studies on children under 7 years and several focused mostly on girls. Due to the variability between interventions, it was not possible to make consolidated recommendations for programming based on the results of this review. However, we note that efforts to improve evaluation of interventions to improve the psychosocial well-being of children affected by HIV/AIDS have resulted in a number of new studies which met the inclusion criteria for the review. Most were research projects and not evaluations of existing services. We call for increased partnerships between policymakers, practitioners, and researchers in order to design evaluation studies that can feed into the growing evidence base.

Parenting, the other oldest profession in the world – a cross-sectional study of parenting and child outcomes in South Africa and Malawi

ABSTRACT Parenting quality is important in child development. In the presence of HIV poverty and life stress, parenting may be challenged and child development affected. This study examines cross-sectional associations of situational factors such as poverty, mental health, HIV status, living with a biological parent, and stigma with good parenting and child outcomes (n = 989; age = 4–13 years) within the Child Community Care study (South Africa and Malawi). A parenting measure was created from 10 variables comprising 6 child and 4 parent ratings. These were highly correlated. Total parenting score was generated on a 10-point continuous scale, with a good parenting cut-off then defined as ≥8 out of a possible 10. Five factors were associated with good parenting. Positively associated with good parenting were being the biological parent of the child, parental mental health and dwelling in households with multiple adults. Poverty and stigma were negatively associated with good parenting. Using multiple mediation analysis, a positive direct effect of good parenting was found on child self-esteem, child behaviour and educational risks with a partial mediation via child depression and trauma. These data highlight possible intervention points. Influences on parenting could be seen through being the biological parent, parental mental health, poverty and stigma. In these challenging environments, health, nutrition, mental health, education and treatment to keep parents alive are all clearly identified as potential pathways to ensure child well-being.

Do not forget the boys – gender differences in children living in high HIV-affected communities in South Africa and Malawi in a longitudinal, community-based study

ABSTRACT Gender is an important factor in child development. Especially in sub-Saharan Africa, girls have often been shown to be less likely to access education compared to boys. The consequence of this has been that that programmes addressing child development are often aimed at girls in order to redress gender imbalances. This study examines the effect of gender on the development of children attending community-based organisations in high HIV-affected areas, and explores whether community-based organisation attendance was associated with any changes in gender differences over time. Baseline data from 989 children and 12–15 month follow from 854 (86% response rate) were used to examine gender differences in children from Malawi and South Africa. At baseline, where there were differences by gender, these tended to disadvantage boys. It was found that boys were significantly more often found to be subjected to violence. Boys showed worse performance at school and more behavioural problems than girls. These gender differences persisted from baseline to follow-up. At follow-up, boys self-reported significantly worse average quality of life than girls. Only harsh discipline differed by gender in progression over time: boys experienced a stronger reduction in harsh physical discipline than girls from baseline to follow-up. Since harsh discipline was associated with boys’ worse educational outcomes and behavioural problems, our data cautiously suggests that gender differences could be reduced over time. In conclusion, our data suggests that, perhaps due to the narrow equity approach focusing on provision for girls, boys may be overlooked. As a result, there are some specific experiences where boys are generally worse off. These differences have distinct ramifications for the educational and emotional development of boys. A broader equity approach to child development might be warranted to ensure that the needs of both girls and boys are considered, and that boys are not overlooked.

Continuing cancer screening later in life: attitudes and intentions among older adults in England.

Background: the rise in life expectancy, together with age-related increase in the incidence of most cancers, has led to mounting interest in cancer screening in older people. In England, routine invitations stop and an ‘opt-in’ (individual request) process is available from ages 71 to 76 years for breast and colorectal screening respectively. Little is known about public attitudes towards age-stoppage policy. Objective: this study examined public attitudes to current stoppage policy, information preferences and intentions to request screening beyond the age of routine invitations. Sample: participants (n = 927; age 60–74 years) were recruited as part of a TNS Research International survey and took part in home-based, computer-assisted interviews. Methods: measures included: (i) attitudes towards current stoppage policy, (ii) preference for communications about screening after the end of the routine invitation period and (iii) intention to opt-in. Results: the majority of respondents (78%) did not agree with age-based stoppage policies. Most (83%) wanted a strong recommendation to opt-in after this age, although the number who thought they would follow such a recommendation was much lower (27%). A majority of participants (54%) thought information on screening at older ages should come from their general practitioner (GP). Conclusion: this survey indicates that older people in England wish to continue to be actively invited for cancer screening, although only a minority think that they would ultimately take up the offer. Primary care may play a role in negotiating a shared decision that is based on individual circumstances.

Paid staff or volunteers – does it make a difference? The impact of staffing on child outcomes for children attending community based programmes in South Africa and Malawi

ABSTRACT Background: Globally, and in low and middle income countries (LMIC) specifically, there is a critical shortage of workers. The use of volunteers to support such care delivery systems has been examined, there is scant literature on the impact of volunteers on child outcome in high human immunodeficiency virus (HIV)-affected communities. Objectives: To examine the differential impact of paid versus volunteer workforce in Community Based Organisations (CBOs) providing care to children and families affected by the HIV epidemic in South Africa and Malawi on child outcomes over time. Methods: This study compared child outcomes for 989 consecutive children attending CBOs (0.7% refusal) at baseline and 854 at follow-up (86.3% response rate). Results: Children attending CBOs with paid staff had higher self-esteem, fewer emotional/behavioural problems and less perceived stigma. Likewise, children attending CBOs with paid staff had fewer educational risks, and 20 heightened cognitive performance, and the digit-span memory test. After controlling for outcome at baseline, gender, age, HIV status, and disability, attending a CBO with paid staff remained a significant independent predictor of higher self-esteem scores, less perceived stigma, as well as fewer educational risks and better performance on the drawing test. We found no associations between CBO attendance – paid or volunteer – and children’s depressive and trauma symptoms. Conclusions: Our findings show that in order to most optimally impact on child outcome 30 community-based workers (CBWs) should ideally be paid with trained staff. Specialised input for more severe child difficulties is needed.