A longitudinal study of grieving in family caregivers of people with dementia

A longitudinal study of grieving in family caregivers of people with dementia Recent research into dementia has identified the long term impact that the role of care giving for a relative with dementia has on family members This is largely due to the cognitive decline that characterises dementia and the losses that can be directly attributed to this. These losses include loss of memories, relationships and intimacy, and are often ambiguous so that the grief that accompanies them is commonly not recognised or acknowledged. The role and impact of pre-death or anticipatory grief has not previously been widely considered as a factor influencing health and well-being of family caregivers. Studies of grief in caregivers of a relative with dementia have concluded that grief is one of the greatest barriers to care giving and is a primary determinant of caregiver well-being. The accumulation of losses, in conjunction with experiences unique to dementia care giving, place family caregivers at risk of complicated grief. This occurs when integration of the death does not take place following bereavement and has been associated with a range of negative health outcomes. The aim of this research was to determine the influence of grief, in addition to other factors representing both positive and negative aspects of the role, on the health related quality of life of family caregivers of people with dementia, prior to and following the death of their relative with dementia. An exploratory research project underpinned by a conceptual framework of caregivers’ adaptation in the context of subjective appraisal of the strains and gains in their role was undertaken. The research comprised three studies. Study 1 was a scoping study that involved a series of semi-structured interviews with thirteen participants who were family caregivers of people with severe dementia or whose relative with dementia had died in the previous twelve months. The results of this study in conjunction with factors identified in the literature informed data collection for the further studies. Study 2 was a cross sectional survey of fifty caregivers recruited when their relative was in the moderate to severe stage of dementia. This study provided the baseline data for Study 3, a prospective cohort follow up study. Study 3 consisted of seventeen participants followed up at two time points after the death of their relative with dementia: six weeks and then six months following the death of the relative with dementia. The scoping study indicated that differences in appraisal of the care giving role and encounters with health professionals were related to levels of grief of caregivers prior to and following the death of the relative with dementia. This was supported in the baseline and follow up studies. In the baseline study, after adjusting for all variables in multivariate regression models, subjective appraisal of burden was found to make a significant contribution (p<.05) to mental health related quality of life. The two dependent variables, anticipatory grief and mental health related quality of life, were significantly (p<.01) correlated at a bivariate level. In the follow up study, linear mixed modelling and multiple regression analysis of data found that subjective appraisal of burden and resilience were significantly associated (p<.05 and p<.01, respectively) with mental health related quality of life over time. In addition, bereavement and complicated grief were significantly associated (p<.05) with mental health following the death of the relative. In this study social support and satisfaction with end of life care were found to be statistically associated (p<.05) with physical health related quality of life over time. The strong relationship between grief of caregivers and their health related quality of life over the entire care giving trajectory and period following the death of their relative highlights the urgent need for further research and interventions in this area. Overall results indicate that addressing the risk and protective factors including subjective appraisal of their care giving role, resilience, social support and satisfaction with end of life care of their relative, has the potential to both ameliorate negative health outcomes and to promote improved health for these caregivers. This research provides important information for development of targeted and appropriate interventions that aim to promote resilience and reduce the personal burden on caregivers of people with dementia.

PP39 Mental health outcomes of abortion for young women aged 18-23 years, findings from an Australian longitudinal birth cohort study

Background: Few longitudinal studies have examined the mental health outcomes of women after abortion and the results are controversial. Despite falling birth rates, teenage pregnancies remain high and over half (53%) of teenage and a third (36%) of young adult (20_24 years) pregnancies are aborted. Recent findings from a NewZealand longitudinal birth cohort linked abortion and subsequent psychiatric disorders in young women. Limited Australian data is available examining this association. Methods: Data were taken from the Mater-University Study of Pregnancy (MUSP). Running since 1981, this is a prospective birth cohort study of 7223 mothers and children. At the 21-year follow-up 3775 (52.3% of the original cohort) participants were surveyed, of these 1132 young women had complete data on pregnancy outcomes and psychiatric diagnoses from a structured interview. Binary logistic regression examined the association between five lifetime psychiatric disorders (nicotine, alcohol, cannabis, affective and anxiety disorders) and ever having an abortion or birth. Analyses adjusted for age, concurrent and maternal sociodemographic factors, and factors related to adolescent behaviour, previous mental health and family functioning. Results: A quarter of the young women (n_261) reported at least one pregnancy and 32.6% had an abortion. Abortion was significantly associated with age-adjusted OR for all the lifetime disorders. After full adjustment abortion remained significantly associated with nicotine (OR_2.1, 1.2_3.6) and alcohol disorders (OR_2.0, 1.3_3.3). Conclusion: The findings suggest that abortion in young women is independently associated with an increased risk of nicotine and alcohol disorders.

Domestic violence and family law : recognition and appropriation

The battered women’s movement in the United States contributed to a sweeping change in the recognition of men’s violence against female intimate partners. Naming the problem and arguing in favour of its identification as a serious problem meriting a collective response were key aspects of this effort. Criminal and civil laws have been written and revised in an effort to answer calls to take such violence seriously. Scholars have devoted significant attention to the consequences of this reframing of violence, especially around the unintended outcomes of the incorporation of domestic violence into criminal justice regimes. Family law, however, has remained largely unexamined by criminologists. This paper calls for criminological attention to family law responses to domestic violence and provides directions for future research.

Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking

PURPOSE Every health care sector including hospice/palliative care needs to systematically improve services using patient-defined outcomes. Data from the national Australian Palliative Care Outcomes Collaboration aims to define whether hospice/palliative care patients' outcomes and the consistency of these outcomes have improved in the last 3 years. METHODS Data were analysed by clinical phase (stable, unstable, deteriorating, terminal). Patient-level data included the Symptom Assessment Scale and the Palliative Care Problem Severity Score. Nationally collected point-of-care data were anchored for the period July-December 2008 and subsequently compared to this baseline in six 6-month reporting cycles for all services that submitted data in every time period (n = 30) using individual longitudinal multi-level random coefficient models. RESULTS Data were analysed for 19,747 patients (46 % female; 85 % cancer; 27,928 episodes of care; 65,463 phases). There were significant improvements across all domains (symptom control, family care, psychological and spiritual care) except pain. Simultaneously, the interquartile ranges decreased, jointly indicating that better and more consistent patient outcomes were being achieved. CONCLUSION These are the first national hospice/palliative care symptom control performance data to demonstrate improvements in clinical outcomes at a service level as a result of routine data collection and systematic feedback.

Family structure and change through middle childhood : the impact on children's adjustment and achievement

This research project investigated the influence of family transitions on children's adjustment and school achievement across the primary school years, in single-parent, re-partnered and two-parent families. The quality of children's relationships with parents, teachers and peers were predictive of more positive outcomes, regardless of family structure. The research analysed data from the Kindergarten Cohort participating in Growing Up in Australia: The Longitudinal Study of Australian Children. Across the age span of the children studied, cumulative effects of any residential or school changes, or decreased family income, associated with family transitions, were more likely to predict poorer child outcomes in behaviour adjustment and school achievement.

“I would have lost the respect of my friends and family if they knew I had bent the road rules” : parents, peers, and the perilous behaviour of young drivers

Young novice drivers are at considerable risk of injury on the road. Their behaviour appears vulnerable to the social influence of their parents and friends. The nature and mechanisms of parent and peer influence on young novice driver (16–25 years) behaviour was explored via small group interviews (n = 21) and two surveys (n1 = 1170, n2 = 390) to inform more effective young driver countermeasures. Parental and peer influence occurred in preLicence, Learner, and Provisional (intermediate) periods. Pre-Licence and unsupervised Learner drivers reported their parents were less likely to punish risky driving (e.g., speeding). These drivers were more likely to imitate their parents and reported their parents were also risky drivers. Young novice drivers who experienced or expected social punishments from peers, including ‘being told off’ for risky driving, reported less riskiness. Conversely drivers who experienced or expected social rewards such as being ‘cheered on’ by friends – who were also more risky drivers – reported more risky driving including crashes and offences. Interventions enhancing positive influence and curtailing negative influence may improve road safety outcomes not only for young novice drivers, but for all persons who share the road with them. Parent-specific interventions warrant further development and evaluation including: modelling safe driving behaviour by parents; active monitoring of driving during novice licensure; and sharing the family vehicle during the intermediate phase. Peer-targeted interventions including modelling of safe driving behaviour and attitudes; minimisation of social reinforcement and promotion of social sanctions for risky driving also need further development and evaluation.

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia

Objectives: To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. Method: A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. Results: The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. Discussion: This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs.

Comparisons between youth of a parent with MS and a control group on adjustment, caregiving, attachment and family functioning

Few studies have examined the effects of parental MS on children, and those that have suffered from numerous methodological weaknesses, some of which are addressed in this study. This study investigated the effects of parental MS on children by comparing youth of a parent with MS to youth who have no family member with a serious health condition on adjustment outcomes, caregiving, attachment and family functioning. A questionnaire survey methodology was used. Measures included youth somatisation, health, pro-social behaviour, behavioural-social difficulties, caregiving, attachment and family functioning. A total of 126 youth of a parent with MS were recruited from MS Societies in Australia and, were matched one-to-one with youth who had no family member with a health condition drawn from a large community sample. Comparisons showed that youth of a parent with MS did not differ on any of the outcomes except for peer relationship problems: adolescent youth of a parent with MS reported lower peer relationship problems than control adolescents. Overall, results did not support prior research findings suggesting adverse impacts of parental MS on youth.

Domestic violence and family law : criminological concerns

The battered women’s movement in the United States contributed to a sweeping change in the recognition of men’s violence against female intimate partners. Naming the problem and arguing in favor if its identification as a serious problem meriting a collective response were key aspects of this effort. Criminal and civil laws have been written and revised in an effort to answer calls to take such violence seriously. Scholars have devoted significant attention to the consequences of this reframing of violence, especially around the unintended outcomes of the incorporation of domestic violence into criminal justice regimes. Family law, however, has remained largely unexamined by criminologists. This paper calls for criminological attention to family law responses to domestic violence and provides directions for future research.

A study of outcomes post-return to Australia under the Hague Child Abduction Convention for abducting primary-carer mothers and their children

This article reports the findings of an empirical study of outcomes experienced by abducting primary-carer mothers and their children post-return to Australia under the Hague Child Abduction Convention. The study specifically focused on legal and factual outcomes post-return to Australia as the child's habitual residence. The study contributes an original critique of the Convention's operation by examining the collective operation of Convention return proceedings and Pt VII proceedings under the Family Law Act 1975 (Cth) post-return. Convention return proceedings, and the resolution of the substantive parenting dispute post-return to Australia, are not distinct stages operating in isolation. Viewing them as such is a purely theoretical exercise divorced from the reality of the lives of transnational families. Arguably, a better measure of the Convention's success is the outcomes it produces as part of the entire system designed to address the contemporary problem of international parental child abduction. When a child is returned to Australia this system includes the operation of Australian family law.

Family-based programmes for preventing smoking by children and adolescents (Review)

Background There is evidence that family and friends influence children's decisions to smoke. Objectives To assess the effectiveness of interventions to help families stop children starting smoking. Search methods We searched 14 electronic bibliographic databases, including the Cochrane Tobacco Addiction Group specialized register, MEDLINE, EMBASE, PsycINFO, CINAHL unpublished material, and key articles' reference lists. We performed free-text internet searches and targeted searches of appropriate websites, and hand-searched key journals not available electronically. We consulted authors and experts in the field. The most recent search was 3 April 2014. There were no date or language limitations. Selection criteria Randomised controlled trials (RCTs) of interventions with children (aged 5-12) or adolescents (aged 13-18) and families to deter tobacco use. The primary outcome was the effect of the intervention on the smoking status of children who reported no use of tobacco at baseline. Included trials had to report outcomes measured at least six months from the start of the intervention. Data collection and analysis We reviewed all potentially relevant citations and retrieved the full text to determine whether the study was an RCT and matched our inclusion criteria. Two authors independently extracted study data for each RCT and assessed them for risk of bias. We pooled risk ratios using a Mantel-Haenszel fixed effect model. Main results Twenty-seven RCTs were included. The interventions were very heterogeneous in the components of the family intervention, the other risk behaviours targeted alongside tobacco, the age of children at baseline and the length of follow-up. Two interventions were tested by two RCTs, one was tested by three RCTs and the remaining 20 distinct interventions were tested only by one RCT. Twenty-three interventions were tested in the USA, two in Europe, one in Australia and one in India. The control conditions fell into two main groups: no intervention or usual care; or school-based interventions provided to all participants. These two groups of studies were considered separately. Most studies had a judgement of 'unclear' for at least one risk of bias criteria, so the quality of evidence was downgraded to moderate. Although there was heterogeneity between studies there was little evidence of statistical heterogeneity in the results. We were unable to extract data from all studies in a format that allowed inclusion in a meta-analysis. There was moderate quality evidence family-based interventions had a positive impact on preventing smoking when compared to a no intervention control. Nine studies (4810 participants) reporting smoking uptake amongst baseline non-smokers could be pooled, but eight studies with about 5000 participants could not be pooled because of insufficient data. The pooled estimate detected a significant reduction in smoking behaviour in the intervention arms (risk ratio [RR] 0.76, 95% confidence interval [CI] 0.68 to 0.84). Most of these studies used intensive interventions. Estimates for the medium and low intensity subgroups were similar but confidence intervals were wide. Two studies in which some of the 4487 participants already had smoking experience at baseline did not detect evidence of effect (RR 1.04, 95% CI 0.93 to 1.17). Eight RCTs compared a combined family plus school intervention to a school intervention only. Of the three studies with data, two RCTS with outcomes for 2301 baseline never smokers detected evidence of an effect (RR 0.85, 95% CI 0.75 to 0.96) and one study with data for 1096 participants not restricted to never users at baseline also detected a benefit (RR 0.60, 95% CI 0.38 to 0.94). The other five studies with about 18,500 participants did not report data in a format allowing meta-analysis. One RCT also compared a family intervention to a school 'good behaviour' intervention and did not detect a difference between the two types of programme (RR 1.05, 95% CI 0.80 to 1.38, n = 388). No studies identified any adverse effects of intervention. Authors' conclusions There is moderate quality evidence to suggest that family-based interventions can have a positive effect on preventing children and adolescents from starting to smoke. There were more studies of high intensity programmes compared to a control group receiving no intervention, than there were for other compairsons. The evidence is therefore strongest for high intensity programmes used independently of school interventions. Programmes typically addressed family functioning, and were introduced when children were between 11 and 14 years old. Based on this moderate quality evidence a family intervention might reduce uptake or experimentation with smoking by between 16 and 32%. However, these findings should be interpreted cautiously because effect estimates could not include data from all studies. Our interpretation is that the common feature of the effective high intensity interventions was encouraging authoritative parenting (which is usually defined as showing strong interest in and care for the adolescent, often with rule setting). This is different from authoritarian parenting (do as I say) or neglectful or unsupervised parenting.

Continuity and change in family engagement in home learning activities across the early years

This research utilised data from The Longitudinal Study of Australian Children and explored continuity and change in parental engagement in home learning activities with young children. The findings indicated a decrease over time in parental engagement with children, from age to 2-3 years to 6-7 years. Rate of decrease impacted negatively on learning outcomes for language and literacy, and mathematical thinking, in the early years of school, when children were aged 6-7 years. Shared reading with children and interactions around everyday home activities and play, in which children and parents participate together, impact on children's later development.

Relationships between biophysical and psychosocial outcomes following minor stroke

This descriptive correlational study examined relationships between mild stroke functional and psychosocial outcomes over the early post-discharge period among dyads of mild stroke patients (n=38) and their spousal caregivers (n=38). We measured patients' functional scores using the modified Rankin Scale; patients' and caregivers' quality of life (QoL) using Stroke Impact Scale and Short-Form 36 respectively, mood using the Beck Depression Inventory-II, and marital function scores using the Family Assessment Device. Spousal caregivers also completed the Bakas Caregiving Outcomes Scale as a measure of caregiver strain. The average age of stroke patients was 64 years and of spousal caregivers 58 years. All stroke patients were male; all spousal caregivers female. At three months post discharge, patient functional status scores had significantly improved from discharge (p=0.026) with a corresponding increase in QoL scores (p=0.012). Functional status was significantly correlated with patient perceptions of QoL at three months (r=.014, p=0.024) and spousal caregiver perceptions of physical domain QoL (r=.-.397, p=0.014). Spousal caregivers' mood at three months post discharge was strongly correlated with their perceptions of marital satisfaction (r=.578, p=0.000) and caregiver strain (r=-.620, p=0.000). In preparing patients for discharge following mild stroke, nurses must consider the psychological and social implications of the recovery process over time for both the patient with stroke and their spousal caregivers.

Multilingualism and speech-language competence in early childhood: Impact on academic and social-emotional outcomes at school

This large-scale longitudinal population study provided a rare opportunity to consider the interface between multilingualism and speech-language competence on children’s academic and social-emotional outcomes and to determine whether differences between groups at 4 to 5 years persist, deepen, or disappear with time and schooling. Four distinct groups were identified from the Kindergarten cohort of the Longitudinal Study of Australian Children (LSAC) (1) English-only + typical speech and language (n = 2,012); (2) multilingual + typical speech and language (n = 476); (3) English-only + speech and language concern (n = 643); and (4) multilingual + speech and language concern (n = 109). Two analytic approaches were used to compare these groups. First, a matched case-control design was used to randomly match multilingual children with speech and language concern (group 4, n = 109) to children in groups 1, 2, and 3 on gender, age, and family socio-economic position in a cross-sectional comparison of vocabulary, school readiness, and behavioral adjustment. Next, analyses were applied to the whole sample to determine longitudinal effects of group membership on teachers’ ratings of literacy, numeracy, and behavioral adjustment at ages 6 to 7 and 8 to 9 years. At 4 to 5 years, multilingual children with speech and language concern did equally well or better than English-only children (with or without speech and language concern) on school readiness tests but performed more poorly on measures of English vocabulary and behavior. At ages 6 to 7 and 8 to 9, the early gap between English-only and multilingual children had closed. Multilingualism was not found to contribute to differences in literacy and numeracy outcomes at school; instead, outcomes were more related to concerns about children’s speech and language in early childhood. There were no group differences for socio-emotional outcomes. Early evidence for the combined risks of multilingualism plus speech and language concern was not upheld into the school years.