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.

Working as one: A road map to disaster resilience for Australia

Natural disasters cause widespread disruption, costing the Australian economy $6.3 billion per year, and those costs are projected to rise incrementally to $23 billion by 2050. With more frequent natural disasters with greater consequences, Australian communities need the ability to prepare and plan for them, absorb and recover from them, and adapt more successfully to their effects. Enhancing Australian resilience will allow us to better anticipate disasters and assist in planning to reduce losses, rather than just waiting for the next king hit and paying for it afterwards. Given the scale of devastation, governments have been quick to pick up the pieces when major natural disasters hit. But this approach (‘The government will give you taxpayers’ money regardless of what you did to help yourself, and we’ll help you rebuild in the same risky area.’) has created a culture of dependence. This is unsustainable and costly. In 2008, ASPI published Taking a punch: building a more resilient Australia. That report emphasised the importance of strong leadership and coordination in disaster resilience policymaking, as well as the value of volunteers and family and individual preparation, in managing the effects of major disasters. This report offers a roadmap for enhancing Australia’s disaster resilience, building on the 2011 National Strategy for Disaster Resilience. It includes a snapshot of relevant issues and current resilience efforts in Australia, outlining key challenges and opportunities. The report sets out 11 recommendations to help guide Australia towards increasing national resilience, from individuals and local communities through to state and federal agencies.

The disaster flood experience: Older people’s poetic voices of resilience

This paper explores the experiences of older community-dwelling Australians evacuated from their homes during the 2011 and 2013 Queensland floods, applying the novel creative methodology of poetic inquiry as an analysis and interpretative tool. As well as exploring how older adults managed during a natural disaster, the paper documents the process and potential of poetic inquiry in gerontological research. The first and second poems highlight the different social resources older people have to draw on in their lives, especially during a crisis. Poem 1 (“Nobody came to help me”) illustrates how one older resident felt all alone during the flood, whereas Poem 2 (“They came from everywhere”), Poem 3 ("The Girls") and Poem 5 (“Man in Blue Shirt”) shows how supported – from both family and the wider community - other older residents felt. Poem 4 (“I can’t swim”) highlights one participant’s fear as the water rises. To date, few studies have explicitly explored older adult’s disaster experience, with this paper the first to utilise a poetic lens. We argue that poetic presentation enhances understanding of older residents’ unique experiences during a disaster, and may better engage a wider audience of policy-makers, practitioners, the general community and older people themselves in discussion about, and reflection on, the impact and experience of disasters.

Cultural adaptation and resilience: Controversies, issues and emerging models

What enables people to bounce back from stressful experiences? How do certain individuals maintain a sense of purpose and direction over the long term, even in the face of adversity? This is the first book to move beyond childhood and adolescence to explore resilience across the lifespan. Coverage ranges from genetic and physiological factors through personal, family, organizational, and community processes. Contributors examine how resilience contributes to health and well-being across the adult life cycle; why—and what happens when—resilience processes fail; ethnic and cultural dimensions of resilience; and ways to enhance adult resilience, including reviews of exemplary programs.

Resilience: A new definition of health for people and communities

What enables people to bounce back from stressful experiences? How do certain individuals maintain a sense of purpose and direction over the long term, even in the face of adversity? This is the first book to move beyond childhood and adolescence to explore resilience across the lifespan. Coverage ranges from genetic and physiological factors through personal, family, organizational, and community processes. Contributors examine how resilience contributes to health and well-being across the adult life cycle; why—and what happens when—resilience processes fail; ethnic and cultural dimensions of resilience; and ways to enhance adult resilience, including reviews of exemplary programs.

Regional resilience: Pre-service teacher preparation to teach in the bush

This paper reports on the outcomes of a two year ALTC Competitive Research and Development Project that aimed to "Develop Strategies at the Pre-Service Level to Address Critical Teacher Attraction and Retention Issues in Australian Rural, Regional and Remote Schools". As well as developing a ‘training framework’ and teaching guides to increase the capacity and credibility of four universities to prepare educators who might venture out of the metropolitan area to teach, data were gathered from pre-service and graduate teachers to analyse regional resilience. It was found that there was a strong likelihood to participate in a regional practicum and stay in a non-metropolitan community once they graduated from university if they had a positive attitude to regional Western Australia either through a family connection or previous experience. Recommendations from this study emphasise the importance of having pre-service students participate in positive regional experiences early in their university study.

A qualitative evaluation of an innovative resilience-building camp for young carers

Young carers are at increased risk of developing mental health and social problems. The objective was to pilot a camp-based resiliencebuilding programme for young carers. Twelve young carers (12 to 14 years) recruited from Carers Queensland attended a 3-day resilience-building camp adapted from the Resourceful Adolescent Program. One month after the camp, carers participated in a semistructured telephone interview. Thematic analysis was used to analyse the data. Two key themes emerged. The first, coping self-efficacy, included subthemes of affect regulation, interpersonal skills, and recognition of strengths and coping ability. The second key theme, social benefits, included opportunities for respite and social engagement. Overall, participants reported enjoying the camp and would recommend it to other young carers, yet they were able to provide some suggestions to improve future camps. Implementing an integrative resilience-building program such as the Resourceful Adolescent Program in a camp format shows promise as a way of both engaging and benefiting young carers, as well as selective populations more generally.

Vulnerability or resilience? Psycho-social factors associated with deliberate self-harm among adolescents

Background: Deliberate self-harm (DSH) is common among adolescents in Ireland and internationally. Psychological factors, negative life events and lifestyle factors have been found to be associated with self-harm in this group. However, large scale population-based studies of adolescent selfharm and its correlates have been lacking, and internationally a standardised methodology was needed to facilitate comparative studies. The focus on vulnerability which has been prevalent in this field has meant that research has failed to examine resilient adaptation among at-risk adolescents. Method: Data were obtained from a cross-sectional school-based study conducted in Ireland and in each of the six other centres which participated in the Child and Adolescent Self-harm in Europe (CASE) study. In Ireland, 3,881 adolescents in 39 schools in completing the anonymous questionnaire, while across all 7 centres, over 30,000 young people participated. Data were gathered on health and lifestyle, self-harm thoughts and behaviour, a wide range of life events, psychological characteristics (anxiety and depressive symptoms, self-esteem, impulsivity and coping style), and support available to young people. Results: This thesis reports the findings of the Irish CASE centre as well as one international study. The factors associated with DSH among Irish adolescents differed by gender, but among both genders drug use and knowing a friend who had engaged in self-harm were associated with DSH. Among Irish boys, strong associations were found between bullying and poor mental health and DSH. Among boys who had been bullied, psychological and school factors were associated with DSH, while family support was protective. Links between stressful life events, psychological characteristics and DSH within the international CASE sample were examined. Increased history of self-harm thoughts and acts was associated with greater depression, anxiety and impulsivity, lower self esteem and an increased prevalence of ten different negative life events, supporting the hypothesis of a “dose-response” relationship between these risk factors and the self-harm process. Associations between coping style, mental health factors (depressive symptoms, anxiety and self-esteem) and self-harm were examined among Irish adolescents. Emotion-oriented coping was strongly associated with poorer mental health and self-harm thoughts and acts. A mediating effect of emotion-oriented coping on associations between mental health factors and DSH was found for both genders and between problem-oriented coping and mental health factors for girls. Similar mediating effects of coping style were found when risk of self-harm thoughts was examined. Resilient adaptation among adolescents exposed to suicidal behaviour of others was examined. Self-harm thoughts were common in these adolescents. Among those exposed to suicidal behaviour of others, vulnerability factors were drug use and higher levels of anxiety among boys, while for girls drug use, bullying and abuse were vulnerability factors, while resilience was associated with higher self-esteem and use of problem-oriented coping. Conclusion: These findings can aid in the identification of young people at risk of self-harm in the school setting and highlight the importance of mental health, peer-related and lifestyle factors in the development of DSH. High-risk groups of young people such as bullying victims and those exposed to suicidal behaviour of others have distinctive profiles of risk factors which differ from those of their peers. Findings relating to the importance of positive coping skills can inform positive mental health programmes, many of which aim to enhance life skills and build resilience among young people. Knowledge of the factors associated with positive adaptation among at-risk adolescents can inform prevention efforts among this group.

Victimisation of street children in Addis Ababa: factors of resilience and susceptibility

Cross-cultural variations in conceptions of childhood are discussed, particularly with regard to child abuse and child labour. Regardless of cultural background, a universal minimum standard of child rearing is required. The street child literature is reviewed, culminating in an analysis of Ethiopian street children. Theoretically this work is informed by victimology. Concepts shared by victimology and rational choice perspective are discussed, after Fattah (1993a). Victim surveys are described, highlighting their accuracy of crime estimates. Juvenile prostitution, runaways and rape are examined, particularly with regard to their relevance in Addis Ababa. Fifty five male and 135 female street children were interviewed. Interviews with boys focused on delinquency. An age-related pattern emerged, with younger boys less likely to drink, chew khat, steal or be sexually active. Interviews with street girls focused on the differences between girls living on the streets (girls of the street), girls working on the streets (girls on the street) and a sample of homebased girls. Girls of the street come to the street come to the streets for many reasons. Conflicts with a parent or guardian account for almost 50%. They are highly vulnerable to sexual assaults, particularly those 43% who have worked as prostitutes. Girls on the street experience considerably less victimisation. Urban poor girls live in socio-economic circumstances akin to girls on the street but enjoy almost universal protection from victimisation because they do not spend time on the streets. Unprotected by the stability which a family provides, girls of the street experience high victimisation levels. Such victimisation is often the result of reliance on types of work, such as prostitution, which brings the girls into contact with exploitative adults. Resistance to such victimisation is provided by a secure place to sleep, companions, and relatively safe types of work. Such protective factors are more readily available to family based children as compared to those living independently.

Caregiver burden and resilience among Malaysian caregivers of individuals with severe mental illness

Little research has focused on caregiver burden experienced by Malaysian caregivers of individuals with mental illness, despite the fact that data in the Asian region shows almost threequarter of patients with mental illness live with family members. The aim of this research was to examine the levels of caregiver burden and resilience of caregivers of individuals with severe mental illness and to determine the influencing factors on caregiver burden. A quantitative, cross sectional, correlational design was used to measure burden and resilience and to explore the relationship between demographic variables, caregiver stressors, resilience and caregiver burden. This study was guided by the model of Carer Stress and Burden. Data collection was conducted over two months in summer 2014. A self-administered questionnaire that consisted of four sections measuring demographic data, primary stressors, caregiver burden and resilience was used to collect data. Two hundred and one caregivers of individuals with mental illness attending Psychiatric Outpatient Clinics in Malaysia were recruited. Samples were selected using non-probability, consecutive sampling. Factors that were found to be significantly associated with caregiver burden were caregivers’ age, gender, ethnic group, employment status, having a medical condition and current health status. The primary stressors found to be significantly associated with caregiver burden include the time spent for caregiving tasks, unavailability of support with caregiving tasks, lack of emotional support and patients’ behavioural disturbances. In addition, it was found that caregivers who were less resilient reported a higher level of caregiver burden. Findings from hierarchical multiple regression indicated that caregivers’ marital status, current health status, time spent for caregiving and resilience predicted caregiver burden. This research provides insight into caregiver burden among caregivers of individuals with mental illness in Malaysia. It highlights the important factors associated with caregiver burden and the significant role of resilience in reducing caregiver burden.

Adolescents' educational outcomes in a social ecology of parenting, family, and community risks in Northern Ireland

This study examines the influence of social ecological risks within the domains of parenting, family environment, and community in the prediction of educational outcomes for 770 adolescents (49% boys, 51% girls, M = 13.6 years, SD = 2.0) living in a setting of protracted political conflict, specifically working class areas of Belfast, Northern Ireland. Controlling for religious community, age, and gender, youths' lower academic achievement was associated with family environments characterized by high conflict and low cohesion. School behaviour problems were related to greater exposure to community violence, or sectarian and nonsectarian antisocial behaviour. Youths' expectations about educational attainment were undermined by conflict in the family environment and antisocial behaviour in the community, as well as parenting low in warmth and behavioural control. Findings underscore the importance of considering family and community contributions to youths' educational outcomes. Suggestions regarding targeted interventions toward promoting resilience are discussed, such as assessing both child and family functioning, developing multidimensional interventions for parents, and building community partnerships, among others.

"Getting-by', Coping and Resilience in Difficult Times: Initial Findings

A report provided the initial findings from a research project that examined the resilience of households in Northern Ireland. Drawing on baseline survey data and qualitative interviews with households across four neighbourhoods, it outlined a range of challenges and the strategies used by households to 'get by'. The report said that, for these households, resilience was not about 'bouncing back', 'flourishing', or 'thriving' in the face of adversity, but was about not being overcome, 'getting-by', enduring, surviving, just 'getting on with things', and 'keeping their heads above the water'. The report noted the susceptibility of households to future stressors, such as welfare reform, especially those on means-tested benefits or with long-term illness or disability. Place, and relationships with family and friends, appeared to be important for resilience and future work would investigate this further. The report highlighted issues around the measurement of resilience and noted the importance of qualitative work.