Predictors of care-giver stress in families of preschool-aged children with developmental disabilities

Background This study examined the predictors, mediators and moderators of parent stress in families of preschool-aged children with developmental disability. Method One hundred and five mothers of preschool-aged children with developmental disability completed assessment measures addressing the key variables. Results Analyses demonstrated that the difficulty parents experienced in completing specific caregiving tasks, behaviour problems during these caregiving tasks, and level of child disability, respectively, were significant predictors of level of parent stress. In addition, parents’ cognitive appraisal of care-giving responsibilities had a mediating effect on the relationship between the child’s level of disability and parent stress. Mothers’ level of social support had a moderating effect on the relationship between key independent variables and level of parent stress. Conclusions Difficulty of care-giving tasks, difficult child behaviour during care-giving tasks, and level of child disability are the primary factors which contribute to parent stress. Implications of these findings for future research and clinical practice are outlined.

Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

Carers in the welfare state : on informal care and support for carers in Sweden

  The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the ‘heavy end’ of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I). Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II). The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II). The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84. In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government’s special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III). Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government’s special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV). In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm. In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.

Young people’s aspirations for education, work, family and leisure

Young people are arguably facing more ‘complex and contested’ transitions to adulthood and an increasing array of ‘non-linear’ paths. Education and training have been extended, identity is increasingly shaped through leisure and consumerism and youth must navigate their life trajectories in highly individualised ways. The study utilises 819 short essays compiled by students aged 14–16 years from 19 schools in Australia. It examines how young people understand their own unique positions and the possibilities open to them through their aspirations and future orientations to employment and family life. These young people do not anticipate postponing work identities, but rather embrace post-school options such as gaining qualifications, work experience and achieving financial security. Boys expected a distant involvement in family life secondary to participation in paid work. In contrast, around half the girls simultaneously expected a future involving primary care-giving and an autonomous, independent career, suggesting attempts to remake gendered inequalities

Contributors to life satisfaction in parents of an adult child with Down syndrome

Aim: This study investigated: (1) concurrent relationships between measures of family life and parental satisfaction with life in parents of an adult with Down syndrome and (2) influence of early family functioning on current parental satisfaction. Method: Sixty-two families were interviewed using a semi-structured interview, and responded to a series of questionnaires related to family functioning when their child with Down syndrome was between 7 and 15 years. Fifteen years later parents were asked to provide data on their current situation, including mental health, and satisfaction and difficulties with respect to care-giving in relation to their adult child. Results: Over half the families provided data to the second phase of the study. Life circumstances were appreciably worse for a small group of families than had been the case 15 years previously; however, these changes were generally unrelated to their parenting role. Overall, parents reported experiencing satisfaction from their care-giving role and did not report high levels of difficulties emanating from this role. Conclusions: Most parents demonstrated good levels of personal functioning, although there was a small group for whom this was not the case. Earlier functioning did not make a strong contribution to current levels of life satisfaction.

The legitimation and reproduction of discourse-practice gaps in work-life balance

Purpose - Critical scholarship on work-life balance (WLB) and its associated practices maintains that workplace flexibility is more than a quasi-functionalist response to contemporary problems faced by individuals, families or organisations. Beginning with Fleetwood’s contention that WLB discourses have become "detached" from their associated practices, this paper explores how workplace practices support or challenge dominant WLB discourses evident in socio-cultural, political and organisational sources. Design/methodology/approach - We analyse individual and group interview transcripts derived from 122 white-collar employees in two different organisational contexts (one public, one private) in the construction industry in Australia. Findings - Four major themes were identified in the data which illustrate discourse practice gaps. First, the demands facing this particular industry/ sector were framed as heightened and unique. Second, productivity was prioritised, dominating employees’ care-giving and lifestyle concerns. Third, employees’ caring responsibilities were communicated as personal and individual choices. Fourth, commitment and efficiency were judged on the basis of presence in the workplace. Research limitations/implications - Even in industries that have embraced WLB, workplace practices legitimate and reinforce the status quo, and maintain a gap between the promises of WLB and its potential to ameliorate conflict and assist workers to span the boundaries of paid work and other life domains. Originality/value - While the practices demonstrated in the research are focused on one industry, the study provides a critical analysis of how the contextually-influenced meaning of WLB is constructed, created and contested in these workplaces and the effects it produces.

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.

Are mothers of young children really inactive?

Australian surveys have found that only 43% of women meet the current recommendation for regular moderate physical activity, and that women who are mothers of young children are even less likely to be adequately active for health benefit. These women spend a significant proportion of their day in occupational, household and care-giving activities, which may not be ‘captured’ in conventional physical activity surveys. The purpose of this study was to compare physical activity in young mothers and age-matched controls using three different measures of physical activity. 35 women (16 mothers of young children, M) and 19 age-matched comparison women (NM) completed a survey which asked about walking to and from places, and about moderate and vigorous activity in leisure time and at work (paid and unpaid). They also kept a detailed diary of all their activities for two week-days and two week-end days, and wore a pedometer (Yamax digiwalker) on these days. Each activity in the diary was assigned an energy expenditure (EE) score based on it's intensity (Compendium of Physical Activity) and time spent in that activity. There were no differences between M and NM for pedometer steps (M: 9270 sd 2947; NM: 9768 sd 3051) or for daily energy expenditure (EE) calculated from the diaries (M: 2029 sd 189; NM: 2015 sd 169 METS.mins) or survey (M: 2079 sd 448; NM: 1495 sd 325). There was a significant correlation between pedometer steps and daily METs.mins estimated from the diaries (r = 0.35, p = 0.04); however no relationship was observed between pedometer steps and EE from the survey (r = .09, p = .56). Further analysis of the individual survey items found pedometer steps to be related to EE from walking to and from places (r = .34) and leisure time (r = .31), but not work related activity (r = -.08). There were no significant relationships between EE computed from the diaries and any of the survey questions. The three activity measures indicate that the physical activity levels of the young mothers in our sample were comparable to age-matched non-mothers. The results of the correlation analyses highlight the difficulty of assessing low-intensity work-related physical activity via self-report. Supported by Australian Commonwealth Department of Health and Aged Care.

Sinusta kiinni : Tutkimus puolisohoivan arjen toimijuuksista

Depending on you – A study of spousal care, everyday life and agency The present aim of the aging policy is to promote old peoples´ possibilities to live at their own home. It is also many elderly couples´ own wish. At home a persons spouse is the most natural care giver, if she or he is able to give care. Spousal care means living together, giving and receiving care and interdependency between the spouses. The aim of the policy is to support spousal care by paying financial support to a carer and arrang-ing formal home care services. The purpose of this research is to study the agency of care giving and receiving spouses as care givers and receivers and also as home care service users. The data of the study consist of the interviews of 21 elderly couples. Both spouses were interviewed seper-ately, with the exception of five couples who were interviewed together. In these inter-views a care receiver had difficulties in communicating by speaking and a spouse was her or his interpreter. The study is based on a social constructionistic and a discourse analytical view of con-struction of meanings in human communication. Talking is a social action: people achieve identities, realities, social order and social relationship through talking. In inter-pretating the spouses agency I have used of Harvey Sack´s method of Membership Categorization Device (MCD). The spouses construct social categories which made the meaning of their agency visible. Care changes the routines and actions of everyday life. The couples have to negotiate their duties and rights between each other. Care giving and receiving are both physical and emotional actions. In the end it becomes a part of the couples´ normal life. The pur-pose of couples´ action is to live together as long as possible. They want to strengthen both their own agency and their spouses´ agency. The living together depends on both of them. The spouses decided together what home care services they would like to use and on which conditions they have to use services. Spouses have different kind of agencies as service users which describe their relationship and confidency on formal home care support and services. Services must support the elderly couples´ shared life at home. They cannot be against the conditions on the spousal care. When you want to arrange services to elderly care giving and receiving couples, you have to consider their own wishes and the meanings of their own relationship and shared life.

Hostility: A prospective study of the genetic and environmental background and associations with cardiovascular risk

Hostility is a multidimensional construct having wide effects on society. In its different forms, hostility is related to a large array of social and health problems, such as criminality, substance abuse, depression, and cardiovascular risks. Identifying and tackling early-life factors that contribute to hostility may have public health significance. Although the variance in hostility is estimated to be 18-50 percent heritable, there are significant gaps in knowledge regarding the molecular genetics of hostility. It is known that a cold and unsupportive home atmosphere in childhood predicts a child s later hostility. However, the long-term effects of care-giving quality on hostility in adulthood and the role of genes in this association are unclear. The present dissertation is part of the ongoing population-based prospective Young Finns study, which commenced in 1980 with 3596 3-18-year-old boys and girls who were followed for 27 years. The specific aims of the dissertation were first to study the antecedents of hostility by looking at 1) the genetic background, 2) the early environmental predictors, and 3) the gene environment interplay behind hostility. As a second aim, the thesis endeavored to examine 4) the association between hostility and cardiovascular risks, and 5) the moderating effect of demographic factors, such as gender and socioeconomic status, on this association. The study found potential gene polymorphisms from chromosomes 7, 14, 17, and 22 suggestively associated with hostility. Of early environmental influences, breastfeeding and early care-giving were found to predict hostility in adulthood. In addition, a serotonin receptor 2A polymorphism rs6313 moderated the effect of early care-giving on later hostile attitudes. Furthermore, hostility was shown to predict cardiovascular risks, such as metabolic syndrome and inflammation. Finally, parental socioeconomic status was found to moderate the association between anger and early atherosclerosis. The new genetic and early environmental antecedents of hostility identified in this research may help in understanding the development of hostility and its health risks, and in planning appropriate prevention. The significance of early influences on this development is stressed. Although the markers studied are individual- and family-related factors, these may be influenced at the societal level by giving accurate information to all individuals concerned and by improving the societal circumstances.

Grandparents and parenting: towards a theory of grandparenthood

This paper explores the changing role of contemporary grandparents with many demonstrating a willingness and ability to take on parental responsibilities for their grandchildren, where they may face challenges and opportunities in difficult times. Three main forms of grand parenting are identified in the literature, those who have primary responsibility and are raising their grand children as their main carers perhaps in response to crisis situations, those who live in extended families and participate in care, and those who provide day care while the child’s parents work. The latter has increased because of the increasing frequency of divorce, single parenting and the lack of available or subsidised child care in the United Kingdom. When grandparents step into a troubled situation and attempt to offer stability and security for their grandchildren they may have to manage the combined responsibilities of family caregivers and parental figures. Grandparenthood is a tenuous role, lacking clear agreement on behaviour norms. In the culture of advice and parenting support, while care must be taken not to undermine parenting skills or make judgements about the ability to cope with the demands of childcare, an exploration of the impact on grandparents and children must be undertaken. Due to the complex web of interrelated factors the process and outcomes of care giving by grandparents is not well known in the literature. It is proposed therefore that it is timely for research to be undertaken to explore and develop a theory of Grandparenthood.

Body movements:an important additional factor in discriminating pain from stress in preterm infants

To describe developmentally appropriate, specific body movements and other biobehavioral responses of preterm infants to a group of routine care giving tasks (Clustered Care), and to compare responses to acute pain with those of Clustered Care.

Living and coping with Parkinson's disease: Perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n=17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services. © The Author(s) 2010.

Supporting fathering through infant massage

Developing a strong relationship is essential for optimal child development and it is possible for fathers to fully participate in developing this close bond. Men often develop this relationship through interactive play which usually occurs later in their child's development. As a result, fathers often feel dissatisfied with their ability to form a close attachment in the early post-partum period, which in turn may increase their stress level. However, men can be prepared for the transition to fatherhood if they develop the knowledge and skill necessary to create positive relationships with their infants. Infant massage appears to be a viable option for teaching fathers care-giving sensitivity. To build on the notion of teaching fathers attachment system behaviour in early infancy, a quasi-experimental, mixed methods study was employed. Twenty-four infant-father dyads were recruited for the study. The fathers were asked to fill out the Parent Stress Index and a facial cues rating scale at two times, one month apart. The experimental group also participated in an infant massage intervention taught by a Certified Infant Massage Instructor of the International Association of Infant Massage. A repeated measures MANOVA revealed infant massage decreased paternal stress. Qualitatively, the fathers provided rich descriptions of their experience in the baby massage class which provided useful insight into the efficacy of the intervention. Overall, the fathers enjoyed the experience but did not necessarily see the direct benefit of the intervention on their relationship. Recommendations for pre and postnatal education for fathers are made.

Utilité de pictogrammes pour améliorer la santé bucco-dentaire et le comportement des enfants autistes

Introduction : Les soins dentaires des enfants autistes représentent un défi pour les parents et les dentistes. Des efforts doivent être faits afin d’améliorer les mesures préventives et l’éducation des parents. Recension des écrits : L’autisme se définit comme un désordre qualitatif de l’interaction sociale et de la communication, par des comportements ou activités répétitifs et stéréotypés et par de l’hypersensibilité aux stimuli corporels. Le manque de coopération pour le brossage des dents constitue un obstacle au maintien d’une bonne hygiène bucco-dentaire chez l’enfant autiste. Problématique : L’enfant autiste représente un défi pour le dentiste, mais aussi pour ses parents lors des mesures quotidiennes d’hygiène. Peu d’études cliniques se sont penchées sur l’utilité des pictogrammes dans la dispensation des soins dentaires quotidiens et professionnels de cette clientèle. Hypothèse de recherche : L’utilisation de pictogrammes améliore la coopération des enfants autistes pour les soins dentaires quotidiens et chez le dentiste, leur procurant une meilleure hygiène bucco-dentaire. Matériels et méthodes : Selon un devis d’étude expérimentale randomisée, 17 participants expérimentaux (avec pictogrammes) et 18 participants contrôles ont été recrutés au CHU Sainte-Justine, puis évalués à 6 reprises sur 12 mois. L’hygiène fut notée par l’indice de plaque et le comportement par l’échelle de Frankl. Résultats : Aucune différence significative n’a été notée entre le groupe expérimental et contrôle pour l’indice de plaque et l’échelle de Frankl. Globalement, une baisse de l’indice de plaque et une amélioration du comportement ont été notées pour les deux groupes et ce, pendant la période d’étude de 12 mois. Conclusion : Les résultats de la présente étude ne permettent pas d’affirmer que les pictogrammes contribuent à améliorer l’hygiène bucco-dentaire et le comportement des enfants autistes lors des soins dentaires quotidiens et professionnels.