Humming as a mean of communicating during meal time situations : A Single Case study involving a women with severe dementia and her caregiver

Objective: ‘Music Therapeutic Caregiving’, when caregivers sing for or together with persons with dementia during morning care situations, has been shown to increase verbal and nonverbal communication between persons with dementia and their caregivers, as well as enhance positive and decrease negative emotions in persons with dementia. No studies about singing during mealtimes have been conducted, and this pilot project was designed to elucidate this. However, since previous studies have shown that there is a risk that persons with dementia will start to sing along with the caregiver, the caregiver in this study hummed such that the person with dementia did not sing instead of eat. The aim of this pilot project was threefold: to describe expressed emotions in a woman with severe dementia, and describe communication between her and her caregivers without and with the caregiver humming. The aim was also to measure food and liquid intake without and with humming. Method: The study was constructed as a Single Case ABA design in which the ordinary mealtime constituted a baseline which comprised a woman with severe dementia being fed by her caregivers in the usual way. The intervention included the same woman being fed by the same caregiver who hummed while feeding her. Data comprised video observations that were collected once per week over 5 consecutive weeks. The Verbal and Nonverbal Interaction Scale and Observed Emotion Rating Scale were used to analyze the recorded interactions. Results: A slightly positive influence of communication was shown for the woman with dementia, as well as for the caregiver. Further, the women with dementia showed a slight increase in expressions of positive emotions, and she ate more during the intervention. Conclusion: Based on this pilot study no general conclusions can be drawn. It can be concluded, however, that humming while feeding persons with dementia might slightly enhance communication, and positive expressed emotions in persons with dementia. To confirm this, more studies on group levels are needed. Because previous studies have found that caregiver singing during caring situations influences persons with dementia positively it might be desirable to test the same during mealtime.

The impact of caring on caregivers' mental health : a review of the literature

This paper provides a brief overview of the literature on the impact of caring on the mental health of informal caregivers in the areas of aged care, disability and mental health. Factors discussed that may impact on caregivers' mental health include the relationship between the caregiver and care recipient, the nature of the care recipient's disability and the stage of the caregiving process. Several moderators of the impact of caring on mental health are described, including socio-economic factors, social support and coping strategies. This information provides a context within which to examine the type of interventions appropriate to assist caregivers in various situations.

Caregivers as managers of subjective wellbeing: a homeostatic perspective

Background: This paper proposes that the adequacy of service delivery and caregiving to people who are disabled should be assessed using two criteria. One is the objective circumstance of living, which should be at a standard acceptable to the community at large. The other is a level of subjective wellbeing (SWB) within the normal range. Method: This latter criterion is a novel conception based on an understanding that SWB is homeostatically managed to lie normally within a narrow range of values. Results: People who have a disability are more likely than usual to have a fragile homeostatic system because of the additional life challenges imposed by their disability. Conclusions: The role of a caregiver is to provide resources and protection against strong threats to homeostasis, thereby ensuring that the person in their care has a normal-range level of SWB.

Towards ending the silence: working women as carers of children with chronic illness/disability

This research presents stories from Australian women who work and care for a child with a significant chronic illness or disability. The paper considers the theory of Silencing the Self (Jack, 1991) in relation to the reported experiences and behaviours of these women. We report three themes of Caring and Working: "Otherness", "Doing it All" - but "Wanting to Live a Normal Life". As in Jack's study, these women engaged in silencing of the self. However, we also observed other people contributing to their silence and, unlike the respondents in Jack's study, many of these women fought the silence and did not accept that their unhappy situations should continue. They sought a life where silencing may not have been necessary.

Towards ending the silence: working women caring for children with chronic illness

This paper presents stories from women who work and care for a child with a significant chronic illness or disability. The purpose of this paper is to move towards ending the silence on their lives. A three-phase emergent research design responds to the question: What is life like for a full-time worker who is concurrently the primary carer of a chronically ill child? This paper considers the theory of Silencing the Self (Jack, 1991) in relation to the emergent themes of “Otherness” and “Doing it All.” As in Jack’s study, these women also engaged in silencing of the self. However, unlike the respondents in Jack’s study, these women did not demonstrate feelings of worthlessness and hopelessness for the future, nor were they alone in contributing to their silence. Indeed, many experienced silencing behaviors from others around them, and many rallied against the silence, not accepting that their burden should continue. Consideration of Jack’s theory is made to point out the distinctions between the women in this study and Jack’s study, and analytical commentary is provided to demonstrate the relevance of this analysis in light of the current debates surrounding the Work–Home Conflict and the rising levels of informal care provided by women in our communities.

Mother and toddler activity in the zone of proximal development for pretend play as a predictor of higher child IQ

This study investigated the pretend play of mother—toddler dyads in relation to later child IQ. Twenty-one toddlers were videotaped in monthly play sessions with their mothers, from age 8 to 17 months, and later assessed at 5 years of age on the Stanford-Binet IV. Children's and mothers' pretend play levels and frequencies were measured using Brown's (1997) Pretend Play Observation Scale. Dyadic play activity was analyzed using the conceptual frameworks of scaffolding and Vygotsky's Zone of Proximal Development (ZPD). Toddlers later assessed as having higher IQ demonstrated more rapid learning in the ZPD for pretend play and experienced earlier maternal transfer of responsibility for play. These findings support other evidence on the differential early development of high ability or gifted children and the role of caregiver interactions in that development.

Putting the Research to Use: This study provides evidence that gifted children show differential development, in this case more rapid learning, from the first year of life. It also demonstrates how responsive parental interactions can support this advanced development. For family and professional caregivers, the findings imply that optimum caregiving for the young gifted child involves interactions that are both responsive to individual potential and appropriately challenging. In regard to the methodological challenges of researching early giftedness, the study demonstrated that the constructs of the ZPD and scaffolding were useful frameworks for investigating early gifted development and caregiver influences on that development. Pretend play activity was also shown to be an effective measure and a useful context for the study of gifted development in infants and toddlers. It would be valuable for future researchers in this area to utilize similar approaches that are grounded in the unique developmental characteristics of young children, and that aim to account for the interactive contexts that are so important in children's lives. The field of gifted education, in general, would also benefit from an increased awareness and exploration of the role of play in the development of intellect, imagination and creativity.

The role of oxytocin in mother-infant relations : a systematic review of human studies

Background: Oxytocin is associated with the establishment and quality of maternal behavior in animal models. Parallel investigations in humans are now under way. This article reviews the current research examining the role of oxytocin in mother-infant relations, attachment, and bonding in humans. Methods: A systematic search was made of three electronic databases and other bibliographic sources for published research studies that examined oxytocin and mother-infant relations in humans, including attachment, maternal behavior, parenting, and mother-infant relations. Results: Eight studies were identified, all of which were unique in their methodologies, populations studied, and measures used. Seven studies found significant and strong associations between levels or patterns of oxytocin and aspects of mother-infant relations or attachment. Conclusions: Oxytocin appears to be of crucial importance for understanding mother-infant relationships. The findings of this review suggest that the pioneering, but preliminary, research undertaken to date is promising and that replication with larger samples is needed. Research that draws on more robust measures of attachment and bonding, as well as improved measures of oxytocin that include both central and peripheral levels, will elucidate the role of oxytocin in human mother-infant relationships. As the production of oxytocin is by no means restricted to mothers, the extension of the oxytocin studies to fathering, as well as to alloparental caregiving, would be an intriguing next step.

Fostering relationships between infants, toddlers and their primary caregivers in child care centres in Australia

The chapter provides a synthesis of theory and research in relation to relationships between babies, toddlers and their caregivers in child care centres. The themes addressed include attachment theory and how this is taken account of by caregivers, the importance of secure relationships that recognize and build on the first transition from home to child care centres. In addition, the use of primary caregiving gropus is investigated whereby the caregivers establish close reciprocal relationships with babire, toddlers and their families.

Development of guidelines for caregivers of people with bipolar disorder : a Delphi expert consensus study

Objectives: Close family and friends are often a primary source of support for a person with bipolar disorder. However, there is a lack of
information for caregivers about ways to provide helpful support and take care of themselves. Rates of caregiver burden are high and increase the risk of caregiver depression and health problems. This study aimed to develop guidelines to assist caregivers of adults with bipolar disorder to be informed about bipolar disorder and to support the person without neglecting their own wellbeing.
Methods: The Delphi method was used to assess consensus between international expert panels of 45 caregivers, 47 consumers, and 51 clinicians about what information to include in the caregiver guidelines. Initial online survey items were based on the existing literature. Subsequent surveys included new or reworded items suggested by panel members and items that needed re-rating. Items endorsed by at least 80% of all three panels formed the content of the guidelines.
Results: Nearly 86% of the 626 survey items were endorsed. The items covered information on the illness, treatment, and suggestions on ways caregivers can provide support and take care of themselves in the different phases of illness and wellness, and information on dealing with specific real-life challenges. Although consensus rates were high, meaningful areas of difference between panels were found (e.g., collaboration issues).
Conclusions: The guidelines provide comprehensive introductory information, suggestions, and resources for caregivers. Access to relevant information may help caregivers to cope constructively with the person’s bipolar disorder and their caregiving situation. The content of the guidelines could be used to help formulate a stepped-care approach to supporting caregivers, ranging from basic information and pamphlets to brief training courses and specialized family or caregiver interventions based on need and accessibility.

A parallel-group, randomised controlled trial of a multimedia, self-directed, coping skills training intervention for patients with cancer and their partners: design and rationale

Introduction:

Diasporas in Australia: current and potential links with the homeland

This paper is the outcome a three year Australian Research Council (ARC) Linkage project Diasporas in Australia: Current and Potential Links with the Homeland conducted from 2009-2012. The research involved a comparatives study of the Italian, Macedonian, Tongan, and Vietnamese diaspora in Australia. The broad purpose of the project was to consider how the different “type” of diaspora affected the nature and extent of their ties to the Homeland. This was explored from an interdisciplinary perspective into five broad areas: citizenship, identity and langue; personal ties through visits, communication and media use; political and communal involvement and philanthropy; family/kinship, caregiving and remittances; and business and professional ties. These are the levels of analysis within this article which consider the evaluation of diaspora typologies.

Ethical challenges associated with providing continence care in residential aged care facilities : findings from a grounded theory study

A person-centred approach to care in residential aged care facilities should uphold residents’ rights to independence, choice, decision-making, participation, and control over their lifestyle. Little is known about how nurses and personal care assistants working in these facilities uphold these ideals when assisting residents maintain continence and manage incontinence. The overall aim of the study was to develop a grounded theory to describe and explain how Australian residents of aged care facilities have their continence care needs determined, delivered and communicated. This paper presents and discusses a subset of the findings about the ethical challenges nurses and personal care assistants encountered whilst providing continence care. Grounded theory methodology was used for in-depth interviews with 18 nurses and personal care assistants who had experience of providing, supervising or assessing continence care in any Australian residential aged care facility, and to analyse 88 hours of field observations in two facilities. Data generation and analysis occurred simultaneously using open coding, theoretical coding, and selective coding, until data were saturated. While addressing the day-to-day needs of residents who needed help to maintain continence and/or manage incontinence, nurses and personal care assistants struggled to enable residents to exercise choice and autonomy. The main factor that contributed to this problem was that the fact that nurses and personal care assistants had to respond to multiple, competing, and conflicting expectations about residents’ care needs. This situation was compounded by workforce constraints, inadequate information about residents’ care needs, and an unpredictable work environment. Providing continence care accentuated the ethical tensions associated with caregiving. Nurses’ and personal care assistants’ responses were mainly characterised by highly protective behaviours towards residents. Underlying structural factors that hinder high quality continence care to residents of aged care facilities should be urgently addressed.

Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer

Objective : Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer.

Methods : The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care.

Results : Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported.

Conclusions : This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity.

Supporting informal caregivers of people with advanced cancer: a literature review

Informal carers are people who provide care without a specific professional role. They provide diverse caregiving supports including disease-related problems, side effects of treatment and psychosocial impacts. This paper reports on a comprehensive review of caregiving literature, focusing specifically on cancer caregivers. The paper presents five observations drawn from the literature in order to make recommendations about how caregivers of people with advanced cancer can best be supported. The observations are: 1) caregivers are a heterogeneous group; 2) they have unique needs that differ to the patient; 3) their role includes more than attending to physical caregiving tasks; 4) they may feel unable to take a break from the role and 5) they need their own support which may be beneficial to their capacity to continue in the caregiving role. Recommendations for how health professionals can assist in supporting caregivers in their role are discussed.