Geographical isolation and a lack of gender-sensitive and caregiver-friendly workplace policies (CFWPs) in work settings lead to adverse impacts on the economic, emotional, and physical health of Transnational Carer-Employees (TCEs). TCEs are employed immigrants who engage in caregiving to their loved ones across borders while residing in the host country. The secondary analysis conducted herein looked at the experiences, commonalities, and differences among 29 TCEs from Pakistani, Syrian, African, and South American backgrounds living in London, Ontario, before and after COVID-19. Constructivism and intersectionality informed thematic analysis of the data highlighted that among the respondents, care is a religious obligation, influenced by culture as the eldest child or those living abroad are expected to help family back home and that men provide more financial caregiving whereas women divulge in higher physical and emotional care. Results also exhibit that TCEs work in low-skilled jobs due to a lack of English proficiency, care is limited because of financial barriers, and employer support, financial relief, and increased vacation time are the recommendations by TCEs for workplace policies. This thesis further showcases that there are more similarities than differences between the four visible minority cohorts. Most participants observed satisfaction after providing transnational care, whereas a few interviewees of Syrian and African origin reported feeling overwhelmed. While many TCEs observed low income and decreased work opportunities after COVID-19, a few participants of African ethnicity, working in essential services, disclosed an increased workload post-pandemic. This research reveals that to manage their care and work duties, visible minority TCEs apply four common coping strategies in their lives: praying, keeping busy, staying active, and family support. Implications of this thesis include the promotion of CFWPs in places of employment to sustain the welfare of TCEs and the Canadian economy. / Thesis / Master of Science (MSc) / Transnational Carer-Employees (TCEs) are immigrants who provide caregiving to their families or friends in other nations while being employed in the country of resettlement. Immigrants are an integral part of the Canadian population growth and economy; however, their simultaneous work and unpaid care outside Canada have negative impacts on their well-being. The goal of this thesis was to explore the experiences of visible minority TCEs living in London, Ontario, before and after COVID-19. This research determines that many participants experience deskilling, are unaware of carer-friendly policies, and believe that caregiving is a cultural expectation. Findings also illuminate that care varies by gender, can lead to both feelings of reward and frustration, and that TCEs are unable to provide their desired level of care due to financial constraints. This research urges employers to accommodate TCEs through Care-Friendly Workplace Policies (CFWPs) in work settings such that the health of TCEs can be improved.

Background: Despite evidence that caring for a spouse or partner with dementia may continue over a number of years, our understanding of how the carer’s experience unfolds over time is still in its infancy. In addition, the emotional experience of spousal dementia carers has been incompletely understood in research and clinical practice with a predominant focus upon negative emotional consequences. There is a need to contextualise the emotional experience of carers within a framework that enables understanding of positive aspects of the care experience. Objective: This thesis is in two parts. Part one uses systematic review to critically evaluate evidence from published longitudinal studies that assess the impact of care transition (caring for spouse at home and placed spouse in care home) on the well-being of spousal dementia carers. Part two is an empirical study examining emotion regulation and positive growth in spouses who care for their partner with a diagnosis of dementia. Methods: Systematic review of longitudinal studies that assess the impact of care transition on spousal carer well-being. The empirical study comprised a cross-sectional design comparing positive growth and emotion regulation in three carer groups (caring for spouse at home, placed spouse in care home or experienced death of spouse). 183 carers were recruited through a postal survey which comprised the following self-report measures: Post Traumatic Growth Inventory; Basic Emotions Scale; and Regulation of Emotions Questionnaire. Systematic Review Results: Despite poorer psychological and physical well-being over time compared with non-carers, symptoms of depression, perceived burden and stress are stable over time for those who continue to care for their spouse at home. Mixed results are obtained for carer well-being when examining transition to permanent placement in care home and impede definitive conclusions. Empirical Study Results: Spousal carers report more frequent feelings of fear and frustration compared to other basic emotions. Gender and care transition impact upon the experience and regulation of emotion and positive growth. Internalising emotion regulation strategies (for example, rumination) are associated with greater fear and frustration, sadness and guilt while strategies comprising social support seeking are associated with feelings of happiness in carers. Spouses report positive growth since taking on the role of carer and this is predicted in part by social support seeking emotion regulation strategies but not by experience of emotions. Conclusions: Spousal carers are not a homogenous group. Further research on the experience of spousal dementia carers is required. This should include the development of tools and methods tailored to capture emotion regulation. The concept of positive growth following stressful events (for example, becoming a carer) may have potential for presenting an enriched understanding of the emotional consequences of the carer experience over time.

Background: Leading researchers have called for more sophisticated research designs in caregiver intervention research; by using theoretically grounded interventions, considering the likely mechanism of action and using appropriate outcome measures. This thesis comprises a systematic review which evaluates the match between psychosocial interventions for dementia caregiver burden and the burden measure used to evaluate them and an empirical study which tests the psychometric properties of two caregiving outcome measures developed in Spain (Caregiver Guilt Questionnaire - CGQ and Dysfunctional Thoughts about Caregiving Questionnaire - DTACQ). The empirical study also considers the role of guilt and cognition (conceptualized as dysfunctional thoughts in Cognitive Behavioural Therapy and cognitive fusion in Acceptance and Commitment Therapy) in predicting depression in dementia caregivers. Systematic review: Results for the effectiveness of psychosocial interventions to reduce dementia caregiver burden are mixed. Caregiver burden is inconsistently defined and measured, which may contribute to the mixed results. This review sought to systematically evaluate the match between psychosocial interventions for dementia caregiver burden and the burden measure used to evaluate them. A systematic search identified 15 studies using the 22 item Zarit Burden Interview as an outcome measure. A systematic review using specified quality criteria indicated a low level of congruence between the content of the psychosocial interventions and the content of the Zarit Burden Interview used to evaluate the interventions in the majority of studies. Methods: 221 informal familial dementia caregivers completed a cross sectional postal questionnaire survey. Results: Using exploratory factor analysis, the factor structures of the CGQ and DTACQ identified in the Spanish development studies were replicated in this study. Adequate internal consistencies were found for both scales. Convergent validity was established for the CGQ with the measures of guilt and depression. The DTACQ correlated positively with general dysfunctional attitudes and negatively with amount of support received as predicted, but did not correlate significantly with depression. A multiple regression analysis identified caregiver guilt and cognitive fusion, but not dysfunctional attitudes as significant predictors of depression in dementia caregivers. Conclusion: The CGQ appears to be a reliable and valid measure of caregiver guilt in a British population of dementia caregivers, although further research is recommended to develop the DTACQ. The relative strength of cognitive fusion as a predictor of caregiver depression suggests that the way in which an individual relates to their thoughts should be tested as a mechanism of change in dementia caregiver interventions.

Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called ‘working carers’, there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support. This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT. An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff’s experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers’ experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV). Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened. In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers’ needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier. Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers’ deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.

This qualitative study aims to explore the parents’ or other family members’ experiences in participating in music therapy sessions with their children with special needs. This aim leads to three research questions which were; 1) Can music therapy help to achieve aims set out for individual children with special needs and their parents or other family members 2) What are the functions of music therapy in nurturing communication between the parents or other family members and their children? and 3) How can the music therapist develop ways in which parents or other family members can use music to help their children? Six children who are attending the Special Education Centre, region 9 in Thailand, aged four to twelve years old with their family members who are their primary carers, participated in 24 music therapy sessions. Each session was videoed and the video recordings were discussed every two weeks with the carers. The carers were interviewed three times by the research assistants. Interpretative Phenomenological Analysis was employ to evaluate data collected from interviews. Furthermore, there were two home visits, one after a month when the 24th session was finished and another visit was two months after the 24th session was finished. From the interview analysis, there are 28 themes under five categories namely: 1) The carers’ expectations of the music therapy 2) The carers’ experience of seeing their children in the music therapy sessions 3) The carers’ experiences of seeing themselves in the sessions 4) The carers’ experiences of reviewing the video recordings from the music therapy sessions and 5) The carers’ experiences of using music at home. It can be summarised that music therapy made a positive impact on the children and their carers. The finding highlighted how the music therapy enhanced the social and communication skills of the children. Moreover, involving the carers in the sessions enabled the carers to have positive experiences with their children and these experiences led the carers to see and interact with their children differently. The findings suggest the ways to work with the carers in a therapeutic process and how to encourage the carers to use music at home with their children.

Statement of Problem In the past few years, there has been increased interest in the intravenous administration of antibiotics in the home. The catalyst for this interest has been the need to contain costs and decrease surgical waiting lists in hospitals. However, the scientific evidence for cost containment for home parenteral programs is scant, conflicting and confusing. This study is the first to undertake an economic model based on a cost-benefit framework encompassing both direct and the often-ignored indirect costs. It also examines patient self-administered home parenteral antibiotic therapy (HPAT) within an economic, clinical and humanistic outcomes (ECHO) structure as a source of model inputs. The modelling approach overcomes the analytical and statistical difficulties associated with these early discharge programs due to the small and diverse nature of the populations. Methods and Procedures This study uses data from the Alternate Site Infusion Service (ASIS) at Princess Alexandra Hospital, Brisbane, Australia to populate some fields in the economic model. This service is based on the patient self-administration model and provides early hospital discharge to medically stable patients who require medium to long-term intravenous antibiotics for the treatment of infectious disease. The economic model is described as a probabilistic, second-order, Monte Carlo simulation based on cost-benefit design and constructed from realistic incremental differences in costs and benefits. The multi-dimensional probabilistic sensitivity analysis is used to account for uncertainty present in some of the model inputs. Risk analysis software known as “@Risk” Version 4.5.5 Professional is used to construct the simulation model. The cost and benefit framework, and ultimately inputs, are constructed from primary data emanating from the databases of the ASIS unit, Princess Alexandra Hospital in Brisbane for the period 2001 to 2002, secondary data based on literature reviews, and expert opinion. Societal perspective is chosen to encompass areas such as loss or gain of productivity and carer burden. Clinical outcome is investigated by examining the ASIS database regarding the treatment outcome of HPAT patients. The incidence and mortality rates of nosocomial intravascular bacteraemia (NIB) for hospital and HPAT patients are based on the literature review and included as inputs in the model. Carer burden is determined by the identified carers of ASIS patients with the completion of the mailed Caregiving Distress Scale (CDS) and the Impact of Caring Scale (ICS) instruments. A labour questionnaire was designed to collect data on paid employment, students returning to education and individuals returning to normal daily activities (including forgone leisure activities). The Australian Bureau of Statistics’ (ABS) Australian Standard Classification of Occupations (ASCO) and the ABS gender-specific average weekly wages for nine major work groups are used to estimate productivity of patients and their carers. The value of a hospital bed day was modelled to estimate the value of hospitalisation at the end of a hospital length of stay to avoid using an average bed day cost. The change in the utilisation of nursing, medical and pharmacy human resources due to HPAT is also modelled to avoid using average estimates. A sensitivity analysis is conducted on the value of a hospital bed day to measure the impact on the net benefit. Results The @Risk economic model was undertaken with 10,000 iterations to capture the variability of the net benefit. The value of a hospital bed day appears to have the greatest impact on the net benefit of ASIS with the probability of NIB and incidence of death from NIB in hospital also contributing. The correlation of CDS and the ICS demonstrates a linear relationship, and a total of 93% of carers indicate that they would repeat their participation as a carer. However, most relationships between variables are not statistically significant, or clinically unimportant. Carer burden is suggested to be low in home parenteral antibiotic patients despite the ASIS unit adopting the patient self-administered form of service delivery. However, the number of patients identifying a carer is low and, therefore, there is difficulty in the collection of a suitable sized data set. HPAT failed in 10% of home patients and was fairly comparable with other studies based on the patient self-administered model of service delivery. A total of 58% of HPAT patients (total patients = 123 and 3,939 bed days) returned to work or normal activities with an estimated productivity gain of $190,045 for the economic model of 3,964 bed days. Lost productivity for carers emanating from the survey research was estimated to be $118,121 for the economic model of 3,964 bed days. A mean cost difference of $19,584 between the hospital and home NIB, based on literature probability rates, was estimated indicating a benefit to the HPAT with regard to NIB. Overall, the @Risk model for the ASIS patients representing 3,964 bed days calculated a mean net benefit of $2,450,163 for the HPAT program. A 50% reduction in a hospital bed day value to $253 still resulted in a mean net benefit of $1,447,273 – and a zero net benefit resulted when the value of a hospital bed day reached $112. This suggests that the HPAT program, based on a patient self-administered model of service delivery, represents a viable option for healthcare delivery.

Introduction: Emergency department usage for non-urgent care has been identified as an issue worldwide. Many health professionals have an opinion as to why parents seek care for their children at an emergency department. In Australia, although it is known that there is increasing usage of paediatric emergency departments for non-urgent care; there is a paucity of research on the reasons for this high usage. Aim: This study aims to provide a better understanding of the motivations and actions of parents of children with non-urgent injury or illness who attend the emergency department (PED) at a tertiary paediatric hospital seeking care. Method: This study was designed as a cross sectional descriptive survey to ascertain information fiom parents about their care-giving and care-seeking behaviours prior to presenting with their child to the paediatric emergency department (PED) for professional assessment and treatment. Demographic characteristics were compared with those of the general population to ensure representativeness. Results: A total of 355 parents were surveyed in the three-month period between May and July 2005. This represented 8% of the parents/carers who had presented to the PED for nonurgent (Australian Triage Score Category 4 and 5) care of their child. Just over half of the children presenting were male (185 (53%)) with an overall mean age of 5.45 years (*SD 4.25). The factors the study identified as seminal as to why parents sought care for their child at the paediatric emergency department are that parents rated their child's condition as moderate to very serious (242 (68%)) and that two thirds of parents (234 (66%)) had sought advice prior to attending PED. Other pertinent factors identified were that 54% of children attended with an injury (137) presented promptly to PED (i-e. within four hours of injury) whereas of those presenting with illness (88 (41.3%)) presented within two to seven days of the onset of the illness. The majority of children attended with an illness (213 (60%)) and of these, 98% had medication administered prior to presentation to PED. The presenting child was most likely to be the youngest sibling. Conclusions: The results of the study highlight the accuracy of 'parental triage', that is that parents assess their child's health, and generally engage in appropriate care-giving and careseeking behaviours before presenting to paediatric PED. This study highlights the deficiencies in current primary care services available to families and the perception that not all cases deemed as non-urgent by the emergency department are able to be dealt with in a primary care setting. In recognising that presentation is multifactorial, an issue that needs to be addressed is that there will always be non-urgent presentations at the paediatric emergency department and service delivery and W i g models need further development to address the increasing paediatric requirements for care. In identifying these multiple factors, this study will provide a solid base for future planning within paediatric hospitals, the emergency department setting and in provision of care in the community.

One of the major issues of mental health provision in Indonesia is related to services for carers of people with serious mental illnesses. Very basic and limited services have been offered to the carers. Understanding the needs of Indonesian carers is of key importance before developing appropriate interventions for them. The aim of this study was to explore the needs of carers from mental health hospital services in Indonesia from the perspectives of carers, service users and professionals. It consisted of three separate, but, interrelated studies: (1) a review of international literature about carer needs from mental health services and Indonesian policies relating to carers contribution in the services, (2) focus groups with carers and service users, and (3) individual interviews with professionals. In the first stage, 40 studies eliciting the needs of carers from mental health services were reviewed systematically. The results could not provide adequate information of carer needs which were suitable to an Indonesian context. Therefore, reviewing additional literature of 15 policy documents relating to the contribution of carers in mental health services in Indonesia was conducted. The policy review showed that the need of involving carers in the services was acknowledged, but there has not been clear and strong political endorsement ensuring the carers to receive adequate supports based on their own needs and for their own wellbeing. In the second stage, focus groups with carers and service users were undertaken to explore the needs of Indonesian carers and how mental health hospital services could help to meet those needs. In total, 9 focus groups were conducted, seven with carers (n=33) and two with service users (n=13). All carer and service user participants were recruited from two government mental health hospitals in the capital city of Indonesia. The data were analysed by using framework analysis (Ritchie and Spencer 1994), and resulted in four themes: experiences in caregiving, carer needs from mental health hospital services, current support for carers, and recommendations for service improvement. In the third stage, individual qualitative interviews with health professionals were conducted to explore their views of what Indonesian carers need from the mental hospital services, the extent to which the current services have met the needs, and ideas for service improvements. The interviews involved 24 practitioners from a wide range of health professions, recruited from the hospitals where the earlier focus groups were completed. Framework data analysis (Ritchie and Spencer 1994) was adopted and produced five major themes: Professional views of why services should involve carers, professional views of what carers need for ill relatives, professional views of what carers need for own wellbeing, focus of current contact, and perspectives of support provision. The synthesis of the findings sourced from the focus groups and interviews was completed by adopting a thematic approach (Harden and Thomas 2008). This resulted in overall identifications of the needs of carers for own wellbeing as well as for ill persons, current support provision the carers and recommendations for service improvement within an Indonesian context. The synthesis could also identify similarities and differences between the groups of carer, service user and professional participants in viewing the needs of carers. The findings were valuable resources to aid in the design of a need-based and culturally sensitive intervention for carers in the country.

Carer-employees are defined as individuals who provide unpaid care to a disabled / ill dependent person(s) while working full-time in the paid labour force. In Canada, there are 6.1 million carer-employees, many of which are experiencing work-life balance struggles, which may result in ill-health. To minimize negative impacts, there is interest in developing caregiver-friendly workplace policies (CFWPs) as an intervention strategy to improve CEs’ work-life balance. However, the effectiveness of CFWPs are still in their infancy and often only focus on the work dimension. One of the most critical dimensions that have not yet been assessed is the activity-travel behaviour of carer-employees, which is largely impacted by the assisted-transport demands of their care-recipient. To contribute to filling in this gap, this dissertation addresses the following objectives: 1) develop an activity-travel behaviour profile of carer-employees using sociodemographic and caregiving characteristics; 2) identify spatial locations with potentially high assisted-transport demand while suggesting new areas to improve mobility independence of care-recipients, and; 3) create and apply a mixed-methods framework that classifies the actual activity-travel behaviour of carer-employees. The purposes of all three objectives are to: contribute to closing the literature gap; visually inform decision-makers and health planners, and; efficiently develop caregiver-friendly transport policies (CFTPs). Highlighted findings show that carer-employees conducting assisted-transport have lower income and are more likely to be tired and overwhelmed than those not performing the transport task (Objective 1). In Hamilton metropolitan area, 38% of the older adult population are not within immediate reach to a vital service, and another 15% are located in potentially high assisted-transport demand areas. Suggested areas for service implementation would improve access for older adults by 18% (Objective 2). Lastly, the framework has classified and ranked three types of activity-travel behaviours (Objective 3). All of these findings have led to the discussion of a multi-pronged implementation strategy for uptake of CFTPs. / Dissertation / Doctor of Philosophy (PhD)

Yes / Population ageing and fiscal austerity are set to increase the reliance on family carers, who already provide much of the support for people with long term health conditions. Although most carers are willing, providing care can be hugely stressful, affecting mental and physical health1 and resulting in social isolation and financial hardship.2 When under strain, carers are less likely to be effective, increasing the risk that the care recipient is admitted to hospital or a care home.3 Health systems could reduce strain on family carers by routinely considering carers’ needs alongside patients’ needs in everyday healthcare decisions—a concept we term “carer proofing”. / none