Bakgrund: Att vårda en närstående med livshotande sjukdom innebär ett stort ansvar och uppgiften kan både upplevas svår och tung men kan även vara en källa till tillfredställelse då man kan göra något för sin närstående. Flera studier har visat att situationen kan vara förknippad med negativa konsekvenser för närståendevårdaren. Förberedelse för att vårda är en faktor som visat sig ha samband med mer positiva konsekvenser av att vårda. Syfte: Att beskriva närståendes erfarenhet utifrån berättelser om förberedelse för att vårda sin partner i hemmet under pågående palliativ vård Metod: Kvalitativ intervjustudie, kvalitativ innehållsanalys. Deskriptiv design. Resultat: Analysen utmynnade i ett övergripande tema, Förberedelse i medvetenhet om döden och två teman; Strävan efter något att förhålla sig till i förberedelsen för det värsta; Förberedelse för att vårda en partner i livets slut- en utmaning ett ansvar och en möjlighet. Diskussion: Förberedelse för att vårda en partner i livets slut tolkades som en transition med betydelsen förberedelse i medvetenhet om döden. Två sätt att förhålla sig till döden och framtiden fanns; att skjuta upp förberedelsen eller att förbereda sig. De närstående förberedde sig trots ovisshet genom strävan efter något att förhålla sig till. Förberedelse för att vårda beskrevs som ett ansvar, en utmaning och en möjlighet. Det upptäcktes efter hand vad vårdarrollen och den förändrade relationen skulle innebära. Detta kunde upplevas antingen positivt eller negativt. / Background: Caring for a family member with a life limiting illness is a big responsibility and it can be experienced as difficult and as a burden but it can also be a source of satisfaction doing good for a loved one. Studies have shown that the situation can be associated with negative consequences for the caregiver. Preparedness is a factor that is associated with positive outcomes of caregiving such as higher levels of wellbeing, less anxiety and higher rewards of caregiving. Aim: To describe caregivers experiences from their stories about preparedness when caring for a partner during palliative care. Method: The study design was descriptive using qualitative in depths interviews and qualitative content analysis. Result: One overarching theme emerged which was Preparedness for caregiving in awareness of death, and two themes witch were Striving for something to relate to when preparing for the worst and Preparedness for caregiving-challenges, responsibilities and possibilities. Discussion: The event could be seen as a transition that caused a major change in the lives of the participants influencing meaning, roles and actions. The overarching theme Preparedness for caregiving in awareness of death could be seen as the meaning influencing the transition and a change in values and priorities in the lives of the participants and in different ways of dealing with the situation. Nurses have an important role and may through a person centered approach understand and increase preparedness through knowing what the transition means for the caregiver and where in the process he or she is.

abstract: Emerging adulthood--a developmental point in the life span (usually between the ages of 18-25) during which children no longer see themselves as adolescents but would not yet consider themselves adults--is marked by identity exploration and discovering new life directions. When emerging adults find themselves serving as caregivers for their parent during a time when they would normally be establishing autonomy and exploring new directions, they may feel conflicted by their desire to both care for their parent and maintain a sense of independence. Thus, using a multiple-method research design that includes both an autoethnography and a qualitative content analysis of young adult caregivers' online posts, this study intends to uncover the dialectical tensions (the interplay of communicative tensions within a relationship) an emerging adult daughter experiences in her relationship with her mother as she serves as her caregiver, experiences her death, and grieves her passing by analyzing the author's personal narrative. To provide a deeper understanding of the dialectical nature of the emerging adult caregiver experience, the study was extended with an examination of other young caregivers' experiences, drawn from online forums, to explore how they encounter tensions within their own relationships with their parents. An analysis of the personal narrative revealed one primary dialectical tension, separation-connection, and three interrelated tensions--predictability-change, openness-closedness, and holding on-letting go--that seemed to influence this primary tension. Results of the qualitative content analysis revealed that other caregivers experienced one primary dialectical tension, sacrifice-reward, and two additional, interrelated tensions: independence-dependence and presence-absence. A comparison of the findings from each methodological approach revealed both similarities and differences in experiences of emerging adult caregivers. / Dissertation/Thesis / M.A. Communication 2010

Serving children with special health care needs (SHCN) or developmental disabilities (DD) and their families is an important public health issue (Healthy People, 2020). The prevalence of children with special health care needs or developmental disabilities is significant and increasing (Boyle et al., 2011). Caregivers of children with SHCN or DD and their families demand clinical and research attention given the potential range of health and well-being outcomes that are associated with their children’s developmental or medical complexity. The purpose of this dissertation study was to use a quantitative descriptive research design to examine the experiences of pediatric parenting stress and family support for a sample of caregivers of children representing diverse special health care needs or developmental disabilities. Data were collected at four agencies that provide a range of services to children with SHCN or DD and their families. The data for 167 caregiver participants were used for the preliminary and main statistical analyses. Statistical analyses including pearson product moment correlations, independent-samples t-tests, one-way analysis of variance (ANOVA) tests, internal consistency reliability analyses, and factor analyses. Present study findings revealed that (a) the Pediatric Inventory for Parents (PIP) and Family Support Scale (FSS) measures did not appear to be internally consistent for this study sample; (b) the existing PIP and FSS factor structures did not fit the present study data well; (c) the present study sample had higher levels of pediatric parenting stress and lower levels of family support overall as compared to previous study samples of caregivers for children with chronic conditions; (d) the current study sample’s experiences of pediatric parenting stress and family support differed significantly by several caregiver, child, and family correlates; and (e) the current study sample’s levels of pediatric parenting stress and family support had a positive, significant association. Study findings emphasized the potential roles of stress and support in the caregiving experiences for children with SHCN or DD. Recommendations for further study of this caregiving population and their families are discussed.

Background and Aims: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) remains a poorly understood condition, shrouded in uncertainty and dispute. Research suggests this context to have a profound bearing on those touched by the condition, impacting significantly on their experience and the narratives constructed thereof. However, no studies examining the narratives of partners of individuals affected by CFS/ME appear to have been carried out to date. Based upon this gap in the literature, this study sought to hear the narratives of partners of adults living with CFS/ME, giving particular consideration to the ways in which these narratives were told to an outsider, and how the outsider may have influenced the narrative. Methodology: This study drew on a qualitative approach. A purposive sample of six partners of adults affected by CFS/ME (4 men and 2 women) was recruited. Individual interviews were conducted that were audio-recorded and transcribed. Narrative analysis was used to analyse the transcripts, focusing principally on how participants narrated their accounts, as well as on the content of narratives and the narrative and discursive features that shaped the telling of the accounts. Analysis and Findings: Multiple readings of the narratives identified two areas of collective focus within participants' accounts - 'stories from then' and 'stories from now'. Some similarities in how 'stories from now' were told were seen to emerge down gender lines. Notably participants' storytelling could be seen to represent a form of response to wider narratives that purvey around CFS/ME, with participants' being observed to construct particular meanings around CFS/ME, as well as particular 'identities' of themselves, their partner, their relationship and 'others' who had played a key role in their story of living with the condition. The findings are discussed in terms of their potential bearing for clinical practice and future research endeavours. In addition, the strengths and the limitations of the research are considered.

Robotics agents are meant to play an increasingly larger role in our everyday lives. To be successfully integrated in our environment, robots will need to develop and display adaptive, robust, and socially suitable behaviours. To tackle these issues, the robotics research community has invested a considerable amount of efforts in modelling robotic architectures inspired by research on living systems, from ethology to developmental psychology. Following a similar approach, this thesis presents the research results of the modelling and experimental testing of robotic architectures based on affective and attachment bonds between young infants and their primary caregiver. I follow a bottom-up approach to the modelling of such bonds, examining how they can promote the situated development of an autonomous robot. Specifically, the models used and the results from the experiments carried out in laboratory settings and with naive users demonstrate the impact such affective bonds have on the learning outcomes of an autonomous robot and on the perception and behaviour of humans. This research leads to the emphasis on the importance of the interplay between the dynamics of the regulatory behaviours performed by a robot and the responsiveness of the human partner. The coupling of such signals and behaviours in an attachment-like dyad determines the nature of the outcomes for the robot, in terms of learning or the satisfaction of other needs. The experiments carried out also demonstrate of the attachment system can help a robot adapt its own social behaviour to that of the human partners, as infants are thought to do during their development.

China’s rural-urban migration has resulted in 61 million children living apart from their parent(s) in rural communities. Previous studies have failed to examine the long-term effects of parental migration on left-behind children’s nutritional health, and have not examined the gender differences (of parents and children) in those associations. This research uses a mixed-methods design that incorporates quantitative and qualitative techniques to explore links between parental migration, care-giving arrangements and left-behind children’s nutritional health in rural China. The quantitative analyses draw on a longitudinal dataset – the China Health and Nutrition Survey (CHNS) (1997, 2000, 2004, 2006, and 2009) to examine the relationships between children’s nutritional outcomes and different patterns of parental migration including being left behind in different stages of childhood, and being left behind by the father or the mother. The qualitative component consists of analyses of interviews with 32 caregivers (21 grandparents, 9 mothers, and 2 uncles/aunts), and children’s diaries (26 children aged 6-12, 21 left-behind children and 5 non-left-behind children) to explore the care-giving practices for left-behind children from the perspectives of a group of children and their caregivers in rural northern central China. Results of the quantitative analyses show negative associations between parental migration, especially maternal migration, and left-behind children’s nutritional outcomes indicated by anthropometric measures and macronutrient intakes, and this is particularly true for boys left behind during early life in rural China. The qualitative findings highlight the importance of socio-cultural factors, since there seems to be a paradox of intergenerational obligations for boys in a culture where sons are more valued than daughters. This is because parents migrate to save for their sons’ adult lives, reducing the remittances sent to support their sons who stay behind. There is less pressure to save for daughters’ adult lives and so more potential for remittances to support their nutrition. The research also recognizes the importance of grandparents as carers, and their experiences and beliefs about healthy eating for children. Grandparents, particularly on the paternal side, are expected to fulfil social obligations to care for left-behind grandchildren even without immediate financial returns. Inadequate financial support from the migrant parents of left-behind boys in rural China, in particular boys cared for by paternal grandparents, may result in greater risk of poor nutrition during the early childhood. This potentially renders such left-behind boys vulnerable to developmental delays. These findings are important for policy-makers to develop effective interventions to improve left-behind children’s nutritional well-being in rural China.

"Troubling Breath," the product of fourteen months of fieldwork, examines the experience of tuberculosis sufferers in rural Rajasthan, India. In it, I engage the Indian national tuberculosis control program, local health institutions, informal biomedical providers, non-biomedical healers and sufferers to consider how global tuberculosis control initiatives interact with social life and subjectivity among the rural poor. I ask how tuberculosis affliction and healing builds and reveals the diversity and limit of relationships between state and citizen, individual and kin, body and social, global and local, and formal and informal healthcare. / Anthropology

Introduction/ Objectives: Stroke, the third leading cause of death in Canada, is projected to rise in the next 20 years as the population ages and obesity rates increase. Family caregivers fulfill pertinent roles in providing support for family members who have survived a stroke, from onset to re-integration into the community. However, the transition from rehabilitation to home is a crucial transition for both the stroke survivor and family caregiver. As the stroke survivor transitions home from a rehabilitation facility, family caregivers provide different types of support, including assistance with navigating the stroke rehabilitation system. They also are a constant source of support for the stroke survivor providing them with continuity during the transition. In this exploratory study we examined family caregivers’ perceptions and experiences navigating the stroke rehabilitation system. The theories of continuity care and complex adaptive systems were used to examine the transition home from hospital or stroke rehabilitation facility, and in some cases back to hospital. Methodology: Family caregivers (n=14) who provide care for a stroke survivor were recruited 4-12 weeks following the patient’s discharge from a stroke rehabilitation facility. Interviews were conducted with family caregivers to examine their perceptions and experiences navigating the stroke rehabilitation system. Directed content analysis was used to explore the perceptions of family caregivers as they reflected on the transitions home. The theories of continuity of care and complex adaptive systems were used to interpret their experiences. Results/Conclusions: During the transition home from a rehabilitation facility, family caregivers are a constant source of support, providing the stroke survivor with continuity. Emergent themes highlight the importance of the caregiving role, and barriers and facilitators that impact the role, and influence continuity of care. Also, supports and services in the community were limited or did not meet the specific needs of the family caregiver. The acknowledgment of the unique attributes of each case will ensure supports and services are tailored to the family caregiver’s needs. Mitigation of systemic barriers would also decrease complexity experienced at the micro-level in the stroke rehabilitation system, and better support the family caregiver during the transition home from a stroke rehabilitation facility.

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