Background: Quality of care and patient safety have been demonstrated to be at increased risk during care transitions; making older adults with complex medical issues especially vulnerable due to the multifaceted care they require (Coleman, 2003; Cook et al., 2000; Forster et al., 2003; Murtaugh & Litke, 2002; Picker Institute, 1999; van Walraven et al., 2004). While a strong focus on patient issues during care transitions exists in current literature, there is a dearth of knowledge surrounding the role of informal caregivers in this process. As the senior population continues to grow in Canada, it is inevitable that the health system will be increasingly reliant upon informal caregivers to meet the demanding and complex care needs of older adults. This research explored informal caregiver experiences following an older patient’s medical crisis in order to foster a deeper understanding of caregiver needs during transitional care. This work will support efforts to develop viable interventions within formal care settings to better support and prepare individuals for informal care responsibilities (Canadian Caregiver Coalition, 2008; National Centre for Social and Economic Modelling, 2004). Methods: A qualitative, post-positivist grounded theory study was employed to acquire an understanding of the role and needs of informal caregivers during transitional care. Semi-structured interviews were conducted with six community and resource case managers, and informal caregivers of eight hip fracture and two stroke caregivers. Two additional interviews were conducted with hip replacement caregivers. Questions explored individual experiences interacting with and/or providing informal care, and honed in on observed and experienced challenges, support received, and recommendations for future efforts to support care. NVivo8 software facilitated qualitative data analysis through hierarchical coding (Glaser & Strauss, 1967). Results: Six properties of caregiver needs arose from the data, each consisting of several important ideas fostering its understanding. The core concept threading across all properties was building capacity to care. Combined, thematic interpretations were integrated into a comprehensive theory of caregiver needs to support a successful care transition from hospital to home, consisting of three layers: 1) Timeline of caregiver needs; 2) Instrumental needs; and 3) Emotional needs. A member-checking process of the theory consisting of both a focus group and individual interviews indicated high face and content validity, and highlighted priority areas for future interventions. Discussion: The developed substantive theory is a valuable tool for which to understand the instrumental and emotional needs of hip fracture and stroke caregivers along a timeline of transitional care between hospital and home. Focus group and individual feedback indicate strong endorsement for theory adoption as a guiding framework for an intervention strategy to support informal caregivers within formal care settings and throughout the transition home. Results suggest the potential to broaden the conceptualization of the substantive theory to a formal explanation of transitional care needs for other medical crises across numerous types of transitions between formal hospital settings and the community.

Background: Quality of care and patient safety have been demonstrated to be at increased risk during care transitions; making older adults with complex medical issues especially vulnerable due to the multifaceted care they require (Coleman, 2003; Cook et al., 2000; Forster et al., 2003; Murtaugh & Litke, 2002; Picker Institute, 1999; van Walraven et al., 2004). While a strong focus on patient issues during care transitions exists in current literature, there is a dearth of knowledge surrounding the role of informal caregivers in this process. As the senior population continues to grow in Canada, it is inevitable that the health system will be increasingly reliant upon informal caregivers to meet the demanding and complex care needs of older adults. This research explored informal caregiver experiences following an older patient’s medical crisis in order to foster a deeper understanding of caregiver needs during transitional care. This work will support efforts to develop viable interventions within formal care settings to better support and prepare individuals for informal care responsibilities (Canadian Caregiver Coalition, 2008; National Centre for Social and Economic Modelling, 2004). Methods: A qualitative, post-positivist grounded theory study was employed to acquire an understanding of the role and needs of informal caregivers during transitional care. Semi-structured interviews were conducted with six community and resource case managers, and informal caregivers of eight hip fracture and two stroke caregivers. Two additional interviews were conducted with hip replacement caregivers. Questions explored individual experiences interacting with and/or providing informal care, and honed in on observed and experienced challenges, support received, and recommendations for future efforts to support care. NVivo8 software facilitated qualitative data analysis through hierarchical coding (Glaser & Strauss, 1967). Results: Six properties of caregiver needs arose from the data, each consisting of several important ideas fostering its understanding. The core concept threading across all properties was building capacity to care. Combined, thematic interpretations were integrated into a comprehensive theory of caregiver needs to support a successful care transition from hospital to home, consisting of three layers: 1) Timeline of caregiver needs; 2) Instrumental needs; and 3) Emotional needs. A member-checking process of the theory consisting of both a focus group and individual interviews indicated high face and content validity, and highlighted priority areas for future interventions. Discussion: The developed substantive theory is a valuable tool for which to understand the instrumental and emotional needs of hip fracture and stroke caregivers along a timeline of transitional care between hospital and home. Focus group and individual feedback indicate strong endorsement for theory adoption as a guiding framework for an intervention strategy to support informal caregivers within formal care settings and throughout the transition home. Results suggest the potential to broaden the conceptualization of the substantive theory to a formal explanation of transitional care needs for other medical crises across numerous types of transitions between formal hospital settings and the community.

This thesis explores the experiences of young people who are survivors of childhood cancer, their parents, health care professionals (HCPs), and case note documentation, of the process of transition from paediatric to adult cancer services. A qualitative, collective case study approach (Stake, 1995), informed by a constructivist-interpretive position, allowed exploration of the multiple realities prioritised in this study. Whilst there is a significant body of literature relating to transition for conditions such as rheumatology and cystic fibrosis, there is little research undertaken into transition in a cancer context, specifically so from an experiences perspective. This study aimed to re-address this issue. The experiences of twelve young people were explored in this study. This resulted in the participation of twelve cases, meaning a total of 35 individual, semi-structured interviews were conducted with young people, parents and HCPs. Young people’s case notes (22 sets) were also reviewed. Data were analysed using matrix-based approaches advocated by Miles and Huberman (1994), at both the within- and between-case level. This generated a multi-dimensional and multiple perspective understanding of the experience of the process of transition. The results of this study clearly identified a central orienting theme: The experience of readiness in the context of transition. Three main themes and six sub-themes were also identified within the data, supporting the explanatory power of the orienting theme. The main themes identified were: The experience of childhood cancer; Planning and preparation: Transition or transfer?; and A process of change. The findings demonstrate that understanding the multi-faceted components of readiness is crucial in understanding people’s experiences of readiness. Readiness should embody people’s illness experiences, the numerous and associated losses intertwined with a move from paediatric to adult care and the simultaneous developmental changes occurring in people’s lives. Only by doing so shall a meaningful understanding of the experience of the process of transition for survivors of childhood cancer, their parents and health care professionals be developed. The thesis concludes by making recommendations for future research and clinical practice.

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The period of health care transition (HCT) for adolescents and emerging adults with special health care needs and disabilities involves a complex realignment of the parent–child relationship, including alterations in role responsibilities and decision making. The purpose of this systematic review was to analyze the research designs, methodology, and findings reported in studies of parents during this transition period to provide new insights for research and clinical practice. Results showed that parents were unable to clearly envision what the future held for their children and were not well prepared by the service system to anticipate future prospects. These parents have a myriad of needs that are not yet fully understood, as HCT research is in the early stages of development.

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