The emergence of negotiated family care in intensive care - a grounded theory approach

This thesis describes a qualitative enquiry into the experiences of families visiting an adult intensive care unit (ICU) during a critical illness of a family member and nurses’ perceptions of families in this environment. A Grounded Theory approach was taken. Nine families (12 adults, 12 young people) with a family member in intensive care and twenty intensive care nurses in five focus groups contributed their experiences to the study through group interviews. Families described the admission of a family member as a traumatic event. The core experiences of families which emerged in the study revolved around uncertainty. Drawing on Davis’ (1963/1991, 1966) concepts of ‘clinical uncertainty’ and ‘functional uncertainty’ a number of strategies families and young people developed in dealing with the situation were identified. ‘Clinical uncertainty’ captures the unknown and unknowable aspects of critical illness. The ‘Functional uncertainty’ category emerged later in the research process and brings to light management of information disclosure for functional gain as a communication strategy. Functional uncertainty was identified in communications between nurses and families and between parents and children within families. Moreover, young people used the same ‘functional uncertainty’ strategy when disclosing information to peers within the school environment. ‘Keeping normality in life’ and ‘fishing for information’ and the associated strategies were identified as direct responses of young people to clinical and functional uncertainty. The strategies identified provide new insights into how young people process a critical illness event in their families. This emphasises the importance of listening to young people’s voices and the need to include young people in future studies. ‘Nursing in public’ emerged as an overarching theme within the data from nurses’ interviews. The contrasting interests of nurses and families in the context of critical illness became evident when open visiting policies were discussed. The promotion by policy makers and nursing scholars of a patient centred health care service and thus the implicit integration of families into care challenges nurses to adapt their working practices. Whilst this study provides evidence for the importance of integrating families into care it also shows the needs of nurses are in danger of being marginalised. Respecting the needs of families and nurses the question becomes how best to balance the competing needs of both groups. It is suggested that a ‘partnership in care’ approach which is firmly based on negotiations between nurses and families under the leadership of nurses will allow for the emergence of family care in intensive care, to the benefit of patients, families and nurses

Indigenous lands and health access:The influence of a sense of place on disparities in post-stroke recovery in Taiwan

Despite many countries having policies and systems for universal healthcare coverage, health disparity persists, with significant variations in disease prevalence and life expectancy between different groups of people. This focused ethnography explored the post-stroke recovery of Indigenous and non-Indigenous populations in three geographical areas in Taiwan. Forty-eight observations and 24 interviews were carried out with 12 dyads of stroke survivors and family caregivers, revealing their varied experiences of healthcare. Findings indicate that repeatedly engaging in social activities in the same place increases stroke survivors' attachment to the environment, facilitating their reintegration into the community and improving wellbeing following stroke. The significance of ‘place’ in post-stroke life and healthcare access is particularly salient for Indigenous people's recovery. Indigenous people tend to employ cultural symbols, such as Indigenous languages and kinship ties, to define and interpret their surrounding environment and identity. Indigenous people residing within or close to their own native communities make better recoveries than those based in urban settings, who are attached to and yet located away from their native lands. A sense of place contributes to identity, while loss of it leads to invisibility and healthcare inaccessibility. To promote equitable healthcare access, future policymaking and care practices should address the environmental and cultural geography and structural barriers that impede the connection between minority groups and the mainstream community healthcare system. The study findings suggest extending welfare resources beyond Indigenous administrative regions and establishing partnerships between Indigenous organisations and the mainstream healthcare system. Leveraging Indigenous people's attachment to cultural symbols and increasing healthcare facilities staffed with Indigenous healthcare workers could help ease structural barriers, maintain identifiable Indigenous beneficiaries and increase entry points into the mainstream healthcare system.</p

Biographical continuation:Recovery of stroke survivors and their family caregivers in Taiwan

AIM: To explore the experiences pertaining to long-term care services from the perspectives of dyads of stroke survivors and their family caregivers in indigenous and non-indigenous communities. BACKGROUND: Stroke occurrence is a life-changing event associated with quality of life for stroke survivors and their families, especially those who provide primary support. Indigenous people are more likely to experience a stroke at a younger age and have a higher likelihood of hospitalisation and death due to health disparities. Few studies have investigated family dyads or indigenous populations to understand their experiences of coping with changed body-self and to contextualise their reintegration into communities post-stroke. METHODS: Ethnographic fieldwork over nine months in 2018-2019 with indigenous, urban-based, and non-indigenous populations, resulting in 48 observations and 24 interviews with 12 dyads in three geo-administrative communities. FINDINGS: The post-stroke recovery trajectory is illuminated, delineating the dyads' life transitions from biographical disruption to biographical continuation. The trajectory is shaped by seven states involving four mindsets and three status passages. The four mindsets are sense of loss and worry, sense of interdependence, sense of independence, and wellbeing state. The status passages identified in this study are acceptance, alteration, and identification. A community-based and family-centred long-term care system, aligning with medical healthcare and community resources, underpinned each dyad's biographical continuation by: (1) providing rehabilitation that afforded time and space for recovery adaptation; (2) acknowledging the individuality of family caregivers and helping to alleviate their multitasking; and (3) reintegrating stroke survivors into their communities. Key to determining the quality of recovery for the indigenous participants was their reintegration into their native community and regaining of identity. Therefore, integrating post-stroke care into various care contexts and incorporating indigenous-specific needs into policymaking can support dyads in adapting to their communities.</p

Fluctuating power: an exploration of refugee health nursing within the resettlement context in Victoria, Australia

Background: The Refugee Health Program (RHP) is a nurse-led community initiative, introduced in 2005 with the aim of responding to complex health issues of refugees arriving in Victoria, Australia. Little is known about refugee health nursing in the resettlement context and the impact of dedicated refugee healthcare. Aim: To explore the experiences and perspectives of Refugee Health Nurses (RHNs), Refugee Health Managers (managers) and refugees, gaining insight into professional relationships and the complexities of offering a specialised refugee health service. Method: A focused ethnographic approach incorporated semi-structured interviews with five RHNs, two managers and eight refugees, two focus groups with refugees and participant observation within the RHP during April 2017 to December 2017. Data collection was undertaken across two sites and interviews, focus groups and observations were transcribed and thematically analysed. Social constructionism asserts that the focus of enquiry should be on interaction, group processes and social practices. Emphasis is placed upon relationships between RHNs, managers and refugees, with knowledge viewed as relational and interactional. Results: Professional relationships between RHNs and refugees are complex, with power oscillating between them. Contrary to discourses of 'vulnerability' of refugees, both RHNs and refugees demonstrated power in their relationships with each other. Nurses also suggested that these relationships were stressful and could lead to burnout. Key themes were developed: (1) nursing autonomy and gatekeeping; (2) vicarious trauma and burnout; and (3) refugee negotiation of care. Conclusions: The balance of power is central to therapeutic relationships. In relationships between RHNs and refugees, power fluctuates as RHNs are exposed to vicarious trauma and symptoms of burnout, while refugees exercise agency by recognising benefits to specialised care. In developing effective therapeutic relationships between RHNs and refugees, attention should be paid to how care is delivered to protect RHNs from burnout while ensuring that refugees receive appropriate care

A constructivist grounded theory of staff experiences relating to early mobilisation of mechanically ventilated patients in intensive care

From SAGE Publishing via Jisc Publications RouterEarly mobilisation of mechanically ventilated patients has been suggested to be effective in mitigating muscle weakness, yet it is not a common practice. Understanding staff experiences is crucial to gain insights into what might facilitate or hinder its implementation. In this constructivist grounded theory study, data from two Scottish intensive care units were collected to understand healthcare staff experiences relating to early mobilisation in mechanical ventilation. Data included observations of mobilisation activities, individual staff interviews and two focus groups with multidisciplinary staff. Managing Risks emerged as the core category and was theorised using the concept of risk. The middle-range theory developed in this study suggests that the process of early mobilisation starts by staff defining patient status and includes a process of negotiating patient safety, which in turn enables performing accountable mobilisation within the dynamic context of an intensive care unit setting.The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work is part of the first author’s PhD studies funded by Lembaga Pengelola Dana Pendidikan (LPDP) (Indonesia Endowment Fund for Education), grant number 20160222045521. The funder had no role in the design and conduct of the study nor the preparation of the publication manuscript. No other source of funding contributes to this study.9pubpu