Recent decades have seen increasing recognition of the importance of patient involvement during patient-professional interactions and promotion of preventative and long term approaches to healthcare for those with long-term conditions. The concepts of 'shared decision making' and 'personalised care planning' have both been advocated by patient groups, policy-makers, professional bodies and academia as best practice. During shared decision making, patients and healthcare professionals work in equal partnership to decide the best course of action. Shared decision making is a central tenet of personalised care planning, as it aims to foster partnerships between patients and healthcare professionals when making decisions, but personalised care planning also describes an overall approach to healthcare that is forward-planning and preventative, rather than episodic and reactive. Despite the breadth of support for such approaches, in reality they are not routinely adopted. Multiple Sclerosis (MS) is a heterogeneous neurodegenerative long term condition, which is unpredictable with limited treatments available. Such uncertainty and complexity position MS as an interesting long term condition to explore decisional and information needs. This doctoral research comprises of three methods stages. Firstly, two systematic reviews assessing the effectiveness of personalised care planning for people with long-term conditions and people with MS were carried out. Secondly, 22 in-depth semi-structured qualitative interviews were carried out with people with MS across the UK to explore experiences of decision making and interactions with healthcare professionals. Purposive sampling was carried out and data saturation determined sample size. A modified grounded theory approach was used and thematic analysis of interview data was carried out. Lastly, a series of structured qualitative interviews were carried out with 6 consultant neurologists. This stage was iterative in that problematic areas identified during analysis of interview data from stage 2 were presented to neurologists in infographic form to further examine issues raised. Framework analysis was carried out on neurologist interview data to examine their interpretations and potential solutions. Although there appears to be some evidence demonstrating that personalised care planning is effective for people with long term conditions, such favourable effects were not demonstrated in the context of MS. Based on the findings from the systematic reviews it is unclear whether personalised care planning is effective for people with MS and there is a clear gap in the literature examining this. Findings from the interview stages suggest there are key areas which are lacking in terms of information and decisional support. Such areas included the type and amount of information around the time of diagnosis, support when choosing disease modifying drugs and discussions about approaches outside mainstream medicine. Findings from neurologist interview data corroborated those from MS interview data, but through examination of issues raised it also highlighted some of the complexities and challenges of involving patients and enacting shared decision making in reality. This research identified key areas that require improvement for people with MS in terms of provision of the information and decisional support. Although in theory personalised care planning and shared decision making are positioned as best practice, in reality it is unclear whether they are effective or appropriate for people with MS. The way in which such approaches are enacted are complex and require careful consideration. Potential barriers and pitfalls identified within this study suggest a lack of clarity in how to respond to challenges and further investigation into how patient involvement is enacted is needed.

Sammanfattning: Syfte: Att belysa barnsjuksköterskors erfarenheter av att bedriva relationsbaserad vård för det förtidigt födda barnet och dess föräldrar. Bakgrund: Aktuell kunskapsgrund redovisar vikten av en familjecentrerad, relationsbaserad, neonatalvård i strävan efter tidig anknytning och självständigt föräldraskap. Bakgrunden redovisar även barnsjuksköterkans erfarenheter av den relationsbaserade vården. Design: En intervjustudie utifrån en kvalitativ ansats, med ett vårdarperspektiv som studiens teoretiska referensram. Metod: Data samlas in under 2015 genom öppna och semistrukturerade intervjuer med 10 barnsjuksköterskor verksamma vid neonatalavdelningar. Som stöd för intervjuerna används en intervjuguide, som testas i en pilotintervju. Materialet bearbetas i en kvalitativ innehållsanalys, och resulterar i tre kategorier, 10 subkategorier och ett tema. Resultat: Resultatet redovisas utifrån följande kategorier: att utveckla en vårdande relation, att använda relationsfrämjande arbetssätt på neonatal, att erfara svårigheter att bedriva relationsbaserad vård. Temat för resultatet är; en varsam och utmanande vägledning. Konklusion: Barnsjuksköterskornas erfarenheter av att bedriva relationsbaserad vård på en neonatalavdelning kan förstås som en varsam och samtidigt utmanande vägledning mot föräldraskap. Att bedriva relationsbaserad vård är en viktig del i att skapa föräldrar på neonatalavdelning och det finns all anledning att fortsätta att utveckla ett relationsbaserat vårdande på landets neonatalavdelningar. / Abstract: Aim: To explore pediatric nurses' experiences of practicing relationship-based care for premature infant and their parents. Background: A family centered, relationship-based, care is significant for pursuing early ties and independently parenting in the neonatal care unit. The backround also reports pediatric nurses’ experiences of relationship-based care. Design: An interview study with a qualitative approach, using caring perspective as a theoretical framework. Methods: The data is collected in 2015 through open and semi-structured interviews with 10 children nurses’ working in neonatal units. An interview guide, tested and validated in a pilot interview, is used as guidance for the interviews. The transcribed data is analysed using qualitative content analysis, and resulted in an overarching theme illustrating the latent content including three categories and 10 subcategories. Results: The findings portrayes in the following categories: development of a caring relationship, relationship promotion practices in the neonatal unit, the difficulties with practicing relationship-based care. The theme is a gentle and challenging guidence. Conclusion: Pediatric nurses' experiences in conducting relationship-based care in neonatal units can be understood as a gentle and challenging guidance on parenting. To engage in relationship-based care is an important part of creating parents in the neonatal care unit and there is every reason to continue to develop a relationship based care.

Collaborative care is a philosophy which guides the work of interdisciplinary teams and patients and their families internationally. It has been demonstrated to improve quality of care, safety, and patient and staff satisfaction, yet applying this philosophy still requires much investigation. This thesis describes processes of change directed towards a vision to enhance collaborative care relationships with patients and families within one hospital site of a non-acute academic health science centre in Ontario, Canada. By building focused conversations around existing patient and family centred education and using an initial conceptual framework of customer service, healthcare providers, mid- and senior level leaders shared their perspectives, negotiated meanings and created innovations to enhance collaborative relationships within the organization. Based within the critical paradigm, a critical collaborative ethnography was constructed with the use of sequential and mixed research methodologies. The ethnography evolved over three phases in a step-wise and additive design during the three year period of study. Phase 1 examined the perspectives of healthcare providers in an exploratory case study which contributed to mid-level leaders’ discussions in Phase 2. Cumulative findings from Phases 1 and 2 were brought to discussions with senior leaders in Phase 3. Members of a participative action research team assisted with research design and study processes. Shared meanings and innovative change ideas were developed and captured through the use of semi-structured focus groups and interviews, survey, participant observation and inductive analysis. A conceptual framework of ‘partners-in-care’ emerged and was used to assist participants to make sense of the values and factors important in their work with respect to collaborative relationships. The research processes facilitated the development of many innovations to enhance collaborative practice within the hospital. The organization was described by the research as undergoing directed change to enhance collaborative care as evidenced through participant self-reports, observed initiatives and the ethnographic descriptions. / Thesis (Ph.D, Rehabilitation Science) -- Queen's University, 2012-06-25 15:06:24.687

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Indiana University-Purdue University Indianapolis (IUPUI) / The PeerSpirit Circle is a non-hierarchical, intentional, and relationship-centered practice of collaboration. There is a lack of scientific knowledge about the phenomenon of the PeerSpirit Circle in nursing or its potential impact on nursing practice, education, research, and the evolution of the profession and health care. The health care milieu is often entrenched in ways of being that do not support sustained change. For vitality to prosper and creativity to abound, paradigmatic shifts and new models of practice that emphasize collaboration are being called for. The purpose and aims of this phenomenological research study are to explore and give voice to the experiences of nurses who have participated in the PeerSpirit Circle model of practice with other nurses. The study includes interviews from five registered nurses from Canada and the United States conducted from 2009–2010 and interpreted from a Gadamerian philosophical hermeneutic perspective. The research findings reveal three themes: (1) experiencing the Circle container” where participants begin to understand the value of intentional preparation of the interpersonal space for safe human interaction and stronger collaboration—there are experiences of gathering, protecting, appreciating ritual, and sharing stories; (2) Experiencing space where protected space seems to be the essential element to inspire the presencing of participants with self and other, which in turn engenders genuine dialogue, a sense of sacred space, and freedom to be authentic; and (3) Experiencing our humanity, an unfolding theme, where participants experience reconnection with and understanding of their deeper humanity, stronger congruence with their core values, deeper experiences of caring and courage, personal and professional growth, and a profound appreciation for belonging to a lineage of nurses. The findings inspire a deeper understanding of barriers to congruence between values and action in nursing and nurses’ need to acknowledge, honor, support, and protect each other’s vulnerability. The implications for nursing practice, education, and research show that the PeerSpirit Circle model is a beneficial for use in all settings.