Qualitative studies are often found to be accompanied by quotations from interviews or similar data sources. As with any methodological tradition, it is essential to critically explore the general principle of including quotations in scientific papers: what is the purpose and justification for including quotations? Are there standards and, in that case, what are they and what are their scientific positioning? This paper presents an overview of the somewhat diverse guidance found in the literature in reference to the representation of quotations. Yet, both students and scholars use a variety of approaches to quote from their data, ranging from presenting numerous, extensive, and/or comprehensive quotations throughout the results section to the reporting of a few particular quotations to illustrate certain aspects of the findings only. While their function may be described, scientific reasoning for using quotations is scarce. Along with an overview of the scientific background and options for including quotations in qualitative studies, we discuss the consequences of the different epistemological and methodological aspects found in the literature. In conclusion, we argue that there are incentives for promoting a more deliberate employment of references from data; deriving from the human sciences tradition, a corresponding epistemological stance would suggest that quotations preferably apply for illustrating the analysis process and/or findings, while the idea that quotations can be employed to validate findings has limited support. Further critical examination of the application of and justification for including quotations in the reporting of qualitative studies is needed among researchers, journal editors and reviewers.
Aims and objectives The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness. Background Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted. Design A qualitative design with a FSN approach was chosen. Method Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data. Results The phenomenon can be described as an ongoing movement towards well‐being. The results included two themes and five sub‐themes. The first theme was ‘Co‐creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co‐creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’. Conclusions Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co‐create a context for living with illness. They also co‐create a context for alternative ways of everyday life. Relevance to clinical practice Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations together, as well as highlight resources within the family.
Background and objective End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients’ and health‐care professionals’ perspectives. Design This explorative study employed qualitative interviews and content analysis. Setting and participants Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients’ performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed.
Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families' stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed.
Having a participating family member increased the sense of power in families during encounters with healthcare professionals. This participation constitutes a level of support, making it easier for families to handle everyday life due to illness. Family members are, in most cases, included in discussions and decisions, both before and after encounters, and it should be a natural for healthcare professionals to invite them to the encounter too. This is an offer that may not fit every family, but the person with illness or the family should at least have the opportunity to choose.
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