Den ombokade resan : att leva som familj med kronisk sjukdom

Aim: The overall aim was to generate deepened knowledge and understanding about families’ experiences of living as a family with chronic illness. The four studies aimed to: illuminate the meaning of living as a family in the midst of chronic illness (I), illuminate illness beliefs in those families (II), illuminate the meaning of place for family well-being (III) and describe the experiences of encounters with health care in families living with chronic illness (IV). Methods: All studies had qualitative designs and a Family Systems Nursing perspective. Data was collected through family interviews with families where an adult family member had lived with chronic illness for more than two years. The used analyses were phenomenological hermeneutic (I,III), hermeneutic (II) and content analysis (IV). Results: Living as a family with chronic illness was a continuously ongoing process where families co-created a context for living with illness and alternative ways for everyday life (I). Core and secondary beliefs within and across families about illness, family, and health care were revealed and showed for how families responded to and managed situations due to illness (II). Further, the meaning of place for family well-being was described as “a shared respite”, i.e. a place for relief, reflection and re-creation. It seemed to be important for families to be in secure places to enhance well-being (III). Living with chronic illness also includes frequent encounters with health care professionals and having an accompanying member constituted a great power. It helped families to get opportunities to collaborate, and receiving confirmation in the encounters (IV). Conclusions: Living as a family with chronic illness is a continuously ongoing process where family members constitute support for each other. Families have a common desire to handle challenges and changes due to illness and to co-create new patterns for everyday living. Therefore, if nurses adopt a Family Nursing Perspective and involve families in health care, families’ strengths and resources can be facilitated. Then, family well-being can be strengthened

Experiences of encounters with healthcare professionals

Aims and objectives: To describe and explore the experience of healthcare encounters in families living with chronic illness. Background: Living with chronic illness is a family concern and often includes frequent encounters with healthcare professionals. These encounters affect how persons with illness and family members handle everyday life. Disease-related explanations are perceived by healthcare professionals as being of higher importance than the actual experience of illness, even though patients are concerned with issues involving their everyday life. Design: A descriptive design with a qualitative approach. Methods: Narrative family interviews were conducted with twelve families, using a qualitative content analysis. Results: One main category was indicated following analysis, specifically “The impact of an accompanying family member.” Additionally, three subcategories were revealed; “The importance of collaboration,” “Mutual understanding,” “A desire to be confirmed in one’s illness”. Conclusions and relevance to clinical practice: 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

Pedagogical challenges at clinical skills centres in nursing education : A phenomenographic study

Aim To describe educators' conceptions of the pedagogical challenges involved in teaching practical topics to nursing students at clinical skills centres (CSCs). Design A qualitative descriptive design. Methods The study used a phenomenographic approach. Data were collected through individual qualitative interviews with 17 educators teaching at CSCs, between November 2020 and March 2021. The checklist called Consolidated Criteria for Reporting Qualitative Research for qualitative research was used. Results Three categories of description emerged regarding the educators' conceptions of the pedagogical challenges: teaching with credibility, teaching with confidence and creating a conducive learning environment. These conceptions were interrelated based on the way that the teaching was performed. Further, the results indicate that educators had to manage two different professional areas, that is, nursing and pedagogy, which both needed to be integrated in order to create the right learning environment. Conclusion To increase competence and confidence, it is recommended to develop educational course for the educators at the clinical skills centre where pedagogy and nursing are intertwined. Implications for the Profession This study indicated the need for educators to be prepared with credibility and confidence when teaching at CSCs to create a conducive learning environment. In order to develop this, it is key to provide support through formal and informal mentoring and entail the need for educators to combine the two roles of nursing and pedagogy. Reporting Method Consolidated criteria for reporting qualitative research (COREQ). Public Contribution No patient or public contribution

A shared respite : the meaning of place for family well-being in families living with chronic illness

Abstract Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as ‘‘a shared respite.’’ This main theme included three subthemes: ‘‘a place for relief,’’ ‘‘a place for reflection,’’ and ‘‘a place for re-creation.’’ These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places. Key words: Family systems nursing, place security, sense of place, family well-being, chronic illness, phenomenologica

Teaching practical topics to nursing students at clinical skills centres : A total mapping of Swedish universities

Teaching practical topics is a central part of nursing education. The aim of this study was to describe the teaching of practical topics to nursing students at clinical skills centres (CSCs) in Sweden regarding organisation, structure and content. Data collection consisted of structured and open-ended questions through telephone interviews with responsible educators at all Swedish Universities (n = 25). The analyses consisted of descriptive statistics and compilation. The results showed that teaching of practical topics varied, depending on each university’s pre-requisites, and a lot of resources were needed. Teaching at CSCs enabled integration of practical and theoretical knowledge. Having large student groups and confusion over terms hamper the teaching, and there was lack of a specific education for the educators at CSCs. Teaching practical topics at CSCs is a complex task, and educators need competences in nursing, theoretical knowledge and pedagogy

Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study

Abstract Background Among those elements establishing decent quality of care from a patient perspective, opportunities to participate in accord with one’s individual needs and preferences are central. To date, little is known the extent of preference-based patient participation in kidney care, and what facilitates optimal conditions. This study investigated i) preference-based patient participation in kidney care over time, and ii) the effects of interventions designed to enhance person-centred patient participation. Methods A quasi-experimental study was conducted across nine kidney care sites in southeast Sweden. A cohort of 358 patients with stage IV chronic kidney disease (eGRF 15–19 ml/min) or V (eGRF < 15 mL/min) entered the study. Of these, 245 patients (with kidney replacement therapy or intermittent outpatient visits only) completed a survey on patient participation at four time points: every six months from August 2019 to May 2021, patients reported their preferences for and experiences of participation using the validated Patient Preferences for Patient Participation tool, the 4Ps. Between the first and second data collection points, interventions were provided for designated staff to facilitate person-centred participation, using two strategies for two subgroups at three sites each: the managers receiving a bundle of information via e-mail on patient participation in a standard dissemination procedure (three sites), or an additional half-year support program for implementation offered to 1–2 staff per site (three sites), with no intervention for a control group (three sites). The differences in 4Ps data between groups were analysed using multilevel ordinal regression. Results Over time and across all sites, most patients’ experiences of participation fully or almost fully matched their engagement preferences (57%–90%). Still, up to 12% of patient reports indicated that their preferences and experiences were insufficiently matched: in these cases, the patients had preferred to be more involved than they had experienced, for example, in making healthcare plans and setting health-related goals. The interventions did not affect the levels of preference-based participation, but patients in the control group sites had slightly more consistent matches. Conclusions Living with kidney failure necessitates patient engagement, but opportunities to participate in accordance with one’s preferences are not fully provided for all patients. Additional efforts to support a common understanding and to ensure person-centred patient participation is still needed

Additional file 1 of Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study

Additional file 1

A Qualitative Analysis of Personal Health Care Challenges Experienced by Iranian Divorcees

Divorce, nowadays an increasingly more prevalent life event in Iran, can create poor general health among Iranian women, possibly due to bigger challenges for health-related behaviors. The aim was to explore challenges to achieve health-related behaviors as experienced by divorced Iranian women acting as household-heads. An inductive exploratory design based on qualitative content analysis was utilized. Twenty strategically selected divorced women acting as household-heads in Tehran were interviewed between September 2019 and January 2020. The divorced women experienced individual-centered and social and environmental-centered challenges concerning their health-related behaviors. Lack of competence, lack of personal control, and lack of emotional support were described as individual-centered barriers. Lack of community-based support, lack of financial support, and lack of labor market support were described as social and environmental challenges to health-related behaviors. A wide range of individual, social, and environmental-centered factors hindered divorced women acting as household-heads to engage in health-related behaviors. Therefore, person-centered interventions are necessary alongside efforts to develop appropriate policies and amend protection laws to increase the welfare and health of divorced women acting as household-heads