Living with schizophrenia and type 2 diabetes and the implication for diabetes self-care: A qualitative study.

AIM: To achieve an in-depth understanding of the challenges associated with diabetes management when having both schizophrenia and type 2 diabetes, while also identifying the needs for improved diabetes self-care. DESIGN: The study employed a qualitative explorative design utilizing a phenomenological-hermeneutic inspired approach, involving field observations and individual semistructured interviews. METHODS: Data were collected during 2020-2021 through 17 field observations of outpatient consultations and 13 individual semistructured interviews. Data, including field notes and verbatim transcribed interviews, underwent analysis following Ricoeur's interpretive philosophy, encompassing three levels: naïve reading, structural analysis and critical interpretation and discussion. This study adheres to the COREQ guidelines for qualitative research. RESULTS: Three key themes emerged: 'Diabetes when life is noisy', 'Sacrifices and compromises in life' and 'The double silence'. Everyday life is significantly affected when having both schizophrenia and T2D. The mental health state dominates in relation to diabetes self-care and individuals experience challenges balancing between the two conditions. However, there exists a general acknowledgement for diabetes and its long-term complications as a serious medical condition demanding careful attention and treatment. CONCLUSION: Self-managing two such complex conditions can be overwhelming and make it difficult for the individual to differentiate symptoms and prioritize diabetes care. Moreover, the existing fragmentation within healthcare systems poses communication challenges, resulting in disjointed patient pathways. IMPLICATIONS FOR PATIENT CARE: The study emphasizes the need for a holistic re that addresses the physical, emotional and social challenges. There is also a need for increased awareness and education among informal caregivers and healthcare professionals to foster better understanding and support.

Searching for a brighter future-Lived experiences of ongoing recovery processes following COVID-19 infection.

BACKGROUND: Research in Denmark indicates that approximately 30% of people with confirmed COVID-19 infection experience at least one physical symptom 6-12 months after the acute infection. The lived experiences of undergoing prolonged recovery processes and how these processes unfold need further attention. AIM: To contribute in-depth knowledge about recovery, as experienced over time by people living with the post COVID-19 condition. METHODS: Within a qualitative research design, nine women and six men were interviewed. Ten of them gave a follow-up interview. Prompt cards and participant-generated photographs were included. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis. FINDINGS: Living with long-term health problems associated with the post COVID-19 condition involved recovery processes where participants struggled with reduced capacity, new unpredictability and uncertainty in everyday life. Participants continuously searched for improvement and aimed for regaining former health and well-being. Lack of knowledge, acknowledgement and support made it difficult to find clear directions for improvement. Participants created a protective shield and struggled, often jointly with family and friends, to cope with bodily, cognitive, emotional, existential and social challenges. Over time, some participants realised that they might not be able to fully return to their earlier habitus. However, some of them gained a new foothold and sense of hope for the future. CONCLUSION: This study provides in-depth insight into the experience of changing and open-ended recovery processes while living with the post COVID-19 condition. Over time, some participants learned to rebuild their lives, adapting to their reduced capacities. Future care and rehabilitation models for these patients must address the complex and challenging nature of recovery processes associated with living with post-COVID-19 condition.

A life-changing process when living with chronic kidney disease: A qualitative study.

BACKGROUND: Patients with chronic kidney disease and their family members experience a number of lifestyle changes caused by the illness. The value of advance care planning includes understanding health status and options for future care, communication between close family members, and identification of wishes and preferences for care and treatment in relation to family and everyday life. OBJECTIVE: Explore how patients with chronic kidney disease and their families experience everyday life and how they experience having to make choices about treatment. DESIGN: An explorative study using a qualitative method with a phenomenological-hermeneutic approach. PARTICIPANTS: Twelve patients with chronic kidney disease without kidney replacement therapy who were considering their treatment options and eight family members. APPROACH: Individual semistructured interviews with a narrative approach were conducted between August 2021 and March 2022. The data were analysed using Ricoeur's interpretation theory on three levels: naïve reading, structural analysis and critical interpretation and discussion. FINDINGS: One main theme was generated: Family dynamics in a life-changing process. From this, three subthemes were derived: Living in an ordinary life placed in a waiting position, The dilemma of readiness to share and Feelings of being left alone. CONCLUSION: There are changes in family roles and in identity and a desire to maintain the known and ordinary life. Living with chronic kidney disease as a part of daily life is managed differently in the family, which can lead to feelings such as sadness, frustration and loss of shared life and resilience.

Perceptions of haemodialysis nurses regarding patients' and families' loss and grief.

BACKGROUND: The experience of loss and grief in patients' lives with life-long treatment in haemodialysis, and in their families' lives is a major cause of mental health problems. In practice, nurses often describe a lack of time and limited knowledge of how to provide nursing care in situations of loss and grief, thus finding out from nurses' perspectives of what competencies they need to provide care would be useful for the development of nursing practice. OBJECTIVES: To develop knowledge in a nursing perspective of competencies to provide care for patients and their families, who experience grief linked to loss due to kidney failure, haemodialysis and/or death. DESIGN: The study took a phenomenological-hermeneutical approach. Semi-structured interviews were conducted 12 nurses caring for patients receiving haemodialysis with no kidney transplantation option and family members. Ricoeur's interpretation theory involving naïve reading, structural analysis and critical interpretation and discussion was used for analysis. RESULTS: Four themes emerged of nurse's experiences: (1) patient's loss and grief in everyday life, (2) dealing with supportive conversations when caring for patients, (3) families' losses are resulting in grief reactions and (4) importance of close relationships when caring for families. CONCLUSIONS: To nurses, patients on haemodialysis and their families have multiple loss and grief experiences. Nurses' working in kidney care need to develop competencies to support patients and families to cope with grief and loss. Further research is needed to develop these competencies and then to implement in education and practice.

Advance care planning to patients with chronic kidney disease and their families: An intervention development study.

AIM: To develop an advance care planning intervention based on the needs of patients with chronic kidney disease, families and healthcare professionals. BACKGROUND: Patients with chronic kidney disease and their families request early advance care planning that continues throughout their illness trajectory. Healthcare professionals experience barriers to initiating advance care planning. Involvement of stakeholders in development of health interventions is important, to identify priorities, understand the problem and find solutions. METHOD: The development was inspired by the Medical Research Council's framework, and codesign was applied. One future workshop and one design workshop were conducted with the consumers. The process was iterative, and data were analysed using the action research spiral. The Guidance for reporting intervention development studies in healthcare (GUIDED) was used. RESULTS: Five areas were considered significant to an advance care planning intervention; a biopsychosocial approach, early palliative care, a family-focused approach, early and continuous advance care planning and a consumer-centred approach. Based on these, a conversation process with healthcare professionals was designed to give patients and families the opportunity to share values, preferences and wishes for treatment and their family and everyday life. CONCLUSION: Codesign facilitated a collaborative process that allowed the consumers to have a significant impact on the design of an advance care planning intervention. A conversation process concerning everyday life, illness and treatment was designed for patients and families. The intervention included an advance care planning tool to guide the healthcare professionals. PRACTICE IMPLICATIONS: The intervention has the intention to improve the communication between healthcare professionals, patients and families. The study provides important knowledge about the significance of giving the patients and their families support in sharing their values, preferences and wishes for treatment and everyday life, thus, to improve care and treatment in their illness trajectory. IMPACT: What problem did the study address Patients with chronic kidney disease and their families strongly request early initiation of advance care planning that continues throughout the illness trajectory. Healthcare professionals experience barriers to the initiation of the advance care planning and request a more systematic approach. What were the main findings Development of a conversation process about everyday life, illness and treatment for patients diagnosed with chronic kidney disease and families, including an advance care planning tool to guide the healthcare professionals. Where and on whom will the research have an impact The study contributes an advance care planning intervention to patients in the early stages of chronic kidney disease and their families. We believe that the intervention could be included during consultations with healthcare professionals in other stages of chronic kidney disease as well as other chronic disease. REPORTING METHOD: To strengthen the reporting of the development of the advance care planning intervention, we used the Guidance for reporting intervention development studies in healthcare (GUIDED). PATIENT OR PUBLIC CONTRIBUTION: The development of the intervention in this study was a collaborative process between patients, families, healthcare professionals and representatives from the Danish Kidney Association, the department's user council and the research team.

Translation and Cross-Cultural Validation of the Danish Version of the Family Health Scale-Long Form: A Psychometric Study.

OBJECTIVES: The Family Health Scale is a new instrument for evaluating family health. The instrument is reported as valid and reliable in investigating family health among different types of adult family members. This study aimed to translate the Family Health Scale into Danish and investigate its validity and reliability in families with a family member affected by chronic or serious illness. DATA SOURCES: Translation was performed through forward and backward bilingual practice consisting of 10 steps. A cross-sectional study included 406 participants, of whom 94 also participated in a follow-up study within 3 weeks for the test-retest. Content validity was examined by conducting cognitive interviews with nine family members. Internal consistency reliability was assessed using Cronbach α. The test-retest reliability was evaluated using intraclass correlation coefficients. Model fit was assessed using confirmatory factor analysis. CONCLUSION: The Family Health Scale demonstrated good content validity and a moderate model fit. Both Internal consistency reliability and test-retest reliability were satisfying. Cronbach α ranged from 0.73 to 0.89, while the intraclass correlation coefficient value was 0.88. The confirmatory factor analysis estimated a satisfying model fit, with an acceptable root-mean-square error of 0.076 and a moderate comparative fit index of 0.794. IMPLICATION FOR NURSING PRACTICE: The Family Health Scale instrument has the potential to identify vulnerable families or families affected by chronic or serious illnesses, such as cancer. The assessment tool can consequently be used to target interventions to promote family health and improve the health of both the individual and his/her family.

The value of partnership in patient-driven as well as in researcher-driven projects.

Patient involvement in health research is rarely driven solely by patients, who could be considered to have the highest degree of investment in such research. In the Kidney Connect project, the patients have been the driving force. This commentary considers the following questions: How did we, as patients, lead the work as the driving force in the project? What went well and what did not go so well from our perspective? How did the project compare with work driven by researchers? We argue that projects driven solely by either patients or researchers each have their own limitations. Projects driven solely by patients have some limitations in their robustness, rigour, and likelihood of publication. Nevertheless, a project driven solely by patients has been able to produce findings that are broadly comparable to a project driven solely by researchers that employed methods ensuring robustness and rigour. We suggest collaboration between patients and researchers also for projects driven by patients.

Health research often uses patients as either participants or partners. Patients running the research is less common, even though the outcomes might be more important to patients than to anyone else. A medical company started the Kidney Connect project, but invited patients to drive it. The main driving role was planning and conducting data collection and analysis of data for the project. In this commentary, patient representatives describe how they led the project's work, what went well and what did not go so well for patients. It then compares the project's results with those from similar work that involved patients as partners but had only researchers in charge. We found that certain things can limit research that is run only by patients, but it has similar results to a project with only researchers in charge.

Advance care planning in chronic kidney disease: A national Danish survey of knowledge and attitudes among clinicians.

INTRODUCTION: Patients with chronic kidney disease and their families strongly request advance care planning. They want it to start early-before treatment decisions are made-and to be an ongoing process during their illness trajectory. Previous international studies show that health care professionals find there to be significant barriers that impact the extent of involvement in advance care planning. AIM: To identify Danish nephrology health care professionals' knowledge and attitudes to advance care planning and the status of current advance care planning practice in Denmark. METHOD: An anonymous, cross-sectional survey was administrated online. The questionnaire was developed in Australia and translated and culturally adapted into Danish. Health care professionals were recruited via email lists. In descriptive statistics and multiple ordinal regression, the influence of the respondents' attributes on the extent of involvement in advance care planning was explored, along with the involvement of family, and skills, comfort, barriers and facilitators in relation to advance care planning. RESULTS: The 207 respondents comprised nephrologists (23%), other physicians (8%), nurses (62%) and other HCPs (7%), of whom 27% had participated in advance care planning training. In total, 66% indicated that they lacked access to material about advance care planning for patients with chronic kidney disease and 46% indicated that the conversations were performed ad hoc. A total of 47% reported that advance care planning was performed well at their workplace. Reported barriers were time, lack of experience and procedure. Training in advance care planning could facilitate the involvement. Nurses were less likely to feel skilled and comfortable in engaging advance care planning, while those with more than 10 years of experience were more likely to feel skilled and comfortable. CONCLUSION: Training in advance care planning with patients with chronic kidney disease and their families on both a theoretical and clinical level is important to ensure comfort among health care professionals and to facilitate the extent of involvement. A systematic chronic kidney disease-specific approach is significant, in order to guide the conversations and ensure that advance care planning is conducted to a set standard.

Relationships and dynamics in families with a child with a kidney transplant-A study of parents' everyday life experiences.

BACKGROUND: Paediatric kidney transplantation is often the best choice of treatment for kidney failure with replacement therapy and represents an important change in the child's well-being. There are, however, still a number of challenges in addition to the parental role. The magnitude of intensive parental caregiving and support required by children with a kidney transplant could be disruptive to family relationships and dynamics. OBJECTIVE: To explore the experiences of family relationships and dynamics among parents of a child with a kidney transplant. DESIGN: An explorative study using a qualitative method. PARTICIPANTS: Twelve parents (seven mothers and five fathers) of seven children with a kidney transplant were included. APPROACH: A phenomenological-hermeneutic approach was applied. METHOD: Semistructured, individual interviews were conducted. The data were analysed using Ricoeur's theory of interpretation on three levels: naïve reading, structural analysis and critical interpretation and discussion. FINDINGS: Three themes were generated: Emotions during ups and downs in everyday life; Balancing different needs among children; and Opportunities and having consideration in the family. CONCLUSION: Relationships between parents that are based on mutual emotional support are significant and essential during periods of severe illness in a child. Parents who are alone or emotionally marked by their child's disease history feel vulnerable and struggle to overcome challenges. Different health situations among siblings lead to challenges in bringing up the children and emotional dilemmas among parents that impact family dynamics. Resilience in parents is a shifting phenomenon that can influence how they deal with family relationships and dynamics.

Parenting a child with a kidney transplant-A study of everyday life experiences.

BACKGROUND: Kidney transplantation in children shows excellent long-term outcomes. However, parents feel responsible for ensuring that their child adheres to complex medical interventions. The dual role - as both parent and medical caregiver - gives rise to fatigue, stress, and emotional pain. Parental and family functioning are critically important to a child's disease course, development and well-being. OBJECTIVE: To explore the experiences and perspectives of mothers and fathers of children with a kidney transplant. DESIGN: An explorative study using a qualitative method. PARTICIPANTS: Twelve parents (seven mothers and five fathers) of seven children with a kidney transplant. APPROACH: A qualitative exploratory study taking a phenomenological-hermeneutic approach. METHOD: Semi-structured individual interviews were conducted. The data were analysed using Ricoeur's theory of narrative and interpretation on three levels: naïve reading, structural analysis, and critical interpretation and discussion. FINDINGS: Four themes were generated: Kidney transplantation as a turning point, the importance of a close collaboration with health care professionals, being the child's voice, and managing the dual role as a parent, and medical caregiver in everyday life. CONCLUSION: Child kidney transplantation led to a transformation in the child, on the physical, mental, and social levels; however, the child was still in need of special attention and support. Problems with the kidney graft functioning resulted in frustration and disappointment in parents. Teamwork between a child's parents became evident, in coping with the dual role as a parent and medical caregiver. Parents aimed to maintain a clear structure related to medication and disease-related treatment. A close and trustful relationship and collaboration with health care professionals were significant and included listening to the voice of the child.

The importance of an outdoor playground for children with epilepsy and their family during and after hospitalization: A qualitative study of parents' experiences.

OBJECTIVES: To explore parents' experiences of using an outdoor playground during hospitalization with their child with epilepsy. METHOD: The study is based on a qualitative exploratory design. Semi-structured individual interviews were conducted with 10 parents with a child with epilepsy (6-11 years). A phenomenological- hermeneutic approach was taken, inspired by Ricoeur. Data analysis and interpretation have been conducted at three levels: naive reading, structural analysis, and critical interpretation and discussion. RESULTS: During hospitalization the playground was the children's territory, where children felt safe, in control and normality. Parents experienced valuable time with their children through participation, and play facilitated communication and reduced pain and negative emotions. The playground improved parents and children's emotional well-being during hospitalization. Further, it supported coping with epilepsy, and contributed to gain successful experiences thus children developed self-esteem. CONCLUSION: The study indicates that to the parents, an outdoor playground at the hospital environment is valuable for supporting children with epilepsy and their families to cope with hospitalization and everyday life, and it contributes to improve the family's physical, social and emotional well-being. The results emphasize that play at an outdoor playground could be integrated in the care and treatment during hospitalization.

Care and treatment needs of immunosuppressive therapy patients with warts and impact on everyday life: a qualitative study.

INTRODUCTION: Patients receiving immunosuppressive therapy have an increased risk of developing verrucae vulgaris (warts). They often suffer from dissemination of numerous warts, complicated by low treatment response and long-term treatment. How patients experience these challenges is not well characterized. The aim of this study was to explore how patients on immunosuppressive therapy experience everyday life with warts on the hands and feet, and their needs related to care and treatment. METHODS: The study took a phenomenological-hermeneutic approach. Semi-structured interviews were conducted with 10 adults. Data were analyzed using the thematic analysis described by Braun and Clark. RESULTS: Warts on the hands and feet impact everyday life and cause feelings of stigma and pain. Patients request treatment and hope to be cured although the prospects are poor. Self-treatment is experienced as a burden, because of the need for more specific information about and skills to treat the warts, and because individual patients' resources are not considered. Patients experience a lack of care continuity. CONCLUSIONS: Patients request a person-centred care and treatment approach, to establish a relationship with health care professionals. Establishing care continuity might reduce patients' treatment-related insecurity.

Patients' with chronic kidney disease and their relatives' perspectives on advance care planning: A meta-ethnography.

INTRODUCTION: Advance care planning is a process that supports adults of any age and stage of illness in understanding and sharing their values, life goals, and preferences regarding medical care. Chronic kidney disease is a progressive and lifelong disease. Close relatives often represent patients' most important support. Advance care planning is recommended to be a continuous part of a person's ongoing treatment and is not solely related to end-of-life care. However, no studies have focused on advanced care planning for patients with chronic kidney disease earlier than the onset of a terminal illness. AIM: The aim is to describe experiences of and perspectives on advance care planning among patients with chronic kidney disease and their close relatives. METHODS: We conducted a meta-ethnography of studies that used individual, dyad, and focus group interviews. We searched five electronic databases: PubMed, Cinahl, Embase, PsycINFO, and Scopus and reference lists of relevant articles. RESULTS: Seven articles were included. Participants had a need for advance care planning to make shared decisions about treatment and everyday life. The responsibility for initiating advance care planning lay with the healthcare professionals. Differences between advance care planning goals among patients, relatives, and healthcare professionals complicated the advance care planning process. A focus on day-to-day care at the expense of focusing on advance care planning gave an impression of a lack of competencies and interest. For some patients, the involvement of relatives was of significant value; however, it could be associated with burden and pressure. CONCLUSION: Patients with chronic kidney disease and their families have a need for early advance care planning before dialysis or transplantation is initiated, so as to facilitate shared decision-making related to treatment options and everyday life. It is important that patients, their relatives, and healthcare professionals share the same advance care planning goals, to get sufficient discussions and thus, achieve clarity about prognosis, medical care, and the illness trajectory.

Siblings of children with chronic kidney disease: A qualitative study of everyday life experiences.

BACKGROUND: Chronic kidney disease in children has an impact on all family members. Healthy siblings, in particular, may experience negative psychological and emotional symptoms. Little attention has been paid to how they experience everyday family life and the impact of their sibling's disease. OBJECTIVES: To explore perspectives on and experiences of everyday life among siblings of children with chronic kidney disease. DESIGN: An explorative study with a qualitative method. PARTICIPANTS: Seven siblings (7-13 years) of children with chronic kidney disease (5-16 years) were included. APPROACH: The study took a phenomenological-hermeneutical approach. Semistructured individual interviews were conducted. The data were analysed using Ricoeur's theory of narrative and interpretation, on three levels: naïve reading, structural analysis and critical interpretation and discussion. FINDINGS: Three themes emerged: The illness is in the background or comes to the fore, being concerned for and taking care of the sick sibling and the importance of bonds with relatives or other significant adults. CONCLUSION: In everyday life, participants experienced that their sick sibling's illness was either in the background or came to the fore. They needed to adapt to periods of hospitalisation. They felt a need to be attentive to, take care of and have concern for the sick brother or sister. Conflicts caused feelings of loneliness; however, having knowledge about the disease provided security and meaning. Being introduced to the healthcare professionals was significant. It was important to have close relationships with friends and other adults, which gave rise to feelings of self-confidence and being supported.

Improving management of psoriasis patients receiving biological treatment: A qualitative approach.

AIM: To investigate psoriasis patients' and healthcare professionals' experiences and perspectives of follow-up consultations. DESIGN: A qualitative study with a phenomenological-hermeneutic approach. METHOD: Participant observations of consultations and semi-structured interviews were conducted with patients receiving biological treatment, together with two focus groups with healthcare professionals, from June 2018-January 2019. Data were analysed using a qualitative structured approach based on Paul Ricoeur's philosophy of interpretation. RESULTS: Consultations had a strong biomedical and corrective approach focusing on lifestyle behaviour change, measurements and permanent routines. Healthcare professionals felt the need for enhanced competencies providing lifestyle behaviour change support and the possibility of providing patients more specific strategies. They were faced with a dilemma between lacking the right skills and having a professional duty. The frequent follow-up visits did not fit in with the patients' everyday lives.

An mHealth App to Support Patients With Psoriasis in Relation to Follow-up Consultations: Qualitative Study.

BACKGROUND: Teledermatology has the potential to help deliver health care by transforming the relationship between patients and health care professionals (HCPs), shifting the power of consultation so that patients can become more informed, assertive, and involved in their care. Mobile health (mHealth) is a promising and reliable tool for the long-term management of patients with psoriasis on systemic treatment. In an attempt to facilitate a more patient-centered approach in clinical practice, we designed and developed an mHealth solution to support patients with self-management and empowerment. OBJECTIVE: The aim of this study is to explore the experiences and perceptions of patients and health care professionals of using an mHealth solution that was developed using a participatory design approach. METHODS: This was an exploratory qualitative study. Data were collected through semistructured interviews with patients and focus group interviews with HCPs. RESULTS: All participants found it easy to use the mHealth solution, and the patients found it convenient. Patients' reflexivity was improved because they could prepare ahead of consultations. Video consultations provided patients with a degree of freedom in their everyday lives, with not having to attend in-person visits. Among the HCPs, there were concerns regarding their medical responsibilities, as they could not assess the patients' skin as they used to. The mHealth solution required new workflows and procedures that were not part of the existing consultation routines. CONCLUSIONS: The mHealth solution can strengthen the relationship between HCPs and patients and facilitate patients to become more active in their care. Alignment and structure in relation to the selection of eligible patient candidates for being offered the mHealth solution could reduce social health inequalities. In addition, video consultations changed HCPs' work practice, necessitating new types of skills to communicate with patients.

Development of an mHealth App for Patients With Psoriasis Undergoing Biological Treatment: Participatory Design Study.

BACKGROUND: In Denmark, patients with psoriasis undergoing biological treatment have regular follow-ups, typically every 3 months. This may pose a challenge for patients who live far away from the hospital. Mobile health (mHealth) is a promising and reliable tool for the long-term management of patients with psoriasis undergoing biological treatment because the disease course can be properly monitored. Despite recent developments in mHealth, the full potential of teledermatology remains to be tapped by newer, more attractive forms of services focused on patients' needs. OBJECTIVE: This study aims to design and develop an mHealth app to support the self-management of patients with psoriasis using a participatory design. METHODS: Using participatory design, we conducted 1 future workshop, 4 mock-up workshops, and 1 prototype test with patients and health care professionals to co-design a prototype. The process was iterative to ensure that all stakeholders would provide input into the design and outcome; this approach enabled continuous revision of the prototype until an acceptable solution was agreed upon. Data were analyzed according to the steps-plan, act, observe, and reflect-in the methodology of participatory design. RESULTS: Health care professionals and patients emphasized the importance of a more patient-centered approach, focusing on the communication and maintenance of relationships. Patients perceived consultations to be impersonal and repetitive and wanted the opportunity to contribute to the agenda while attending a consultation. Patients also stated they would prefer not to attend visits in person every 3 months. On the basis of these findings, we designed an mHealth app that could replace in-person visits and support patients at in-person visits. Video consultations, self-monitoring, and registration of patient-reported outcome data were embedded in the app. CONCLUSIONS: Using participatory design facilitated mutual learning and democratic processes that gave end users a significant influence over the solution. Despite the advantages of using participatory design in developing mHealth solutions, organizational conditions may still represent a barrier to the optimization of solutions.

When kidney transplantation is not an option: Haemodialysis patients' and partners' experiences-A qualitative study.

Aim: To investigate the experiences and perspectives of everyday life among patients on lifelong haemodialysis and their partners. Design: A qualitative exploratory study with a phenomenological-hermeneutic approach. Method: Data were collected through individual interviews. In total, five patients in haemodialysis and their partners were included in the study. Data were analysed with inspiration from Ricoeur's theory around narratives and interpretation on three levels: naïve reading, structural analysis and critical interpretation and discussion. Data was collected between February 2018-June 2019. Results: Limitations caused by the disease and time-consuming treatment influenced daily life. In particular, the partners needed to have time on their own. Knowledge about the disease and participation in treatment were significant to both patients and partners. There were considerations about illness progression. Relationships to their social networks and healthcare professionals were a significant and important part of daily life for both parties.

Nurses' attitudes regarding the importance of families in nursing care: A cross-sectional study.

AIMS AND OBJECTIVES: To investigate attitudes towards family involvement in care among a broad sample of Danish nurses from all sectors and healthcare settings. BACKGROUND: Evidence suggests that nurses hold both supportive and less supportive attitudes about involvement of family members in the care of patients, and the existing findings are limited to specific healthcare contexts. DESIGN: A cross-sectional study adhering to the Strengthening the Reporting of Observational Studies in Epidemiology for reporting observational studies. METHODS: Using snowball sampling, the Families' Importance in Nursing Care-Nurses' Attitudes questionnaire was initially administered to a broad, convenience sample of Danish registered nurses through social media: Facebook interest groups and the homepage of the Danish Family Nursing Association. These nurses were encouraged to send the invitation to participate in their network of nursing colleagues. Complete data sets from 1,720 nurses were available for analysis. RESULTS: In general, the nurses considered the family as important in patient care. Nurses who held master's and doctorate degrees scored significantly higher than nurses with a basic nursing education. Nurses who had had experience with illness within their own families tended to score higher on the family as a conversational partner subscale than those without this experience. Nurses with the longest engagement within hospital settings scored significantly lower than those with the longest engagement within primary health care and/or psychiatry. CONCLUSIONS: Families are considered important in nursing care. Younger nurses with a basic education, short-term engagement at a hospital and no experiences with illness within their own families were predictors of less supportive attitudes towards including the family in nursing care. RELEVANCE TO CLINICAL PRACTICE: Clinical leaders and managers should promote education on the importance of active family involvement in patient care in clinical practice and undergraduate education. More focus on collaboration with families in the hospital setting is needed.

The significance of relationships and dynamics in families with a child with end-stage kidney disease: A qualitative study.

AIM AND OBJECTIVES: To explore experiences and the significance of relationships and dynamics among family members living with a child with severe kidney disease. BACKGROUND: Chronic kidney disease (CKD) in children is often incurable, leading to irreversible kidney damage. End-stage kidney failure in a child impacts daily life and routines, requiring significant social adaptation for all family members. However, little is known about how individual family members experience relationships, interactions and dynamics within the family. DESIGN: A qualitative exploratory study taking a phenomenological-hermeneutic approach. METHOD: Data were collected through semi-structured individual interviews with seven fathers, seven mothers, five children with end-stage kidney disease and five siblings. The data were analysed using Ricoeur's theory of narrative and interpretation, on three levels: naïve reading; structural analysis; and critical interpretation and discussion. The Consolidated Criteria for Reporting Qualitative Research checklist has been used (see Supporting Information). RESULTS: All family members experienced relationships within and outside the family as a significant part of everyday life. The well-being of the sick child had an impact on the dynamics and emotional well-being of all family members. Siblings were in need of support; however, being fair could be challenging for parents. CONCLUSION: CKD in a child has an impact on family dynamics and on the relationships between family members. Family members are vulnerable and in need of practical help and emotional support from close relatives, friends, health professionals and other individuals around them. RELEVANCE TO CLINICAL PRACTICE: In clinical practice, the ability to reflect on, or interpret, a range of situations by initiating a dialogue is essential to shape both an individual perspective and the perspective of the entire family unit.