Patients' experiences of transitioning between different renal replacement therapy modalities : a qualitative study

BACKGROUND: Different kidney replacement therapy modalities are available to manage end-stage kidney disease, such as home-based dialysis, in-center hemodialysis, and kidney transplantation. Although transitioning between modalities is common, data on how patients experience these transitions are scarce. This study explores patients' perspectives of transitioning from a home-based to an in-center modality. METHODS: Patients transitioning from peritoneal dialysis to in-center hemodialysis were purposively selected. Semi-structured interviews were performed, digitally recorded, and transcribed verbatim. Data analysis, consistent with Charmaz' constructivist approach of grounded theory was performed. RESULTS: Fifteen patients (10 males; mean age 62 years) participated. The conditions of the transitioning process impacted the participants' experiences, resulting in divergent experiences and associated emotions. Some participants experienced a loss of control due to the therapy-related changes. Some felt tied down and having lost independence, whereas others stated they regained control as they felt relieved from responsibility. This paradox of control was related to the patient having or not having (1) experienced a fit of hemodialysis with their personal lifestyle, (2) a frame of reference, (3) higher care requirements, (4) insight into the underlying reasons for transitioning, and (5) trust in the healthcare providers. CONCLUSIONS: Care teams need to offer opportunities to elicit patients' knowledge and fears, dispel myths, forge connections with other patients, and visit the dialysis unit before transition to alleviate anxiety. Interventions that facilitate a sense of control should be grounded in the meaning that the disorder has for the person and how it impacts their sense of self

Implementing advance care planning in routine nursing home care : the development of the theory-based ACP+ program

Background While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. Objectives We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner. Design To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling. Setting and participants Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer. Methods The work was carried out by means of 1) operationalization of key intervention components identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis. Results The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning. Conclusions The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice

Medical assistance in dying and older persons in Belgium : trends, emerging issues and challenges

In 2002, the Belgian Act on euthanasia came into effect, regulating the intentional ending of life by a physician at the patient’s explicit request. Subsequently, the number of reported euthanasia deaths increased every year. Specifically, the proportion of euthanasia deaths in older persons has risen significantly in the last few years. Since the conception of the Euthanasia Act, Belgian physicians have been confronted with challenges concerning euthanasia requests in older persons with polypathology, tiredness of life or dementia. By exploring these issues, this commentary highlights the importance of a meticulous and team-based assessment of the (i) seriousness of the underlying condition, (ii) voluntariness of the request and (iii) decisional capacity of the older person requesting euthanasia

The development of transition services in renal care in synergy with young patients, parents and pediatric and adult health care providers : a co-creation approach

Background and Aims Healthcare transition to adulthood is recognised as challenging for adolescents and young adults (AYA’s) diagnosed with chronic kidney disease. Therefore the implementation of a transition programme adjusted to the needs of this patient population is of great importance. However, rarely are the views of young people or their families sought about the process or relevant outcome of their transition process. The aim of this study was to co-develop a transition programme that (1) enables health care providers to facilitate improving transition outcomes from the perspective of all stakeholders, and (2) enhances self-management by young people with chronic kidney disease. Method The development of this programme involved (1) an extensive review of currently existing best-practices (published and unpublished), and (2) understanding the current state of transition practice at our centre by means of semi-structured interviews and focus groups with patients, parents and health care providers of both pediatric and adult side. Results A working group was established incorporating a reflective process designed to develop a community of practice. During the process, participants’ experiences, lessons learned from the review of current state of evidence and practice, and appreciation of the (changing) context within which participants were working were incorporated. Analysis revealed 6 core elements as the foundation of the transition program: the AYA as the main focus, involvement of the parents, holistic approach, flexibility, forward-looking approach, continuity in guidance and follow-up. We also identified the need to distinguish the difference between transitioning from child to teenager to young adult and the actual transfer between paediatric and adult care. The actual final proposed transition programme can be divided in 4 phases: (1) introduction of the transition process to parents and patients, (2) guiding the patient to become more independent and to gain insight in the disease and related themes, (3) managing the transfer to adult health care and (4) finalizing the transition care plan. Adequate on-going communication and collaboration between paediatric and adult care seems essential for achieving a successful program. Conclusion This study addressed the development of a transition programme as a multi-actor process wherein patients, parents and health care providers significantly contribute to the transition to adulthood and transfer to adult car

Tiredness of life in older persons : a qualitative study on nurses’ experiences of being confronted with this growing phenomenon

Background and Objectives: With worldwide aging it is imperative to understand nurses' perceptions of tiredness of life (ToL) and their ways of dealing with an increasingly common phenomenon. Most research on ToL relates to older individuals' experiences. This study aimed to gain insight into nurses' (a) perceptions of, (b) attitude(s) toward, and (c) ways of dealing with ToL in older patients. Research Design and Methods: Qualitative study with elements of constructivist grounded theory. Data were collected by means of semi-structured interviews between February 2016 and June 2017 with a purposive sample of 25 nurses working in home care and nursing homes. Results: A careful consideration indicative of an oscillation between 3 levels (e.g., behavioral, cognitive, and affective) is present. The confrontation with persons having ToL instigates a cognitive process of searching to understand the state a person is in, which on its turn ensues in an emotional balancing between courage and powerlessness and a behavioral approach of action or dialogue. Discussion and Implications: Our findings indicate that nurses aim to provide good care, sensitive to the older person's needs, but this process is not without ambiguity. This study provides nurse managers with valuable guidance to (a) support nursing staff in dealing with ToL, and (b) advance opportunities for emotionally sensitive care and (individual- and team-based) reflection. Finally, this study offers suggestions for education programs to incorporate ToL in curricula