ABSTRACT
AIM: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. DESIGN: A qualitative interview study. METHODS: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. RESULTS: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. CONCLUSION: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. IMPACT: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. REPORTING METHOD: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.
Subject(s)
Decision Making , Family , Health Personnel , Qualitative Research , Terminal Care , Humans , Male , Terminal Care/psychology , Female , Middle Aged , Family/psychology , Aged , Denmark , Health Personnel/psychology , Adult , Aged, 80 and over , Renal Insufficiency/therapy , Renal Insufficiency/psychologyABSTRACT
BACKGROUND: Children and young people affected by kidney failure experience complexities in their care. Little is known about the unique needs of this young patient population group living with a long-term condition. OBJECTIVE: A meta-aggregation of all qualitative studies was conducted to identify experiences of supportive care among children and young people living with kidney failure. METHODS: A systematic review of qualitative studies was conducted following the Joanna Briggs Institute meta-aggregation method. This review has been reported according to the PRISMA statement guidelines. Six electronic databases (CINAHL, Cochrane Library, MEDLINE, Proquest, PsycINFO, and Scopus) were comprehensively searched by an expert systematic review librarian using keywords and subject headings, from inception to September 2022. All studies were accessed using a predetermined inclusion and exclusion criteria. Methodological quality assessment and data extraction performed. Qualitative findings accompanied by illustrative quotes from included studies were extracted and grouped into categories which created the overall synthesised findings. RESULTS: A total of 34 studies were included in this review representing a total of 613 children and young people affected by kidney failure. There was a total of 190 findings which created 13 categories representing experiences of supportive care. The meta-aggregation developed five synthesised findings namely: 'physical needs', 'information and technology', 'treatment and healthcare', 'social needs' and 'psychological impacts'. CONCLUSION: This systematic review identified that children and young people affected by kidney failure can experience a range of unmet supportive care needs in routine clinical services. Kidney failure impacted children and young people's self-identify, social and peer networks, introduced daily practical needs because of inherent physical and psychological burden due to the failure and associated treatments. Despite improvements in the medical management of kidney failure in children and young people, further attention is needed to optimise supported self-management in this young patient group.
Subject(s)
Qualitative Research , Renal Insufficiency , Humans , Child , Renal Insufficiency/psychology , Renal Insufficiency/therapy , Renal Insufficiency/complications , Adolescent , Social SupportABSTRACT
Patients with chronic and serious illnesses experience significant quality of life concerns. More research is needed to understand the impact of financial burden on patients with COPD, heart failure, and kidney failure. Patients with COPD, heart failure, or kidney failure completed a cross-sectional online survey using validated measures of financial burden (general financial strain as well as financial toxicity attributable to treatment), physical quality of life (symptom burden and perceived health), and emotional quality of life (anxiety, depression, and suicidal ideation). ANCOVA was used to examine whether financial strain and financial toxicity were associated with physical and emotional quality of life, while accounting for key covariates. Among 225 participants with COPD (n = 137), heart failure (n = 48), or kidney failure (n = 40), 62.2% reported general financial strain, with 34.7% experiencing financial toxicity attributable to treatments. Additionally, 68.9% rated their health as fair or poor, experiencing significant symptom burden including fatigue, dyspnea, and chest pain. Participants also reported clinically relevant levels of anxiety (55.1%), depression (52.0%), and suicidal ideation (21.8%). In the total sample, financial strain was associated with worse physical and emotional quality of life on all measures (all Ps < .001). Financial toxicity attributable to treatment was not associated with quality of life in the total sample or subsamples. Patients with COPD, heart failure, and kidney failure face significant financial, physical, and emotional burdens. Financial strain appears to undermine physical and emotional quality of life. Our study highlights the demand for interventions aimed at mitigating financial strain and toxicity experienced by individuals with chronic illnesses.
Subject(s)
Cost of Illness , Heart Failure , Pulmonary Disease, Chronic Obstructive , Quality of Life , Renal Insufficiency , Humans , Heart Failure/psychology , Heart Failure/economics , Male , Female , Pulmonary Disease, Chronic Obstructive/economics , Pulmonary Disease, Chronic Obstructive/psychology , Middle Aged , Aged , Cross-Sectional Studies , Renal Insufficiency/psychology , Renal Insufficiency/economics , Depression/psychology , Depression/economics , Anxiety/psychology , Emotions , Surveys and Questionnaires , Suicidal Ideation , Financial Stress/psychologyABSTRACT
The nature of mental disorders, the attitudes and prejudices of the social community towards psychiatric patients, the behavior and treatment of mental patients, all bring about numerous dilemmas and prejudices. When a patient is diagnosed with a mental disorder, he may suffer restrictions in the field of general human rights. However, the biggest problems in clinical practice occur in the treatment of patients who, besides their mental disorder also have a somatic disease. We report a 56-years-old female with a severe renal failure who refused to undergo dialysis. Following the patient's refusal to sign an informed consent, a psychiatrist was called in for consultation and diagnosed an acute psychotic reaction. To manage the delusions and acute psychotic reactions, risperidone in the dose of 2 mg was started. After 22 days, the patient still had marked psychotic symptoms. A psychiatrist, a nephrologist and an anesthesiologist, in the presence of the spouse on the grounds of her life-threatening condition, decided to apply the necessary medical procedures even without the patient's consent. A day after the start of dialysis the patient still had delusional ideas, but without the presence of anxiety, and the patient no longer offered resistance to dialysis. Four days after the first dialysis, the patient was calm, had vague memories about the entire previous period, and signed the informed consent concerning her further treatment.
Se generan muchos dilemas y prejuicios debido a la naturaleza de las enfermedades mentales. Cuando a un paciente se le diagnostica un cuadro mental, sus derechos humanos pueden verse perjudicados. Sin embargo, los mayores problemas se suscitan en pacientes que además de tener un trastorno mental, tienen una enfermedad somática. Presentamos una mujer de 56 años con una falla renal que rechazó ser dializada. Después que la paciente no firmó el consentimiento informado, se pidió una interconsulta a psiquiatría y se diagnosticó una reacción psicótica aguda. Se indicó risperidona para tratar las alucinaciones. Después de 22 días de tratamiento la paciente aún tenía síntomas psicóticos. Una junta médica efectuada en la presencia del cónyuge de la paciente, decidió efectuar la diálisis a pesar del rechazo de la paciente. Un día después de dializarse, la paciente aún tenía alucinaciones pero menos ansiedad y dejó de rechazar la diálisis. Cuatro días más tarde la paciente no recordaba lo ocurrido y firmó el consentimiento para dializarse.
Subject(s)
Female , Humans , Middle Aged , Informed Consent , Renal Dialysis/psychology , Renal Insufficiency/psychology , Anxiety Disorders , Comorbidity , Mental Disorders , Renal Insufficiency/therapy , Treatment RefusalABSTRACT
As doenças crônicas, entre elas a insuficiência renal crônica, têm recebido grande atenção dos profissionais de saúde nas últimas décadas devido ao importante papel desempenhado na morbimortalidade da população mundial. Este trabalho pretende apresentar um relato de experiência sobre o atendimento psicológico, realizado numa clínica de hemodiálise, de 26 pacientes com idades entre 15 e 80 anos, a maioria mulheres (69,2 por cento), casados (53,8 por cento), que não trabalham (92,3 por cento) e aposentados (57,7 por cento), fazendo hemodiálise três vezes por semana. No lugar de reagir passivamente a eventos negativos, indivíduos podem se comportar de modos que aumentem seu bem-estar em tempos de desafios e mudanças, como no caso de se ter uma insuficiência renal crônica. A forma como as pessoas lidam com o sofrimento e seus benefícios pode trazer possibilidades de ajustamento e crescimento pessoal frente à adversidade.
Chronic illnesses, such as kidney disease, have received great attention from health professionals in the last decades. This work intends to present an experience with psychological care, in a hemodialysis clinic, with 26 patients aged between 15 and 80 years, the majority of which were women (69,2 percent), married (53,8 percent), did not work (92,3 percent), or were retired (57,7 percent), taking hemodialysis three times a week. Instead of reacting negatively to life events, individuals can behave in ways that improve their well-being in times of transformation and change, as is the case when one has a chronic kidney disease. The manner in which the individual deals with suffering and its benefits can bring possibilities of psychological adjustment and personal growth in face of adversity.