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Patient navigators enable adult patients to circumnavigate complex health systems, improving access to health care and outcomes. Here, we aimed to evaluate the effects of a patient navigation program in children with chronic kidney disease (CKD). In this multi-center, randomized controlled trial, we randomly assigned children (aged 0-16 years) with CKD stages 1-5 (including children on dialysis or with kidney transplants), from low socioeconomic status backgrounds, and/or residing in remote areas, to receive patient navigation at randomization (immediate) or at six months (waitlist). The primary outcome was self-rated health (SRH) of participating children at six months, using intention to treat analysis. Secondary outcomes included caregivers' SRH and satisfaction with health care, children's quality of life, hospitalizations, and missed school days. Repeated measures of the primary outcome from baseline to six months were analyzed using cumulative logit mixed effects models. Semi-structured interviews were thematically evaluated. Of 398 screened children, 162 were randomized (80 immediate and 82 waitlist); mean age (standard deviation) of 8.8 (4.8) years with 64.8% male. SRH was not significantly different between the immediate and wait-listed groups at six months. There were also no differences across all secondary outcomes between the two groups. Caregivers' perspectives were reflected in seven themes: easing mental strain, facilitating care coordination, strengthening capacity to provide care, reinforcing care collaborations, alleviating family tensions, inability to build rapport and unnecessary support. Thus, in children with CKD, self-rated health may not improve in response to a navigator program, but caregivers gained skills related to providing and accessing care.
Assuntos
Navegação de Pacientes , Qualidade de Vida , Insuficiência Renal Crônica , Humanos , Masculino , Feminino , Criança , Navegação de Pacientes/organização & administração , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/psicologia , Adolescente , Pré-Escolar , Lactente , Cuidadores/psicologia , Acessibilidade aos Serviços de Saúde/organização & administração , Satisfação do Paciente , Recém-Nascido , Diálise Renal , Transplante de RimRESUMO
BACKGROUND: Children with chronic kidney disease (CKD) require multidisciplinary care to meet their complex healthcare needs. Patient navigators are trained non-medical personnel who assist patients and caregivers to overcome barriers to accessing health services through care coordination. This trial aims to determine the effectiveness of a patient navigator program in children with CKD. METHODS: The NAVKIDS2 trial is a multi-center, waitlisted, randomized controlled trial of patient navigators in children with CKD conducted at five sites across Australia. Children (0-16 years) with CKD from low socioeconomic status rural or remote areas were randomized to an intervention group or a waitlisted control group (to receive intervention after 6 months). The study primary and secondary endpoints include the self-rated health (SRH) (primary), and utility-based quality of life, progression of kidney dysfunction of the child, SRH, and satisfaction with healthcare of the caregiver at 6 months post-randomization. RESULTS: The trial completed recruitment in October 2021 with expected completion of follow-up by October 2022. There were 162 patients enrolled with 80 and 82 patients randomized to the immediate intervention and waitlisted groups, respectively. Fifty-eight (36%) participants were from regional/remote areas, with a median (IQR) age of 9.5 (5.0, 13.0) years, 46% were of European Australian ethnicity, and 65% were male. A total of 109 children (67%) had CKD stages 1-5, 42 (26%) were transplant recipients, and 11 (7%) were receiving dialysis. CONCLUSION: The NAVKIDS2 trial is designed to evaluate the effectiveness of patient navigation in children with CKD from families experiencing socioeconomic disadvantage. A higher resolution version of the Graphical abstract is available as Supplementary information.
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Navegação de Pacientes , Insuficiência Renal Crônica , Humanos , Masculino , Criança , Feminino , Qualidade de Vida , Diálise Renal , Austrália , Insuficiência Renal Crônica/terapiaRESUMO
Nephrology nurses struggle to support patients on hemodialysis who experience needle fear due to absence of adequate programs or guidelines. Therefore, we have designed an educational intervention for nurses to learn techniques and strategies to support patients with needle fear and review best cannulation practices with minimal trauma to improve patients' experience of dialysis. A pre-post design measured self-reported confidence in nurses' ability to support patients on dialysis who have a fear of needles. We found nurses can benefit from targeted educational interventions that provide information and strategies regarding needle fear management. Findings from this study have a potential to be transferred to other chronic disease settings with frequent needle use.
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Enfermagem em Nefrologia , Nefrologia , Enfermeiras e Enfermeiros , Humanos , Diálise Renal , Medo , CateterismoRESUMO
BACKGROUND: A key skill of nephrology nursing is cannulation of patients receiving haemodialysis. Traumatic and unsuccessful cannulation experiences, particularly in the initial weeks of haemodialysis, may contribute to the onset of needle distress for patients. OBJECTIVES: To identify the key knowledge, skills and attitudes of nephrology nurses working with haemodialysis patients and the competencies relevant to nephrology nursing working with patients with needle-related distress. DESIGN: A qualitative study involving semistructured interviews. Interviews were audio-recorded, transcribed and deductive, and inductive thematic analysis applied. PARTICIPANTS: Nephrology nurses (n = 17) were interviewed from a tertiary kidney service in South Australia. Nurses had varying roles and years of experience (range 1-30 years) working with dialysis patients within the service. RESULTS: Two overarching themes, (1) Flexibility in Practice and Care and (2) Responsibility of Nephrology Nursing, were identified as relevant across all knowledge, skills and attitudes of nephrology nurses working with patients with needle-related distress. Thirty-six knowledge, skills and attitudes were identified; 12 related to knowledge, 14 related to skills and 10 were identified as attitudes and were summarised under seven broad competencies. CONCLUSION: This study identifies potential knowledge, skills and attitudes and competencies required for nephrology nurses working with patients with needle-related distress. It highlights strategies that may prevent the onset and worsening of needle-related distress, as well as reduce it. It also brings to light that nurses desire additional education regarding strategies to improve the patient experience of cannulation and nurse confidence and skill in this area.
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Introduction: Needle-related distress is common among people receiving hemodialysis and affects quality of life and treatment decisions, yet little evidence exists to guide management. This study explored patients' experiences of needle-related distress to inform the development of prevention, identification, and management strategies. Methods: Semistructured interviews concerning dialysis cannulation, needle-related distress, and potential solutions were conducted with people with current or recent experience of hemodialysis (N = 15) from a tertiary hospital-based service. Interviews ceased at thematic saturation. Transcripts were analyzed thematically. Results: There were 4 themes and 11 subthemes generated: (i) uncovering a hidden source of distress (dismissal and minimization by others; suffering in silence to stay alive; preparation, assessment, and education); (ii) coping with cannulation pain and trauma (interaction between physical damage, pain, and distress; operator dependency-the importance of nurse skill and technique); (iii) the environment created by dialysis nurses (emotional transference; communication during cannulation; valuing empathy and person-centered care; a psychosocially supportive dialysis unit); and (iv) supporting patient self-management of distress (accessing tools to help themselves; distraction to reduce distress). Conclusion: Needle-related distress is an often-hidden element of the hemodialysis experience. Patients learn to tolerate it as an inevitable part of dialysis for survival. Nurses' technical skills and the dialysis environment they create are key determinants of the patient cannulation experience. Proposed solutions include psychological screening, education for patients to self-manage distress, and training for nurses in communication and providing relevant psychological support.
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Research investigating health benefits from household human-animal bonds has focused mostly on bonds with companion dogs, cats, and horses. Wellbeing benefits associated with other companion animal species such as birds, fish, and reptiles are described and anecdotally reported, but there is little empirical literature supporting this. The literature suggests that health benefits of companion animals are predicated on human perceptions of the animal rather than the animal's species. Therefore, relationships with non-conventional companion animals of diverse species may benefit the health of their human guardians as do dogs, cats, and horses. This narrative review summarizes the current literature exploring perceived health benefits gained from non-conventional companion animals. Searches were conducted for published literature and grey literature up to October 2022 across PsycINFO and PubMed databases, and Newsbank media database for commercial media publications. Nineteen studies and 10 media articles were included in the review. Gaps in the literature include a lack of rigorous research to investigate the health benefits of non-conventional companion animals. Non-conventional companion animals may benefit their guardians by providing social support through acting as attachment figures, facilitating social opportunities and daily routines, fulfilling cognitive needs, and recreating restorative capacities of mindfully observing natural landscapes. Further high-quality research into the human-non-conventional companion animal bond is warranted.
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BACKGROUND: This update summarises key changes made to the protocol since the publication of the original protocol for the NAVKIDS2 trial of patient navigators for children with chronic kidney disease (CKD) experiencing social disadvantage and provides the statistical analysis plan (SAP) which has not previously been published. METHODS/DESIGN: The original protocol was published in BMC Nephrology ( https://doi.org/10.1186/s12882-019-1325-y ) prior to the commencement of trial recruitment. During the course of the trial, some key methodological changes needed to be made including changes to eligibility criteria (addition of patients with CKD stages 1-2, broadening of financial status eligibility criterion, addition of patients living in rural/remote areas, modification of age eligibility to 0-16 years, addition of limits related to the language spoken by family, guidance regarding families with multiple eligible children), changes to sites, reduction of sample size, addition of virtual options for consent and study procedures in response to the COVID-19 pandemic, removal of staggered recruitment across sites, addition of outcomes, and changes to the timing and number of assessments. This update summarises the changes made and their rationale and provides the detailed plan for statistical analysis of the trial. These changes have been finalised prior to the completion of study follow-up and the commencement of data analysis. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12618001152213 . Prospectively registered on 12 July 2018.
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COVID-19 , Navegação de Pacientes , Insuficiência Renal Crônica , Austrália , Criança , Humanos , Estudos Multicêntricos como Assunto , Pandemias , Ensaios Clínicos Controlados Aleatórios como Assunto , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/terapia , SARS-CoV-2 , Resultado do TratamentoRESUMO
BACKGROUND: Little is known about the prevalence and best management of needle fear in adults with chronic disease, who may experience frequent and long-term exposure to needles for lifesaving therapies such as renal dialysis and cancer treatment. Identifying interventions that assist in management of needle fear and associated distress is essential to support these patients with repeated needle and cannula exposure. METHOD: We followed the PRISMA methodology for scoping reviews and systematically searched PsychINFO, PubMed (MEDLINE), ProQuest, Embase and grey literature and reference lists between 1989 and October 2020 for articles related to needle discomfort, distress, anxiety, fear or phobia. The following chronic diseases were included: arthritis, asthma, chronic back pain, cancer, cardiovascular disease, chronic obstructive pulmonary disease, diabetes, and mental illness, or kidney failure. Literature concerning dentistry, vaccination, intravenous drug users and paediatric populations were excluded. RESULTS: We identified 32 papers reporting prevalence (n = 24), management (n = 5) or both (n = 3). Needle fear prevalence varied in disease cohorts: 17-52% (cancer), 25-47% (chronic kidney disease) and 0.2-80% (diabetes). Assessment methods varied across studies. Management strategies had poor evidence-base, but included needle-specific education, decorated devices, cognitive-behavioural stress management techniques, distraction, and changing the therapy environment or modality. CONCLUSION: Although needle fear is common there is a paucity of evidence regarding interventions to address it among adults living with chronic disease. This scoping review has highlighted the need for improved identification of needle fear in adults and development of interventions are required for these cohorts.