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1.
Br J Clin Pharmacol ; 90(5): 1344-1356, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38403776

RESUMEN

AIM: Suboptimal self-management with controller inhalation therapy in asthma and COPD is frequently observed with poor treatment outcomes. The developed 'Respiratory Adherence Care Enhancer' (RACE) instrument identifies and addresses individual barriers to self-management with a theoretical underpinning. This study investigates the feasibility of pharmaceutical support with this instrument. METHODS: An implementation trial was conducted with asthma and COPD patients in 5 community pharmacies in the Netherlands. Patients were allocated to standard care or add-on support with the RACE instrument. Patients were invited to complete the RACE questionnaire at baseline, 5-week and 10-week follow-up. Barrier profiles were accessible for the intervention group with subsequent consultations at baseline and 5-weeks. Experiences were collected from patients and consultants with a questionnaire and reported findings. Primary endpoints focused on the acceptability, practicality and implementation process. Secondary endpoints included between-group differences in barrier and disease control outcomes from baseline at 10-weeks follow-up. RESULTS: In total, 84 patients were included; 48 were assigned to intervention and 36 to standard care. Patient satisfaction of support with the RACE instrument was high (71%). Patients felt motivated, reassured and more confident about their disease management. Consultants reported an increase in awareness of patient barriers. Patient recognition of barrier profiles was 83.9% (±12.9%). The barrier inhaler techniques decreased significantly for the intervention group at follow-up with odds ratio 0.30 (95% confidence interval, 0.10-0.91). No significant differences were observed for changes in number of barriers and disease control. CONCLUSION: Self-management support with the RACE instrument is feasible and appreciated, facilitating behaviour change with patient-centred pharmaceutical care in asthma and COPD.


Asunto(s)
Asma , Cumplimiento de la Medicación , Enfermedad Pulmonar Obstructiva Crónica , Automanejo , Humanos , Enfermedad Pulmonar Obstructiva Crónica/terapia , Enfermedad Pulmonar Obstructiva Crónica/tratamiento farmacológico , Asma/tratamiento farmacológico , Asma/terapia , Masculino , Femenino , Persona de Mediana Edad , Países Bajos , Anciano , Automanejo/métodos , Cumplimiento de la Medicación/estadística & datos numéricos , Encuestas y Cuestionarios , Administración por Inhalación , Adulto , Satisfacción del Paciente , Estudios de Factibilidad , Antiasmáticos/administración & dosificación , Antiasmáticos/uso terapéutico
3.
J Ren Care ; 48(3): 168-176, 2022 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-35094501

RESUMEN

BACKGROUND: People with chronic kidney disease are often multimorbid and have complex psychosocial needs. For health professionals to deliver holistic, person-centred care to individuals and their carers living with this multifaceted disease, they are required to communicate complex information and problem solve in a multifactorial health and disease context. OBJECTIVES: To explore the perspectives and experiences of tertiary care multidisciplinary team members and primary care providers of health care to people with chronic kidney disease; identify opportunities to innovate and improve the coordinated delivery of health services. DESIGN: The qualitative study design used purposive sampling to recruit 39 health professionals, working in the primary and tertiary sector in a regional Australian health district. Participants included general practitioners, renal and general practice nurses, dietitians, nephrologists and social workers. APPROACH: The data were collected through semistructured interviews and analysed using a relativist ontological position and directed content analysis approach. Analysis of interviews was undertaken by three independent researchers and key themes were derived via consensus. FINDINGS AND CONCLUSIONS: A common goal to deliver person-centred individualised care was evident among health care professionals. However a deficit in shared understanding of the disease within and between disciplines was identified. The complex nature of chronic kidney disease requires up-skilling of health professionals to ensure patient education is targeted to individual health contexts and motivates self-management. Improved communication and comprehension might best be achieved across disciplines with an integrated approach to delivery of primary health care to individuals living with early-stage kidney disease.


Asunto(s)
Personal de Salud , Insuficiencia Renal Crónica , Australia , Atención a la Salud , Humanos , Investigación Cualitativa , Insuficiencia Renal Crónica/terapia
4.
J Dual Diagn ; 17(3): 181-192, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34152258

RESUMEN

Mobile mental health apps can help bridge gaps in access to care for those with substance use disorders and dual diagnoses. The authors describe a portfolio of free, publicly available mobile mental health apps developed by the National Center for PTSD. The authors also demonstrate how this suite of primarily non-substance use disorder-specific mobile mental health apps may support the active ingredients of substance use disorder treatment or be used for self-management of substance use disorder and related issues. The potential advantages of these apps, as well as limitations and considerations for future app development, are discussed.


Asunto(s)
Aplicaciones Móviles , Automanejo , Trastornos por Estrés Postraumático , Trastornos Relacionados con Sustancias , Humanos , Salud Mental , Trastornos por Estrés Postraumático/complicaciones , Trastornos por Estrés Postraumático/terapia , Trastornos Relacionados con Sustancias/complicaciones , Trastornos Relacionados con Sustancias/terapia
5.
Front Pharmacol ; 12: 767092, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-35002706

RESUMEN

Introduction: Suboptimal self-management of inhaled corticosteroids (ICS) in asthma patients is frequently observed in clinical practice and associated with poor asthma control. Driving factors for suboptimal self-management are complex and consist of a range of behavioral barriers (cognitive, affective and practical) with a considerable inter-individual variability. Identification of individual barriers facilitates the use of corresponding behavior change techniques and tailored care to improve asthma treatment outcomes. Objective: This study describes the development and validation of the 'Respiratory Adherence Care Enhancer' (RACE) questionnaire to identify individual barriers to self-management of ICS therapy in asthma patients. Methods: The development included: 1) an inventory of self-management barriers based on a literature review, 2) expert assessment on relevance and completeness of this set, linking these barriers to behavioral domains of the Theoretical Domains Framework (TDF) and 3) the formulation of corresponding questions assessing each of the barriers. A cross-sectional study was performed for validation. Primary care asthma patients were invited to fill out the RACE-questionnaire prior to a semi-structured telephonic interview as golden standard. Barriers detected from the questionnaire were compared to those mentioned in the interview. Results: The developed questionnaire is made up of 6 TDF-domains, covering 10 self-management barriers with 23 questions. For the validation 64 patients completed the questionnaire, of whom 61 patients were interviewed. Cronbach's alpha for the consistency of questions within the barriers ranged from 0.58 to 0.90. Optimal cut-off values for the presence of barriers were determined at a specificity between 67 and 92% with a sensitivity between 41 and 83%. Significant Areas Under the Receiver Operating Curves values were observed for 9 barriers with values between 0.69 and 0.86 (p-value <0.05), except for 'Knowledge of ICS medication' with an insignificant value of 0.53. Conclusion: The RACE-questionnaire yields adequate psychometric characteristics to identify individual barriers to self-management of ICS therapy in asthma patients, facilitating tailored care.

6.
J Ren Care ; 46(3): 151-160, 2020 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31919998

RESUMEN

BACKGROUND: Renal replacement therapies (RRT) other than in-centre haemodialyses are underutilised by African Americans with end-stage renal disease (ESRD) even though they are associated with reduced costs, morbidity and mortality as well as improved quality of life for patients. OBJECTIVES: To understand African American patients' knowledge of RRT options and how patient, provider and system-factors contribute to knowledge and preferences. Participants' interviews were conducted at the University of Chicago Medical Center with African American patients with chronic kidney disease (CKD). The final analysis included 28 interviews; 22 patients had CKD not yet on dialysis or having received a transplant, while 6 had reached ESRD and were receiving treatment for kidney failure. Approach Transcripts were uploaded into NVivo8 for coding. Thematic analysis was used for data interpretation. RESULTS: Four themes were identified: (1) limited knowledge of home modalities and deceased donor options, (2) CKD patients gave little thought to choosing RRT options, (3) CKD patients relied on doctors for treatment decisions, and (4) while patients reported knowledge of living kidney donation transplants (LKDT), it did not translate to receiving an LKDT. CONCLUSION: African Americans face significant knowledge and access barriers when deciding on their RRT treatment. Even patients with advanced CKD were still in the early stages of RRT selection. Understanding the knowledge gaps and barriers patients face will inform our subsequent intervention to educate and motivate patients to increase CKD self-care and improve communication between patients, their families and their providers about different RRT treatments.


Asunto(s)
Negro o Afroamericano/psicología , Conocimientos, Actitudes y Práctica en Salud/etnología , Insuficiencia Renal Crónica/complicaciones , Terapia de Reemplazo Renal/métodos , Adolescente , Adulto , Negro o Afroamericano/etnología , Negro o Afroamericano/estadística & datos numéricos , Anciano , Femenino , Alfabetización en Salud/normas , Alfabetización en Salud/estadística & datos numéricos , Humanos , Entrevistas como Asunto/métodos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Insuficiencia Renal Crónica/psicología , Insuficiencia Renal Crónica/terapia , Terapia de Reemplazo Renal/instrumentación , Terapia de Reemplazo Renal/psicología
7.
J Ren Care ; 46(1): 45-51, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31746128

RESUMEN

BACKGROUND: Little is known about health and wellbeing among patients with nephrotic syndrome (NS), despite it being a serious condition in patients with renal failure. In order to promote health, it is important that both healthcare professionals and patients are aware of the signs and symptoms of the disease. OBJECTIVES: The aim was to explore patients' experience of suffering from nephrotic syndrome. DESIGN: An inductive, qualitative method. PARTICIPANTS: Ten adult patients with either newly diagnosed or a relapse of NS treated in a University hospital, south of Sweden from February 2016 to February 2019. MEASUREMENTS: Data were collected using open-ended interviews and analysed by means of Lindseth and Norberg's phenomenological-hermeneutical method. RESULTS: Suffering from NS meant being a stranger in an unfamiliar world of symptoms, signs and medical treatment without professional guidance or piloting, illustrated by four themes: Feeling ill and well at the same time, Being passively adherent, Being in uncertainty, and Trying to comprehend and cope. IMPLICATIONS FOR PRACTICE: The result provides an in-depth understanding of the illness experience among patients with NS and constitutes a foundation for clinical guidelines on treatment, follow-up and health promotion. CONCLUSION: Patients with NS end up in a state of ambiguity due to a profound knowledge deficit that causes uncertainty and a lack of self-management. The experienced lack of professional self-management support is partly compensated for by social support from relatives, enabling those with NS to manage everyday life in a reasonable way.


Asunto(s)
Adaptación Psicológica , Síndrome Nefrótico/complicaciones , Comodidad del Paciente/normas , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Síndrome Nefrótico/psicología , Comodidad del Paciente/métodos , Comodidad del Paciente/estadística & datos numéricos , Investigación Cualitativa , Suecia
8.
J Ren Care ; 45(4): 223-231, 2019 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-31496117

RESUMEN

BACKGROUND: Dialysis patients' experience of safety can be seen positively connected with their wellbeing and successful outcomes of their treatment and care. Therefore, it is necessary to identify the factors promoting and weakening the safety experiences and create a basis for empowering interventions. OBJECTIVES: Analyse patients' experiences of safety with dialysis and the factors promoting and weakening their safety. METHODS: A descriptive study design was used. This study analysed Finnish patients' (n = 70) experiences of safety with dialysis and the factors promoting and weakening patients' safety. Data were collected using a questionnaire including one structured question and two open questions. FINDINGS: The patients experienced their care as safe. Thematic analysis provided three factors promoting patients' safety: certainty of patient's own competence in dialysis self-management, competence of personnel in dialysis treatment and care, continuity of ensuring patients' state of health, as well as three factors weakening safety: patients' uncertainty of living with chronic kidney disease, insufficient patient education and uncertain realisation of dialysis treatment and care. CONCLUSION: This study provided new insight into understanding patients' experiences of safety with dialysis. We show that the factors connected with patients' safety were related to the successful realisation of self-management, support for the self-management, and delivery of dialysis treatment and care anticipating high-level outcomes. In light of this study, there are development needs in dialysis treatment and care as a whole in order to ensure patients' safety.


Asunto(s)
Hemodiálisis en el Domicilio/psicología , Seguridad del Paciente/normas , Satisfacción del Paciente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Finlandia , Hemodiálisis en el Domicilio/normas , Humanos , Acontecimientos que Cambian la Vida , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios
9.
J Ren Care ; 45(3): 133-140, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31355536

RESUMEN

BACKGROUND: Successful management of chronic kidney disease (CKD) depends on patients' self-management efforts. Mobile health applications can empower patients with CKD to manage their own condition. We developed, with patient involvement, the MiKidney smartphone application. AIM: Evaluate the MiKidney app as an aid to empowering patients with CKD to become more engaged in the management of their condition. DESIGN: Pilot single group pre- and post-test intervention study. SETTING: Renal clinic of an urban University Hospital in Ireland. PATIENTS: Aged over 18 years with CKD and able to use a smartphone. Sample size based on expression of interest and availability of free smartphones (n = 23); three patients withdrew prior to T3 data collection (n = 20). MEASUREMENTS: Data were collected at T1 (baseline), T2 (week 6) and when exiting the study (T3, 12 weeks) on physical activity, body measurements and blood parameters. Information on app usage and patient satisfaction collected at T2 and T3. RESULTS: There was significant improvement in the six-minute walking test (p = 0.02), total cholesterol (p = 0.023) and LDL cholesterol (p = 0.005) serum levels and a significant decrease in waist circumstance (p = 0.00) and body fat (p = 0.01) measurements. Eighteen participants found the MiKidney app easy to navigate. CONCLUSION: The MiKidney study highlights the viability and usability of the MiKidney app. It has the potential to empower and motivate patients to understand and self-manage their condition by providing them with the necessary information on renal diet and symptom management. Additionally, tools such as exercise tracker and reminder alerts are available on a readily accessible user-friendly platform.


Asunto(s)
Aplicaciones Móviles/normas , Participación del Paciente , Insuficiencia Renal Crónica/terapia , Humanos , Proyectos Piloto , Insuficiencia Renal Crónica/psicología , Diseño de Software
10.
J Ren Care ; 44(4): 210-218, 2018 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-29900677

RESUMEN

BACKGROUND: With inspiration from Oxford, UK, a youth clinic outside the hospital for young people with kidney disease was established at a Danish university hospital in Autumn 2014. Four clinics have been held annually. OBJECTIVES: To qualitatively evaluate a new established youth clinic and to gain knowledge of the experiences of young people and their parents with this clinic. METHODS: Three data sets were collected (observation, interviews and focus groups). Data were analysed using Malterud's systematic text condensation. FINDINGS: Eight themes were identified: (1) A meeting place; (2) a mutual understanding; (3) the young people have established a social community between themselves; (4) I feel less directed by my kidney disease; (5) I accept my life with the disease to a larger extent; (6) I am the safety net; (7) they have their life with the disease under control and they handle it and (8) the youth clinic is a gift from heaven. CONCLUSION: The youth clinic had a positive impact on the young peoples' daily life with kidney disease and has helped most of the young people to have more faith in themselves and their own abilities to handle life with kidney disease. Meeting with peers and the youth clinic being located outside the hospital were of utmost importance.


Asunto(s)
Instituciones de Atención Ambulatoria/normas , Enfermedades Renales/terapia , Adolescente , Dinamarca , Femenino , Grupos Focales , Humanos , Entrevistas como Asunto/métodos , Masculino , Evaluación de Programas y Proyectos de Salud/métodos , Investigación Cualitativa
11.
Acta Biomed ; 88(5S): 22-30, 2017 11 30.
Artículo en Inglés | MEDLINE | ID: mdl-29189702

RESUMEN

BACKGROUND AND AIM: The therapeutic education and self-management carried out by nurses, are winning elements in cardiovascular secondary prevention, but because they are complex matters, they require special training by the professionals. The target of the study has been to assess the effects in clinical practice of a training program for nurses in the management of patients with cardiovascular diseases, leaning towards a self-oriented patient management and therapeutic patient education. METHOD: The research utilized a quali-quantitative study to compare the responses of 53 trained nurses (experimental group) and 101 untrained nurses (control group). The instrument used was a self-report structured in two sections: the first, a qualitative kind, was used to investigate the portrayal of nurses regarding self-management; the second, a quantitative kind, included a Likert scale based on 5 points (1=never, 5=always) that investigated the professional nurse's action in its bio-psycho-socio-relational and clinical activities (La Sala, 2012). RESULTS: The trained nurses' approach is more oriented towards the psycho-socio-relational dimension, compared to the untrained nurses. A difference also emerged regarding activities of a bio clinical nature, which are performed much more by untrained nurses compared to trained professionals. CONCLUSIONS: The health education and self-management skills were used by trained nurses during their care of patients with cardiovascular diseases, stressing the importance for professional nurses to develop an integrated competence, using narrative talks as the main tool in a patient-centred approach.


Asunto(s)
Enfermedades Cardiovasculares/terapia , Educación Continua en Enfermería , Automanejo/educación , Competencia Clínica , Femenino , Educación en Salud , Humanos , Masculino , Enfermeras y Enfermeros , Atención Dirigida al Paciente
12.
J Ren Care ; 43(4): 209-218, 2017 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-28371226

RESUMEN

BACKGROUND: Patterns of healthcare encounters by patients in each stage of chronic kidney disease (CKD) have not been fully described. OBJECTIVE: This study describes patterns of healthcare resource use by patients with CKD. DESIGN: A retrospective descriptive design was used. PARTICIPANTS: Patients with Stages 1-5 CKD were identified in five existing de-identified healthcare insurance claims databases in the United States using codes from the International Classification of Diseases (ICD-9-CM). MEASUREMENTS: The databases contained more than 23,660,000 claims records from over 11 million subscribers who were continuously enrolled in a single 2014 health plan. All CKD patients' 2014 claims were extracted, yielding 1,987 unique people with 110,594 healthcare encounters. RESULTS: Healthcare resources are used to manage the causes of CKD and its multiple effects on health, and thus the number of healthcare encounters among people with more advanced disease was, as expected, relatively higher. There were more hospitalisations, emergency department visits and specialist encounters in this group. Surprisingly, however, even people in earlier stages of kidney disease experienced a median of 14-17 healthcare encounters during a single calendar year. CONCLUSIONS: Understanding patterns of healthcare encounters provides important information about the transition experiences of patients with CKD. Exploring ways to reduce the risks associated with transitions in care may prevent problems with home medication management, frequent emergency department visits and potentially avoidable hospitalisations.


Asunto(s)
Atención a la Salud/métodos , Atención a la Salud/estadística & datos numéricos , Recursos en Salud/estadística & datos numéricos , Insuficiencia Renal Crónica/psicología , Insuficiencia Renal Crónica/terapia , Arizona , California , Atención a la Salud/normas , Femenino , Florida , Hospitalización/estadística & datos numéricos , Humanos , Revisión de Utilización de Seguros/estadística & datos numéricos , Masculino , Nevada , Insuficiencia Renal Crónica/complicaciones , Estudios Retrospectivos
13.
J Ren Care ; 43(1): 29-36, 2017 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-27977065

RESUMEN

BACKGROUND: Approximately 500,000 people in the United States are affected by end-stage kidney disease (ESKD), 53% of whom are Black or Latino. ESKD significantly impacts psychosocial health and quality of life. However, few studies address the psychosocial aspects of ESKD, especially among black and Latino adults. This study sought to understand the psychosocial context of living with ESKD among black and Latino adults who reside in a medically underserved community. STUDY DESIGN: A qualitative study. SETTING AND PARTICIPANTS: Participants were recruited from a dialysis centre in East New York, Brooklyn, a medically underserved community. METHODOLOGY: Descriptive phenomenology was used as a qualitative approach for capturing the experiences of patients who received dialysis in this community. ANALYTICAL APPROACH: Open-ended interviews were audio-taped, transcribed, coded and analysed using standard qualitative techniques. RESULTS: Data saturation was achieved at 36 participants. The following five themes emerged: the transition to dialysis is abrupt and unexpected; denial is often an initial response; dialysis is the new normal and in order to survive one must forget the past and press forward; dialysis changes everything and impacts the entire family; strength was often found in faith and family. LIMITATIONS: This study was conducted in one setting and may need to be expanded to other sites to capture the experiences of patients cared for in other settings. CONCLUSION: These findings have practical implications for informing patient-centered models of care that are more responsive to the psychosocial needs of patients with ESKD living in medically underserved communities.


Asunto(s)
Etnicidad/psicología , Grupos Minoritarios/psicología , Satisfacción del Paciente , Diálisis Renal/psicología , Diálisis Renal/normas , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Ciudad de Nueva York , Investigación Cualitativa , Calidad de Vida/psicología , Diálisis Renal/efectos adversos
14.
J Ren Care ; 42(1): 23-33, 2016 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-25946311

RESUMEN

BACKGROUND: Preserving kidney function and prevention of cardiovascular disease can only be achieved if patients are supported in self-managing their disease aimed at developing coping strategies. OBJECTIVES: In MASTERPLAN, a clinical trial from 2005 -2010, patients with chronic kidney disease were randomised to receive nurse practitioner (NP) support or physician care alone. We evaluated the role of NP and patients in achieving lifestyle treatment goals. However the evaluation of lifestyle interventions resulted in disappointing findings. DESIGN: We conducted a mixed method study to explain the previous quantitative results in order to achieve a more complete description of the practice of reaching lifestyle goals. PARTICIPANTS: Ten NPs in nine participating hospitals of the MASTERPLAN study were interviewed and identified a hierarchy on what treatment goals received the most attention during MASTERPLAN, at baseline and after four years. RESULTS: A shift of attention in study goals occured for various reasons e.g. progression of disease, too many goals, non-motivated patients, changed relationship between NP and patient. Different strategies were used to influence lifestyle change with varying degrees of success. CONCLUSION: Lifestyle change is difficult to maintain during five years follow up. Besides a shift of attention in study goals, the relationship with the patient also changed over time.


Asunto(s)
Estilo de Vida , Enfermeras Practicantes , Participación del Paciente , Insuficiencia Renal Crónica/enfermería , Insuficiencia Renal Crónica/terapia , Autocuidado , Femenino , Humanos , Masculino , Médicos , Conducta de Reducción del Riesgo
15.
J Ren Care ; 42(2): 83-92, 2016 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-26708306

RESUMEN

BACKGROUND: Studies in patients with diabetes have shown that the guided self determination (GSD) method effectively improves patients' glycaemia control and life skills. As a pilot study in 2011 showed promising results of using parts of GSD adjusted to patients on haemodialysis (HD), we decided to develop and test a full-scale GSD for this patient group (GSD-HD). OBJECTIVES: To study how a full-scale GSD-HD influenced the quality of relatedness between the patient and the GSD-HD nurse and the patients' ability to live well with end stage renal disease (ESRD). METHODS: GSD-HD was developed through participatory research and evaluated qualitatively at five dialysis units in Denmark involving 31 patients and 16 nurses. The intervention lasted four months and comprised six sessions. Data consisting of semi-structured interviews with 13 patients were analysed using a mix of inductive and deductive thematic analysis. FINDINGS: A process of developing life skills was clearly identified in the changes accomplished by all 13 participants going through the GSD-HD intervention. Six themes showed that the changes involved the patients personally, their relationships with healthcare professionals and relatives and their self-management of ESRD: Deeper and more meaningful relationships, self-exploration of self-selected challenges, self-understanding as a condition for meaningful knowledge, ability to act in a self-determined way, feedback from action that accords with daily life skills and decision-making from professional to share. CONCLUSION: The positive changes identified in this qualitative evaluation are promising and indicate that GSD-HD has a potential worthwhile to be tested further among patients with ESRD.


Asunto(s)
Consejo/métodos , Acontecimientos que Cambian la Vida , Autonomía Personal , Calidad de Vida/psicología , Diálisis Renal/psicología , Adulto , Anciano , Consejo/normas , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Investigación Cualitativa
16.
Health Expect ; 18(6): 3358-73, 2015 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25545411

RESUMEN

BACKGROUND: Self-management is recommended for patients with chronic conditions, but its use with cancer survivors is underexplored. Optimal strategies for achieving lifestyle changes in cancer survivors are not known. OBJECTIVE: We aimed to determine feasibility, acceptability and preliminary efficacy of self-management-based nutrition and physical activity interventions for cancer survivors. DESIGN, SETTING AND PARTICIPANTS: Adult survivors (n = 25) during (Group 1 , n = 11) or post (Group 2, n = 14)-curative chemotherapy for solid tumours, most (n = 20, 80%) with breast cancer, were recruited prospectively from a single clinical centre. INTERVENTION: The Flinders Living Well Self-Management Program, a generic self-management care planning programme, was utilized to establish patient-led nutrition and exercise goals within a tailored 12-week intervention. Fortnightly progress reviews occurred with assessments at baseline, 6 and 12 weeks. RESULTS: Most participants (84%) found the intervention acceptable/very acceptable. Both groups showed a trend towards significant improvement in the self-management capability 'knowledge about changing risk factors' (P = 0.047); Group 2 showed a trend towards significantly improved 'psychological impacts' (P = 0.007). Goal ratings improved for both groups (P = 0.001). Quality of life improved for both groups for emotional functioning (P = 0.03). Physical functioning improved for Group 2 (P = 0.05); however, most symptom domains worsened for Group 1, as expected given their treatment stage. DISCUSSION AND CONCLUSIONS: Self-management interventions are feasible for this population. In particular, building self-management capacity during the active phase of patients' cancer treatment provides health and psychosocial benefits. Larger randomized controlled trials are required to further determine efficacy. Further translational research is also needed to determine acceptability,feasibility, enablers and barriers for clinicians embedding this approach into routine cancer survivorship care.


Asunto(s)
Neoplasias de la Mama/terapia , Ejercicio Físico , Evaluación Nutricional , Autocuidado , Adaptación Psicológica , Adulto , Enfermedad Crónica , Estudios de Factibilidad , Femenino , Humanos , Estilo de Vida , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Calidad de Vida , Autocuidado/psicología , Encuestas y Cuestionarios , Sobrevivientes , Resultado del Tratamiento
17.
J Ren Care ; 41(2): 96-103, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-25471138

RESUMEN

BACKGROUND: Patients with long-term conditions may benefit from involvement in decision-making and the management of their condition. This requires nurses to have a training role, which may conflict with their traditional identity as nurses. AIM: To explore the differences in attitudes and behaviours of 'carer' and 'trainer' nurses to patients taking increasing responsibility and control of their own care on long-term haemodialysis wards. DESIGN: Qualitative comparison of different nursing styles. METHODS: Semi-structured interviews were undertaken with 30 patients and 44 nurses between September and November 2012. Participants were recruited from seven haemodialysis units in the UK. Data were analysed thematically using codes derived from theories associated with the research questions. FINDINGS: 'Carer' nurses give bite-sized chunks of information to their patients about diet and medication. Treatment decisions are made with minimal patient discussion and all aspects of dialysis are performed by staff. Nurses who are most like trainers encourage patients to have a broader understanding of their condition and genuinely involve patients in decisions. Such nurses are happy to encourage appropriate patients to self-dialyse. CONCLUSION: Initiatives to enable patients with chronic illnesses to look after themselves have the potential to empower patients, aid recovery and save money. However, such initiatives can create tension between the carer identity of nurses and their role as trainers. To encourage haemodialysis patients to dialyse themselves, nurses need to: educate for broad understanding and empowerment; participate in patient-led decision-making about diet and lifestyle; and encourage shared decision-making for medication and dialysis.


Asunto(s)
Actitud del Personal de Salud , Toma de Decisiones , Fallo Renal Crónico/enfermería , Relaciones Enfermero-Paciente , Cuidadores/psicología , Femenino , Conductas Relacionadas con la Salud , Humanos , Entrevista Psicológica , Fallo Renal Crónico/psicología , Masculino , Persona de Mediana Edad , Rol de la Enfermera/psicología , Cooperación del Paciente/psicología , Educación del Paciente como Asunto/métodos , Poder Psicológico , Investigación Cualitativa , Diálisis Renal/enfermería , Diálisis Renal/psicología , Autocuidado/psicología
18.
J Ren Care ; 40 Suppl 1: 36-40, 2014 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-25185491

RESUMEN

BACKGROUND: Kidney Research UK, have been working since 2001 to raise health awareness, fund and oversee research into kidney related issues disproportionately affecting the BAME communities in the UK. Almost 10 years ago, the charity initiated its Peer Educator model which uses the natural skills of lay people and patients to raise awareness in these communities. AIMS: This article will describe the work of the Charity in relation to patient and public engagement, describing the Peer Educator model and providing examples of how it has been used. It will then focus on the deployment and impact of Peer Educators in an end of life project that the charity was involved in. MATERIALS & METHODS: Peer Educators (PEs) are ordinary people from the targeted community. In the case of our health improvement work, this has largely been the BAME communities. These people do not need any prior knowledge, training or experience in the subject matter. However, they do need to have a desire to give something back to their community in terms of health messages and also be passionate about the subject matter. They tend to have a natural empathy with the target groups in terms of culture, religion and language. RESULTS: The Peer Educator model, is it has been found, to be a flexible and highly adaptable approach to addressing health issues in the BAME communities. It has been utilised by the charity to address everything from early disease detection, prevention, management, organ donation awareness, right through to end of life issues. The model has been well evaluated in the area of organ donation whereby its effectiveness has been proven. Moreover, there have been several notable outcomes from the end of life work including training and deployment of 10 Peer Educators who reached over 2,700 people from diverse South Asian communities, providing important information on who does what, when, and how to access it--in a culturally competent manner. DISCUSSION & CONCLUSION: Kidney Research UK's Peer Educator initiative has been well established as an effective and flexible way to raise awareness and reach out to BAME patients and the communities at risk. The model has been deployed across the kidney disease spectrum including from early detection to diabetes management, right through to addressing organ donation and end of life issues.


Asunto(s)
Pueblo Asiatico/educación , Concienciación , Población Negra/educación , Barreras de Comunicación , Educación en Salud , Alfabetización en Salud , Fallo Renal Crónico/etnología , Fallo Renal Crónico/enfermería , Grupos Minoritarios/educación , Grupo Paritario , Humanos , Modelos Educacionales , Mejoramiento de la Calidad , Cuidado Terminal , Reino Unido
19.
J Ren Care ; 40(3): 157-63, 2014 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-24650128

RESUMEN

BACKGROUND: Constipation is a significant problem for many patients on peritoneal dialysis (PD). Due in part to dietary restrictions it is a common cause of technique failure and poor dialysis efficacy. Both consequences have an economic cost as well as contributing to a poor patient experience. OBJECTIVE: This study aimed to investigate whether an appropriate daily bowel habit could be achieved through a higher fibre intake, minimal use of laxatives and with no adverse effect on potassium, phosphate and fluid balance. METHODS: One hundred and seven patients who had been on PD for at least three months were recruited from seven renal units. They were asked to record daily bowel habits (Bristol Stool Form Scale: BSFS) and laxative use for four weeks. From this group 41 suitable patients with regular laxative use were identified and invited to enter the Intervention stage, Stage 2. Patients were randomised into one of three intervention arms: high fibre supplement (HFS); high fibre diet (HFD) or placebo. RESULTS: During the intervention stage, intake of HFS increased significantly between week 1 and week 4 (p = 0.04) and in the placebo group between week 1 and week 3 (p = 0.02). There was no significant increase in fibre intake for those on the HFD. Laxative dose appeared to decrease in the HFS group (38%) and the HFD group (16%) but these changes were not significant when compared to the placebo. CONCLUSION: This study has confirmed the prevalence of laxative use amongst patients on PD and shown that fibre use can confer improvements in bowel function without affecting biochemistry.


Asunto(s)
Estreñimiento/dietoterapia , Estreñimiento/enfermería , Fibras de la Dieta/administración & dosificación , Suplementos Dietéticos , Fallo Renal Crónico/enfermería , Laxativos/uso terapéutico , Diálisis Peritoneal/enfermería , Anciano , Utilización de Medicamentos/estadística & datos numéricos , Femenino , Humanos , Laxativos/efectos adversos , Masculino , Persona de Mediana Edad
20.
J Ren Care ; 40(2): 107-16, 2014 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-24650200

RESUMEN

BACKGROUND: The increasing prevalence of chronic kidney disease, the relative shortage of kidney donors and the economic- and health-related costs of kidney transplant rejection make the prevention of adverse outcomes following transplantation a healthcare imperative. Although strict adherence to immunosuppressant medicine regimens is key to preventing kidney rejection, evidence suggests that adherence is sub-optimal. Strategies need to be developed to help recipients of kidney transplants adhere to their prescribed medicines. FINDINGS: This review has found that a number of factors contribute to poor adherence, for example, attitudes towards medicine taking and forgetfulness. Few investigations have been conducted, however, on strategies to enhance medicine adherence in kidney transplant recipients. Strategies that may improve adherence include pharmacist-led interventions (incorporating counselling, medicine reviews and nephrologist liaison) and nurse-led interventions (involving collaboratively working with recipients to understand their routines and offering solutions to improve adherence). Strategies that have shown to have limited effectiveness include supplying medicines free of charge and providing feedback on a participant's medicine adherence without any educational or behavioural interventions. CONCLUSION: Transplantation is the preferred treatment option for people with end-stage kidney disease. Medicine non-adherence in kidney transplantation increases the risk of rejection, kidney loss and costly treatments. Interventions are needed to help the transplant recipient take all their medicines as prescribed to improve general well-being, medicine safety and reduce healthcare costs.


Asunto(s)
Rechazo de Injerto/enfermería , Rechazo de Injerto/prevención & control , Inmunosupresores/administración & dosificación , Trasplante de Riñón/enfermería , Trasplante de Riñón/psicología , Cumplimiento de la Medicación/psicología , Actitud Frente a la Salud , Conducta Cooperativa , Humanos , Comunicación Interdisciplinaria , Relaciones Enfermero-Paciente
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