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1.
Curr Opin Clin Nutr Metab Care ; 27(3): 219-225, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38386361

RESUMEN

PURPOSE OF REVIEW: Renal cachexia is a deleterious condition characterized by weight loss, muscle wasting and loss of physical function, quality of life, and increased mortality. Multimodal treatment strategies utilizing exercise and nutrition interventions have been recently suggested although the evidence base is still in its infancy. This paper aimed to review the current literature surrounding the use of exercise and nutrition for renal cachexia. MAIN FINDINGS: Evidence from systematic reviews and narrative reviews indicates that resistance training (RT) is proven to have beneficial effects on improving muscle strength and in some cases physical function, although effects on muscle mass are mixed and inconclusive. Further, combined RT and aerobic training (AT) may have also beneficial effects on overall functional capacity and there appears to be no superior mode of protocol (inter/intra-dialysis vs. home-based). For nutrition, there is new data from systematic review of studies indicating that oral nutritional supplementation (ONS) may have beneficial effects on nutritional status (e.g. body mass index, plasma albumin and handgrip strength). Omega-3 fatty acids have been shown to have anti-inflammatory effects in haemodialysis patients from two recent systematic reviews, and evidence from other populations groups indicate they may be beneficial for improving muscle mass and strength. SUMMARY: Evidence is accumulating for individual exercise and nutrition components but specific multimodal treatment studies in renal cachexia need to be urgently undertaken.


Asunto(s)
Caquexia , Calidad de Vida , Humanos , Caquexia/etiología , Caquexia/terapia , Fuerza de la Mano , Ejercicio Físico/fisiología , Estado Nutricional
2.
BMC Nephrol ; 25(1): 45, 2024 Jan 31.
Artículo en Inglés | MEDLINE | ID: mdl-38297189

RESUMEN

BACKGROUND: Individuals with chronic kidney disease experience difficult physical and psychological symptoms, that impact quality of life, and are at increased risk of anxiety and depression. Access to specialist psychological support is limited. This study aimed to support a new service development project, in collaboration with Kidney Care UK, to implement the Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, which provides accessible mindfulness techniques and practices to enhance compassion and resilience, and explore its feasibility for people living with stage 4 or 5 kidney disease and transplant. METHODS: A multi-method feasibility design was utilised. Participants over 18 years, from the UK, with stage 4 or 5 kidney disease or post-transplant, and who were not currently undergoing psychotherapy, were recruited to the four-week CMR programme. Data was collected at baseline, post-intervention and three-months post to measure anxiety, depression, self-compassion, mental wellbeing, resilience, and mindfulness. The acceptability of the intervention for a kidney disease population was explored through qualitative interviews with participants, and the Mindfulness Teacher. RESULTS: In total, 75 participants were recruited to the study, with 65 completing the CMR programme. The majority were female (66.2%) and post-transplant (63.1%). Analysis of completed outcome measures at baseline and post-intervention timepoints (n = 61), and three-months post intervention (n = 45) revealed significant improvements in participant's levels of anxiety (p < .001) and depression (p < .001), self-compassion (p = .005), mental wellbeing (p < .001), resilience (p.001), and mindfulness (p < .001). Thematic analysis of interviews with participants (n = 19) and Mindfulness Teacher (n = 1) generated three themes (and nine-subthemes); experiences of the CMR programme that facilitated subjective benefit, participants lived and shared experiences, and practicalities of programme participation. All participants interviewed reported that they found programme participation to be beneficial. CONCLUSION: The findings suggest that the CMR programme has the potential to improve psychological outcomes among people with chronic kidney disease. Future randomized controlled trials are required to further test its effectiveness.


Asunto(s)
Atención Plena , Insuficiencia Renal Crónica , Resiliencia Psicológica , Adulto , Femenino , Humanos , Masculino , Empatía , Estudios de Factibilidad , Atención Plena/métodos , Calidad de Vida , Insuficiencia Renal Crónica/psicología , Insuficiencia Renal Crónica/terapia
3.
Healthcare (Basel) ; 11(22)2023 Nov 07.
Artículo en Inglés | MEDLINE | ID: mdl-37998409

RESUMEN

In Colombia, timely access to palliative care (PC) is hampered by difficulties in identifying and referring to necessary services. The SPARC (Sheffield Profile for Assessment and Referral for Care) instrument provides a holistic needs assessment to improve referrals for different forms of care. SPARC was recently validated in Colombian Spanish (SPARC-Sp) but has not yet been implemented in clinical practice. We undertook workshops that aimed to co-design an implementation strategy to inform a future trial testing SPARC-Sp in the Colombian healthcare system. Workshop attendees included patients, informal caregivers, healthcare professionals, volunteers, administrative staff and decision makers. Discussions within the workshops refined implementation and dissemination strategies for SPARC-Sp in practical scenarios. Results include the need for education, clarification and demystification of PC and the lack of time and skills of professionals to identify patients' needs. Attendees recognized SPARC-Sp as a valuable tool for highlighting patients' concerns, whose adaptations are needed in Colombia to address the low literacy of the population and specificities of the healthcare system. We proposed local adaptations to SPARC-Sp and produced five educational videos aimed at health professionals, patients and caregivers to strengthen understanding of holistic needs in PC while building a strategy for SPARC-Sp implementation in the Colombian context.

4.
Healthcare (Basel) ; 11(22)2023 Nov 08.
Artículo en Inglés | MEDLINE | ID: mdl-37998417

RESUMEN

BACKGROUND: Kidney disease is a progressive, debilitating condition. Patients experience challenging physical and psychological symptoms and are at increased risk of anxiety, depression, and poor mental wellbeing. Access to specialist psychological or social support is limited, with inadequate provision of psychosocial support available across UK renal units. The COSMIC study (examining the acceptability and feasibility of the Compassionate Mindful Resilience programme for adult patients with chronic kidney disease) aimed to support a new service development project, in partnership with Kidney Care UK, by implementing the Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, and explore its feasibility for patients with stage 4 or 5 kidney disease and kidney transplant recipients. This paper reports on the qualitative exploratory work which examined the experiences of study participants, their adherence to practice, and the acceptability of the intervention. METHOD: Participants (n = 19) took part in semi-structured interviews, which were transcribed, coded, and thematically analysed. RESULTS: Three themes (and nine subthemes) were reported: experiences of the CMR programme that facilitated subjective benefit, participants' lived and shared experiences, and the practicalities of CMR programme participation. All participants reported that they found taking part in the CMR programme to be a beneficial experience. CONCLUSION: The CMR programme was found to be an acceptable intervention for people living with kidney disease and provided tools and techniques that support the mental health and wellbeing of this patient group. Further qualitative exploration into participant experience should be integrated within future trials of this intervention.

5.
Healthcare (Basel) ; 10(7)2022 Jun 23.
Artículo en Inglés | MEDLINE | ID: mdl-35885704

RESUMEN

Background: Providing holistic care to kidney patients is important; however, without full consideration of the perspectives of people living with a kidney transplant, the provision of truly 'holistic healthcare' cannot be possible. It is imperative to understand patient experiences by including kidney patients in key strategies and future renal service planning. Ignoring these important patient views means that there is a significant risk of inappropriate renal service provision and lack of adequate support, impacting overall health. The aim of this study was to develop an in-depth understanding of the lived experiences of kidney transplant recipients. Methods: A total of 23 participants were recruited between two regional nephrology units within the United Kingdom via clinical gatekeepers. In-depth interviews were undertaken. Interviews were digitally recorded, transcribed verbatim, and subjected to interpretative phenomenological analysis. Results: Two themes emerged: "managing ongoing fears of dialysis, distress, and COVID-19" and "dealing with difficult conversations". Conclusions: Renal healthcare professionals need to understand more than the biological impact of receiving a kidney transplant. Understanding the holistic and multidomain experiences that these participants experience will help healthcare professionals to recognize the needs of this group and ensure more responsive psychosocial care.

6.
Healthcare (Basel) ; 10(8)2022 Jul 25.
Artículo en Inglés | MEDLINE | ID: mdl-35893209

RESUMEN

Kidney disease is often progressive, and patients experience diminished health-related quality of life. In addition, the impact of the coronavirus (COVID-19) pandemic, and its associated restrictions, has brought many additional burdens. It is therefore essential that effective and affordable systems are explored to improve the psychological health of this group that can be delivered safely during the COVID-19 pandemic. The aim of this study is to support a new service development project in partnership with the UK's leading patient support charity Kidney Care UK by implementing the four-session Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, and explore its effectiveness for patients with stage 4 or 5 chronic kidney disease or have received a kidney transplant. The study will utilise a quasi-experimental, pretest/posttest design to measure the effect of the CMR programme on anxiety, depression, self-compassion, the ability to be mindful, wellbeing, and resilience, using pre- and posttests, alongside a qualitative exploration to explore factors influencing the feasibility, acceptability, and suitability of the intervention, with patients (and the Mindfulness Teacher) and their commitment to practice. Outcomes from this study will include an evidence-based mindfulness and compassion programme for use with people with kidney disease, which is likely to have applicability across other chronic diseases.

7.
BMJ Open ; 12(1): e058848, 2022 Jan 07.
Artículo en Inglés | MEDLINE | ID: mdl-34996806

RESUMEN

INTRODUCTION: Heart failure affects over 26 million people worldwide with prevalence expected to grow due to an ageing global population. Palliative care can address the holistic needs of patients with heart failure, and integrated palliative care in heart failure management has been indicated to improve outcomes for patients. Despite known benefits for integrated palliative care in heart failure management, implementation is poor across the majority of global health services. Recent systematic reviews have identified the benefits of integrating palliative care into heart failure management and highlighted barriers to implementation. However, there was heterogeneity in terms of countries, healthcare settings, delivery by differing staff across multidisciplinary teams, modes of delivery and different intervention components. METHODS AND ANALYSIS: The aim of this study is to identify how integrated palliative care and heart failure interventions produce desired outcomes, in which contexts, and for which patients. We will undertake a realist synthesis to identify this, using Pawson's five iterative steps. We will recruit an international stakeholder group comprised of healthcare providers and patients with heart failure to advise and provide feedback throughout the review. Our initial realist programme theory sets out the necessary steps needed to accomplish the final intended outcome(s) from the implementation of integrated palliative care and heart failure. This initial programme theory will be shaped through an iterative process of testing and refinement. ETHICS AND DISSEMINATION: Ethical approval is not required for this study. With our stakeholder group, we will coproduce a user guide that outlines practical advice to optimise, tailor and implement interventions designed to integrate palliative care and heart failure, taking into consideration local context, alongside user-friendly summaries of the synthesis findings using short animations to convey complex findings. We will draw on the expertise within the stakeholder group to identify key stakeholders for disseminating to relevant audiences, ensuring outputs are tailored for their respective needs. PROSPERO REGISTRATION NUMBER: CRD42021240185.


Asunto(s)
Insuficiencia Cardíaca , Enfermería de Cuidados Paliativos al Final de la Vida , Atención a la Salud , Retroalimentación , Insuficiencia Cardíaca/terapia , Humanos , Cuidados Paliativos
8.
BMC Nurs ; 20(1): 253, 2021 Dec 20.
Artículo en Inglés | MEDLINE | ID: mdl-34930234

RESUMEN

BACKGROUND: Mindfulness can potentially positively impact well-being and resilience in undergraduate nursing students. The psychological well-being of such students undertaking clinical training is paramount to ensure optimal learning, and to equip them with skills to manage their wellbeing in future clinical practice. The aim of our study was to explore the views of undergraduate nursing students in relation to understanding and engaging with mindfulness, and how mindfulness could best be delivered within their university programme. METHODS: An online survey was administered via a cloud-based student response system to a convenience sample of first year undergraduate nursing students completing a Bachelor of Science (BSc) Honours (Hons) degree in nursing at a University in the United Kingdom. Data were analysed using descriptive statistics and thematic analysis. RESULTS: The survey achieved a response rate of 78% (n = 208). Seventy-nine percent of participants had heard of mindfulness and were interested in taking part in a mindfulness programme. Respondents reported that the ideal delivery of the programme would consist of weekly 45-min, in person group sessions, over a 6-week period. Respondents also indicated that a mobile application could potentially facilitate participation in the programme. Thematic analysis of open-ended comments, and free text, within the survey indicated 4 overarching themes: 1) Perceptions of what mindfulness is; 2) Previous mindfulness practice experiences; 3) Impact of mindfulness in nursing; 4) The need for a future well-being initiative for undergraduate nursing students. CONCLUSIONS: Undergraduate nursing students perceived that a mindfulness programme has the potential to enhance well-being and future clinical practice. This student cohort are familiar with mindfulness and want more integrated within their undergraduate curriculum. Further research is required to examine the effectiveness of a tailored mindfulness intervention for this population that incorporates the use of both face-to-face and mobile delivery.

9.
J Cachexia Sarcopenia Muscle ; 12(6): 1621-1640, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34585539

RESUMEN

Sarcopenia is an age-related progressive muscle disease characterized by loss of muscle mass, muscle strength and physical performance with high prevalence in chronic kidney disease (CKD). CKD is associated with decreased muscle protein synthesis and muscle breakdown due to a number of factors including, the uremic inflammatory environment of the disease. CKD patients are highly sedentary and at risk of malnutrition which may exacerbate sarcopenia outcomes even further. Short and long-term exercise and nutritional interventions have been studied and found to have some positive effects on sarcopenia measures in CKD. This narrative review summarized evidence between 2010 and 2020 of resistance exercise (RE) alone or combined with nutritional interventions for improving sarcopenia outcomes in CKD. Due to lack of CKD-specific sarcopenia measures, the second European Working Group on Sarcopenia in Older People (EWGSOP2) definition has been used to guide the selection of the studies. The literature search identified 14 resistance exercise-based studies and 5 nutrition plus RE interventional studies. Muscle strength outcomes were increased with longer intervention duration, intervention supervision, and high participant adherence. Data also suggested that CKD patients may require increased RE intensity and progressive loading to obtain detectable results in muscle mass. Unlike muscle strength and muscle mass, physical performance was readily improved by all types of exercise in long or short-term interventions. Four studies used RE with high-protein nutritional supplementation. These showed significant benefits on muscle strength and physical performance in dialysis patients while non-significant results were found in muscle mass. More research is needed to confirm if a combination of RE and vitamin D supplementation could act synergistically to improve muscle strength in CKD. The current evidence on progressive RE for sarcopenia in CKD is encouraging; however, real-life applications in clinical settings are still very limited. A multidisciplinary patient-centred approach with regular follow-up may be most beneficial due to the complexity of sarcopenia in CKD. Long-term randomized control trials are needed to verify optimal RE prescription and explore safety and efficacy of other nutritional interventions in CKD.


Asunto(s)
Insuficiencia Renal Crónica , Entrenamiento de Fuerza , Sarcopenia , Anciano , Ejercicio Físico , Humanos , Fuerza Muscular , Insuficiencia Renal Crónica/complicaciones , Insuficiencia Renal Crónica/terapia , Sarcopenia/etiología , Sarcopenia/terapia
10.
BMC Nephrol ; 22(1): 301, 2021 09 07.
Artículo en Inglés | MEDLINE | ID: mdl-34493246

RESUMEN

BACKGROUND: Globally, renal healthcare practitioners provide intensive and protracted support to a highly complex multi-morbid patient population however knowledge about the impact of COVID-19 on these practitioners is extremely limited. OBJECTIVE: This study aimed to explore the experiences of COVID-19 with renal healthcare practitioners during the first global lockdown between June 2020 and September 2020. METHODS: A multi-methods approach was carried out including a quantitative survey and qualitative interviews. This was a multinational study of renal healthcare practitioners from 29 countries. Quantitative: A self-designed survey on COVID-19 experiences and standardised questionnaires (General Health Questionnaire-12; Maslach Burnout Inventory). Descriptive statistics were generated for numerical data. Qualitative: Online semi-structured interviews were conducted. Data was subjected to thematic analysis. Renal healthcare practitioners (n = 251) completed an online survey. Thirteen renal healthcare practitioners took part in semi-structured interviews (12 nurses and 1 dietician). RESULTS: The majority of participants surveyed were female (86.9 %; n = 218), nurses (86.9 %; n = 218) with an average 21.5 (SD = 11.1) years' experience since professional qualification, and 16.3 years (SD = 9.3) working in renal healthcare. Survey responses indicated a level of preparedness, training and satisfactory personal protective equipment during the pandemic however approximately 40.3 % experienced fear about attending work, and 49.8 % experienced mental health distress. The highest prevalence of burnout was emotional exhaustion (35.9 %). Three themes emerged from the qualitative analysis highlighting the holistic complexities in managing renal healthcare, a neglected specialist workforce, and the need for appropriate support at work during a pandemic. CONCLUSIONS: Results have highlighted the psychological impact, in terms of emotional exhaustion and mental health distress in our sample of renal healthcare practitioners. As the pandemic has continued, it is important to consider the long-term impact on an already stretched workforce including the risk of developing mental health disorders. Future research and interventions are required to understand and improve the provision of psychological support for specialist medical and nursing personnel.


Asunto(s)
COVID-19/epidemiología , Salud Global , Nefrología/estadística & datos numéricos , Pandemias , Adulto , Anciano , Agotamiento Profesional/epidemiología , Agotamiento Profesional/psicología , COVID-19/terapia , Competencia Clínica/estadística & datos numéricos , Miedo/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Enfermería en Nefrología/economía , Enfermería en Nefrología/estadística & datos numéricos , Personal de Enfermería en Hospital/psicología , Personal de Enfermería en Hospital/estadística & datos numéricos , Enfermedades Profesionales/epidemiología , Enfermedades Profesionales/psicología , Equipo de Protección Personal , Distrés Psicológico , Investigación Cualitativa , Recursos Humanos
11.
BMC Nephrol ; 21(1): 497, 2020 11 19.
Artículo en Inglés | MEDLINE | ID: mdl-33213413

RESUMEN

BACKGROUND: Haemodialysis can negatively impact quality of life and mental health. Arts-based interventions used successfully in other settings to improve health and well-being, could help address the impact of haemodialysis. This study aimed to evaluate the feasibility and acceptability of conducting a randomised controlled trial (RCT) of an arts-based intervention for patients receiving haemodialysis. METHODS: A parallel convergent mixed-methods design was used, including a pilot cluster RCT and qualitative process evaluation. Phase 1 evaluated recruitment and retention rates through a pilot cluster RCT at a single haemodialysis unit in Northern Ireland. Participants included patients who received haemodialysis for ESKD, were over the age of 18 and had the capacity to consent. These participants were randomised to the intervention or control group according to their haemodialysis shift. The intervention involved six one-hour, one-to-one facilitated arts sessions during haemodialysis. Phase 2 explored intervention and trial acceptability through a qualitative process evaluation using semi-structured interviews based on the RE-AIM framework. Participants included 13 patients who participated in phase 1 of the study, including 9 participants from the experimental group and four participants from the control group, and nine healthcare professionals who were present on the unit during implementation. RESULTS: Out of 122 outpatient haemodialysis patients, 94 were assessed as eligible for participation. Twenty-four participants were randomised, meaning 80% of the target sample size was recruited and the attrition rate at 3 months was 12.5% (n = 3). Participants viewed the arts as more accessible and enjoyable than anticipated following implementation. All participants who started the intervention (n = 11) completed the full six sessions. Qualitative benefits of the intervention suggest improvements in mental well-being. Patient choice and facilitation were important factors for successful implementation. CONCLUSION: An arts-based intervention for patients receiving haemodialysis is acceptable for both patients and healthcare professionals, and a definitive trial is feasible. The intervention may help improve mental-wellbeing in patients receiving haemodialysis, but this requires further investigation in a definitive trial. TRIAL REGISTRATION: The trial was prospectively registered on clinicaltrials.gov on 14/8/2018, registration number NCT03629496 .


Asunto(s)
Arteterapia , Salud Mental , Calidad de Vida , Diálisis Renal , Adulto , Anciano , Anciano de 80 o más Años , Estudios de Factibilidad , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Pacientes Ambulatorios , Selección de Paciente , Ensayos Clínicos Controlados Aleatorios como Asunto , Diálisis Renal/psicología
12.
Psychooncology ; 29(5): 920-926, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-32100364

RESUMEN

OBJECTIVE: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers. METHODS: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018. Focus groups and interviews were transcribed verbatim and analyzed using thematic analysis. Resource components were verified at two joint stakeholder workshops attended by 40 participants. RESULTS: The development of a web-based resource was identified as an urgent need. A web-based resource was viewed as a suitable interface to provide support across regions in a sustainable way. The structure of the resource should include peer-led videoed advice, signposting to services and include official endorsement. The potential resource components identified includes (a) cancer causes and consequences; (b) hospital administration, treatment processes, and prices; (c) daily living; (d) emotional and supportive information; (e) skills training; and (f) nutrition and traditional medicine. CONCLUSION: The development of a web-based resource to deliver information and psychosocial supports to cancer carers and by-proxy patients is an urgent requirement in Vietnam. Next steps will include resource development and testing the resources ability to address the unmet needs of cancer carers and patients. A web-based resource to support cancer carers has the potential for application to other developing countries.


Asunto(s)
Actitud Frente a la Salud , Cuidadores/psicología , Promoción de la Salud/métodos , Neoplasias/psicología , Relaciones Profesional-Familia , Adulto , Instrucción por Computador/métodos , Femenino , Grupos Focales , Humanos , Internet , Masculino , Persona de Mediana Edad , Neoplasias/rehabilitación , Apoyo Social , Vietnam
13.
Br J Nurs ; 28(12): 798-802, 2019 Jun 27.
Artículo en Inglés | MEDLINE | ID: mdl-31242119

RESUMEN

BACKGROUND: it is recognised that mindfulness training can positively impact holistic wellbeing and can improve mood, focus and resilience. Health service students often experience high levels of psychological morbidity. Engaging in mindfulness techniques may positively impact the psychological wellbeing of healthcare students. This is of vital importance to ensure optimum learning for healthcare practice with its associated challenges. METHOD: an evaluation was conducted with medical students (n=4) and PhD nursing students (n=6), who took part in a mindfulness-based workshop, followed by five weekly 30-minute sessions of mindfulness training, including a 15-minute meditation exercise. Data collection was carried out at baseline and post intervention, followed by a focus group discussion to elucidate qualitative experiences. RESULTS: significant findings were identified with respect to cognitive mindfulness scores (P=0.02) and resilience (P=0.04). DISCUSSION: data reflected three themes: the impact of mindfulness and maintaining practice, improvements in wellbeing, and improvements in academic endeavour. CONCLUSIONS: this evaluation found significant improvements in the ability to cope with stress and increased attention and resilience in all students. Although results are not generalisable in this small evaluation, students reported increased concentration levels and improved focus, both of which are likely to impact positively on any psychological symptoms, particularly those related to workload pressures.


Asunto(s)
Atención Plena/educación , Estudiantes de Medicina/psicología , Estudiantes de Enfermería/psicología , Adaptación Psicológica , Atención , Educación Médica , Educación de Postgrado en Enfermería , Grupos Focales , Humanos , Investigación en Educación de Enfermería , Investigación en Evaluación de Enfermería , Resiliencia Psicológica , Estrés Psicológico/psicología
14.
BMC Palliat Care ; 18(1): 22, 2019 Feb 27.
Artículo en Inglés | MEDLINE | ID: mdl-30813937

RESUMEN

BACKGROUND: Chronic lung diseases, such as COPD, are a growing health concern within the veteran population. Palliative care programs have mainly focused on the needs of people with malignant disease in the past, however the majority of those worldwide needing palliative care have a non-malignant diagnosis. Additionally, palliative care provision can often be fragmented and varied dependent upon a patient's geographical location. This study aimed to explore palliative care provision for veterans with non-malignant respiratory disease, and their family carers, living in a rural area of America. METHODS: Qualitative study involving a convenience sample of 16 healthcare professionals from a large veteran hospital in Boise, Idaho. Data collection consisted of 5 focus groups which were transcribed verbatim and analysed using thematic analysis. RESULTS: Healthcare professionals perceived that a lack of education regarding disease progression enhanced feelings of anxiety amongst veterans with NMRD, and their family carers. Additionally, the uncertain disease trajectory impeded referral to palliative and hospice services due to healthcare professionals own ambiguity regarding the veteran's prognosis. A particular barrier also related to this particular patient population, was a perceived lack of ability to afford relevant services and a lack of local palliative service provision. Healthcare professionals expressed that a compounding factor to palliative care uptake was the perceptions held by the veteran population. Healthcare professionals expressed that alongside aligning palliative care with dying, veterans also viewed accepting palliative care as 'surrendering' to their disease. Findings indicated that telemedicine may be a beneficial platform to which palliative care can be provided to veterans with NMRD, and their family carers, in rural areas using a digital platform. CONCLUSION: Non-malignant respiratory disease is a life limiting condition commonly experienced within the veteran population. A new model of palliative care utilising a dynamic digital platform for this particular veteran population may provide an optimal way of providing efficient holistic care to areas with limited palliative services.


Asunto(s)
Actitud del Personal de Salud , Personal de Salud/psicología , Enfermedades Pulmonares/complicaciones , Veteranos , Adulto , Femenino , Grupos Focales/métodos , Humanos , Idaho , Enfermedades Pulmonares/psicología , Masculino , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Investigación Cualitativa , Población Rural
15.
BMC Palliat Care ; 17(1): 125, 2018 Nov 27.
Artículo en Inglés | MEDLINE | ID: mdl-30482192

RESUMEN

BACKGROUND: Evidence about the effectiveness of music therapy for improving the quality of life of palliative care patients is positive but weak in terms of risk of bias. METHODS: This study aimed to determine the feasibility of a randomised controlled trial to evaluate the effectiveness of music therapy for improving the quality of life of hospice inpatients, as measured by the McGill Quality of Life questionnaire. Objectives included recruitment of 52 participants over 12 months and provision of data to support the calculation of the required sample size for a definitive randomised trial, taking into account the retention rates of recruited participants; and evaluation of the viability of the intervention and the acceptability of the assessment tool. The design was a single-centre, researcher-blinded randomised pilot and feasibility study involving two parallel groups. Participants were recruited from one inpatient hospice unit in Northern Ireland. Eligibility criteria were an Eastern Cooperative Oncology Group performance status of two or lower and an Abbreviated Mental Test score of seven or more. Consenting patients were randomly allocated to the intervention or control group using a 1:1 allocation ratio. The intervention group received up to six individual music therapy sessions over 3 weeks in addition to usual care. The control group received usual care only. RESULTS: Fifty one participants were recruited over 12 months. Twenty five were allocated to the intervention group and 26 to the control group. Seventy one percent of participants were lost to follow up by week 3, the proposed primary endpoint. The primary endpoint was moved from week 3, when 71% were lost to follow up to week 1, when 33% were lost. The McGill Quality of Life questionnaire was generally acceptable to participants. In order to detect a small to moderate effect size of 0.3, a fully powered study would require the recruitment of 698 participants. CONCLUSIONS: A Phase III randomised controlled trial to evaluate the effectiveness of music therapy in improving the quality of life of hospice inpatients is feasible. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02791048 . Registered 6 June 2016.


Asunto(s)
Pacientes Internos/psicología , Musicoterapia , Calidad de Vida/psicología , Enfermo Terminal/psicología , Anciano , Estudios de Factibilidad , Femenino , Hospitales para Enfermos Terminales , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Irlanda del Norte , Proyectos Piloto , Resultado del Tratamiento
16.
BMJ Support Palliat Care ; 8(3): 282-284, 2018 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-29475896

RESUMEN

Music therapy aligns to the holistic approach to palliative and end-of-life care (PEOLC), with an emergent evidence base reporting positive effect on a range of health-related outcomes for both patient and family carer alongside high client demand. However, the current service provision and the role of music therapists in supporting individuals receiving PEOLC in the UK is currently unknown. OBJECTIVES: This service evaluation aims to identify the provision, role and perceived impact of UK music therapists in supporting patients receiving PEOLC, their families and health and social care professionals. METHODS: A survey was distributed to the British Association for Music Therapy (BAMT) member mailing list in July 2017. BAMT is the professional body for Health and Care Professions Council registered music therapists in the UK. RESULTS: Fifty respondents identified themselves as music therapists currently working with clients receiving PEOLC. The respondents largely reported (84.7%) less than 10 years of experience working in PEOLC settings, with only a minority receiving statutory funding for their role. Music therapists most commonly reported supporting adults with neurological conditions, cancers and dementia. CONCLUSIONS: Although promising that evidence suggests provision of music therapy in UK PEOLC settings in the past 10 years to have increased, lack of sustainable funding suggests the role to not be consistently accessible in PEOLC.


Asunto(s)
Encuestas de Atención de la Salud , Musicoterapia/estadística & datos numéricos , Cuidados Paliativos/estadística & datos numéricos , Cuidado Terminal/estadística & datos numéricos , Adulto , Anciano , Demencia/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Musicoterapia/métodos , Neoplasias/terapia , Cuidados Paliativos/métodos , Cuidado Terminal/métodos , Reino Unido
17.
BMC Palliat Care ; 16(1): 70, 2017 Dec 08.
Artículo en Inglés | MEDLINE | ID: mdl-29221475

RESUMEN

BACKGROUND: Music therapy is increasingly used as an adjunct therapy to support symptom management in palliative care. However, studies to date have paid little attention to the processes that lead to changes in patient outcomes. To fill this gap, we examined the processes and experiences involved in the introduction of music therapy as an adjunct complementary therapy to palliative care in a hospice setting in the United Kingdom (UK). METHODS: Using a realistic evaluation approach, we conducted a qualitative study using a variety of approaches. These consisted of open text answers from patients (n = 16) on how music therapy helped meet their needs within one hospice in Northern Ireland, UK. We also conducted three focus groups with a range of palliative care practitioners (seven physicians, seven nursing staff, two social workers and three allied health professionals) to help understand their perspectives on music therapy's impact on their work setting, and what influences its successful implementation. This was supplemented with an interview with the music therapist delivering the intervention. RESULTS: Music therapy contains multiple mechanisms that can provide physical, psychological, emotional, expressive, existential and social support. There is also evidence that the hospice context, animated by a holistic approach to healthcare, is an important facilitator of the effects of music therapy. Examination of patients' responses helped identify specific benefits for different types of patients. CONCLUSIONS: There is a synergy between the therapeutic aims of music therapy and those of palliative care, which appealed to a significant proportion of participants, who perceived it as effective.


Asunto(s)
Musicoterapia/normas , Cuidados Paliativos/métodos , Grupos Focales , Humanos , Cuidados Paliativos/psicología , Proyectos Piloto , Investigación Cualitativa , Encuestas y Cuestionarios , Reino Unido
18.
BMC Palliat Care ; 17(1): 6, 2017 Jul 11.
Artículo en Inglés | MEDLINE | ID: mdl-28693466

RESUMEN

BACKGROUND: Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland. METHODS: Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis. RESULTS: Findings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management. CONCLUSION: This research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.


Asunto(s)
Cuidados Paliativos , Rol Profesional , Insuficiencia Respiratoria/terapia , Adulto , Anciano , Anciano de 80 o más Años , Actitud del Personal de Salud , Femenino , Grupos Focales , Humanos , Irlanda , Masculino , Persona de Mediana Edad , Cuidados Paliativos/métodos , Investigación Cualitativa , Recursos Humanos
19.
Curr Opin Support Palliat Care ; 8(4): 334-8, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25144837

RESUMEN

PURPOSE OF REVIEW: Cancer cachexia has a substantial impact on both patients and their family carers. It has been acknowledged as one of the two most frequent and devastating problems of advanced cancer. The impact of cachexia spans biopsychosocial realms. Symptom management in cachexia is fraught with difficulties and globally, there remains no agreed standard care or treatment for this client group. There is a need to address the psychosocial impact of cachexia for both patients and their family carers. RECENT FINDINGS: Patients living at home and their family carers are often left to manage the distressing psychosocial impacts of cancer cachexia themselves. Successful symptom management requires healthcare professionals to address the holistic impact of cancer cachexia. High quality and rigorous research details the existential impact of cachexia on patients and their family carers. This information needs to inform psychosocial, educational and communicative supportive healthcare interventions to help both patients and their family carers better cope with the effects of cachexia. SUMMARY: Supportive interventions need to inform both patients and their family carers of the expected impacts of cachexia, and address how to cope with them to retain a functional, supported family unit who are informed about and equipped to care for a loved one with cachexia.


Asunto(s)
Caquexia/psicología , Cuidadores/psicología , Comunicación , Educación en Salud/métodos , Neoplasias/psicología , Adaptación Psicológica , Caquexia/etiología , Humanos , Neoplasias/complicaciones , Cuidados Paliativos/psicología , Investigación Cualitativa
20.
Oncol Nurs Forum ; 40(6): E393-402, 2013 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-24161643

RESUMEN

PURPOSE/OBJECTIVES: To explore healthcare professionals' experience, understanding, and perception of the needs of patients with cachexia in advanced cancer. RESEARCH APPROACH: A qualitative approach based on symbolic interactionism. SETTING: A regional cancer center in a large teaching hospital in the United Kingdom. PARTICIPANTS: 34 healthcare professionals who had experience providing care to patients with cachexia in advanced cancer. METHODOLOGIC APPROACH: Data collection consisted of two phases: focus group and semistructured interviews. Interviews were digitally recorded and transcribed verbatim for analysis. This article reports on findings from the second phase of data collection. FINDINGS: Analysis revealed that professional approaches to cachexia were influenced by three overarching and interthinking themes: knowledge, culture, and resources. Healthcare professionals commonly recognized the impact of the syndrome; however, for nonpalliative healthcare professionals, a culture of avoidance and an overreliance on the biomedical model of care had considerable influence on the management of cachexia in patients with advanced cancer. CONCLUSIONS: Cachexia management in patients with advanced cancer can be difficult and is directed by a variable combination of the influence of knowledge, culture of the clinical area, and available resources. Distinct differences exist in the management of cachexia among palliative and nonpalliative care professionals. INTERPRETATION: This study presented a multiprofessional perspective on the management of cachexia in patients with advanced cancer and revealed that cachexia is a complex and challenging syndrome that needs to be addressed from a holistic model of care. KNOWLEDGE TRANSLATION: Cachexia management in patients with advanced cancer is complex and challenging and is directed by a combination of variables. An overreliance on the biomedical model of health and illness occurs in the management of cachexia in patients with advanced cancer. Cachexia needs to be addressed from a holistic model of care to reflect the multidimensional needs of patients and their families.


Asunto(s)
Actitud del Personal de Salud , Caquexia/etiología , Neoplasias/complicaciones , Personal de Hospital/psicología , Caquexia/diagnóstico , Caquexia/enfermería , Caquexia/psicología , Instituciones Oncológicas , Cultura , Grupos Focales , Hospitales de Enseñanza , Humanos , Entrevistas como Asunto , Neoplasias/enfermería , Neoplasias/psicología , Neoplasias/terapia , Enfermeras Clínicas/psicología , Enfermeras y Enfermeros/psicología , Nutricionistas/psicología , Cuidados Paliativos/psicología , Personal de Hospital/educación , Personal de Hospital/provisión & distribución , Médicos/psicología , Relaciones Profesional-Paciente , Investigación Cualitativa , Administración del Tiempo , Reino Unido , Pérdida de Peso
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