Nurse-led integration of palliative care for chronic obstructive pulmonary disease: An integrative literature review.

AIMS AND OBJECTIVES: To uncover what is known about nurse-led models or interventions that have integrated palliative care into the care of patients with chronic obstructive pulmonary disease. BACKGROUND: Chronic obstructive pulmonary disease is a highly symptomatic, incurable disease characterised by chronic symptoms that without appropriate palliation can lead to unnecessary suffering for patients and their caregivers. While palliative care practices can relieve suffering and improve quality of life, most palliative models of care remain cancer-focused. New models, including nurse-led care that integrates palliative care for patients with chronic obstructive pulmonary disease, could address patient suffering and therefore need to be explored. METHOD: A mixed-studies integrative review was undertaken. Seven databases were searched for articles published between 2008-2018. The PRISMA framework was applied to the search, and six studies met the review eligibility criteria. Content analysis of the articles was undertaken, and data were compared, looking for different nurse-led models and outcomes related to palliative care in chronic obstructive pulmonary disease. RESULTS: Nurse-led, integrated palliative care models for patients with chronic obstructive pulmonary disease are rare and just four of the six articles found in this review had published results. Advance care planning was found to be the most common focus for nurse-led interventions in chronic obstructive pulmonary disease, and in all cases, results demonstrated an improvement in end-of-life discussions and completion of advance care directives. Of the reviewed articles, none used a qualitative framework to explore nurse-led models that integrated palliative care in chronic obstructive pulmonary disease. CONCLUSION: While nurse-led advance care planning was one type of palliative care practice associated with positive patient outcomes, there is a need for deeper exploration of nurse-led models that holistically address the bio-psycho-social-spiritual needs of patients with chronic obstructive pulmonary disease, and their caregivers. RELEVANCE TO CLINICAL PRACTICE: Integrating nurse-led supportive care clinics into chronic obstructive pulmonary disease services could be a way forward to address the unmet bio-psycho-social-spiritual needs of patients with chronic obstructive pulmonary disease, and their caregivers.

Enabling patients with advanced chronic obstructive pulmonary disease to identify and express their support needs to health care professionals: A qualitative study to develop a tool.

BACKGROUND: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this. AIM: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals. DESIGN: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability. SETTING/PARTICIPANTS: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated. RESULTS: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool's content and wording. CONCLUSION: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.

Development of a complex intervention for early integration of palliative home care into standard care for end-stage COPD patients: A Phase 0-I study.

BACKGROUND: Research suggests that palliative home care should be integrated early into standard care for end-stage COPD patients. Patients also express the wish to be cared for and to die at home. However, a practice model for early integration of palliative home care (PHC) into standard care for end-stage COPD has not been fully developed. AIM: To develop an intervention for early integration of PHC into standard care for end-stage COPD patients. METHODS: We conducted a Phase 0-I study according to the Medical Research Council Framework for the development of complex interventions. Phase 0 aimed to identify the inclusion criteria and key components of the intervention by way of an explorative literature search of interventions, expert consultations, and seven focus groups with general practitioners and community nurses on perceived barriers to and facilitators of early integrated PHC for COPD. In Phase 1, the intervention, its inclusion criteria and its components were developed and further refined by an expert panel and two expert opinions. RESULTS: Phase 0 resulted in identification of inclusion criteria and components from existing interventions, and barriers to and facilitators of early integration of PHC for end-stage COPD. Based on these findings, a nurse-led intervention was developed in Phase I consisting of training for PHC nurses in symptom recognition and physical therapy exercises for end-stage COPD, regular visits by PHC nurses at the patients' homes, two information leaflets on self-management, a semi-structured protocol and follow-up plan to record the outcomes of the home visits, and integration of care by enabling collaboration and communication between home and hospital-based professional caregivers. CONCLUSION: This Phase 0-I trial succeeded in developing a complex intervention for early integration of PHC for end-stage COPD. The use of three methods in Phase 0 gave reliable data on which to base inclusion criteria and components of the intervention. The preliminary effectiveness, feasibility and acceptability of the intervention will be subsequently tested in a Phase II study.

Non-pharmacological management of chronic breathlessness in stable chronic obstructive pulmonary disease.

This paper will review and address the pathological processes in chronic obstructive pulmonary disease (COPD), including the prevalence of comorbidities and the implications of these factors for a common disabling COPD symptom, breathlessness. It will further consider non-pharmacological strategies that community nurses can use to support breathlessness relief in the context of holistic patient care.

A case series of an off-the-shelf online health resource with integrated nurse coaching to support self-management in COPD.

BACKGROUND: COPD has significant psychosocial impact. Self-management support improves quality of life, but programs are not universally available. IT-based self-management interventions can provide home-based support, but have mixed results. We conducted a case series of an off-the-shelf Internet-based health-promotion program, The Preventive Plan (TPP), coupled with nurse-coach support, which aimed to increase patient activation and provide self-management benefits. MATERIALS AND METHODS: A total of 19 COPD patients were recruited, and 14 completed 3-month follow-up in two groups: groups 1 and 2 with more and less advanced COPD, respectively. Change in patient activation was determined with paired t-tests and Wilcoxon signed-rank tests. Benefits and user experience were explored in semistructured interviews, analyzed thematically. RESULTS: Only group 1 improved significantly in activation, from a lower baseline than group 2; group 1 also improved significantly in mastery and anxiety. Both groups felt significantly more informed about COPD and reported physical functioning improvements. Group 1 reported improvements in mood and confidence. Overall, group 2 reported fewer benefits than group 1. Both groups valued nurse-coach support; for group 1, it was more important than TPP in building confidence to self-manage. The design of TPP and lack of motivation to use IT were barriers to use, but disease severity and poor IT skills were not. DISCUSSION: Our findings demonstrate the feasibility of combining nurse-coach support aligned to an Internet-based health resource, TPP, in COPD and provide learning about the challenges of such an approach and the importance of the nurse-coach role.

The future of community nursing: Hospital in the Home.

With an increasing ageing population who often have multiple long-term conditions, there is a growing need to provide an alternative type of care to the traditional hospital-based model. 'Hospital in the Home' is a model that provides integrated care for patients in their home. The @home service was established in 2013 by Guy's and St Thomas' NHS Foundation Trust. The service provides health care in patients' home, supporting early discharge from hospital as well as preventing avoidable admissions and readmissions saving valuable hospital bed days and reducing length of stay. This article describes the service available with the use of a case study of a 78-year-old lady who was referred by the London Ambulance Service with exacerbation of chronic obstructive pulmonary disease (COPD). This case study highlights the ability to assess, treat and manage an acutely unwell patient with newly diagnosed heart failure in the community without the need for hospitalisation. This type of integrated care model with a multidisciplinary team is a feasible alternative to the traditional models of care in both the acute and community settings.

The effect of transcutaneous electrical nerve stimulation in patients with acute exacerbation of chronic obstructive pulmonary disease: randomised controlled trial.

AIMS AND OBJECTIVES: The aim of the present study was to assess the efficacy of transcutaneous electrical nerve stimulation in patients with acute exacerbation of chronic obstructive pulmonary disease. BACKGROUND: In patients with stable chronic obstructive pulmonary disease, transcutaneous electrical nerve stimulation has been known to attain improvement in forced expiratory volume in 1 seconds, physical activity, and quality of life. However, information about the effects of transcutaneous electrical nerve stimulation on acute exacerbation of chronic obstructive pulmonary disease is quite limited. DESIGN: A single-blind, randomised controlled trial. METHODS: Data were collected between August 2013-May 2014. Eighty-two patients who were hospitalised with a diagnosis of acute exacerbation of chronic obstructive pulmonary disease were randomly assigned to a transcutaneous electrical nerve stimulation group receiving transcutaneous electrical nerve stimulation treatment for 20 seance over the acupuncture points with pharmacotherapy or placebo group receiving the same treatment without electrical current output from the transcutaneous electrical nerve stimulation device. Pulmonary functional test, six-minute walking distance, dyspnoea and fatigue scale, and St. George's Respiratory Questionnaire scores were assessed pre- and postprogram. The program started at the hospital by the researcher was sustained in the patient's home by the caregiver. RESULTS: All patients were able to complete the program, despite the exacerbation. The 20 seance transcutaneous electrical nerve stimulation program provided clinically significant improvement in forced expiratory volume in 1 seconds 21 ml, 19·51% but when compared with the placebo group, the difference was insignificant (p > 0·05). The six-minute walking distance increased by 48·10 m more in the placebo group (p < 0·05). There were no significant differences between the two groups' St. George's Respiratory Questionnaire, dyspnoea and fatigue score (p > 0·05). CONCLUSION: Adding transcutaneous electrical nerve stimulation therapy to pharmacotherapy in patients with acute exacerbation of chronic obstructive pulmonary disease provided clinical improvement in forced expiratory volume in 1 seconds and add benefit in exercise capacity, but no significant effect on the other outcomes measured. RELEVANCE TO CLINICAL PRACTICE: Transcutaneous electrical nerve stimulation can be used as a non-invasive complementary therapy due to its beneficial effects on forced expiratory volume in 1 seconds and exercise capacity in patients with acute exacerbation of chronic obstructive pulmonary disease.

Vivir con la enfermedad pulmonar obstructiva crónica avanzada: el impacto de la disnea en los pacientes y cuidadores / Living with advanced chronic obstructive pulmonary disease: the impact of dyspnoea on patients and caregivers

OBJECTIVO: Conocer las experiencias de pacientes y cuidadores que conviven con la enfermedad pulmonar obstructiva crónica avanzada, el impacto de sus síntomas y las necesidades de atención que generan en su contexto funcional, emocional y social. DISEÑO: Estudio cualitativo. Perspectiva fenomenológica. Recogida de datos durante 2013-2015. EMPLAZAMIENTO: Atención primaria, hospitalaria e intermedia. Osona (Barcelona). PARTICIPANTES Y/O CONTEXTOS: Diez pacientes de atención primaria con enfermedad pulmonar obstructiva crónica avanzada, 10 cuidadores principales respectivos y 19 profesionales de atención primaria, 2 neumólogos, 2 de cuidados paliativos, implicados en su atención y un psicólogo clínico. MÉTODO: Muestreo teórico. Entrevistas semiestructuradas y en profundidad a pacientes, cuidadores y profesionales (47 entrevistas). RESULTADOS: Las temáticas emergentes identificadas en las entrevistas de pacientes y cuidadores hacen referencia a la disnea, síntoma predominante sin un tratamiento efectivo y con un gran impacto en la vida de pacientes y cuidadores. Un síntoma con gran repercusión funcional, emocional y social al que es necesario adaptarse para sobrevivir. CONCLUSIONES: La atención adecuada de los pacientes con enfermedad pulmonar obstructiva crónica, más allá de las medidas farmacológicas para controlar los síntomas respiratorios, pasa por la comprensión del sufrimiento, las pérdidas y las limitaciones que provoca en sus vidas y las de sus cuidadores. Un abordaje paliativo, holístico y cercano a sus vivencias reales, junto al empoderamiento para la adaptación a los síntomas debilitantes, podría contribuir a una vida mejor en la etapa final de la enfermedad

AIM: To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. DESIGN: Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. SETTING: Primary, secondary and intermediate care. Osona (Barcelona). PARTICIPANTS. The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. METHOD: Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). RESULTS: The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. CONCLUSIONS: Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease

Tension pneumothorax recurrence in COPD: a care study.

This care study concerns a patient with chronic obstructive pulmonary disease, who endures the recurrence of a tension pneumothorax. A holistic and evidence-based approach is employed to critically discuss his assessment, pathophysiology, and nursing care. These discussions facilitate extrapolation of implications pertinent to nursing practice.

Acceptance of home support and integrated care among advanced COPD patients who live outside large medical centers.

BACKGROUND: Poor self-management constitutes a risk factor for COPD deterioration. Patients from rural areas located at a considerable distance from large medical centers frequently need home-support in advanced stages of the disease. Integrated care has been proposed as a comprehensive model for appropriate treatment, coordination and holistic support. The aim of the study was to assess whether home visits provided by trained assistants are needed and accepted by advanced COPD patients living in rural areas a to evaluate whether an individual short educational program can actually improve such patients' knowledge of COPD and inhaler use. METHODS: Thirty patients with severe or very severe but stable COPD participated in one-month home-assistance interventions twice a week. RESULTS: The total value ≥70 of SGRQ (St George's Respiratory Questionnaire) was recorded in 18 (60%) patients. At the beginning of the study, the patients' knowledge of COPD and inhalation techniques was highly unsatisfactory. Significant improvement in all items (p=0.00) was obtained after the intervention. The risk for poor self-management was high. All patients had at least one 'factor' that indicated the need for home-support. A total of 240 visits (100%) were completed. Patients expressed high acceptance for home-based support delivered by medical assistants twice a week for one month. No patients opposed this kind of care and most of them expressed interest in receiving it in the future. CONCLUSIONS: The results suggest a compelling need for home care and demonstrate full acceptance of this kind of support on the part of advanced COPD patients.

A motivational intervention for patients with COPD in primary care: qualitative evaluation of a new practitioner role.

BACKGROUND: Long-term conditions such as chronic obstructive pulmonary disease (COPD) are growing challenges for health services. Psychosocial co-morbidity is associated with poorer quality of life and greater use of health care in these patients but is often un-diagnosed or inadequately treated in primary care, where most care for these patients is provided. We developed a brief intervention, delivered by 'liaison health workers' (LHWs), to address psychosocial needs in the context of an integrated approach to physical and mental health. We report a qualitative study in which we characterize the intervention through the experience of the patients receiving it and examine how it was incorporated into primary care. METHODS: Qualitative study using patient and practice staff informants. We audio-recorded interviews with 29 patients offered the intervention (three had declined it or withdrawn) and 13 practice staff (GPs, nurses and administrators). Analysis used a constant comparative approach. RESULTS: Most patients were enthusiastic about the LHWs, describing the intervention as mobilizing their motivation for self-management. By contrast with other practitioners, patients experienced the LHWs as addressing their needs holistically, being guided by patient needs rather than professional agendas, forming individual relationships with patients and investing in patients and their capacity to change. Practices accommodated and accepted the LHWs, but positioned them as peripheral to and separate from the priority of physical care. CONCLUSIONS: Despite being a short-term intervention, patients described it as having enduring motivational benefits. The elements of the intervention that patients described map onto the key features of motivating interventions described by Self-Determination Theory. We suggest that the LHWs motivated patients to self-management by: (i) respecting patients' competence to decide on needs and priorities; (ii) forming relationships with patients as individuals; and (iii) fostering patients' sense of autonomy. While truly integrated primary care for patients with long-term conditions such as COPD remains elusive, existing practice staff might adopt elements of the LHWs' approach to enhance motivational change in patients with long-term conditions such as COPD.

The experience of a multidisciplinary programme of pulmonary rehabilitation in primary health care from the next of kin's perspective: a qualitative study.

BACKGROUND: Pulmonary rehabilitation increases functional capacity and quality of life and decrease exacerbations in patients with chronic obstructive pulmonary disease (COPD), but there is little knowledge of how it influences their next of kin. AIMS: To describe the experience of a multidisciplinary programme of pulmonary rehabilitation in primary health care from the perspective of the next of kin. METHODS: A descriptive qualitative study was undertaken as part of a longitudinal study comprising a multidisciplinary programme for patients with COPD where the next of kin were invited to one session. Semi-structured interviews were conducted with 20 next of kin and analysed by qualitative content analysis. RESULTS: One main theme emerged - Life still remains overshadowed by illness. There were three sub-themes: a sense of deepened understanding; a sense of personal vulerability; and a sense of relief of burden. CONCLUSIONS: The next of kin's life was still overshadowed by illness, despite the multidisciplinary programme. Although experiencing positive outcomes two years after the programme, the next of kin expressed a need for more support. This study has shown that next of kin could benefit from their own participation and/or that of the patient in a multidisciplinary programme of pulmonary rehabilitation. We believe that next of kin should be offered primary health care support for the sake of their own health, but also in order to manage their informal caregiver role. The experiences described here could form a basis for further development of interventions for next of kin of patients with COPD.

Is harmonica playing an effective adjunct therapy to pulmonary rehabilitation?

PURPOSE: This randomized controlled trial examined the effect harmonica playing has on various clinical, psychosocial, and functional outcomes among chronic obstructive pulmonary disease (COPD) patients in pulmonary rehabilitation (PR). METHOD: Twenty-eight participants (Age 69.9 ± 1.8; FEV1 Predicted 41.9 ± 2.0%) were recruited from an outpatient PR program. Participants were randomly assigned to one of two groups, traditional PR (C; n = 16) or traditional PR plus harmonica playing (HT; n = 9). The HT group was provided a harmonica and one-on-one instruction by PR staff. Patients were given practice exercises to perform for at least 5 minutes, but not exceeding 20 minutes twice/day, 5 days/week. RESULTS: No significant differences were found between groups. The combined sample improved significantly in their perception of shortness of breath, quality of life, and distance walked in 6 minutes. CONCLUSION: Harmonica playing does not significantly affect the clinical, psychosocial, or functional status of COPD patients enrolled in PR.

Interventions to support a palliative care approach in patients with chronic obstructive pulmonary disease: an integrative review.

BACKGROUND: End-stage chronic obstructive pulmonary disease (COPD) is a debilitating, life-limiting condition. A palliative approach is appropriate for individuals with end-stage COPD, yet currently few interventions embrace this holistic, multidisciplinary and inclusive perspective. OBJECTIVE: To describe interventions to support a palliative care approach in patients with end-stage COPD. DESIGN: Integrative review. DATA SOURCES AND REVIEW METHOD: Peer reviewed articles meeting the search criteria were accessed from Medline, PsychINFO, CINAHL and Google Scholar databases as well as Caresearch online resource. The domains of quality palliative care developed by Steinhauser were used as the conceptual framework to synthesise information. RESULTS: This review has shown that a range of palliative interventions are used to address the needs of individuals with end-stage COPD. Although evidence exists for discrete elements of palliative management in this patient group, there is limited evidence for health service coordination and models that integrate the multiple domains of palliative care with active management. CONCLUSION: Further investigation is required to address the complex personal, provider and system elements associated with managing end-stage COPD. A comprehensive and collaborative approach is required to address the complex and varied needs of individuals with end-stage COPD and their families.

Caring for a patient newly diagnosed with COPD: a reflective account.

In this article I reflect on my role as a respiratory nurse specialist caring for a patient newly diagnosed with chronic obstructive pulmonary disease (COPD). The aim of the article is to demonstrate the importance of specialist and holistic care for patients with COPD, as well as highlighting the need to carry out a thorough assessment to ensure that an accurate diagnosis is obtained and an appropriate plan of care is initiated. A model of reflection is used to promote self-awareness and provide a framework for reflection.

A literature review on breathing retraining as a self-management strategy operationalized through Rosswurm and Larrabee's evidence-based practice model.

PURPOSE: The purpose of this article is to critically appraise and synthesize the literature on breathing retraining as a self-management strategy for individuals with chronic obstructive pulmonary disease (COPD) guided by Rosswurm and Larrabee's evidence-based practice model. DATA SOURCES: Scientific literature review, grey literature review, and hand searching. CONCLUSIONS: An exhaustive review of the literature revealed evidence that regularly practiced pursed lip breathing is an effective self-management strategy for individuals with COPD to improve their dyspnea. IMPLICATIONS FOR PRACTICE: It is expected that implementation of this non-pharmacological self-management intervention will improve perception of dyspnea, functional performance, and self-efficacy in individuals with COPD.

The effect of breathing exercises on the fatigue levels of patients with chronic obstructive pulmonary disease.

AIM: to assess the effect of breathing exercises on fatigue level of the patients with COPD. METHODS: this quasi-experimental research was conducted on 60 COPD patients hospitalized at hospitals affiliated to Tehran University of Medical Sciences. The subjects were randomized into "experience" and "control" groups. Data were gathered by interview and data registration from the files. The data gathering tools were questionnaires, fatigue severity scale (FSS) and respiratory exercise usage checklist. The data were analyzed using SPSS software with the descriptive and deductive statistical methods (Paired-T, Chi-Square and Pearson correlation tests). RESULTS: the average fatigue severity before (55.766) and after (40.166) using the respiratory exercises in the experience group (p=0%) was significantly different. While in the control group (p=0.002) before (54.166) and after (52.200) the study has a slight difference. There was a significant inverse correlation between using respiratory exercises and fatigue severity (r=-0.593, p=0.001). Mean fatigue intensity for the experience and control groups decreased to 40.916 ± 14.4 and 52.20 ± 8.539 after the study, respectively (p=0.001). There was a significant difference in fatigue severity between experience and control groups after the study. CONCLUSION: respiratory exercise is effective in reducing the fatigue in the patients with COPD.

Pictures of a client's silent distress.

A trust-based nurse-patient relationship and open communication can help nurses alleviate clients' intrapersonal and interpersonal distress. However, the client's silence about unspoken needs can present an obstacle to successful holistic care. This article describes how pictures, both mental and printed, can be used by nurses to open pathways of healing communication and holistic nursing care.

District nurse role in end-stage COPD: a review.

District Nurses (DNs) are core providers of end-stage care in the community but appear to have little contact with patients suffering from non-malignant diseases, such as chronic obstructive pulmonary disease (COPD). This review found limited literature describing the role of DNs in end-stage COPD care, and the studies that did touch on the subject restricted their discourse to the frequency of interaction. A clear bias of end-of-life services to patients with malignancy was noted, as well as a call for community services to extend care to all end-stage patients regardless of underlying disease. In addition, there was a further call for DNs to apply a more holistic approach to care, as described in the literature. Finally, it was clear that while ongoing community intervention is necessary for end-stage COPD patients, support and training is essential to equip DNs to care for these vulnerable patients.