Living with chronic obstructive pulmonary disease: insiders' perspectives

AIM: This paper reports a study of the experiences of older adults with severe chronic obstructive pulmonary disease, with the aim of gaining an understanding of how the disease had affected their lives. BACKGROUND: Chronic obstructive pulmonary disease is a major personal and public health burden and is the fifth cause of mortality worldwide. The brief encounters that healthcare professionals have with patients in hospitals, physicians' offices and other outpatient settings are insufficient to be able to truly understand the challenges that people face in the attempt to integrate a chronic illness into their lives. Previous qualitative studies on chronic obstructive pulmonary disease have tended to focus on specific problems associated with the disease, such as fatigue and social isolation. METHOD: A hermeneutic phenomenological study was carried out with 10 older adults who participated in a local hospital's case management or pulmonary rehabilitation programme. Data were collected by interviews in 2003. FINDINGS: Three major themes were identified: Knowing What Works, Hanging On...Barely, and Losing Control-Gaining Control. The changes associated with chronic obstructive pulmonary disease were described as increasingly challenging and even threatening to participants' current lifestyles. The impact of dyspnoea was great and invaded almost every aspect of their lives. Participants identified the most effective methods to resolve shortness of breath. CONCLUSION: People with severe chronic obstructive pulmonary disease have had extensive experience of managing their disease and are familiar with techniques that have helped them integrate the illness and symptoms into their lives. Nurses can synthesize patient knowledge with nursing knowledge to assist patients with severe chronic obstructive pulmonary disease to achieve their maximum quality of life.     

Chronic obstructive pulmonary disease: a phenomenological study of patients' experiences

Aim. The purpose of this study is to explore the experience of living with chronic obstructive pulmonary disease by investigating the subjective phenomenon as described by the patient. Background. Chronic obstructive pulmonary disease is now recognized as one of the most common chronic respiratory diseases in the United Kingdom, with a high prevalence of morbidity and mortality. As the disease progresses, symptoms increase which gradually influence all aspects of the lives of those affected by it. Method. A phenomenological approach was identified as the most appropriate method to gain an understanding of living with chronic obstructive pulmonary disease. The data were obtained from 10 participants using unstructured interviews to capture detailed experiences verbatim. Analysis, based on the framework of Diekelmann et al. (The NLN Criteria for Appraisal of Baccalaureate Programs: A Critical Hermeneutic Analysis, NLN Press, New York, 1989), was employed to interpret the data and determine shared themes that evolved during the course of the research. Results. The data revealed valuable insights, from a patient's perspective, into the impact chronic obstructive pulmonary disease had on their daily lives. The accounts obtained from participants, many of who had severe chronic obstructive pulmonary disease, illustrate the detrimental effects of this debilitating disease. Breathlessness was identified as the most troublesome symptom leading to anxiety, panic and fear. Participants also described feeling frustrated and tired because of their breathlessness, which led to loss of social activity. This also resulted in a loss of their role within the family including loss of intimacy in personal relationships. Despite this, half of the participants felt they had a fairly good quality of life. Conclusion. The use of phenomenology as a research methodology fulfilled the aim of gaining a greater understanding of the experiences of living with chronic obstructive pulmonary disease. It provided valuable insights into how patients view the overall impact and their subsequent degree of coping with chronic obstructive pulmonary disease from day to day. Relevance to clinical practice. Whilst there is no cure for chronic obstructive pulmonary disease and medical interventions have limited effect, health professionals can do much to improve patient's symptoms and experiences of living with chronic obstructive pulmonary disease by listening to how their symptoms affect them and adapting coping strategies. It is hoped that the themes revealed in this study generate additional understanding and insight for future innovative practice.     

Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life‐world

Title. Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life‐world. Aim. This paper is a report of a study to explore the changes experienced by the person living in a body with chronic obstructive pulmonary disease. Background. Chronic obstructive pulmonary disease is the world’s fourth leading cause of death, and the World Health Organisation predicts further increases in prevalence and mortality. Despite a growing body of associated knowledge, there remains much to learn about patient and family‐driven goals for medical and surgical treatment to guide nursing practice, to support self–management strategies, and to provide a context for therapeutic outcomes. Methods. Merleau‐Ponty’s philosophy of the body provided a framework for this Heideggerian phenomenological inquiry with 15 people with emphysema and 14 of their family members. The participants were drawn from three Australian teaching hospitals. Hermeneutic analysis was used to interpret 58 in‐depth interviews conducted between 2003 and 2005. Findings. People with severe emphysema experience a shrinking life‐world shaped by breathlessness. This diminishes the predictability and automatic nature of their bodies and their perceived effectiveness as a person. They develop a number of strategies of conscious body management to facilitate breathing, mobility and task completion. Conclusion. Understanding of the person’s changed body and the resulting expertise that those living with chronic illness bring into care and assessing and facilitating this expertise are central to planning sensitive and appropriate care and evaluating outcomes for medical or surgical therapies that are perceived as meaningful to the person.     

慢性阻塞性肺疾病患者生存质量的研究进展

阐述影响慢性阻塞性肺疾病 (COPD)患者生存质量 (QOL)的因素,慢阻肺康复治疗对提高生存质量的作用以及生存质量研究在慢阻肺中应用的进展,并展望生存质量研究的前景。     

慢性阻塞性肺疾病病人姑息照护模式的应用进展

介绍了姑息照护的概念和应用范畴,综述了慢性阻塞性肺疾病(COPD)病人对姑息照护的需求及国内外研究现状。     

Need of support in people with chronic obstructive pulmonary disease

Aim and objective

The aim of this study was to describe peoples’ experiences and expectations of support when living with chronic obstructive pulmonary disease.

Method

We conducted and analysed face‐to‐face or telephone interviews with 17 individuals (aged 44–77 years) diagnosed with chronic obstructive pulmonary disease. The interviewer asked open‐ended questions aimed at encouraging further narration, and we analysed the participants’ narratives using a phenomenological hermeneutical approach. This report adheres to the COREQ guidelines.

Results

The overall theme suggests that people with chronic obstructive pulmonary disease describe support as shared knowledge and experiences, based on the following subthemes; similar experiences, the need of genuine professional knowledge, self‐reliance versus self‐blame, and the Internet – feeling safe but uncertain.

Conclusions

People with chronic obstructive pulmonary disease find their strength through shared knowledge and dialogical support with others who have similar experiences and with professionals. A person‐centred eHealth approach may be suitable for this group as it offers both collaboration and support.

Relevance to clinical practice

There is a demand for access to genuine professional knowledge as additional support to patients’ own capabilities and needs. Patient associations were assessed as reliable sources of information and to some extent also support, but the importance of access to professional sources was also stressed.     

慢性阻塞性肺疾病病人的生存质量研究

目的 研究在慢性阻塞性肺疾病(COPD)稳定期病人中用国内开发的生存质量(QOL)量表与肺功能间的关系。 方法 73例COPD稳定期病人 ,用生存质量量表评估并与肺功能结果进行多元回归分析。结果 QOL总均分(1.64±0.36)与FEV1/FVC %(65.99±12.56)之间存有显著的直线负相关 ,相关系数为 -0.36(p<0.01)。经多元线性相关分析肺功能各参数与量表不同因子之间存在某种相关性 ,它们均与抑郁症状均分呈显著负相关 ,相关系数分别为 -0.779、-0.629、-0.888、-0.786、-0.337(p<0.01)。结论 国内开发的量表与肺功能之间有良好的相关关系。此量表目前可作为评估COPD病情严重度的较好指标     

Self‐management behaviours for patients with chronic obstructive pulmonary disease: a qualitative study

Title. Self‐management behaviours for patients with chronic obstructive pulmonary disease: a qualitative study. Aim. This paper is a report of a study to explore the self‐management behaviours of patients with chronic obstructive pulmonary disease (COPD). Background. Chronic obstructive pulmonary disease is a major cause of chronic morbidity and mortality throughout the world. A patient‐centred perspective calls for the investigation of self‐management behaviours as means to develop self‐management programmes and enhance quality of life for patients with COPD. Method. The participants were a convenience sample of 18 patients with COPD of various severities. Interview data were collected in the thoracic ward, outpatient department and pulmonary rehabilitation unit of a medical centre in Taiwan from November 2006 to April 2007. Findings. Participants demonstrated the ability to choose suitable disease management behaviours to prevent symptoms and complications. Five themes of disease management behaviours were identified: symptom management, activity and exercise implementation, environmental control, emotional adaptation and maintaining a healthy lifestyle. Conclusion. Participants are experts on their lives and, as such, they adopt appropriate disease control behaviours, based on their experience and knowledge, as well as integrate the illness and its symptoms into their lives. With the worldwide increase in migration, an understanding of the cultural factors that influence patients’ perspectives on self‐management behaviours is necessary and can contribute to the development of an evidence‐based programme for disease self‐management with COPD.     

慢性阻塞性肺疾病病人生活质量的影响因素及护理干预现状

从一般人口学资料、疾病相关资料等方面综述了影响慢性阻塞性肺疾病病人生活质量的主要因素,并阐述了心理情绪干预、躯体功能干预、生活行为干预对提高慢性阻塞性肺疾病病人生活质量的作用.     

Psychological distress and quality of life in hospitalized patients with chronic obstructive pulmonary disease

BACKGROUND: Knowledge of what may influence patients' perceptions of quality of life is essential for improving nursing interventions, but there has been little research on the influence of psychological distress on health status and quality of life among patients with chronic obstructive pulmonary disease. AIM: This paper reports a study whose aim was to examine how disease factors and health status affect psychological distress and subjectively perceived quality of life in patients admitted for an acute exacerbation of chronic obstructive pulmonary disease. METHOD: A convenience sample of 92 inpatients (mean age 69 years) were interviewed using the St George's Respiratory Questionnaire, Hopkins Symptoms Check List (23 item version), and World Health Organization Quality of Life Assessment. Disease variables (disease duration and pulmonary function) and health status were entered in blockwise multivariate regression analyses to examine the relationships between disease variables, psychological distress, and a single item assessment of overall quality of life. RESULTS: The St George's Respiratory Questionnaire Total and Impact subscores showed statistically significant associations with psychological distress. Pulmonary function showed a moderately significant association with subjective perceived quality of life. Pulmonary function and disease duration explained a minor part of the variance in quality of life. Psychological distress had a statistically significant association with quality of life and accounted for 34% of the total 39% variance explained by our model. CONCLUSIONS: The influence of psychological distress on quality of life implies that bringing about change in psychological distress factors may have important consequences for quality of life. The findings should be taken seriously in developing future nursing interventions for this group of patients.     

慢性阻塞性肺疾病患者生活质量与自我效能相关性研究

目的:探讨慢性阻塞性肺疾病(COPD)患者生活质量与自我效能的相关性。方法:于2011年4-11月采用便利抽样的方法,选取广州市某医院病情稳定、准许出院的患者和门诊患者进行调查,分别使用圣乔治呼吸问卷和COPD自我效能量表对患者的生活质量和自我效能进行测评。结果:COPD患者生活质量的症状评分与自我效能的负面影响、极端的情绪激动、体力活动、天气/环境维度评分均具有相关性(r=0.28～0.33,P<0.05)。COPD患者生活质量的活动评分、影响评分及总分评分与患者自我效能的各维度评分均具有相关性(r=0.38～0.58,P<0.01)。结论:COPD患者的生活质量与自我效能存在关联,患者的自我效能水平越高,其生活质量也越高,提示可以从提高患者的自我效能水平着手,改善COPD患者的生活质量。     

Living with haemodialysis when nearing end of life

Scand J Caring Sci; 2012; 26; 45–52
Living with haemodialysis when nearing end of life Aims and objectives: The aim of this study was to describe and to elucidate the meanings of being severely ill living with haemodialysis when nearing end of life. Introduction: To have end stage renal disease and to be treated with maintenance haemodialysis implies being dependent on lifelong treatment. Several studies have reported that these patients suffer a high symptom burden and an impaired quality of life due to both disease and treatment. In the dialysis unit, where the focus is on handling technology and maintaining life, end of life care may be neglected or overlooked. Nevertheless, mortality rates show that about one‐fourth of patients in haemodialysis care are in their last year of life. Design: A qualitative interpretative design was used. Methods: Serial qualitative interviews over a period of 12 months were conducted with eight patients (aged 66–87). Altogether text of 31 interviews was interpreted using a phenomenological hermeneutical method in three phases. The study is ethically approved. Findings: The structural analysis resulted in 11 subthemes and thereafter the following three themes were formulated; being subordinate to the deteriorating body, changing outlook on life and striving for upheld dignity. The comprehensive interpretation revealed that being severely ill living with haemodialysis near the end of life means living with suffering simultaneously with reconciliation and well‐being. Further, the meanings are understood as intertwined with being old. Conclusions: Findings contribute to an increased awareness of the complexities of these patients’ life worlds and their meanings, and thus of the importance to listen to their experiences and their understandings. Findings suggest that to integrate the philosophy of palliative care in haemodialysis units may improve care for patients who are living with haemodialysis and approaching the end of their lives.     

慢性阻塞性肺疾病病人自我护理能力与生活质量的相关性研究

[目的]探讨慢性阻塞性肺疾病(COPD)病人自我护理能力和生活质量及其两者间的相关性。[方法]研究对象为在我院门诊就诊的COPD病人104例,采用自我护理能力量表(ESCA)测量COPD病人自我护理能力,采用COPD生活质量评分表测量病人的生活质量。[结果]COPD病人自我护理能力和生活质量自评得分分别为93.92分±15.36分和126.34分±20.54分,均居于低等水平;经Pearson相关分析,COPD病人的自我护理能力与生活质量呈正相关(r=0.484,P<0.01)。[结论]在设计和实施护理干预措施时,应重视提高病人自我护理知识和技能,提高自我护理能力,进而改善病人的生活质量。     

Care of patients with chronic obstructive pulmonary disease in primary health care

Aim.  This paper is a report of a study of nurses' perceptions of caring for patients with chronic obstructive pulmonary disease.
Background.  Chronic obstructive pulmonary disease is a global health problem and the number of patients being treated with this disease in primary healthcare settings is increasing. This places new demands on the nurses involved.
Method.  A phenomenographic approach was adopted, using a purposive sample. Data were generated between February and May 2003 from 20 interviews with district nurses and general nurses who cared for patients in primary healthcare settings with chronic obstructive pulmonary disease.
Findings.  In most cases, nurses cared for older people with moderate to severe chronic obstructive pulmonary disease. They described this care from two overall orientations: task and individual. The nurses' perceptions of the care of these patients were described as creating commitment and participation by establishing a good relationship with patients and supporting them in their personal care, educating patients by supplying information and knowledge in various ways, co-operation by co-operating with or referring to other caregivers, and arranging and implementing clinical examinations and treatments.
Conclusion.  The type of care depended on who the patient met: either a task-oriented nurse or an individual-oriented nurse. Therefore, nursing programmes should pay special attention to the support and guidance of new and inexperienced and task-oriented nurses. Healthcare planners should take into consideration the need for individualized care when organizing care and allocating resources for chronically ill people.     

延续性护理对慢性阻塞性肺疾病患者肺功能及生活质量的影响研究

目的探讨延续性护理对慢性阻塞性肺疾病患者肺功能及生活质量的影响。方法选择本院接诊的90例慢性阻塞性肺疾病患者,通过随机数表法分为观察组和对照组,各45例。对照组在住院期间及出院时进行健康教育,出院后不再进行任何干预;观察组在对照组基础上给予延续性护理。护理3个月后,评价护理效果。结果护理后,观察组动脉血氧分压[p(O2)]、动脉血二氧化碳分压[p(CO2)]均优于对照组(P0.05);观察组1秒钟用力呼气容积(FEV1)、最大呼气中段平均流速(MMEF)、用力肺活量(FVC)高于对照组(P0.05);观察组呼吸症状、疾病对生活影响优于对照组(P0.05);观察组总体健康、生理功能、生理职能、躯体疼痛、活力、社会功能、情感职能、精神健康结果均优于对照组(P0.05)。结论在慢性阻塞性肺疾病患者中给予延续性护理,可有效促进肺功能的恢复,并改善生活质量,值得应用推广。     

Fatigue in chronic illness: the experience of individuals with chronic obstructive pulmonary disease and with asthma

Although fatigue has been identified as a major problem for individuals with chronic obstructive pulmonary disease and with asthma, no research was found in which the symptom was directly studied in persons with these conditions. From studies carried out on various patient populations, it appears that fatigue has some specificity to disease state. Thus, it is important to describe the experience of fatigue within patient populations. To expand theoretical understanding of fatigue, qualitative research methods need to be applied. The purpose of this study therefore was to describe and compare the fatigue experiences of persons with chronic obstructive pulmonary disease (n=17) and with asthma (n=19). Data were obtained by use of a semi-structured questionnaire and were content analysed for categories and themes. There were many similarities between the fatigue experiences of the two groups. Fatigue is inextricably linked to laboured breathing. Although it interferes with their ability to carry out meaningful activities, the majority of individuals with chronic obstructive pulmonary disease or asthma cope well with it. The informants identified two types of coping strategies they use to manage their situation, which may be categorized as: problem-focused, including energy conservation, utilization and restoration; and emotion-focused, including being positive, accepting the physical limitations, distracting and normalizing.     

慢性阻塞性肺疾病患者社会支持与生活质量的研究

目的探讨慢性阻塞性肺疾病(COPD)缓解期患者社会支持与生活质量。方法对40例老年(>60岁)COPD缓解期患者和40例正常老年对照组患者分别进行社会支持评定量表(SSRS)、日常生活能力量表(ADL)的调查和评定。结果COPD组的社会支持总分显著低于对照组(P<0.01);日常生活总分均值29.55,显著高于对照组(P<0.01),表明有明显功能障碍。结论COPD患者社会支持度较低,日常生活能力较差;对COPD患者进行康复治疗,减少反复发作是提高生活质量的重要措施之一。