Impacts of COPD on family carers and supportive interventions: a narrative review

Caring for a relative with chronic disease influences multiple dimensions of family carers’ lives. This study aimed to provide an overview of the impacts of chronic obstructive pulmonary disease (COPD) on family carers and identify interventions aimed at supporting them. A narrative review was conducted. Searches were performed in electronic databases using a combination of keywords. Articles were screened for relevance and selected articles were analysed in two groups considering the study aims. Eighteen articles were selected. Fifteen studies evaluated the impacts of COPD on family carers and three studies presented interventions aimed at supporting them. Carers reported negative impacts of caring on physical health, emotional, social, relational and financial/employment life dimensions. Positive aspects of care‐giving were reported in four studies and were related to carers’ personal growth and satisfaction in being able to do something useful for their relatives. The existing interventions were directed at both patients and carers; however, studies provided limited information on how carers were involved, hindering the interpretation of findings. In conclusion, COPD poses several unique challenges to family carers related to the specificities of the disease. Further research with appropriate intervention studies is needed to promote carers’ healthy adjustment to the disease.     

Coping with patients suffering from overactive bladder: experiences of family caregivers in Hong Kong

This article examines the experiences of family caregivers working with patients affected by overactive bladder (OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non‐western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities. Because of the increasing prevalence of OAB worldwide, this study investigated the experiences of such caregivers in Hong Kong, examining their emotional and social needs. A qualitative research design with individual semistructured interviews was adopted, and snowball sampling was used to recruit 35 family caregivers who were referred by patients with OAB. The participants were interviewed individually from May to August 2013. A phenomenological approach was adopted in the data analysis. The data revealed that all participants had unpleasant experiences in caring for family members with OAB. A sense of powerlessness, helplessness, confusion and guilt, as well as grievances and social withdrawal, was prevalent, causing great physical and emotional suffering and subsequent physical and emotional burnout. These negative experiences were often caused by confusion regarding caretaking duties. The negative emotions of the participants and their family members also caused a lack of communication and mutual understanding about the disease, causing care‐giving to be even more confusing and difficult. Furthermore, because of traditional Chinese cultural values and gender expectations, male participants experienced the triple burden of employment, domestic duties and care‐giving. More holistic social and healthcare support services should be provided for care‐giving family members of patients with OAB patients, empowering such caregivers to attend to family members and care for their own emotional well‐being.     

Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

The care of people with life‐limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi‐structured interviews with four women and six men (N = 10, aged 55–87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.     

Involvement in self-care and psychological well-being of Spanish family caregivers of relatives with dementia

The provision of continuous care to a dependent person can lead to a lack of self-care by the caregiver themselves with corresponding low levels of well-being. This well-being has been analysed mostly from within the perspective of the hedonic tradition, with the development of personal growth often being overlooked. This study aims to increase the understanding of the connection between this type of psychological well-being and involvement in self-care activities, and to be a starting point for the determination of categories that may serve in the screening of potential participants in social-health interventions where it is being promoted. Taking the hypothesis of a probable positive connection between psychological well-being and involvement in self-care, an observational study was carried out on 45 caregivers of relatives with dementia. In those caregivers showing greater dedication to self-care, a higher score was obtained on the well-being scales connected to personal significance and positive emotions and experiences. These findings were further reinforced by the identification of other positive connections, the involvement in self-care and the six dimensions of wellness contemplated by Ryff. It is possible to envisage the existence of a virtuous circle in respect of the caregiver, whereby a greater involvement in self-care is related to a higher psychological well-being, which in turn is related to greater self-care, and so on.     

‘Somebody there to watch over you’: the role of the family in everyday and emergency diabetes care

This paper reports on the role of family members in everyday diabetes self‐care and in diabetic crises. It is based on qualitative data drawn from 45 semi‐structured interviews with a wide range of people with an established diagnosis of Type 1 or Type 2 diabetes, who were admitted to hospital for urgent or emergency treatment in connection with their diabetes. The interviews were carried out in two contrasting sites in the United Kingdom in 2009–2010, transcribed and analysed thematically with particular reference to framework analysis methods. We found that family involvement in self‐care was common, and the role of family and friends was especially important when the person with diabetes needed urgent help. We comment on the diversity of family members who assisted regularly or dealt with crises, the importance of taking account of the complexities of family life, including reciprocal care, and the particular problems faced by people without family support. Finally, we make recommendations for further research and for improvements in existing services.     

徐州市社区慢性阻塞性肺疾病患者直接经济负担研究

目的了解浦东新区社区医生慢性阻塞性肺疾病(COPD)认知情况,为COPD社区防治工作提供依据。方法从上海市浦东新区的46个社区卫生服务中心用单纯随机抽样法抽取325名医生进行面对面调查,应答率为99.1%,问卷调查社区医生一般情况、COPD防治相关知识和COPD管理认知情况。结果86.6%的医生认为肺功能检测是COPD诊断的必备条件,77.0%的医生认为稳定期COPD患者需要维持治疗,26.4%的医生认为稳定期COPD患者外配药品首选气雾剂,23.0%的医生认为长期吸氧可能产生依赖性,60.2%的医生以前接受过COPD相关知识培训,仅21.7%的医生知道COPD诊治指南的主要内容,49.7%的医生认为自身不具备提供COPD社区保健服务的能力,尤其缺乏社区管理指导能力和临床治疗指导能力。社区全科医生的COPD相关知识技能水平高于公卫医生,但是否接受过全科医师规范化培训并不影响全科医生的COPD相关知识技能水平。结论社区医生在COPD预防及患者诊疗方面存在不足,有必要完善社区肺功能仪等相关设备的配置,并加强COPD专业知识和技能系统化培训,并且需要完善全科医师规范化培训制度,强化其中的COPD防治相关内容,切实提升社区医生的COPD防治能力。     

综合性护理干预对夜间COPD患者的疗效观察

目的 探讨综合性护理干预对夜间COPD患者的疗效.方法 将78例COPD患者随机分为实验组和对照组各39例.两组均采取常规治疗和一般护理,实验组在一般护理的基础上同时给予综合性护理干预.结果 实验组在肺性脑病、心力衰竭等发生率方面均较对照组效果好（P〈0.05）,护理干预可有效预防夜间COPD患者并发症的发生.结论 加强COPD患者夜间观察和护理可有效降低肺性脑病、心力衰竭等并发症的发生率,提高了患者的生存率和生活质量.     

慢性阻塞性肺疾病患者家庭责任制模式访视干预效果评价

目的 评价慢性阻塞性肺疾病(COPD)患者家庭责任制模式访视干预效果,为提高COPD患者生活质量提供新的思路.方法 于2015年9月-2016年9月采用随机抽样方法在内蒙古万达卫生社区服务中心抽取82例COPD患者随机分为对照组和干预组各41例,对照组给予口服羧甲司坦片+氨茶碱片的传统内科治疗方法,干预组在对照组传统内...     

慢性阻塞性肺病患者无创正压机械通气的护理

目的:探讨无创正压通气在慢性阻塞性肺病(COPD)急性加重期患者中的疗效及护理要点.方法:将64例COPD患者随机分为低流量吸氧组与无创正压通气组,并比较治疗后各项呼吸功能监测指标.结果:无创正压通气组病人的呼吸功能如:呼吸频率、SpO2、PaO2和PaCO2较低流量吸氧组均有明显改善(P＜0.01).结论:无创正压通气可明显改善COPD病人的呼吸功能,并可以减少有创机械通气治疗引起的相关并发症.     

Putting the ‘patient’ in patient safety: a qualitative study of consumer experiences

Background Although patient safety has been studied extensively, little research has directly examined patient and family (consumer) perceptions. Evidence suggests that clinicians define safety differently from consumers, e.g. clinicians focus more on outcomes, whereas consumers may focus more on processes. Consumer perceptions of patient safety are important for several reasons. First, health‐care policy leaders have been encouraging patients and families to take a proactive role in ensuring patient safety; therefore, an understanding of how patients define safety is needed. Second, consumer perceptions of safety could influence outcomes such as trust and satisfaction or compliance with treatment protocols. Finally, consumer perspectives could be an additional lens for viewing complex systems and processes for quality improvement efforts. Objectives To qualitatively explore acute care consumer perceptions of patient safety. Design and methods Thirty‐nine individuals with a recent overnight hospital visit participated in one of four group interviews. Analysis followed an interpretive analytical approach. Results Three basic themes were identified: Communication, staffing issues and medication administration. Consumers associated care process problems, such as delays or lack of information, with safety rather than as service quality problems. Participants agreed that patients need family caregivers as advocates. Conclusions Consumers seem acutely aware of care processes they believe pose risks to safety. Perceptual measures of patient safety and quality may help to identify areas where there are higher risks of preventable adverse events.     

Patients'' priorities concerning health research: the case of asthma and COPD research in the Netherlands

BACKGROUND: Although patients are increasingly involved in agenda setting within specific fields of health research, they rarely participate in decision-making on the entire breadth of health research, including biomedical research. This might be attributable to a widely held view that patients are incapable of adequate research prioritization due to a lack of relevant knowledge, a failure to look beyond their own individual problems or an inability to objectively consider long-term targets. AIMS: By conducting transparent and structured consultations with asthma and chronic obstructive pulmonary disease (COPD) patients regarding their health research priorities, we aim to assess the ability of patients to prioritize research in a well-argued way. METHODS: Patients were consulted through seven focus groups, a feedback meeting, and a questionnaire. The focus groups and the feedback meeting aimed to explore the entire breadth of patients' problems experienced in relation to their diseases, while the questionnaire aimed to investigate patients' prioritization of possible research targets focused on solving these problems. RESULTS: The focus groups produced a wide range of problems, including those related to health-care organization, social environment, therapy and costs. In terms of research prioritization, patients focused primarily on biomedical issues, particularly aetiology, co-morbidity and effective medication. CONCLUSIONS: The consultation procedure successfully elicited patients' research priorities including the underlying arguments. Our results indicate that asthma and COPD patients are capable of research prioritization in a well-argued way and that they highly value biomedical research. Furthermore, as they prioritized some research topics that are not covered by current Dutch research programmes, we argue that patient participation can broaden research agenda setting.     

纽曼自护理论对慢性阻塞性肺气肿患者疗效和睡眠质量的影响

目的探讨纽曼自护理论护理对慢性阻塞性肺气肿患者治疗效果和睡眠质量的影响。方法选择2011年10月—2013年1月120例慢性阻塞性肺气肿患者,采用随机数字表法,将患者随机分为观察组和对照组各60例,对照组采用呼吸内科常规护理,观察组在对照组的基础上给予纽曼自护理论模式护理。比较两组治疗效果（总有效率和肺功能）和睡眠质量（PSQI）变化。结果观察组治疗总有效率为96．67％,明显高于对照组的86．67％（P〈0．05）;观察组PaO：和PaCO2分别为（8．52±1．47）和（5.76±1．23）kPa,明显高于和低于对照组的（7．12±1．25）和（6．72±1．21）kPa（P〈0．05）。护理前,两组PSQI评分差异无统计学意义（P〉0．05）;护理后,观察组PSQI评分为（6．44±1．50）,明显低于对照组的（7．64±1．52）分（P〈0．05）。结论纽曼自护理论护理可明显提高慢性阻塞性肺气肿患者的治疗效果和睡眠质量。     

Lower inhaled steroid requirement with a fluticasone/salmeterol combination in family practice patients with asthma or COPD

BACKGROUND: Previous studies on inhaled steroid and long-acting beta2-agonist combination products may not be representative for the asthma and chronic obstructive pulmonary disease (COPD) patients in family practice. OBJECTIVES: To compare in a group of doctor-diagnosed patients with asthma or COPD, the effects of a lower dose of fluticasone in a combination product with salmeterol with conventional treatment (i.e. a higher dose of fluticasone), both supplemented with as-needed use of a short-acting bronchodilator. METHODS: The study was a 12-week multicentre, randomized controlled, double-blind trial. In all, 41 family practices recruited 137 patients diagnosed with asthma and 40 patients diagnosed with COPD. Primary outcome was the forced expiratory volume in 1 second (FEV1) as percentage of predicted. Morning peak expiratory flow (PEF), symptom-free days, health status [Asthma Quality of Life Questionnaire (AQLQ) and St. George's Respiratory Questionnaire (SGRQ)], exacerbations, use of short-acting bronchodilators and adverse events were secondary outcomes. RESULTS: FEV1% predicted increased 2.6% (SD 8.3) in fluticasone/salmeterol- and 0.01% (SD 6.6) in fluticasone-treated patients (overall: P=0.036, asthma: P=0.025 and COPD: P=0.700). PEF increased in favour of fluticasone/salmeterol in asthma patients only (P=0.016). Fluticasone/salmeterol-treated asthma patients had 1.1 more symptom-free days per week (P=0.044); no such effect was observed for COPD (P=0.769). There were no differences in total AQLQ and SGRQ scores, exacerbations, use of reliever puffs or adverse effects. CONCLUSIONS: In family practice patients diagnosed with asthma, several treatment goals were better achieved with a lower dose of fluticasone and salmeterol in a combination product than with a higher dose of fluticasone. We found no differences between the two approaches for patients with COPD.     

Explaining chronic obstructive pulmonary disease (COPD): perceptions of the role played by smoking

There are few studies that investigate how people personally affected by a chronic disease associated with cigarette smoking account for their illness. Chronic obstructive pulmonary disease (COPD) is a respiratory condition largely caused by cigarette smoking. In order to better understand how people diagnosed with COPD view the relationship between cigarette smoking and their illness we conducted semi-structured interviews with 19 participants. We found a widespread scepticism among our respondents about medical attempts to link their illness with cigarette smoking, and doubts about whether their illness was in fact COPD at all. Only four participants described smoking as the principal reason why they had developed breathing problems. Most participants gave multi-causal accounts that emphasised explanatory factors such as a familial tendency to respiratory illness or workplace exposure to pollution. Our findings have relevance for the development of smoking cessation interventions for people with COPD.     

Evaluation of COPD Treatments: A Multicriteria Decision Analysis of Aclidinium and Tiotropium in the United States

Background

Comparisons of the use of aclidinium bromide and tiotropium bromide for the treatment of chronic obstructive pulmonary disease often concentrate on key end points (exacerbations) at the expense of other benefits and risks. Multicriteria decision analysis (MCDA) can help overcome this by using stakeholder preferences to combine multiple end points into an overall value estimate.

Barriers to and enablers of the promotion of patient and family participation in primary healthcare nursing in Brazil,Germany and Spain: A qualitative study

Background

Most health systems are insufficiently prepared to promote the participation of chronically ill patients in their care. Strong primary health care (PHC) strengthens patients' resources and thus promotes their participation. The tasks of providing continuous care to people with chronic diseases and promoting self-management are the responsibility of PHC nurses. Recent research assessing enablers of or barriers to nurses' efforts to support patients' participation has mostly not considered the special situation of patients with chronic diseases or focused on the PHC setting.

Objective

To investigate enablers of and barriers to PHC nurses' efforts to promote the participation of chronically ill patients in their care.

Methods

We interviewed 34 practicing PHC nurses and 23 key informants with advanced knowledge of PHC nursing practice in Brazil, Germany and Spain. The data was analyzed using thematic coding.

Results

We identified four categories of barriers and enablers. (1) Establishing bonds with patients: Interviewees emphasized that understanding patients' views and behaviours is important for PHC nurses. (2) Cooperation with relatives and families: Good relationships with families are fundamental, however conflicts within families could challenge PHC nurses efforts to strengthen participation. (3) Communication and cooperation within PHC teams: PHC nurses see Cooperative team structures as a potential enabler, while the dominance of a ‘biomedical’ approach to patient care is seen as a barrier. (4) Work environment: Interviewees agreed that increased workload is a barrier to patient participation.

Discussion and Conclusions

Supporting patient participation should be acknowledged as an important responsibility for nurses by general practitioners and PHC planners. PHC nurses should be trained in communicative competence when discussing participation with chronically ill patients. Interprofessional education could strengthen other professionals' understanding of patient participation as a nursing task.

Patient or Public Contribution

This study is part of a research project associated with the research network ‘forges: User-oriented care: Promotion of health in the context of chronic diseases and care dependency’. The study's focus and provisional results were discussed continuously with partners in health and social care practice and presented to and discussed with the public at two conferences in which patient representatives, professionals and researchers participated.     

C反应蛋白测定在慢性阻塞性肺疾病急性加重期的意义

目的探讨慢性阻塞性肺疾病(COPD)稳定期急性加重期患者血清CRP水平的临床意义。方法2组患者分别在就诊或收住院当日抽取静脉血3m l,提取血清送检,CRP采用酶联免疫分析法测定,并进行组间及加重期组内CRP水平的分析。结果COPD急性加重期患者血清CRP水平显著高于COPD稳定期患者(P<0.01),而在AECOPD患者中死亡组血清CRP水平又显著高于存活组(P<0.001)。结论CRP升高不仅可以提示COPD的急性加重,极度升高又提示COPD患者病情严重并且可能预后不良。