"Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study.

Abstract:

AIM AND OBJECTIVES:To explore the experience of pulmonary exacerbation from the perspective of adults with cystic fibrosis. BACKGROUND:While management of pulmonary exacerbations is a pillar of cystic fibrosis care, little is known of patients' perspectives. Understanding the patient's experience is essential for developing and evaluating interventions in support of patient self-management. DESIGN:Qualitative study with longitudinal study in a subsample. METHODS:The study took place from 2015-2016 in a university hospital. Eighteen patients with cystic fibrosis were included who were ≥18 years of age and had no solid organ transplant. Patients' experiences were explored through semistructured interviews and analysed using framework analysis. They each participated in one interview, with a subsample (N = 7) being interviewed twice during and once after antibiotic therapy. RESULTS:Patients (11 men and 7 women; median age 29.5 years, range 19-55 years; median FEV1 45%, range FEV1 23%-105%) experienced pulmonary exacerbations as disruptions of their normality, which led to a substantial increase in their emotional distress. Exacerbations represented a period of threat and domination by CF; that is, symptoms and treatment consumed energy, restricted physical activity and daily life roles. "Noting change," "waiting until antibiotics help," "returning to normality" and "establishing a new normality" characterised their descriptions of the pulmonary exacerbation trajectory. Emotional distress was the major driver for patients' self-management, and personal goals and illness beliefs influenced also patients' self-management decisions. CONCLUSION:The experienced degree and source of emotional distress are drivers for self-management decisions in patients with cystic fibrosis who experience a pulmonary exacerbation. RELEVANCE TO CLINICAL PRACTICE:Our data provide new understanding that will be essential to informing clinical practice, future patient-reported outcomes measures and intervention development.

journal_name

J Clin Nurs

authors

Schmid-Mohler G,Caress AL,Spirig R,Benden C,Yorke J

doi

10.1111/jocn.14646

subject

Has Abstract

pub_date

2019-01-01 00:00:00

pages

190-200

issue

1-2

eissn

0962-1067

issn

1365-2702

journal_volume

28

pub_type

杂志文章
  • Health literacy of the baby boomer generation and the implications for nursing.

    abstract:AIMS AND OBJECTIVES:To investigate the health literacy of the baby boomer generation and what this means for nursing care. BACKGROUND:Nurses are encouraged to tailor information and education to the individual's level of understanding or health literacy but there may be generational differences in health literacy due ...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,评审

    doi:10.1111/jocn.14549

    authors: Harbour P,Grealish L

    更新日期:2018-10-01 00:00:00

  • Ulcerative colitis: factors affecting difficulties of life and psychological well being of patients in remission.

    abstract:BACKGROUND:Ulcerative colitis is a chronic disease of unknown aetiology characterized by alternating periods of remission and relapses. The difficulties in the patients with ulcerative colitis daily life mostly arise from symptoms associated with bowel inflammation but there are many patients who have difficulties desp...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2004.00955.x

    authors: Tanaka M,Kazuma K

    更新日期:2005-01-01 00:00:00

  • A review of pain management interventions in bone marrow biopsy.

    abstract:AIMS:This review was designed to evaluate the evidence relating to pain management interventions for patients having bone marrow biopsy. BACKGROUND:Bone marrow biopsy is an invasive procedure causing considerable pain and anxiety for adult patients, yet there are no guidelines to inform effective nursing care. Althoug...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,评审

    doi:10.1111/j.1365-2702.2010.03485.x

    authors: Watmough S,Flynn M

    更新日期:2011-03-01 00:00:00

  • Nonpharmacological approaches for behavioural and psychological symptoms of dementia in older adults: A systematic review of reviews.

    abstract:AIMS AND OBJECTIVES:To review the evidence on nonpharmacological approaches to care for behavioural and psychological symptoms of dementia in older adults. BACKGROUND:Dementia is increasing in worldwide prevalence and can have severe and life-altering impacts on older adults. Behavioural and psychological symptoms of ...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,评审

    doi:10.1111/jocn.14007

    authors: Legere LE,McNeill S,Schindel Martin L,Acorn M,An D

    更新日期:2018-04-01 00:00:00

  • 'Betwixt and between health and illness' - women's narratives following acute coronary syndrome.

    abstract:AIMS AND OBJECTIVES:This study investigated experiences of women with a primary diagnosis of ACS (NSTEMI and Unstable Angina) in the 6-8 week period following discharge from hospital. The aim was to report the experience of the mediating impact of a newly-diagnosed disease. BACKGROUND:Cardiovascular disease is the mai...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.13711

    authors: Smith R,Frazer K,Hall P,Hyde A,O'Connor L

    更新日期:2017-11-01 00:00:00

  • The experiences of Chinese patients with coronary heart disease.

    abstract:AIM:To explore the experiences of patients with coronary heart disease in China. BACKGROUND:The morbidity and mortality rates of people with coronary heart disease have been growing rapidly in the past decades in China, yet little is known about the experiences of Chinese patients with the disease. DESIGN:A qualitati...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2011.03909.x

    authors: Zhu L,Ho SC,Sit JW

    更新日期:2012-02-01 00:00:00

  • Compassion: a critical review of peer-reviewed nursing literature.

    abstract:AIMS AND OBJECTIVES:To provide a critical review of nursing literature about compassion, identifying major themes, questions arising and directions for future investigation of the topic. BACKGROUND:Compassion has emerged as a topic of broad social concern in recent years and is particularly pertinent to nurses. DESIG...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,评审

    doi:10.1111/jocn.12924

    authors: McCaffrey G,McConnell S

    更新日期:2015-10-01 00:00:00

  • Enhancing the efficacy of psychoeducational interventions for paediatric patients in a randomised controlled trial: methodological considerations.

    abstract:AIM:This paper described a case study of a randomised controlled trial with the aim to illuminate how the intervention described takes into account the important methodological considerations for enhancing the efficacy of psychoeducational interventions for paediatric patients. BACKGROUND:Many nursing intervention stu...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,随机对照试验

    doi:10.1111/j.1365-2702.2009.02913.x

    authors: Li WH,Chung OK

    更新日期:2009-11-01 00:00:00

  • A comparison of the nursing competence of graduates and diplomates from UK nursing programmes.

    abstract::This paper reviews the literature on nursing competence measurement and reports the results of a comparative quantitative study of the competencies of Project 2000 diplomates and BA (Hons) Adult Nursing graduates from two UK nursing programmes. The findings reveal that graduates appear to overcome any initial limitati...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1046/j.1365-2702.2000.00331.x

    authors: Bartlett HP,Simonite V,Westcott E,Taylor HR

    更新日期:2000-05-01 00:00:00

  • Barriers to diabetic self-care: A qualitative study of patients' and healthcare providers' perspectives.

    abstract:AIMS AND OBJECTIVES:To explore patient and healthcare provider (HCP) perspectives about patients' barriers to the performance of diabetic self-care behaviours in Ghana. BACKGROUND:Sub-Saharan African urban populations are increasingly affected by type 2 diabetes due to nutrition transition, sedentary lifestyles and ag...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.14835

    authors: Mogre V,Johnson NA,Tzelepis F,Paul C

    更新日期:2019-06-01 00:00:00

  • Early re-presentation to hospital after discharge from an acute medical unit: perspectives of older patients, their family caregivers and health professionals.

    abstract:AIMS AND OBJECTIVES:To explore the perceptions of older patients who re-presented to hospital within 28 days of discharge from an acute medical unit (AMU), their family caregivers and appropriately experienced health professionals. BACKGROUND:Hospitals are increasingly using AMUs to provide rapid assessment and treatm...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.12029

    authors: Slatyer S,Toye C,Popescu A,Young J,Matthews A,Hill A,Williamson DJ

    更新日期:2013-02-01 00:00:00

  • Barriers and facilitators for implementing a new screening tool in an emergency department: A qualitative study applying the Theoretical Domains Framework.

    abstract:AIM:The aim was to identify the factors that were perceived as most important as facilitators or barriers to the introduction and intended use of a new tool in the emergency department among nurses and a geriatric team. BACKGROUND:A high incidence of functional decline after hospitalisation for acute medical illness h...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.13275

    authors: Kirk JW,Sivertsen DM,Petersen J,Nilsen P,Petersen HV

    更新日期:2016-10-01 00:00:00

  • An evaluation of the role of the clinical education facilitator.

    abstract:AIMS AND OBJECTIVES:The objective of the study was to identify whether clinical education facilitators made a difference to the learning experiences of nurses in a large teaching hospital. BACKGROUND:Strategies for enabling continuous professional development are well established in health care organizations as key co...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2006.01275.x

    authors: McCormack B,Slater P

    更新日期:2006-02-01 00:00:00

  • An exploration of the potential risks associated with using pet therapy in healthcare settings.

    abstract::The widespread inclusion of companion animals into the homes and lives of humans has prompted a considerable amount of research into the health benefits of such relationships. Findings seem to confirm that if humans interact with companion animals they are likely to experience various health benefits. Programmes that ...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,评审

    doi:10.1046/j.1365-2702.2002.00628.x

    authors: Brodie SJ,Biley FC,Shewring M

    更新日期:2002-07-01 00:00:00

  • The meaning of feeling well in people with moderate or severe traumatic brain injury.

    abstract:AIM:The aim of this study was to elucidate the meaning of feeling well for people with moderate or severe traumatic brain injury. BACKGROUND:Considerable attention has been given to research consequences, quality of life and satisfaction with life in people with traumatic brain injury. Most studies reveal negative asp...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2008.02738.x

    authors: Jumisko E,Lexell J,Söderberg S

    更新日期:2009-08-01 00:00:00

  • A review of lay health beliefs research: insights for nursing practice in health promotion.

    abstract::Recent sociological research in the field of lay health and illness beliefs is reviewed and discussed in the light of nursing practice in health promotion. How the findings might deepen nurses' understanding of difficulties in adhering to desired health behaviours is outlined. The distinctions between 'public' and 'pr...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,评审

    doi:10.1111/j.1365-2702.1994.tb00409.x

    authors: Dines A

    更新日期:1994-11-01 00:00:00

  • Clinical observation and nursing care on the prevention of abdominal organ cluster transplantation rejection.

    abstract:AIMS AND OBJECTIVES:To investigate the clinical characteristics of rejection after upper abdominal cluster transplantation. BACKGROUND:Abdominal organ cluster transplantation is used to treat multiple abdominal organ diseases. Delay in monitoring and treatment can lead to graft failure. DESIGN:A descriptive study. M...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.12079

    authors: Zhang H,Chen L,Gu G,Guo Z,Gong F,Wu S,Zhang X,He X

    更新日期:2013-06-01 00:00:00

  • Chronic pain and the family: the experience of the partners of people living with chronic pain.

    abstract:AIMS AND OBJECTIVES:The purpose of this study was to explore the impact of chronic pain on the partner and family of a person with chronic pain. BACKGROUND:Chronic pain impacts not only on the individual but also their partner and/or other family members. Families of people with chronic pain have reported feeling powe...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2012.04215.x

    authors: West C,Usher K,Foster K,Stewart L

    更新日期:2012-12-01 00:00:00

  • 'Let's talk about sex' - A Knowledge, Attitudes and Practice study among Paediatric Nurses about Teen Sexual Health in Hong Kong.

    abstract:AIMS AND OBJECTIVES:To explore the knowledge, attitudes and practices of paediatric nurses in Hong Kong towards adolescent sexual health issues. BACKGROUND:In Hong Kong, teens are becoming more sexually permissive. As a result, early sexual activity, Sexually transmitted diseases (STD) and unplanned pregnancies among ...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.12869

    authors: Yip BH,Sheng XT,Chan VW,Wong LH,Lee SW,Abraham AA

    更新日期:2015-09-01 00:00:00

  • Exploration of a nurse practitioner-led phase two cardiac rehabilitation programme on attendance and compliance.

    abstract:AIMS AND OBJECTIVES:To evaluate the impact of a nurse practitioner-led phase two cardiac rehabilitation and secondary prevention programme on attendance and compliance. BACKGROUND:Despite strong evidence for the benefits of cardiac rehabilitation, attendance/completion rates remain low. Nurse practitioner-led services...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.15133

    authors: O'Toole K,Chamberlain D,Giles T

    更新日期:2020-03-01 00:00:00

  • A literature review of the potential effects of having a parent with chronic renal failure.

    abstract:AIMS AND OBJECTIVES:This review aims to answer the question 'What are the possible effects on children of having a parent with chronic renal failure?' BACKGROUND:Chronic illness affects the whole family, not just the individual with the illness. It would appear that little research has been undertaken to consider the ...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,评审

    doi:10.1111/j.1365-2702.2007.02154.x

    authors: Coldstream F,le May A

    更新日期:2008-03-01 00:00:00

  • The management of diabetes in adolescents and young adults: a preliminary case study.

    abstract::This paper describes one part of a first-stage study concerned with the care received by a group of adolescents and young adults with insulin-dependent diabetes mellitus (IDDM) in one district health authority. The paper reports findings from a self-selected sample of 30 patients aged between 15 and 25. Each of the 30...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.1995.tb00215.x

    authors: Robinson JJ,Sowden JA,Tattersall RB

    更新日期:1995-07-01 00:00:00

  • Patients' lived experiences of waiting for and undergoing endovascular aortic repair in a hybrid operating room: A qualitative study.

    abstract:AIMS AND OBJECTIVES:The overall aim of the study was to illuminate the patients' lived experiences of waiting for and undergoing an endovascular aortic repair (EVAR) in a hybrid operating room (OR). BACKGROUND:The hybrid OR is an example of the technological advancements within hospitals. The environmental impact on h...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.15129

    authors: Bazzi M,Lundèn M,Ahlberg K,Bergbom I,Hellström M,Lundgren SM,Fridh I

    更新日期:2020-03-01 00:00:00

  • The reported expression of pain and distress by people with an intellectual disability.

    abstract:AIMS AND OBJECTIVES:To explore the assumption that people with ID are unable to communicate effectively about pain by examining the extent to which they were reported as using language and behaviour that was readily understandable to others to communicate pain as distinct from distress. BACKGROUND:The healthcare needs...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2012.04269.x

    authors: McKenzie K,Smith M,Purcell AM

    更新日期:2013-07-01 00:00:00

  • Systematic review of qualitative studies exploring parental experiences in the Neonatal Intensive Care Unit.

    abstract:AIMS AND OBJECTIVES:To determine the feasibility and utility of a thematic analysis approach to synthesising qualitative evidence about parental experiences in the neonatal intensive care unit. BACKGROUND:Admission of infants to the neonatal intensive care unit is usually an unexpected event for parents who can cause ...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章,评审

    doi:10.1111/jocn.13259

    authors: Al Maghaireh DF,Abdullah KL,Chan CM,Piaw CY,Al Kawafha MM

    更新日期:2016-10-01 00:00:00

  • Beyond tokenistic involvement of older people in research - a framework for future development and understanding.

    abstract::Research and development work in health and social care are increasingly required to involve users at all stages of the research process yet there is scant empirical evidence to support the justification of this laudable aim. Evidence does suggest that at present efforts to achieve this are primarily tokenistic and th...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2005.01162.x

    authors: Dewar BJ

    更新日期:2005-03-01 00:00:00

  • Shifting roles in nursing--does role extension require role abdication?

    abstract:AIMS AND OBJECTIVES:To discuss findings relating to role extension and loss of nursing care to auxiliary nurses. BACKGROUND:There is ongoing discussion in the literature about what nurses' roles may be and how the extension of role affects patient care. Various models have been devised to measure outcomes and the valu...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2007.02135.x

    authors: Pearcey P

    更新日期:2008-05-01 00:00:00

  • Pressure ulcer risk assessment: retrospective analysis of Braden Scale scores in Portuguese hospitalised adult patients.

    abstract:AIMS AND OBJECTIVES:To analyse the Braden Scale scores and sub-scores assessed in Portuguese hospitalised adult patients in association with their characteristics, diagnoses and length of stay. BACKGROUND:The Braden Scale is used worldwide for pressure ulcer risk assessment and supports nurses in the implementation of...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/jocn.12927

    authors: Sardo P,Simões C,Alvarelhão J,Costa C,Simões CJ,Figueira J,Simões JL,Amado F,Amaro A,Melo E

    更新日期:2015-11-01 00:00:00

  • The lived experience of the diabetes nurse specialist regular check-ups, as narrated by patients with type 2 diabetes.

    abstract:AIM:The aim was to elucidate the lived experience of regular diabetes nurse specialist check-ups among patients with type 2 diabetes. BACKGROUND:Diabetes care with diabetes nurse-led clinics in primary care has been established in Sweden since the 1980s. Information about patients' lived experience of these regular ch...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2007.02015.x

    authors: Edwall LL,Hellström AL,Ohrn I,Danielson E

    更新日期:2008-03-01 00:00:00

  • Patient perceptions of helpful communication in the context of advanced cancer.

    abstract:AIMS AND OBJECTIVES:Based on a secondary analysis of data from a large qualitative study on cancer care communication, we address the question: what do patients with advanced cancer identify as helpful in their communication encounters with health care providers? BACKGROUND:Communication is of critical importance to t...

    journal_title:Journal of clinical nursing

    pub_type: 杂志文章

    doi:10.1111/j.1365-2702.2009.03158.x

    authors: Stajduhar KI,Thorne SE,McGuinness L,Kim-Sing C

    更新日期:2010-07-01 00:00:00