ArticlePloS one2017
Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention.
Article in PloS one, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 4 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
24 citing papers in PubMed, 4 syntheses or guidelines pooled it, 66 citations in OpenAlex.
- The prevalence of panic disorder in chronic obstructive pulmonary disease: a systematic review, meta-analysis, and meta-regression.Systematic reviews · 2026Pooled it
- BreathCarer: Informal carers of patients with chronic breathlessness: a mixed-methods systematic review of burden, needs, coping, and support interventions.BMC palliative care · 2025Pooled it
- Support and Its Effect for Persons Affected by COPD and Their Next of Kin - an Systematic Integrative Review.International journal of chronic obstructive pulmonary disease · 2025Pooled it
- Does the carer support needs assessment tool cover the established support needs of carers of patients with chronic obstructive pulmonary disease? A systematic literature search and narrative review.Palliative medicine · 2020Pooled it
- The impact of regular, low-dose, sustained-release morphine for chronic breathlessness on caregiver burden: An exploratory analysis of the BEAMS trial.Palliative medicine · 2024Trial
- Self-care practices and support needs for breathlessness among outpatients with lung cancer: A qualitative study including family caregiver perspectives.Asia-Pacific journal of oncology nursing · 2026Article
- PRHOCARER study: protocol for a multicentre, convergent, mixed-methods trial assessing the effectiveness of pulmonary rehabilitation programmes and the needs of informal carers of people with chronic respiratory diseases.BMJ open respiratory research · 2026Article
- Interventions for unpaid carers of people living with breathlessness due to chronic respiratory diseases: Scoping review.Palliative & supportive care · 2026Article
- Diminishing activities of daily living as severity of chronic breathlessness worsens: a national, cross-sectional survey.BMJ open respiratory research · 2025Article
- Qualitative dyadic analysis in care partnership research: a scoping review.BMC medical research methodology · 2025Article
- Explain Breathlessness: Could 'Usual' Explanations Contribute to Maladaptive Beliefs of People Living with Breathlessness?Healthcare (Basel, Switzerland) · 2024Article
- A Mixed Methods Evaluation of a Pilot Multidisciplinary Breathlessness Support Service.Evaluation review · 2023Article
- Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review.Healthcare (Basel, Switzerland) · 2021Review
- Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers.Healthcare (Basel, Switzerland) · 2021Article
- "It's like being on a roller coaster": the burden of caring for people with severe asthma.ERJ open research · 2021Article
- A Nurse-Led Education Program for Pneumoconiosis Caregivers at the Community Level.International journal of environmental research and public health · 2021Article
- Two faces of the same coin: a qualitative study of patients' and carers' coexistence with chronic breathlessness associated with chronic obstructive pulmonary disease (COPD).BMC palliative care · 2020Article
- Attitude change and increased confidence with management of chronic breathlessness following a health professional training workshop: a survey evaluation.BMC medical education · 2020Article
- Frustrated Caring: Family Members' Experience of Motivating COPD Patients Towards Self-Management.International journal of chronic obstructive pulmonary disease · 2020Article
- Improving the quality of life of people with advanced respiratory disease and severe breathlessness.Breathe (Sheffield, England) · 2019Review
Corrections and comments
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Authors and funding
11 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionBreathlessness is a common symptom of advanced disease placing a huge burden on patients, health systems and informal carers (families and friends providing daily help and support). It causes distress and isolation. Carers provide complex personal, practical and emotional support yet often feel ill-prepared to care. They lack knowledge and confidence in their caring role. The need to educate carers and families about breathlessness is established, yet we lack robustly developed carer-targeted educational interventions to meet their needs.
methodsWe conducted a qualitative interview study with twenty five purposively-sampled patient-carer dyads living with breathlessness in advanced disease (half living with advanced cancer and half with advanced chronic obstructive pulmonary disease (COPD). We sought to identify carers' educational needs (including what they wanted to learn about) and explore differences by diagnostic group in order to inform an educational intervention for carers of patients with breathlessness in advanced disease.
resultsThere was a strong desire among carers for an educational intervention on breathlessness. Six key topics emerged as salient for them: 1) understanding breathlessness, 2) managing anxiety, panic and breathlessness, 3) managing infections, 4) keeping active, 5) living positively and 6) knowing what to expect in the future. A cross-cutting theme was relationship management: there were tensions within dyads resulting from mismatched expectations related to most topics. Carers felt that knowledge-gains would not only help them to support the patient better, but also help them to manage their own frustrations, anxieties, and quality of life. Different drivers for education need were identified by diagnostic group, possibly related to differences in caring role duration and resulting impacts.
conclusionMeeting the educational needs of carers requires robustly developed and evaluated interventions. This study provides the evidence-base for the content of an educational intervention for carers of patients with breathlessness in advanced disease.
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