ArticleInternational journal of chronic obstructive pulmonary disease2020
Frustrated Caring: Family Members' Experience of Motivating COPD Patients Towards Self-Management.
Article in International journal of chronic obstructive pulmonary disease, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled 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
- Patient perspectives on harmonica playing as an intervention for chronic obstructive pulmonary disease: a qualitative study.BMJ open · 2026Trial
- Using a photovoice methodology to explore the impacts of living with COPD on quality of life.International journal of qualitative studies on health and well-being · 2026Article
- The Current Status, Challenges, and Optimization Strategies for Self-Management in Patients with COPD: A Review.International journal of chronic obstructive pulmonary disease · 2026Review
- Patient Perceptions on the Role of Informal Caregiver Support in Managing Advanced COPD.Journal of patient experience · 2025Article
- Chronic obstructive pulmonary diseasés impact on the affected person and next of kin: A mixed methods study.Chronic illness · 2024Article
- Perspectives of family caregivers and nurses on hospital discharge transitional care for Muslim older adults living with COPD: a qualitative study.BMC nursing · 2024Article
- The Experiences of Close Relatives to Women with Chronic Obstructive Pulmonary Disease Stages III or IV: A Qualitative Study.Nursing reports (Pavia, Italy) · 2023Article
- Illness Perceptions and Self-Management among People with Chronic Lung Disease and Healthcare Professionals: A Mixed-Method Study Identifying the Local Context.Healthcare (Basel, Switzerland) · 2022Article
- Machine learning models for predicting risk of depression in Korean college students: Identifying family and individual factors.Frontiers in public health · 2022Article
- Ethical Dilemmas in Physicians' Consultations with COPD Patients.International journal of chronic obstructive pulmonary disease · 2022Article
- "It's like being on a roller coaster": the burden of caring for people with severe asthma.ERJ open research · 2021Article
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Authors and funding
5 authors.
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Abstract
Aim: The aim of this phenomenological study was to explore principal family members' experience of motivating patients with chronic obstructive pulmonary disease (COPD) towards self-management. Methods: Interviews were conducted with 10 family members (spouses and adult children) of COPD patients. The interviews were audio recorded, transcribed and analyzed thematically. Results: Being a principal family member of a COPD patient is characterized by frustrated caring; wanting the best for him/her and yet carrying a heavier burden than the person feels equipped for, lacking both knowledge about the disease progress and information about available healthcare resources. The situation demands much energy, due to COPD patients' lack of stamina; family members' fear of the patient's possible breathlessness; willingness to help, though sometimes meeting with negative reactions from the patient; and feeling ignored by health professionals (HPs). Family members expressed a need for a formal connection between patient-family-HPs. The increasing burden experienced by patients' family members is characterized by a sequential process in three phases of the patient's declining self-management. In the early phase, family and patient are ignorant of COPD yet recognize the patient's smoking as a risky lifestyle. In the intermediary phase, signs of COPD become evident to the family. The first turning point is when the family first observes the patient's acute exacerbation. A second turning point is in the advanced phase, when family and patient recognize COPD as a progressive disease, possibly fatal. We also identified family members' views on COPD patients' needs, and their own roles, main frustrations and concerns. Conclusion: Family members' experience of motivating COPD patients towards self-management is a sequential process where the family experiences advancing caring burden and declining self-management by the patient. We propose the establishment of COPD patients' teams consisting of patient-family-HP, aimed at the patients' best possible self-management.
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