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A qualitative study of patients' goals and expectations for self-management of COPD.

ABSTRACT: Chronic obstructive pulmonary disease (COPD) is an illness that affects patients on multiple levels, both physically and psychologically. While there is a growing body of evidence for the efficacy of self-management among patients with COPD, little evidence is available on the optimal content and methods for delivering self-management support.The purpose of this study was to address gaps in the literature on self-management support by examining patients' responses to questions about goals, needs, and expectations regarding self-management using qualitative methods in a broadly representative sample of patients with moderate to severe COPD. By focusing on patients' perceptions of their needs, we hoped to guide development of cognitive-behavioural interventions for self-management support.Patients >45 years of age with a physician diagnosis of COPD were recruited as part of a larger randomised controlled trial designed to determine the effectiveness of a lifestyle behavioural intervention to increase physical activity. In-depth interviews were conducted at baseline data collection using 10 standardised open-ended questions tailored to examine factors relevant to self-management support including concerns, fears, learning needs, barriers, facilitators, and goals. All interviews were audio recorded and analysed using qualitative methods. Responses were coded by three raters into thematic categories.A sample of 47 interviews with patients of mean age 68.4 years, 53% male, 87% white were used in the analysis. The distribution of spirometric impairment based on percent predicted forced expiratory volume in 1 second (FEV1) was moderate (57.5%), severe (31.9%), and very severe (10.6%). In response to questions targeting needs and goals for care, three main themes (loss, fear, and desire for improved care) and seven associated sub-themes were identified. Because of breathlessness and fatigue as well as symptoms from conditions other than COPD, patients reported the loss of ability to participate in pleasurable and necessary activities of daily living and the desire to recover at least some of their functioning. They expressed problems with social isolation and uncertainty about their prognosis, as well as the hope to improve. In addition, fearful experiences associated with uncontrolled breathlessness and a wish for greater understanding and knowledge about treatment were major concerns.These qualitative results suggest that the content of self-management support for patients with COPD should focus on addressing patients' fears associated with the uncertainty, progression, and suffering of their disease, their expectations about overcoming or replacing losses, their needs for improved health literacy and their desire for improved care. These responses indicate areas where cognitive-behavioural intervention should focus in order to enhance patient self-efficacy, motivation, and behavioural change for improved self-management.

SUBMITTER: Wortz K

PROVIDER: S-EPMC3745027 | biostudies-other | 2012 Dec

REPOSITORIES: biostudies-other

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A qualitative study of patients' goals and expectations for self-management of COPD.

Wortz Kathryn K Cade Angela A Menard James Ryan JR Lurie Sue S Lykens Kristine K Bae Sejong S Jackson Bradford B Su Fenghsiu F Singh Karan K Coultas David D

Primary care respiratory journal : journal of the General Practice Airways Group 20121201 4

<h4>Background</h4>Chronic obstructive pulmonary disease (COPD) is an illness that affects patients on multiple levels, both physically and psychologically. While there is a growing body of evidence for the efficacy of self-management among patients with COPD, little evidence is available on the optimal content and methods for delivering self-management support.<h4>Aims</h4>The purpose of this study was to address gaps in the literature on self-management support by examining patients' responses ...[more]

PMID: 23138844

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Project description:ObjectiveTo understand the facilitators and barriers to the self-management of chronic obstructive pulmonary disease (COPD) in rural Nepal.SettingsCommunity and primary care centres in rural Nepal.ParticipantsA total of 14 participants (10 people with COPD and 4 health care providers) were interviewed.Primary and secondary outcome measuresPeople with COPD and healthcare provider's experience of COPD self-management in rural Nepal.ResultsFacilitators and barriers affecting COPD self-management in Nepal operated at the patient-family, community and service provider levels. People with COPD were found to have a limited understanding of COPD and medications. Some participants reported receiving inadequate family support and described poor emotional health. At the community level, widespread use of complementary and alternative treatment was found to be driven by social networks and was used instead of western medicine. There were limited quality controls in place to monitor the safe use of alternative treatment. While a number of service level factors were identified by all participants, the pertinent concerns were the levels of trust and respect between doctors and their patients. Service level factors included patients' demands for doctor time and attention, limited confidence of people with COPD in communicating confidently and openly with their doctor, limited skills and expertise of the doctors in promoting behavioural change, frustration with doctors prescribing too many medicines and the length of time to diagnose the disease. These service level factors were underpinned by resource constraints operating in rural areas. These included inadequate infrastructure and resources, limited skills of primary level providers and lack of educational materials for COPD.ConclusionsThe study findings suggest the need for a more integrated model of care with multiple strategies targeting all three levels in order to improve the self-management practices among people with COPD.

Project description:BACKGROUND:People with chronic pain use a range of healthcare services, but they also report a high degree of dissatisfaction with treatments. One reason for dissatisfaction might be participants' expectations towards treatments. The aim of this study was to explore expectations of people with chronic pain towards participation in easily accessible pain management interventions delivered in public primary care. METHODS:A qualitative study using semi-structured individual face-to-face interviews with 21 informants. The informants were recruited among participants enrolled in a randomised controlled trial on the effect of an easily accessible self-management course for people with chronic pain. The data were analysed thematically using Systematic Text Condensation. RESULTS:Having experienced pain for a long time, there was no specific expectation of a cure or a significant alleviation of the pain. The informants' expectations mainly concerned a hope that participation could lead to a better everyday life. The informants said that hope was important as it motivated them to keep going and continue self-care activities. The hope acted as a driving force towards trying new interventions and maintaining motivation to do activities they experienced as beneficial. Both concrete aspects of the current intervention and an understanding of what interventions in general could offer contributed to the informants hope. The expectations centred about the interventions being something new, as they had not previously tried this service, an opportunity to gain and reinforce skills, to help them continue to grow as a person, to meet others in similar situations, and to access professional support in an easy manner. Participating in interventions provided by healthcare services was seen by some as an act of self-care, where they did something active to manage their health. CONCLUSIONS:Expectations towards the interventions were related to a hope for participation leading to a better everyday life. The role of hope for peoples' motivation to self-care implies that service providers should be aware of and help to maintain hope for a better everyday life. The importance of social support as part of self-care should be acknowledged when developing interventions targeting chronic pain. TRIAL REGISTRATION:ClinicalTrials.gov: NCT02531282 . Registered on August 21 2015.

Project description:Objective: In Sweden, patients with chronic conditions, such as chronic obstructive pulmonary disease (COPD), often receive education at specialized nurse-led clinics at primary health care centers (PHCCs). Identifying patients' needs for information about COPD is the key to individualized care. This study aimed to assess self-reported needs for information about COPD in primary care patients with either moderate (GOLD 2) or severe (GOLD 3) COPD and identify patient characteristics and exacerbation patterns associated with the findings.Design: A cross-sectional study.Setting: Twenty-four PHCCs in Stockholm, Sweden.Subjects: Randomly selected primary care patients with COPD in GOLD stages 2 and 3 (n = 542).Main outcome measures: The Lung Information Needs Questionnaire (LINQ) was used to assess perceived information needs. Spirometry results and descriptive, self-reported data on patient factors such as exacerbation history, treatment, smoking, weight/height, comorbidities, health care contacts, education and symptoms were collected.Results: Overall, the greatest reported needs were for information about self-management and diet. GOLD 2 patients (68%) expressed greater needs for information than GOLD 3 patients (32%). We found significant associations between high information needs and patient-related factors such as 'No assigned GP' (OR = 4.32 [95% CI 2.65-7.05]) and 'No contact with COPD nurse in the past 12 months' (OR = 1.83 [95% CI 1.19-2.81]).Conclusion: COPD patients felt they knew too little about self-management of their disease. Low information needs were strongly associated with continuity in patient-GP consultations and moderately associated with contact with a COPD nurse. These associations were strongest in patients with moderate COPD.Key points: As patients with COPD often have multimorbidity, identifying patients' needs for information about COPD is essential to providing individualized patient education and care. In this study of 542 patients from 24 Swedish primary care centers, we found that:Patients with COPD, particularly those with moderate airflow limitation (i.e. GOLD 2) felt they needed more information about COPD than currently provided by health care professionals in primary care.Low information needs were strongly associated with continuity in patient-GP consultations and moderately associated with contact with a COPD nurse. GPs' part in COPD patient education should not be overlooked, as individualized COPD care relies on GPs' expertise in managing patients with multimorbidity.

Project description:BACKGROUND:People struggling with chronic pain may benefit from different types of non-pharmacological interventions such as self-management courses. Self-management courses aim to increase participants' skills and knowledge in managing chronic conditions. Community health-care services in Norway have increasingly established Healthy Life Centres (HLCs) to offer easily accessible interventions to people in need of support to better handle a life with chronic illness. The aim of this trial is to investigate the expectations, effect and experience of an easily accessible, group-based self-management course delivered at a HLC for people with chronic pain. METHODS/DESIGN:This is an open pragmatic two-armed randomised controlled trial with an embedded qualitative study. The intervention is a self-management course comprising education, discussions, exchange of experiences between the participants, and physical movement exercises. The control group is offered a drop-in outdoor physical activity. The intervention period is 6 weeks. The primary outcome is patient activation measured by the patient activation measure (PAM). The secondary outcomes include measures of self-efficacy, pain and quality of life. Data will be collected at baseline, and after 3, 6 and 12 months. Using a mixed linear model, the number needed in each arm to achieve a power of 80 % becomes 55. To allow for dropout, the aim is to include 120 participants. Analysis will be done using mixed linear models. In the embedded qualitative study, we will perform semi-structured face-to-face interviews with a sample from both trial arms before randomisation and after 3 and 12 months. The topics elaborated will be motivation for participation and experiences with the activity related to possible changes in managing and coping with chronic pain. DISCUSSION:There is need for more knowledge on interventions delivering self-care support in an easily accessible way that aim to reach those in need of this kind of health service. This trial will produce important knowledge on the effect and the experiences of participants in such an easily accessible self-management course delivered in Norwegian public primary care. TRIAL REGISTRATION:ClinicalTrials.gov: NCT02531282 . Registered on 21 August 2015.

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A qualitative study of patients' goals and expectations for self-management of COPD.

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A qualitative study of patients' goals and expectations for self-management of COPD.

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