Patient participation during and after a self-management programme in primary healthcare – The experience of patients with chronic obstructive pulmonary disease or chronic heart failure

Highlights

• Patient participation is facilitated by equality and means for sharing and discussing.

• Patient participation is influenced by individuals’ willingness to share and learn.

• Self-management programmes in primary care may enhance patient participation.

Abstract

Objective

Patient participation is facilitated by patients’ ability to take responsibility for and engage in health issues. Yet, there is limited research as to the promotion of these aspects of patient participation in long-term healthcare interactions. This paper describes patient participation as experienced by patients with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF); the aim was to describe if and how a self-management programme in primary healthcare influenced patient participation.

Methods

Patients who had participated in a self-management programme were interviewed in nine focus groups (36 patients). Data was analysed using qualitative content analysis.

Results

Patients described equality in personal interactions, opportunities to share and discuss, and a willingness to share and learn to facilitate patient participation in a self-management programme. Consequently, patient participation was promoted by a match between the individuals’ personal traits and the context.

Conclusion

Features facilitating patient participation by means of sharing and assimilating knowledge and insights should be included in self-management programmes and in the care for patients with COPD and CHF.

Practice implications

A self-management programme can complement regular primary care regarding enhanced understanding of one’s disease and support patient participation and the patient’s own resources in self-management.

Introduction

It should be recognised that patients’ preferences, abilities and experiences vary, and that opportunities for patient participation in healthcare interactions need to be flexible [1]. A healthcare that emphasises patient participation is known to also facilitate patients’ ability to engage in self-management activities in everyday life [2,3]. Interventions should be tailored to enhance the individual patient’s opportunities for participation [4,5].

There is a growing number of patients with long-term conditions, such as chronic obstructive pulmonary disease (COPD) and chronic heart failure (CHF) [6]. These patients need self-efficacy to engage in symptom management, requiring the healthcare professionals to secure the patients recognise their primary role in maintaining physical functions and activities [7]. Therefore, patient participation need to be included in self-management interventions [8,9]. Living with COPD and CHF is characterised by multiple symptoms, of which many are similar, such as fatigue and respiratory difficulties [10]. Like most patient with long-term conditions, they are cared for in Primary Health Care (PHC): a first level contact that provide evidence based care, where diverse professions support the patient in preventive actions, like life style changes [6,11]. Consequently, health professionals in PHC have a key role in providing opportunities for COPD and CHF patients to optimize their everyday life [6].

Patient participation is advocated by the World Health Organisation, in particular in PHC [6]. However, different perspectives have been applied on patient participation [2]: to be interchangeable with shared decision making [12]; to be a relationship in nursing care [13]; or, from the perspectives of patients, a process that include mutual respect and equality [14,15]. Patients describe patient participation as a broad concept, that include dialogue; mutual sharing of knowledge; being included in the planning of care; establishing agreed health goals; and managing self-care [15], which is agreed upon by patients with COPD and CHF [16]. Patients with CHF have, among others, suggested that patient participation include a shared responsibility for self-management and rehabilitation [2,3], and to entail an active attitude [2].

While self-management interventions have the potential to impact on patients active participation [17], a further understanding of when interventions targeting patients with COPD or CHF influence patient participation is needed [18,19]. More specifically, interventions where knowledge is shared between patients as peers have not been fully explored, but would add knowledge with regards to facilitators and barriers to patient participation.

An intervention study including a self-management programme for patients with COPD and CHF was recently performed in Swedish PHC [20]. The programme, informed by Bandura’s self-efficacy theory [16], was designed to increase self-efficacy in relation to fatigue and exercise, to decrease symptoms and limitations in functioning, and to increase overall health [20]. To meet the objectives, techniques such as performance mastery, modelling, interpretation of symptoms, and social persuasion, was used [21]. The three-month intervention included six group sessions (with three patients diagnosed with COPD and three patients with CHF in each group), where the patients could share their health issues and experiences of self-management. The groups were led by resident staff: a district nurse and a physiotherapist, with special training for this assignment. The patients’ individual action plans, which included their current condition and health goals, formed the agenda for each group’s sessions.

Recognising what patients suggest is patient participation, the programme could potentially enhance opportunities for: knowledge and skills to be shared, experiences of problems and goals to be recognised, ones health problems being addressed in a shared process, and enhancements in self-care ability [15,16]. The aim of this study was to describe if and how a self-management programme in primary healthcare influenced patient participation.