The role of social support in improving chronic obstructive pulmonary disease self-management

KEYWORDS:

• Chronic obstructive; pulmonary disease
• self-care
• social support
• disease management
• social relationships

1. Introduction

Chronic Obstructive Pulmonary Disease (COPD) is a progressive lung condition with distressing exacerbations – i.e. acute deteriorations in respiratory health – as a key characteristic. Its societal impact is significant as exacerbations contribute to impaired quality of life, and increased hospitalizations, mortality and healthcare costs [1]. The main COPD symptoms are dyspnea, fatigue, and cough, which seriously impact on activities of daily living, psychological distress, and social isolation [2].

A COPD self-management intervention is an essential part of COPD disease management. It is defined as a structured, but personalized, and often multi-component intervention, with goals of motivating, engaging, and supporting the patients to positively adapt their health behavior(s) and develop skills to better manage their disease [3]. Goals of COPD self-management are closely related to social support and identified as: optimizing and preserving physical health; reducing symptoms and functional impairments in daily life; increasing emotional and social well-being, and quality of life; and establishing effective alliances with healthcare professionals, family, friends and community [3]. Self-management is informed by social cognitive theory [4], which emphasizes that personal factors (especially beliefs) and environmental factors (both physical and social) interact to influence behavior and is associated with improved health-related quality of life and reduced hospitalizations [5].

Social support refers to the provision of psychological and material resources by a social network, aimed at improving an individual’s ability to cope with their disease [6]. It is differentiated in four types of support: (1) emotional e.g. sharing life experiences, empathy; (2) instrumental e.g. materials and services to help with daily tasks; (3) appraisal e.g. information for self-evaluation purposes; and, (4) informational e.g. information (advice, guidance) intended to help individuals to cope with difficulties [7]. There is increasing evidence highlighting the important role of social support and social relationships on health outcomes [8], healthier behaviors, and treatment adherence to e.g. self-management regimens [6]. Further unraveling the association between social support and health outcomes, and exploring the role of social support in COPD self-management may therefore help to optimize and tailor COPD self-management.

2. Social support in COPD

Social support is valuable for coping in COPD patients [9]. However, life stresses from COPD, including reduced mobility and embarrassment and fear of symptoms, can significantly disrupt social relationships, increase isolation, and place a burden on social networks and healthcare providers [9,10]. Whereas lack of social connections, high social isolation, and insufficient social relationships are known risk factors for mortality in the general population [11], this has not (yet) been highlighted in the COPD literature. Some studies indicate that in COPD patients positive social support is associated with reduced hospitalizations, fewer exacerbations, better health status, and improved disease management behaviors [8], but no consistent evidence for these associations exists [12]. However, mental health and self-efficacy have emerged as possible areas of benefit from social support in COPD patients [12].

In line with the earlier mentioned small body of research, only a few studies have evaluated social networks of COPD patients. Positive relationships were reported between the size of the patient’s social network and self-efficacy for walking, disease severity, exercise tolerance, and breathlessness [9]. It would also be relevant to understand more regarding the characteristics of social networks within the broader conditions in which COPD patients live and manage their disease, not only the structure, contact frequency, duration, reachability, and intimacy of social support, but also life events (e.g. death of a loved one, move) [12]. This information may facilitate identification of factors that affect social networks and can be used to create a supportive social network that fits with the needs and preferences of individual COPD patients, and stimulates motivation, coping, and self-management behavior.

Social support can both have a positive and negative influence on self-management behavior [4]. The perceived quality of social support and satisfaction with social networks are therefore relevant. Again, little research has been performed that addresses positive and negative social support among COPD patients. However, individuals who report more satisfaction with their social network, experience more positive emotions during social interactions (e.g. compliments, listening), and receive better emotional support show less cognitive decline [7]. By contrast, the inability to reciprocate help can threaten the individual’s self-esteem if it requires a COPD patient to admit impairment or conflicts with values of self-reliance and independence [13]. Research on positive and negative social support suggests also that psychological factors influence coping with COPD [13]. Anxiety and depression in COPD patients are for example both inversely associated with positive social support, while negative social interactions (e.g. criticisms, disagreements) are associated with increased levels of depression and anxiety [13]. COPD self-management interventions could play a role in improving the perceived positive and reducing the perceived negative social support.

3. Implementation strategies of social support in self-management

Lack of social support has been identified as a barrier to active self-management of diseases [14], resulting in lower mood and motivation to engage in self-management activities [10]. A feeling of loneliness and isolation may diminish the patient’s confidence in their self-manage abilities [15], and their positive affect, i.e. the extent a person feels enthusiastic and active. The latter has been shown to have an association with self-management abilities in COPD patients [16]. Social support is also essential in the use of exacerbation action plans [17], an important component of many COPD self-management interventions [5]. Especially those patients having difficulties recognizing exacerbations, often need support from carers to realize that symptoms are worsening [17]. Finally, a recent longitudinal study including patients with moderate to severe COPD showed that structural social support – i.e. living with others and having a caregiver – was respectively associated with higher levels of physical activity and greater participation in pulmonary rehabilitation programs [18]. This may also be the case for adherence to COPD self-management interventions.

There are several strategies to foster meaningful relationships and thus social support in COPD self-management interventions. Self-management group meetings can broaden peer networks, as social comparison to and interacting with others with COPD will offer learning opportunities, a sense of validation of lived experience, and an opportunity to make new friendships [10]. Carers and partners should be stimulated to join self-management meetings as this may help them to get more insight into their partner’s symptoms and disease management, and increase the patient’s perceived support [14]. Ongoing case manager support, recognized as a key component to achieve effective and safe COPD self-management, can in addition lead to a valuable relationship between the patient and case manager [19]. If casemanager support can be directed toward behavior change techniques such as goal setting and action planning in COPD self-management interventions, this may lead to better patient decision-making and optimization of self-management behaviors. Finally, the form and content of the self-management intervention should preferably be patient-tailored so it meets the patient’s needs and can target different social foci (e.g. support perceptions, network size, social skills) [11].

Some general approaches can be suggested to improve social support and engage patients to actively seek and apply for social support, and therefore reduce the risk of social isolation. However, it is crucial to first identify the COPD patients who are at risk of social isolation. Since these patients are less likely to have relatives who might notice their isolation, it is also important to create more awareness among healthcare providers about available strategies to improve social support. This may result in healthcare providers showing more sympathy and directing patients to local community organizations to stay socially active e.g. by stimulating patients to connect with peers in self-management programs.

As immobility increases the risk of social isolation and limits the access to self-management programs, physical mobility, and transport options should be optimized [14]. Mobility and transport problems are associated with more missed or delayed appointments and medication use [20], resulting in suboptimal COPD care and thus poorer health outcomes. Pulmonary rehabilitation should be considered to optimize the patient’s physical condition and increase physical mobility. This will include the discussion of walking aids if necessary. In addition, activities as grand parenting and dog walking should be encouraged as they lead to a higher amount and intensity of physical activity in COPD patients [18]. Depending on the healthcare system and social arrangements policies, transport options and reimbursement for e.g. access to transport could be discussed. Patient associations and coalitions could play a crucial role in the improvement of transport options for COPD patients, specifically if it blocks access to good quality of COPD care. Home-based pulmonary rehabilitation or self-management interventions can be considered if mobility or transport is a significant barrier for participation [14].

Living with others contributes to maintaining patients’ daily physical activities through greater opportunities for reciprocal social interactions [18]. Positive effects can also be expected from the encouragement of patients by family members to express feelings and discuss private matters [21]. In contrast, unsupportive family relationships, e.g. being critical and blaming each other, are associated with psychological distress, dyspnea, and impaired health-related quality of life in patients with COPD [21]. Misconceptions or a lack of understanding by family and friends may lead to unsupportive behavior, advice that conflicts with self-management recommendations, or even promotion of unhealthy behaviors such as smoking [4]. Case-manager support can help patients and their families to adapt their roles and cope with fluctuations in the disease, and provide opportunities to discuss their situation to manage it in everyday life. Social interventions such as a national health insurance scheme or governmental schemes, focusing on the elderly (e.g. public transport at reduced prices), may complement family support and preserve the independence of COPD patients (and reduce carer burden).

Finally, patients’ self-efficacy in managing (emotional) symptoms can be further enhanced by promoting communication about the patient’s social context, family roles, relationships, and (leisure) preferences [22]. Effects of social support do likely vary with the patient’s disease and self-care behavior. Social support may be more important when the self-management intervention, the medication regimen, or patient disease status is more complex. Furthermore, self-care tasks that have a social component, e.g. related to diet, may be more open to social network influences than tasks that are usually performed in a more solitary manner [4] such as taking medication as part of a self-treatment exacerbation action plan. Implementation strategies of social support to improve COPD self-management therefore need to consider a multifactorial, but patient-centered and patient-tailored approach.

4. Conclusions

The use of patient-tailored COPD self-management interventions in which social support is facilitated should be considered as it will positively influence self-management behaviors. Despite evidence of the influence of social interactions on health, there is, however, no clear indication of what works best for whom. Optimizing social support in COPD self-management interventions can already be achieved by e.g. including group sessions, partner involvement, and casemanager support. However, for further improvements it is important to thoroughly evaluate the effects of specific types of social support (advice, education), specific providers (carer, family, healthcare provider), and where the social support is derived from. Furthermore, the identification of factors that promote and maintain social support, and the role and benefit from social support in COPD self-management interventions needs to be revealed. This information will enable implementation of more effective social support strategies in COPD self-management interventions through which further positive changes in behavioral change and health outcomes can be expected.

Declaration of interest

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Reviewer disclosures

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Additional information

Funding

This paper was not funded.