Chronic obstructive pulmonary disease (COPD) is an incurable disease that not only affects those diagnosed, but also their family members, changing their lives completely.1,2 As the disease progresses, patients’ self-management ability deteriorates. These individuals need help to complete their activities of daily living,3 resulting in their dependence on family members.4 Chronic obstructive pulmonary disease is progressive as well as nonreversible. In addition to the progressive decline in lung function, people with COPD have multiple daily somatic symptoms, such as dyspnea, cough and sputum production. People with COPD also report fatigue, depression and social isolation.5 Acute exacerbations, which may be life threatening, increase the uncertainty, helplessness and vulnerability of people with COPD.3 Because smoking is the main risk factor for COPD,5 these individuals can experience shame of a self-inflicted disease, which may prevent some people from attaining an early diagnosis and care. Furthermore, many people with COPD often feel stigmatized by their healthcare professionals.6 Family members who care for loved ones with COPD have reported many challenges, such as anxiety, depression and fatigue, as well as strain, social isolation, powerlessness, helplessness and loss of freedom.3 At first, a COPD diagnosis may cause confusion for patients’ family members, who may not understand or recognize that COPD is a terminal disease.4,7 Further, the trajectory of COPD is relatively unpredictable, causing uncertainty for both parties.3 Patients’ family members must adopt new roles as family members of people with a progressive disease.7 This role of caregiver is typically long and evolves while both parties age.3 Due to the gradual course of COPD, family members may experience increasing physical and emotional burdens that negatively impact their psychological health.8 However, healthcare professionals often fail to recognize caregivers’ burdens,8 so the needs of family members remain unmet.3 For example, family members require adequate information about COPD, including its progression and prognosis, to fulfill their roles as informal caregivers and maintain their emotional health in a demanding, unpredictable situation. In addition, informal caregivers require a wide variety of practical skills. If family members are inadequately prepared for acute exacerbations and other life-threatening situations, they may feel helpless and overloaded.1 Therefore, they must gain the skills and ongoing support they need from healthcare professionals.9 Family members wish to be actively involved in healthcare appointments. Furthermore, they want to be involved in the whole care process. However, their roles are often unclear, especially in the acute phases of the disease, and their expertise is not always acknowledged.7 Family members feel ignored in healthcare appointments; this is despite the opportunity for healthcare professionals to receive current and accurate information about how people with COPD are coping at home, according to their family members.2 The results of our systematic review10 in this issue of the JBI Database of Systematic Reviews and Implementation Reports reveal that the family members of patients with COPD are frustrated because they do not receive enough information or counseling from healthcare professionals. Informal caregivers need more information about COPD and strategies to cope with COPD self-management at every stage of the disease, including palliative and end-of-life care. The need for the development of self-management counseling programs that target family members of patients with COPD is evident. Family members must receive the information, skills and support they need in their incredibly important supportive role. The World Health Organization11 has estimated that approximately 65 million people are affected by moderate to severe COPD, and that 3 million deaths are caused by COPD annually, making it a leading cause of mortality and morbidity worldwide.5 The economic burden of COPD is significant; in the European Union region, the direct annual cost is estimated to be about US$42 billion and in the United States approximately $32 billion.5 Therefore, COPD is a major global health problem.11 World COPD Day raises awareness about COPD and improves COPD care throughout the world. The theme for World COPD Day, which will be held November 20, 2019, is “All Together to End COPD”. Family members who take care of people with COPD, especially at the advanced stage of the disease, play an important role, for example, in assisting their loved ones with living at home for as long as possible. It is therefore important for healthcare professionals to consider the needs of family members when developing self-management counseling and preventive programs for people with COPD.
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Dec 15, 2020
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