Coping with patients suffering from overactive bladder: experiences of family caregivers in Hong Kong

Abstract

This article examines the experiences of family caregivers working with patients affected by overactive bladder (OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non-western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities. Because of the increasing prevalence of OAB worldwide, this study investigated the experiences of such caregivers in Hong Kong, examining their emotional and social needs. A qualitative research design with individual semistructured interviews was adopted, and snowball sampling was used to recruit 35 family caregivers who were referred by patients with OAB. The participants were interviewed individually from May to August 2013. A phenomenological approach was adopted in the data analysis. The data revealed that all participants had unpleasant experiences in caring for family members with OAB. A sense of powerlessness, helplessness, confusion and guilt, as well as grievances and social withdrawal, was prevalent, causing great physical and emotional suffering and subsequent physical and emotional burnout. These negative experiences were often caused by confusion regarding caretaking duties. The negative emotions of the participants and their family members also caused a lack of communication and mutual understanding about the disease, causing care-giving to be even more confusing and difficult. Furthermore, because of traditional Chinese cultural values and gender expectations, male participants experienced the triple burden of employment, domestic duties and care-giving. More holistic social and healthcare support services should be provided for care-giving family members of patients with OAB patients, empowering such caregivers to attend to family members and care for their own emotional well-being.

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

“… 38 , 39 Findings pertaining to conflict between patients and their family caregivers in our review has been reported among groups not typically associated with palliative care. 37 , 40 – 42 For example, distress for patients with overactive bladder syndrome and their family caregivers, can also lead to a lack of communication and limit mutual understanding between patients and family caregivers. 40 The emotional and physical burden of mental illness have also resulted in feelings of conflict and ambivalence between patients and their family caregivers.…”

“… 37 , 40 – 42 For example, distress for patients with overactive bladder syndrome and their family caregivers, can also lead to a lack of communication and limit mutual understanding between patients and family caregivers. 40 The emotional and physical burden of mental illness have also resulted in feelings of conflict and ambivalence between patients and their family caregivers. 41 Conflict among dyads in spinal cord injury can also arise because of difficulty negotiating new roles.…”

Experiencing the care of a family member with Crohn’s disease: a qualitative study

“…At the time the family member is diagnosed, the person who is to become the carer is not familiarised with CD. The unawareness of the disease and how to deal with its progress, the physical and psychological needs of the person requiring care and the options and means of caring for them generated feelings of frustration among the participants of the present study, which in turn diminished their confidence and sense of control in order to serve as carers 30. As with other disease processes,31 the family carers in the present study assumed the provision of care with no knowledge or experience in dealing with the disease, the decision-making, the management of the complications and the interpersonal challenges yet to come, all of which could be facilitated if early-stage information was available regarding the progression of the disease,32 33 information and support that would enable the carer and patient to plan for events that might arise in the future 34…”

Imprisoned in the Cultural Stereotypes of Overactive Bladder

“…The unpleasant experiences continued and sometimes could be accelerated when the patients were diagnosed with OAB. In some occasions they encountered difficult communication with their family caregivers (Siu, 2015c), and more often they experienced significant communication gap with their urologists under gender and power differential (Siu, 2015a). As shown by these earlier participants, they often perceived that they were not being respected by their urologists in the sense that they were not treated seriously,…”

“…This study was inspired by my earlier research on patients with OAB, covering their illness experiences (Siu, 2014b), shopping behavior for doctors (Siu, 2014a), and doctor-patient communication gap (Siu, 2015a). Also, how the significant others of the patients with OABsuch as the family caregivers (Siu, 2015c) and doctors (Siu, 2015b) -perceived about the disease and the patients is to be influenced by the social and cultural forces. Therefore, this study was conducted to investigate the embedded social and cultural stereotypes of OAB in Hong Kong, aiming at providing a holistic picture in explaining the encounters of the participants and their sick role adaptation.…”