Experiences and needs of Bereaved Carers during Palliative and End-Of-Life Care for People with Chronic Obstructive Pulmonary Disease

Abstract

Aim: This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD). Method: Semi-structured interviews were undertaken with nine carers who had lost a loved one in the preceding 6 to 24 months. These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis. Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support. Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced.

Caregivers' perceived adequacy of support in end-stage lung disease: results of a population survey

“…In qualitative studies, spousal caregivers of people with advanced COPD have discussed the burden of caring [7,10] and have reported fatigue, loss of concentration and lack of sleep [19]. They have described restrictions on their own lives [6,7,24-26], isolation [6,24,26], anxiety and emotional distress [6,7,24].…”

“…They have described restrictions on their own lives [6,7,24-26], isolation [6,24,26], anxiety and emotional distress [6,7,24]. They have reported a lack of information about the prognosis and future management of the condition [24], a lack of practical information and information about services [24], a lack of emotional and bereavement support, and a lack of respite services [10]. The review by Caress et al concluded there is a dearth of information on the needs of caregivers of people with COPD and interventions that may best support them [13].…”

“…Bereaved caregivers of people who died from COPD have indicated that access to support services is limited by a lack of knowledge about, and signposting to available services, a perception among caregivers and, at times, patients that it is embarrassing to ask for help, and a lack of agreement between the patient and the caregiver as to what services should be accessed [10]. …”

“…Several mostly qualitative studies have been undertaken to understand better the impact of care when people have chronic obstructive pulmonary disease (COPD) [9-12]. Findings include the impact of providing care on the well being of caregivers [10], a dearth of quality information to support caregivers [13] and poor contingency planning for acute worsening especially of shortness of breath [9]. Although family burden may be high, for many people providing care for family members with COPD is a positive experience [12].…”

Examining markers of safety in homecare using the international classification for patient safety

“…In addition, health professionals were seen to provide sporadic information [35,36], use language that was too technical or clinical thus limiting patient and caregiver’s ability to be involved in their own care [37], use euphemisms that weakened understandings of the health issues at hand [38], and provide conflicting information and approaches regarding treatments [38]. This lack of specific information or failure to explain information in clear terms was linked to greater patient anxiety as well as strain on caregivers, leading to mismanagement of symptoms and thus increased patient hospitalizations [32,34,39].…”