Caregivers for people with end-stage lung disease: Characteristics and unmet needs in the whole population

Abstract

Introduction: End-stage lung disease (ESLD) (predominantly caused by chronic obstructive pulmonary disease and restrictive lung disease) is a signifi cant cause of death. Little is known about community care for people with ESLD especially in the period leading to death. This paper describes demographic characteristics of caregivers, and key characteristics of the deceased irrespective of specialist service utilization. Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey conducted statewide. For the last eight years questions about end of life have been asked of 3000 respondents annually (participation rate 77.9%). Directly standardized to the whole population, this study describes people who cared for someone with ESLD until death. Results: One third (6370/18267) had someone die in the last fi ve years from a terminal illness, 644 from ESLD (3.5% of respondents; 10.2% of deaths). One in fi ve (20.8%) provided physical care: 43 respondents provided day-to-day and 63 provided intermittent hands-on care for an average of 40.1 months (SD 56.9). Caregivers were on average 51.2 years old (range 17-85; SD 16.5) and one in fi ve was a spouse. Additional support to provide physical care was an unmet need by 17% of caregivers. The deceased were an average of 73.9 years old (range 47-92; SD 10.4). Only 31.1% were assessed as 'comfortable' or 'very comfortable' in the last fortnight of life. Discussion: Given the health consequences of caregiving, caregivers of people with ESLD would benefi t from prospectively defi ning their needs given the time for which intense caregiving is provided.

Exploring the Benefits to Caregivers of a Family-Oriented Pulmonary Rehabilitation Program

“…The sessions targeted to the management of respiratory symptoms and the management of stress and anxiety were highly valued, which is in line with the caregivers' needs already evidenced in terms of useful information to control COPD symptoms and emotional coping. 3,6 Qualitative data provided valuable information about the recruitment and engagement, which has been described as one of the most difficult issues in the implementation of interventions and a significant threat to studies' internal and external validity. 36 Facilitative factors have been identified by caregivers, namely: a pulmonary rehabilitation conducted in a familiar location (primary care centers), being recommended to participate by someone they trust (their general practitioner), the personalized attention and empathetic attitude of the professionals involved, and the acknowledgment of their own needs.…”

“…2 Family is among the most important resources for these patients, 3,4 assisting with activities of daily living, managing complex treatment technologies and medica-tion regimens, monitoring breathlessness, providing emotional support, participating in decision making, and facilitating communication with health-care providers. 5,6 Consequently, COPD caregiving can be a burdensome experience, with negative impacts on family caregivers' health, including poor self-rated mental health, 4 sleep problems, 3 and anxiety and depressive symptomatology. 7 The support given can also precipitate poorer dyad communication, 8 financial strain, and restrictions in social life.…”

“…7 The support given can also precipitate poorer dyad communication, 8 financial strain, and restrictions in social life. [4][5][6]8 Psychoeducational interventions have been found to reduce caregivers' stress in dementia, cancer, or stroke. [9][10][11] These interventions include the provision of information about treatments, symptom management, and community resources; training to provide care and respond to disease-related problems; and problem-solving and emotional-management strategies for coping with the disease demands.…”

Informal caregivers of patients with COPD: Home Sweet Home?

“…Indeed, caregivers report a lack of information, and emotional and practical support [25,26]. Informal caregivers have to rely upon extended family support [10], and they become an integral part of the care support system in the home [12].…”

Care Burden and Quality of Life Among the Caregivers of Patients with COPD

“…Bir çok kronik hastalık-ta olduğu gibi KOAH tedavisinde de genellikle semptom yönetimine odaklanılmaktadır [2,4]. KOAH'lı hastalar fiziksel ve sosyal fonksiyonlarda ciddi oranda sınırlılık/ yetersizlik, bağımlılık, üretkenlik kaybı, sosyal izolasyon yaşamakta, günlük yaşamını sürdürme, ilaçlarını kullanma, sağlık kontrollerini sürdürme gibi bir çok konuda bir bakım vericinin yardım ve desteğine gereksinim duymaktadır [2,4,5]. Hastalık sürecinde yaşanan zorluklar hasta birey kadar aileyi de etkilemektedir [2,4,6].…”