Active carers: living with chronic obstructive pulmonary disease

Abstract

It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world.To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers. Interviews were taped, transcribed and content analysed to obtain the caregivers' needs. Results confirm that family caregivers provide direct care with little support and assistance. Participants reported restricted activities of daily living and some emotional distress. There were knowledge deficiencies among caregivers relating to the COPD illness trajectory and little awareness of the potential of palliative care. Family caregivers need social and professional support while caring for a patient at home. This would help to ensure that their physical and emotional health does not suffer. There is a need to devise interventions to ensure family caregivers are supported.

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

“…KOAH'lı hastalarla yaşayan ya da onların bakım sorumluluğunu üstlenen bireyler ciddi fiziksel ve duygusal sorunlar yaşamaktadır [20,21]. Pinto ve ark.…”

“…Bu sonucun çalışmaya katılan bireylerin yarıdan fazlasının (%64.2) geniş ailede yaşıyor olması ve kültürel değerlerimizin bir yansıması olarak genellikle kadınların bakım veren olarak algılanmasıyla ilişkili olduğu düşünülebilir. Bakım vericilerin yaş ortalamalarının hastalardan çok daha genç olduğu ve büyük çoğunluğu-nun kadınlardan oluştuğu belirtilmektedir [6,20,21]. Çalışmada yaş ortalaması genç olan bakım vericilerin bakım sorumluluğunu başka biriyle paylaşma oranlarının düşük ve günlük bakım verme sürelerinin ağırlıklı olarak altı saatten uzun olması sonucunun da KOAH'lı bireylerin yaş ortalamalarının (64.43±9.09) yüksek olmasının ve bakım vericilerin hastaların kız çocukları ile gelinlerinden oluşmasının doğal bir sonucu olarak yorumlanabilir.…”

Informal caregivers of patients with COPD: Home Sweet Home?

“…Informal caregivers are of major importance for patients with COPD, as the majority of home care is provided by family and friends instead of healthcare professionals [10]. To date, more than 70% of the COPD patients referred for pulmonary rehabilitation have one or more informal caregivers.…”

“…So, a decrease in hospitalisations can save healthcare costs. Informal caregivers may improve patient adherence [13] and they provide (informal) care at home [10]. Therefore, informal caregiving reduces costs for professional care at home.…”

Clinicians' Views of Educational Interventions for Carers of Patients With Breathlessness Due to Advanced Disease: Findings From an Online Survey

“…The latter identifies carers' anxiety/emotional distress 5,[8][9][10][11][12] , isolation 5,13 , restrictions ,5,8,9,11-14 , lack of support/assistance 5,12,14 , lack of knowledge/strategies, helplessness and powerlessness. 5,12,13 However, the evidence-base for interventions to meet these needs remains limited [15][16][17][18] . Bee et al's systematic review of carers' needs in providing home-based end-of-life care to people with cancer suggests that home-based palliative care services have insufficiently focussed on assisting carers to acquire information and practical skills 19 , whilst Caress et al's review found no studies describing or evaluating interventions to enhance caregiving-capacity for family-carers of COPD patients 20 .…”