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

Abstract

BackgroundEnd-stage lung disease (ESLD) is a frequent cause of death. What are the differences in the supports needed by caregivers of individuals with ESLD at end of life versus other life-limiting diagnoses?MethodsThe South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey. In 2002, 2003 and 2005-2007, respondents were asked a range of questions about end-of-life care; there were approximately 3000 survey participants annually (participation rate 77.9%). Responses were standardised for the whole population. The families and friends who cared for someone with ESLD were the focus of this analysis. In addition to describing caring, respondents reported additional support that would have been helpful.ResultsOf 1504 deaths reported, 145 (9.6%) were due to ESLD. The ESLD cohort were older than those with other 'expected' causes of death (> 65 years of age; 92.6% versus 70.6%; p < 0.0001) and were less likely to access specialised palliative care services (38.4% versus 61.9%; p < 0.0001). For those with ESLD, the mean caring period was significantly longer at 25 months (standard deviation (SD) 24) than for 'other diagnoses' (15 months; SD 18; p < 0.0001). Domains where additional support would have been useful included physical care, information provision, and emotional and spiritual support.ConclusionsCaregiver needs were similar regardless of the underlying diagnosis although access to palliative care specialist services occurred less often for ESLD patients. This was despite significantly longer periods of time for which care was provided.

The lived experience with idiopathic pulmonary fibrosis: a qualitative study

“…ACP is recommended in COPD [31] and lung cancer [32]. Our findings are similar to a study showing that family caregivers need knowledge about the progression of the disease [33] and supporting practical help, especially administration of oxygen [8].…”

A pragmatic, phase III, multisite, double-blind, placebo-controlled, parallel-arm, dose increment randomised trial of regular, low-dose extended-release morphine for chronic breathlessness: Breathlessness, Exertion And Morphine Sulfate (BEAMS) study protocol

“… 1 2 The burden of this distressing symptom however remains devastatingly high for people who experience it and their caregivers. 3 It is not only a highly feared symptom in those approaching end of life 4 but unlike many other symptoms, breathlessness typically worsens, despite treatment, as death approaches. 5 6 …”

Does the carer support needs assessment tool cover the established support needs of carers of patients with chronic obstructive pulmonary disease? A systematic literature search and narrative review

“…All but one qualitative study used interviews to gather data; 5 , 18 , 27 – 32 , 36 – 39 , 43 , 44 focus groups were utilised in the remaining paper. 33 Quantitative studies were observational, with most being cross-sectional; 34 , 40 – 42 , 46 the one exception to this was Ross and Graydon, 45 who employed case-control. Carers were more likely to be female, with 15 papers either recruiting more women than men or specifically targeting female participants.…”

“…Findings suggest that COPD carers encounter considerable barriers to accessing services. Carers appear to struggle with accessing financial assistance, 5 , 13 , 29 , 32 , 42 – 44 alternative sources of care for the patient, 31 , 34 , 42 support from social services, 13 , 46 adequate specialist healthcare services, 31 spiritual support 40 , 42 and affordable, consistent home help. 18 , 34 , 37 – 39 , 42 , 43 Studies also revealed significant difficulties in accessing equipment and housing adaptations.…”