Measuring carer burden in informal carers of patients with long-term conditions

Abstract

Introduction: The aim of this literature review is to identify the most common tools used to measure burden in carers of people with Parkinson's Disease (PD), Heart Failure (HF), Multiple Sclerosis (MS) and Chronic Obstructive Pulmonary Disease (COPD).Method: Databases such as Medline, PsycINFO, CINAHL and Academic SearchComplete were searched. Studies in which carer burden was measured were included.Results: Zarit Burden Inventory and Caregiver Reaction Assessment were most commonly used to measure carer burden, regardless of the chronic condition. A wide range of other instruments were also used. Conclusion: Even though a range of tools are available, further improvements are necessary in order to enable healthcare professionals to identify carers experiencing high burden.

Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation: a systematic review

“…This article extends upon earlier reviews of measures used to assess caregiver impact [2,3,13,14]. We provided an overview of measures used in the last decade to evaluate negative and [177] 1 (low) 0 0 Caregiver Burden Inventory (1989) [150] 3 (moderate-high) 2 (moderate) 0 Caregiver Burden Scale (1996) [130] 3 (high) 1 (high) 0 Caregiver Reaction Assessment (1992) [210] 3 (moderate-high) 2 (very low-moderate) 1 (very low) Caregiver Strain Index (1983) [19] 2 (moderate) 4 (very low-moderate) 0 Modified Caregiver Strain Index (2003) [77] 2 (low-high) 2 (moderate-high) 0 Carer Assessment Scale (1998) [234] 0 0 0 Carer's Assessment of Managing Index (1998) [235] 0 2 (very low-moderate) 0 Modified Pearlin Burden Scale (1990) [170] 0 0 0 Oberst Caregiving Burden Scale (1991) [23] 0 0 0 Positive Aspects of Caregiving Questionnaire (2004) [241] 3 (moderate-high) 0 0 Relative Stress Scale (1982) [84] 2 (low-high) 2 (low-moderate) 0 Revised 15-item Bakas Caregiving Outcomes Scale (2006) [197] 2 (high) 2 (moderate-high) 1 (high) Sense of Competence Questionnaire (1993) [225] 1 (moderate) 2 (moderate-high) 1 (moderate) Zarit Burden Interview (1980) [89] 4 (moderate-high) 2 (moderate) 1 (low) Zarit Burden Interview Short Form (2010) [126] 6 (low-high) 0 0 þ : "sufficient"; ±/?…”

“…Three more recent reviews published in 2012 [2], 2016 [3] and 2017 [14] provide overviews of tools to measure caregivingrelated consequences on health [2,3], quality of life [3] and feelings of burden [14] among caregivers of elderly people [2,3] or of patients with chronic conditions (in this case, Parkinson's Disease, heart failure, Multiple Sclerosis, and Chronic Obstructive Pulmonary Disease) [14]. Although many different scales measuring caregiving impact were described in these reviews, only limited information on the clinimetric properties of these scales was reported.…”

“…Although many different scales measuring caregiving impact were described in these reviews, only limited information on the clinimetric properties of these scales was reported. Users need information about the (dis)advantages and clinimetric properties of the measures to be able to make wellinformed choices [14]. The use of valid and reliable measures is important to reduce the chance that impact of caregiving will be unnoticed.…”

Exploration of the Factor Structure of the Burden Experienced by Individuals Providing End-of-Life Care at Home

“…ZBI originated as a 29-item questionnaire, and later a revised version consisting of 22 items was created [ 9 ]. The 22-item ZBI was designed to measure the burden experienced by caregivers of patients with dementia [ 10 – 12 ], but this scale has also been used in various other settings and for other diseases [ 13 ]. The 22-item ZBI was translated into Japanese (J-ZBI) [ 14 ], and this Japanese version has been used in a number of recent care-burden studies [ 15 – 19 ]; further, it is particularly useful for the evaluation and comparison of care burdens experienced by home caregivers.…”

O impacto de fatores estressores e da sobrecarga em cuidadores informais de pacientes com cirrose

“…Inicialmente esta escala era utilizada apenas para medir a carga de cuidadores de pacientes com demência, mas passou a ser aplicada também em estudos de cuidadores de pacientes com Parkinson, insuficiência cardíaca, doença pulmonar obstrutiva crônica, entre outros 38 . Recebeu algumas críticas por ser utilizada em amostras heterogêneas e pela falta de orientações sobre como as pontuações poderiam ser interpretadas 31 . Dentre seus itens, 8 foram desenvolvidos a partir de uma revisão na literatura de sobrecarga e 16 a partir de uma pesquisa realizada pelos autores da versão original.…”