Carers of patients with a primary malignant brain tumour: Are their information needs being met?

Abstract

Providing care in the home is very demanding, particularly where people withaprimarymalignantbraintumour(PMBT)areconcerned,asthereare physical, cognitive and behavioural alterations that can make significant demandsonfamilycaregivers. Aim: The aim of this article is to consider carers' access to information followingdiagnosisofaPMBTandinformationonmanagingthecaringrole. Method: A grounded theory approach was used, with 22 open-ended interviewscarriedoutwithactivecarersatthetimeoftheinterview. Findings:Carersidentifiedalackofattentiontotheirneedforinformation particularly regarding medication, caring and working, and becoming a carer. They develop strategies such as using the Internet to search for informationandsupportandusingfriendstofilterinformationsotheyare notoverwhelmedwithdepressinginformation.Usingthesestrategies,carers reduceuncertainty,alleviatestressandfindawaytocontinuetohope. Conclusions: Carers lack guidance on how to access information at different stages of the caring journey. However, they are resourceful in findingsupportandinformationandexpecthealthservicestoincludeand signpostthemtothemostappropriatesourcesofinformation.

Development and piloting of a brain tumour-specific question prompt list

“…2011), who may take supportive or independent roles in information seeking, dependent on the patient's cognitive status (Sherwood et al . 2004; Arber et al . 2010).…”

“…Our QPL was developed with the input of patients, carers and health professionals; however, acceptability has only been tested with patients at this stage. Previous studies have found high rates of unmet information needs among carers of brain tumour patients (Janda et al 2008;Parvataneni et al 2011), who may take supportive or independent roles in information seeking, dependent on the patient's cognitive status (Sherwood et al 2004;Arber et al 2010). We thus expect the QPL to be valued by carers, although this must be assessed in future studies.…”

The impact of a high-grade glioma on everyday life: A systematic review from the patient’s and caregiver’s perspective

“…Information about the future is perceived as very important (McConigley et al, 2010;Rosenblum et al, 2009;Salander and Spetz, 2002;Schubart et al, 2008). Caregivers want to know what happens following diagnosis, treatment (Arber et al, 2010b), symptoms (Schubart et al, 2008;) and want accounts of how people had survived the illness (Wideheim et al, 2002). They want information about neurocognitive symptoms, home care after discharge and health care systems (Schubart et al, 2008), and how to provide care (McConigley et al, 2010).…”

“…A lack of information is reported about combining employment and caring, managing finances and benefits, locating support groups, what to expect following neurosurgery and managing medication (Arber et al, 2010b), about how to provide daily care and to manage psychoses and neuropsychiatric problems at home (Sherwood et al, 2004). Yet, even when this information is given, caregivers still feel unprepared to encounter these problems: 'Even though I was fully aware of what to expect by way of changes as (her husband's) tumor progressed, I was still not prepared when those changes began to manifest' (Sherwood et al, 2004).…”

“…A lack of information can lead to uncertainty and feelings of chaos and anxiety . Anxiety and worry make it difficult to retain information (Arber et al, 2010b).…”