Supportive care needs of people with brain tumours and their carers

Janda, Monika; Eakin, Elizabeth G.; Bailey, Lucy E.; Walker, David G.; Troy, Kate

doi:10.1007/s00520-006-0074-1

Cited by 131 publications

(160 citation statements)

References 35 publications

(36 reference statements)

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“…FCs report that they feel inadequate when they fail to meet the high standards they set for themselves. Those Information was one of the most important support needs for FCs of cancer patients [60][61][62][63][64][65]. FCs felt they were responsible for gathering information about the disease [61], and described becoming researchers, emphasizing the benefits of and necessity for being informed caregivers [66].…”

Section: Social Problems and The Need For Informationmentioning

confidence: 99%

Review of the literature on the effects of caring for a patient with cancer

2009

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Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience.Methods: This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient.Results: Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified.Conclusion: A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life.

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Section: Social Problems and The Need For Informationmentioning

confidence: 99%

Review of the literature on the effects of caring for a patient with cancer

2009

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“…-Alistair, husband of Harriet (64-year-old woman with glioblastoma multiforme), interview after treatment (time 3) Most patients had a period of stability before their tumours gradually progressed, leading to more debilitating physical symptoms and cognitive decline. The burden of both the disease and its treatment were evident: Sometimes I get a bit tired … I think, the first few [treatments] I didn't really feel it.…”

Section: Dynamic Physical Trajectorymentioning

confidence: 99%

“…In previous research, patients and caregivers have reported anxiety and distress resulting from social isolation, stigmatization, feeling misunderstood and an inability to talk about their feelings or situation. 3,14,15 Both professional and informal social support are central to adapting to illness. 3,16 Patients with glioma have reported lower social support as their disease progressed and their functional abilities deteriorated.…”

Section: Comparison With Other Studiesmentioning

confidence: 99%

“…3,14,15 Both professional and informal social support are central to adapting to illness. 3,16 Patients with glioma have reported lower social support as their disease progressed and their functional abilities deteriorated. 14 Recognizing that a person's desired level of social support may increase with greater need is vital to maximizing such support.…”

Section: Comparison With Other Studiesmentioning

confidence: 99%

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Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study

Cavers

Hacking

Erridge

et al. 2012

CMAJ

110

106

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“…Research indicates that there are high levels of unmet needs among cancer patients; the most prominent relating to the provision of information and psychological support (Gustafson et al, 1993;Foot and Sanson-Fisher, 1995;Meredith et al, 1996;Sanson-Fisher et al, 2000;Janda et al, 2006;Barg et al, 2007). Although such research provides an indication on how to increase quality of care to cancer patients, there has been little quantitative research regarding the specific needs of patients with advanced, incurable cancer, creating uncertainty as to what areas need to be addressed when caring for this vulnerable population group.…”

mentioning

confidence: 99%

The needs of patients with advanced, incurable cancer

Rainbird¹,

et al. 2009

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BACKGROUND: Limited research has investigated the specific needs of patients with advanced incurable cancer. The aim of this study was to describe the prevalence of perceived needs among this population. METHODS: Medical specialists from two regions in New South Wales, Australia, identified patients with advanced, incurable cancer, who were estimated to have a life expectancy of o2 years and were not receiving formal palliative care. Of the 418 eligible patients, 246 (59%) consented to participate. Consenting patients completed the Needs Assessment for Advanced Cancer Patients questionnaire, which has demonstrable validity and reliability. Patients' perceived needs were assessed across the seven domains of the questionnaire: psychological, daily living, medical communication and information, symptom related, social, spiritual and financial needs. RESULTS: Patients identified the greatest areas of need in relation to psychological and medical communication/information domains. Patients' specific needs were highest in dealing with a lack of energy and tiredness, coping with fears about the cancer spreading, and coping with frustration at not being able to do the things they used to do. CONCLUSION: This study indicates that patients with advanced, incurable cancer have high levels of unmet needs, especially in relation to the areas of psychological and medical communication/information needs. The data have the potential to guide the development of interventions aimed at meeting the current unmet needs of patients with advanced, incurable cancer.

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Supportive care needs of people with brain tumours and their carers

Cited by 131 publications

References 35 publications

Review of the literature on the effects of caring for a patient with cancer

Review of the literature on the effects of caring for a patient with cancer

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study

The needs of patients with advanced, incurable cancer

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