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B. Given, G. Wyatt, C. Given, P. Sherwood, A. Gift, D. Devoss, M. Rahbar (2004)
Burden and depression among caregivers of patients with cancer at the end of life.Oncology nursing forum, 31 6
A. Girgis, S. Lambert, C. Lecathelinais (2011)
The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluationPsycho‐Oncology, 20
S Gessler, J Low, E Daniells, R Williams, V Brough, A Tookman (2007)
Screening for distress in cancer patients: is the distress thermometer a valid measure in the UK and does it measure change over time?Psychooncology, 17
Anne Long, G. Halkett, E. Lobb, T. Shaw, E. Hovey, A. Nowak (2016)
Carers of patients with high-grade glioma report high levels of distress, unmet needs, and psychological morbidity during patient chemoradiotherapy.Neuro-oncology practice, 3 2
Anna Ugalde, M. Krishnasamy, P. Schofield (2012)
Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative studySupportive Care in Cancer, 20
P. Hudson, K. Hayman-white (2006)
Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments.Journal of pain and symptom management, 31 3
G. Halkett, E. Lobb, L. Miller, J. Phillips, T. Shaw, R. Moorin, Anne Long, Anne King, Jenny Clarke, Stephanie Fewster, P. Hudson, M. Agar, A. Nowak (2015)
Protocol for the Care-IS Trial: a randomised controlled trial of a supportive educational intervention for carers of patients with high-grade glioma (HGG)BMJ Open, 5
F. Boele, C. Given, B. Given, H. Donovan, R. Schulz, J. Weimer, J. Drappatz, F. Lieberman, P. Sherwood (2017)
Family caregivers' level of mastery predicts survival of patients with glioblastoma: A preliminary reportCancer, 123
P. Craig (2015)
Developing and Evaluating Complex Interventions
M. Janda, S. Steginga, J. Dunn, D. Langbecker, D. Walker, E. Eakin (2008)
Unmet supportive care needs and interest in services among patients with a brain tumour and their carers.Patient education and counseling, 71 2
P Archbold (1992)
Key aspects of elder care
R Harding, S List, E Epiphaniou, H Jones (2012)
How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventionsPalliat Med, 26
G. Halkett, E. Lobb, T. Shaw, M. Sinclair, L. Miller, E. Hovey, A. Nowak (2017)
Distress and psychological morbidity do not reduce over time in carers of patients with high-grade gliomaSupportive Care in Cancer, 25
P. Hudson (2003)
A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative carePalliative and Supportive Care, 1
DR Johnson, DJ Ma, JC Buckner, JE Hammack (2012)
Conditional probability of long-term survival in glioblastoma: a population-based analysisCancer, 118
E. Schildmann, I. Higginson (2011)
Evaluating psycho-educational interventions for informal carers of patients receiving cancer care or palliative care: Strengths and limitations of different study designsPalliative Medicine, 25
P. Hudson, C. Remedios, K. Thomas (2010)
A systematic review of psychosocial interventions for family carers of palliative care patientsBMC Palliative Care, 9
F. Boele, W. Hoeben, Karen Hilverda, J. Lenting, A.-L. Calis, E. Sizoo, E. Collette, J. Heimans, M. Taphoorn, J. Reijneveld, M. Klein (2013)
Enhancing quality of life and mastery of informal caregivers of high-grade glioma patients: a randomized controlled trialJournal of Neuro-Oncology, 111
D. Johnson, D. Ma, J. Buckner, J. Hammack (2012)
Conditional probability of long‐term survival in glioblastomaCancer, 118
B. Robinson (1983)
Validation of a Caregiver Strain Index.Journal of gerontology, 38 3
L. Northouse, M. Katapodi, Lixin Song, Lingling Zhang, D. Mood (2010)
Interventions with Family Caregivers of Cancer Patients: Meta‐Analysis of Randomized TrialsCA: A Cancer Journal for Clinicians, 60
G. Halkett, E. Lobb, L. Oldham, A. Nowak (2010)
The information and support needs of patients diagnosed with High Grade Glioma.Patient education and counseling, 79 1
S. Catt, A. Chalmers, L. Fallowfield (2008)
Psychosocial and supportive-care needs in high-grade glioma.The Lancet. Oncology, 9 9
M. Weitzner, P. Jacobsen, H. Wagner, J. Friedland, Charles Cox (2004)
The Caregiver Quality of Life Index–Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancerQuality of Life Research, 8
S. Gessler, J. Low, E. Daniells, Rachael Williams, V. Brough, A. Tookman, L. Jones (2008)
Screening for distress in cancer patients: is the distress thermometer a valid measure in the UK and does it measure change over time? A prospective validation studyPsycho‐Oncology, 17
A. Collins, C. Lethborg, C. Brand, M. Gold, Gaye Moore, V. Sundararajan, M. Murphy, J. Philip (2013)
The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practicesBMJ Supportive & Palliative Care, 4
A. Pickard, Jeffrey Johnson, D. Feeny, A. Shuaib, K. Carriere, A. Nasser (2004)
Agreement Between Patient and Proxy Assessments of Health-Related Quality of Life After Stroke Using the EQ-5D and Health Utilities IndexStroke: Journal of the American Heart Association, 35
G. Halkett, E. Lobb, M. Rogers, T. Shaw, Anne Long, H. Wheeler, A. Nowak (2015)
Predictors of distress and poorer quality of life in High Grade Glioma patients.Patient education and counseling, 98 4
G. Juarez, B. Ferrell, G. Uman, Y. Podnos, L. Wagman (2008)
Distress and Quality of Life Concerns of Family Caregivers of Patients Undergoing Palliative SurgeryCancer Nursing, 31
S. Goebel, A. Stark, Lea Kaup, M. Harscher, H. Mehdorn (2011)
Distress in patients with newly diagnosed brain tumoursPsycho‐Oncology, 20
K. Gough, P. Hudson (2009)
Psychometric properties of the Hospital Anxiety and Depression Scale in family caregivers of palliative care patients.Journal of pain and symptom management, 37 5
N. Campbell, E. Murray, J. Darbyshire, J. Emery, A. Farmer, F. Griffiths, B. Guthrie, H. Lester, P. Wilson, A. Kinmonth (2007)
Designing and evaluating complex interventions to improve health careBMJ : British Medical Journal, 334
G Halkett, E Lobb, L Oldham, A Nowak (2010)
Information and support needs of patients with high grade gliomaPatient Educ Couns, 79
R. Mcconigley, G. Halkett, E. Lobb, A. Nowak (2010)
Caring for someone with high-grade glioma: a time of rapid change for caregiversPalliative Medicine, 24
Elizabeth Lobb, Elizabeth Lobb, Georgia Halkett, Anna Nowak, Anna Nowak (2011)
Patient and caregiver perceptions of communication of prognosis in high grade gliomaJournal of Neuro-Oncology, 104
The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.
Journal of Cancer Education – Springer Journals
Published: Feb 11, 2017
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