Caregiver Intervention and Support for carers of people with brain tumours.
A randomised controlled trial of a supportive educational intervention for caregivers of patients with high grade glioma (Care-IS).
1. An initial telephone assessment of current unmet needs of the caregiver by research nurse. This should take 20 minutes.
2. 7-14 days later there will be a single home visit where the research nurse will provide support and education around the issues that have arisen in the telephone assessment and baseline survey of unmet need. The research nurse will also deliver the information folder specified below. It is expected that these home visits may take 60-90 minutes.
3. Caregivers will be given a tabbed supportive and educational information resource file which is specifically tailored for the caregiver as appropriate for their identified unmet needs. New information will be provided to the caregiver to place in the folder if new unmet needs are identified.
4. Ongoing monthly telephone support and assessment of new needs as they arise. These will commence a month after the delivery of the intervention. These telephone assesments should take about 10 minutes unless prolonged by the participants.
The control group will receive current usual care which is information that is currently freely available and some access to a cancer nurse coordinator with no specific tailoring or extra support.
Experience of caregiving (as measured on the either the preparedness to care, caregiver competence or caregiver strain index - whichever is identified as being most informative in the pilot study). The other tools will be relegated to secondary outcomes if they are feasible.
Monthly for 12 months in the monthly nurse led phone assessment.
This will be self rated once by the care-recipient at baseline.
The caregiver will provide ongoing proxy ratings at baseline, 6 weeks post intervention and at 3, 6, and 12 months.
Fully competent, independent individuals with no mental, cognitive or functional disability and willing to comply with study guidelines.
All participants are informed upfront that this is a randomised trial.
Participants will be identified by clinical staff at neurosurgical, radiation oncology and medical oncology outpatient departments while treating the care-receiver with chemoradiotherapy for high grade glioma. Potential participants will be provided with an information brochure.
Randomisation will take place at the School of Nursing, Midwifery and Paramedicine at Curtin University. Randomisation will be stratified by site. Participants will be informed once randomised.
Simple randomisation using a computer sequence generation.
High grade glioma (HGG) is a term used to encompass grade III anaplastic astrocytomas, oligodendrogliomas and glioblastoma multiforme. This is a rapidly terminal, progressive, and significantly debilitating group of diseases which robs patients of function, cognition, and personality, making this a highly distressing disease for patients, families and carers. In addition to the general cancer related caregiving issues, the impact of the disease on the patients' ability to function leads to reduced quality of life, increased stress and carer burden for their caregiver . The diagnosis of a brain tumour is particularly stressful for carers because the prognosis is dire and life expectancy short. These carers report increased stress and distress levels and decreased quality of life compared to carers of patients with cancers with a good prognosis. There are more than 200 problems and burdens identified by caregivers, which fall under several categories including: physical health problems, social problems and information needs, emotional problems and burdens related to responsibilities and impact on daily life.
Psychosocial interventions for caregivers in a range of situations have been developed with various aims including improving caregiver understanding and ability to care, self-efficacy, quality of life, stress reduction, and improving communication and relationships in the family. There is a paucity of information regarding the role or effect of interventions addressing the unmet needs of caregivers of patients with HGG.
reported significantly more distress than patients (mean 5.1 vs. 4.1; paired t test p=0.01). Caregiver distress was associated with higher scores on the general health questionnaire (r=0.61, p<0.001). The top 5 moderate/high caregiver unmet needs were: 1. accessing prognostic information; 2. accessing financial support and government benefits; 3. accessible hospital parking; 4. impact of caring on usual life; and 5. reducing stress in the patients' life. These preliminary results will be presented in a poster at COSA in November 2012.
The development of our intervention is based on our preliminary data and the identification of several key components including the caregiver's preparedness to care, sense of control, competence, self-efficacy, anxiety, depression and distress, social support, information, a sense of reward, meaningfulness, positive emotions, optimism, respite and relationship with the care-receiver. Our intervention is currently in the development phase and is aimed to cover all these areas. We are seeking support and advice regarding the development of the intervention from a variety of sources including medical oncologists, neurosurgeons, radiation oncologists, palliative care physicians, psychologists, social workers, nurses, experienced representatives from Carers WA and COGNO, as well as consumer representatives. The purpose of this project is to determine the feasibility and efficacy of this supportive-educational intervention for caregivers of patients with HGG.
Halkett, G. K. B., Lobb EA, Miller L, Shaw T, Moorin R, Long A, King A, Clarke J, Fewster S, Nowak AK. (2017) Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma - a Pilot Study. J Cancer Educ. 2017 Feb 11. doi: 10.1007/s13187-017-1175-x.