None listed
Conditions
Brief summary
Families are viewed as a ‘unit of care’ in palliative services, meaning that carers’ needs are identified and addressed in order to further support the welfare of the patient. Practical educational interventions for carers are needed (Bee et al).; however it is not known which educational methods are acceptable and how high-quality information can be delivered at a national level, with limited cost implications. A significant gap in supporting carers is determining how high-quality relevant information can be delivered at a national level, with limited cost implications, using educational methods which are acceptable to carers. This study involves intervention development and an embedded proof of concept study. In this study we aim to: 1. Design an innovative distance-learning educational package (PrECEPt: PalliativE Carers Education Package). Two modules, identified as priorities in the literature (pain and nutrition/hydration), will be developed. 2. Determine ideal content, learning style preferences (e.g. balance of videos/ vignettes/ quizzes), mode of delivery (online/printed), level of detail/complexity. 3. Determine the acceptability and feasibility of the educational package to carer and healthcare professionals 4. To understand the processes involved in delivery of the key components of PrECEPt including: recruitment processes for a full-scale study; data collection procedures/completion rates; queries directed to the hospice from carers involved in the feasibility work. 5. Determine sample size, recruitment and randomisation processes for a definitive trial. We theorise that carer self-efficacy will increase through providing greater information, skills and confidence. We anticipate the education will benefit patients through more competent and supported carers. References Bee, P.E., Barnes, P. & Lucker, K. (2009) A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer. Journal of Clinical Nursing, 18(10), 1379-1393.
Interventions
Feasibility Testing of PrECEPt learning materials by carers
Carers supporting someone with nutrition/hydration and pain management issues will be invited to test PrECEPt, to determine proof of concept for this novel approach to carer education.
PrECEPt is an innovative distance learning package. The package uses blended learning to present two modules (pain, and nutrition/hydration). Written materials including information, reflections and hints/tips are combined with video vignettes which i
Feasibility Testing of PrECEPt learning materials by carers Carers supporting someone with nutrition/hydration and pain management issues will be invited to test PrECEPt, to determine proof of concept for this novel approach to carer education. PrECEPt is an innovative distance learning package. The package uses blended learning to present two modules (pain, and nutrition/hydration). Written materials including information, reflections and hints/tips are combined with video vignettes which illustrate care-giving scenarios, offering practical illustrations of problems and potential solutions. The package embeds three levels of information: basic, moderate and advanced. Caregivers decide themselves how much they wish to engage and at what level with the materials. Carers will be mailed the package and, in the covering letter, encouraged to engage with the materials over a six week period. Data will be gathered on their engagement, to document dose, intensity and amount of engagement.
Sponsors
Australian Catholic University
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Inclusion criteria for the carers taking part in the study: (i) Recognised as the main carer for a patient receiving specialist palliative care (ii) Supporting someone with nutrition/hydration and/or pain management needs (iii) Aged over 18 years, and able to give informed consent (iv) First language is English (v) Patient’s life expectancy >12 weeks (vi) Resident at home (not in residential aged care or receiving end-of-life care as an inpatient).
Exclusion criteria
We will exclude children and/or young people (i.e.<18) people who do not have the capacity to provide informed consent to take part in the research. Advice from the recruiting clinicians will be taken on individuals. We will also exclude people who do not have a good command of the English language, since this is a small proof of concept trial without resource to have the materials translated.
Outcome results
None listed