Life, Hope and Reality was developed and written by Afaf Girgis, Claire Johnson, and Sylvie Lambert with funding from the NHMRC and Cancer Council NSW. The details of the project are described below.
Needs based access to specialist palliative care services: Development and evaluation of a consumer toolkit
Centre for Health Research and Psycho-oncology, University of Newcastle
Develop and evaluate a Consumer Toolkit to enhance self-care and identification of needs among patients diagnosed with advanced cancer and their families
Purpose of the Project:
The purpose of this project was to develop and evaluate an evidence-based Consumer Toolkit, which includes information on the main concerns or issues faced by individuals with advanced cancer and their caregivers, friends, or family members; strategies to manage these; and health care resources available if additional support needed. In addition, the Toolkit include self-administered needs assessment tools to assist in the identification of needs.
- Develop the Consumer Toolkit:
- Review and summarise existing information resources (e.g., booklets from cancer organisations) and the most up-to-date, scientific evidence available
- Integrate the Palliative Care Needs Assessment Guidelines  to focus on previously identified key areas of needs for patients with advanced cancer and their caregivers, family member, or friends
- Develop a self-administered needs assessment tool for people with advanced cancer and their caregivers to identify levels of unmet needs across a number of domains relating to the patient and primary caregiver
- Identify existing self-administered questionnaire that might optimize identification of needs and communicating these to health care professionals
- Evaluation phase 1: present the pre-test version to a small group of patients, caregivers, and health care professionals for general feedback
- Evaluation phase 2: present the re-worked version to a larger group of patients, caregivers, and health care professionals and evaluate comprehensiveness and usefulness. This includes sending surveys to patients, caregivers, and health care professionals to ascertain the Toolkit’s suitability and usefulness of the content and following up with a face-to-face or telephone interview to elaborate on survey answers.
- Convert Toolkit to web format
- Evaluation phase 3: evaluate use and usefulness of online Toolkit
- Developed Life, Hope, and Reality booklet, which addresses the following concerns and issues: 1) Physical needs (eg, treatment side effects), 2) Emotional well-being (eg, anxiety and depression), 3) Social needs (eg, communicating with family and friends), 4) Lifestyle, 5) Finances (eg, costs and expenses), 6) End of life issues (eg, advanced care planning), 7) The people who care (eg, effects of caring), and 8) Palliative care (eg, what is it?). At the end, we also included self-assessment tools to assist with identification of needs.
- Evaluation phase 1: A preliminary version of the Toolkit was reviewed by researchers or clinicians (n=7) and patients diagnosed with advanced cancer and their caregivers during two focus groups (n total=21). Overall, the Toolkit was rated favourably; however, additional content was proposed. Participants’ comments were integrated and a reworked version of the Toolkit was further evaluated.
- Evaluation phase 2: The revised version of the Toolkit was given to patients (n= 15), caregivers (n=9) and health care professionals (n=14). The preliminary results of the patient and caregiver evaluation support the Toolkit’s comprehensiveness, suitability, credibility, and usefulness. Overall, the Toolkit’s content matched what patients and caregivers would expect of this kind of resource and was found to be more comprehensive than existing resources. In particular, patients and caregivers were satisfied with the practical information included. Some of the benefits of using the Toolkit were increased knowledge, provided reassurance, normalized issues faced, encouraged people to act and be involved in own care, and facilitated discussion about needs and concerns. Health care professionals corroborated these benefits and said they saw themselves using this resource in clinical practice. Following from this success, it was decided to convert the Toolkit into a web-based resource to further increase accessibility for patients and caregivers in rural and remote areas or with limited mobility.
- Convert the Life, Hope, and Reality booklet to a Website: the content of the booklet has been integrated by CareSearch into their website. Visit Life, Hope and Reality.
- Evaluation phase 3: Once released (planned June 2011), this online version will be assessed by means of a brief online survey presented to readers to gauge the suitability and usefulness of this additional method of access.