Who cares for the carers? carerhelp: development and evaluation of an online resource to support the wellbeing of those caring for family members at the end of their life.

BACKGROUND: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant portion of these carers can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs and information needs can change across the caring period. METHODS: Guided by an Australian National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of key issues and considerations for family carers supporting someone with a terminal illness, a scoping scan of existing online resources, and interviews and focus groups with eighteen carers to understand their needs and context of caring. This information formed the basis for potential digital content. A web project team was established to create the information architecture and content pathways. User testing survey and usability assessment of the CarerHelp Website was undertaken to assess/optimise functionality prior to release. An evaluation process was also devised. RESULTS: The literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping scan of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. The eighteen carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. User testing and usability assessment of the prototype resource led to changes to enhance the user experience and effectiveness of navigation. It also highlighted a lack of awareness of existing resources and the needs of marketing and communication to address this problem. CONCLUSIONS: The project led to the development of an open access online resource, CarerHelp ( www.carerhelp.com.au ), for use by carers and families caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources.

Acceptability of early integration of palliative care in patients with incurable lung cancer.

BACKGROUND: Lung cancer remains the leading cause of cancer death, and it is known many affected will have significant palliative care needs. Evidence suggests that early involvement of palliative care can translate into improvements in quality of care, quality of life, and survival. However, routine early integration is yet to be embraced as standard of care for the majority of patients, and it is unclear what lung cancer clinicians continue to perceive as the barriers to this model of care. METHODS: We performed a qualitative exploration of lung cancer clinicians' perceptions, focusing on current experiences of engaging with palliative care, perceptions of palliative care for patients with lung cancer, and views of barriers and benefits of referring to palliative care. RESULTS: Focus group and targeted interviews were conducted with 28 clinicians, with four key emergent themes: 1) Competence/skill--with referrers needing to be confident in the quality and capability of palliative care provision; 2) Care Coordination--the need to ensure integrated care, with defined lines of responsibility and clear team communication; 3) Ease of referral--the need for ready access to a palliative care provider in the lung cancer clinic; and 4) Perceptions--concerns about loss of hope and fears of negative patient reaction. CONCLUSIONS: Early and routine involvement of palliative care in patients with incurable lung cancer is acceptable to the majority of treating clinicians. To facilitate early integration of palliative care, palliative care providers need to become front-line team members who provide a high-quality service. Lung cancer clinicians need further education as to the role and benefits of early palliative care, and how best to introduce this.