Caring for the person with cancer: Information and support needs and the role of technology

Abstract

ObjectiveInformal carers experience a variety of information and support needs when providing care to someone with cancer. It is unclear when carers seek information and what resources they access to support themselves throughout the cancer trajectory.MethodsA sample of 45 carers and 15 oncology nurses were recruited to participate in either focus groups or phone interviews.ResultsCarers in the study were more likely to be women (60%), caring for a spouse or partner (64.4%), living with the patient (86.7%), and hold a university degree (46.7%). The majority of oncology nurses were females (66.6%). Findings showed that carers had limited access to adequate information as needs arose. Supports used to address information needs included information booklets, the Internet, and communication with healthcare professionals or with other carers. Barriers in communication between nurses and carers impacted on the adequacy of information received. Participants reported that technology, such as smartphone applications, might be appropriate for improving information and support needs. ConclusionsCaring for someone with cancer is multifaceted. Carers need access to timely information to help them effectively manage patients' needs. Future studies should assess the role of contemporary approaches, such as digital technology, as a solution to the delivery of information and support for carers of people with cancer.

“We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer

“…It is important for culturally-appropriate information to be provided that is targeted to an appropriate level of health literacy [21]. To facilitate care at home, there is a need for greater information and training for carers, as is also found in other studies [35,41]. Some carers are reluctant to ask for help, so it is important for health services to employ a proactive and targeted approach to providing information to carers to suit their particular needs and regular check-ins by health professionals to assess any changes in needs over time.…”

“…To alleviate stress and anxiety, carers in the current study expressed a need for emotional support across different stages of the cancer journey, especially immediately after diagnosis and during periods of prognostic uncertainty, either from allied health workers or other carers who had similar experiences [ 4 , 34 ]. Other common needs identified in the current and previous research related to difficulties accessing practical support (e.g., financial assistance), information needs and assistance navigating the health system [ 35 ].…”

A Smartphone App to Support Carers of People Living With Cancer: A Feasibility and Usability Study

“…We developed the Carer Guide App using a codesign approach to address needs that carers identified in previous research [6,17,18]. A full description of the development process of the Carer Guide App is currently under review.…”

Development of a Smartphone App for Informal Carers of People With Cancer: Processes and Learnings

“…Data from focus groups and phone interviews were transcribed and coded. A qualitative descriptive approach was used to analyze data [30], and the full analysis procedure has been described in more detail elsewhere [31]. Items suggested by carers to be included into a smartphone app were organized into common categories, for example, information about cancer treatment and information about side effects were grouped together under “cancer information.” The frequency of suggestions for app content from carers participating in phone interviews was tallied.…”