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

Abstract Objective Informal 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. Methods A sample of 45 carers and 15 oncology nurses were recruited to participate in either focus groups or phone interviews. Results Carers 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. Conclusions Caring 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.

requirement for informal carers in the community. Carers perform a multitude of duties including meeting physical and emotional needs, medication administration, providing transport, and attending medical appointments. 5 These carers are known as "informal carers" as they are not paid for the care they provide and often lack access to information, skills, and resources necessary to provide holistic care to the person with cancer. 6 The information needs of carers have been assessed extensively in the literature. It is common for carers to have unmet needs related to patients' diagnosis, prognosis, physical and psychological impacts of treatment, and how to manage care needs at home. 7,8 While information needs decrease over time, some carers still experience unmet information needs throughout treatment and at the end of treatment. 9 Carers have used a variety of sources to address their unmet needs, most commonly relying on healthcare professionals, family, friends, and the internet. 10 However, current methods of delivering information are often inadequate. Oberoi et al 8 for example found that out of 196 carers, only 33% were certain that they received information on managing patients' symptoms and only 18% were asked by nursing staff if they required more support.
What we know little about is the most efficacious way to deliver information and how support can be provided using more contemporary technology-based approaches. This analysis was undertaken as part of a study in which the overall aim was to explore informal carers' experiences of caring for people with cancer in their own homes, their information needs, adequacy of knowledge received, and the support and services carers used to address their needs, their perceived barriers to accessing support services, and how technology may address carers' needs.
The focus of the analyses reported in this paper was on the information and support sought by carers and how technology may address needs identified. Findings from this paper will inform the development of a smartphone application intervention to address carers' needs.

| Sample
Recruitment continued until saturation of data occurred. Forty-five carers and 15 oncology nurses were recruited from a large public health service, a private health service, and a carer organisation.
Oncology nurses included in the study had completed training in administering and managing the care needs of patients receiving chemotherapy and were providing care to patients of carers who participated in the study. All participants were informed that this research was conducted as part of a PhD project and provided written informed consent.

| Procedure
Carers were approached directly during patients' outpatient chemotherapy appointments or via a carer organisation through email invitations sent by organisation personnel. Oncology nurses were recruited during staff meetings at the participating health services. Participants were given the opportunity to attend 1 of 2 focus groups or, if unavailable, to participate in a phone interview.

| Inclusion criteria
Informal carers were current or recent previous carers of people with cancer (referred to as "the patient") receiving active or palliative treatment. Oncology nurses were working in direct contact with patients and carers over their treatment trajectory in day oncology units.

| Exclusion criteria
Carers aged under 18 years and those with a non-English speaking background who would require interpreters to participate in the study. were asked to describe their experiences, unmet needs, support systems used, and how technology could be incorporated to address their needs. Oncology nurses were asked to explore their perceptions of carers' experiences, challenges, and support services they provided or that were available to carers. Prompts were used to clarify questions and to focus participants on the topics relevant to the research in both the phone interviews and focus groups. Focus groups were conducted within the carer organisation or health facilities but in rooms separate from day oncology units. Phone interviews were conducted when the researcher was in a private room and carers were in a location where they felt comfortable. Field notes were collected during or immediately after focus groups. All interviews and focus groups were audio-recorded and transcribed in full. The list of questions used in focus groups and phone interviews is outlined in Table 1.
Demographic characteristics collected from carers included age, gender, education, relationship to the person with cancer, and living situation.

| DATA ANALYSIS
Audio-recorded data were transcribed verbatim and were coded manually. Coded data were initially organised by separating transcript excerpts verbatim into broad topics with subsequent subtopics that were further organised using a numbering system (coded and organised by NH). Coded data were reviewed by the research team.
Codes were initially separated into groupings according to whether data were collected via focus groups or phone interviews to determine whether the different methods used were affecting the data collected.
No differences in data were detected by the research team and subsequent analyses used combined data; however, carers in the individual phone interviews provided more in-depth descriptions of their experience. Findings from carers were further analysed according to carer status as current or previous carers (by NH); no differences were noted by the research team, and data were combined. The coded data were then analysed using deductive methods of categorising and inductive methods to identify themes (analysis by NH and MB). Data were sorted and stored using Nvivo software and Microsoft Excel.
Demographic characteristics were summarised using descriptive statistics and analysed using SPSS software.

| Findings
Two focus groups were conducted with 12 carers and 2 focus groups with 11 nurses, and an additional 33 carers and 4 nurses participated in phone interviews. Each focus group comprised 4 to 8 participants.
Duration ranged from 74 to 80 minutes for carers and 30 to 55 minutes for nurses. Duration of phone interviews ranged from 20 to 73 minutes for carers and 13 to 56 minutes for nurses.
Reasons for not participating included: unable to be contacted (n = 24, 28%), too busy (n = 19, 22%), not being able to leave patients unattended (n = 12, 14%), not interested (n = 12, 14%), not receiving consent forms (n = 10, 12%), no perceived needs (n = 7, 8%), and illness (n = 2, 2%). Carers were comfortable in raising patients' care needs with healthcare professionals and actively asked questions, but at times, the information received "was not quite as accurate as it should have been" (C10), "confused more than it helped" (C14), inadequate in that "they tend to tell you only what you need to know" (C16), or nonexistent "I mentioned it to the oncologist and he just seemed to ignore me" (C30).
Despite nurses emphasising the availability of telephone support, "we give them our contact number and ask them to call us" (N3), carers were hesitant to inconvenience staff with the many day-today uncertainties they experienced and decisions that had to be made.  Essentially…we find out as we go along, we Google it. (C11) When carers needed immediate assistance however, accessing information on the Internet this way was a barrier to its utility because of the amount and relevance of the information available and difficulty in locating the information required. Carers' ability to seek information online also relied on their knowledge of credible websites available. Many nurses stated that they provided education to carers about using locally based cancer service websites for information; however, they were reluctant to recommend other appropriate resources for carers to access.
Google is our enemy a lot of the time…for the most part it makes I think our job a lot harder, and it makes it harder for them (carers) because they are just hearing a lot of misinformation. (N3) The majority of carers did not recall receiving local cancer service information from healthcare professionals during their caring period. The potential usefulness of mobile technology in the provision of information and support to carers requires further investigation.
Resources to meet the needs of people living in rural and remote locations or carers for whom English is not their primary language also requires investigation as these population groups may have their own unique needs.

| LIMITATIONS
Study limitations need to be considered when interpreting these results. Carers from culturally and linguistically diverse backgrounds who did not have sufficient English language skills were excluded from the study. Carers who speak languages other than English may experience needs not identified in this study. Further, participants were recruited from a similar geographical location in Melbourne Australia, which may limit the generalisability of our findings to carers in regional and rural groups.

| CLINICAL IMPLICATIONS
Carers of patients with cancer experience unmet needs for information and support in the management of day-to-day activities.
Smartphone technology may represent a suitable platform in assisting carers. Researchers, health professionals, carers, and software developers should work together to develop a suitable smartphone application that reflects carer needs to support them in their role throughout the cancer trajectory, from diagnosis through to survivorship, palliative care, or bereavement.