Of the 11 patients who participated in this study (mean age = 65 yrs old, M= 81.1% and F= 18.9%), 5 resided in an urban location, 4 rural, 1 semi-rural, and 1 sub-urban. Over half of the participants (54.5%) completed their secondary education, while 45.5% obtained higher education.
The IPS measure for information preference (Table II) concluded that the majority of the patients interviewed would “definitely want to know” information if it was made accessible to them. 54.5% of the patients answered “definitely want to know” when asked if they would want to know how long they were expected to live. Information preferences according to the type of information were generally consistent for each participant (i.e. health related preferences were the same as general information preferences) (Table II).
The hypotheses proposed by the research team were used to refine three primary themes developed from the thematic analysis. None of the original hypotheses demonstrated a direct association with any of the primary themes, however, there was overlap between the initial research hypotheses and primary themes/ secondary sub themes identified (Fig. II). Patient and HCP team related factors (i.e. Patient mindset, trust in the HCP team) were hypothesized to contribute to patients’ information needs. This link was confirmed by thematic analysis. Pacing of information delivery emerged as a new theme, however, some of the associated sub themes were also originally proposed as contributing factors by the research team (i.e. continuity of care).
ABILITY→ Patient Related Factors
The data identified that most patients felt they received adequate information regarding their condition and that there were no barriers to accessing information. Patients demonstrated a spectrum of information preferences. One patient described not wanting to know any information about the procedure: “I never, ever wanted to know one thing about the operation. I just did not want to know the gory details. I didn't look it up on Google and I didn't want to talk about it.” (Patient 2) In contrast, another patient chose to conduct independent research: “I am a person who always wants to know all the information.” (Patient 4) The results from the IPS corresponded with these findings.
Patients’ educational background and previous experience within the healthcare system may impact their ability to understand and interpret the information communicated to them. One of the patients stated that they believed that their history of health issues better prepared them for the delivery of information: “I would say the fact that I'd been through major health issues before maybe geared me better to managing the flow of information to and from the various doctors and specialists I was dealing with.”(Patient 10) Other patients also highlighted that their geographical location and proximity to services like support groups impacted access to information: “I didn't know any of that existed especially for people in rural parts like myself.” (patient 9)
Family and external support was discussed by multiple patients: “X” was there, and she wrote down all the information” (patient 6) and “my partner is a retired allied health practitioner and to me that was the key because I didn’t understand the medical terms...I'd never been sick…” (patient 8) There was also a range of patient attitudes demonstrated between interviews. Patients who reported no unanswered questions also demonstrated traits of resilience and positive mindset. One patient stated that “positivity will get you through a lot of it…” with reference to his cancer journey. (patient 8) The patients who reported greater trust in their HCP and MDT also reported that most of their questions were answered. Similarly, those that described a trusting relationship with their HCP believed that they had access to all the information they needed. A patient remarked on his satisfaction: “the oncologist or surgeon told me what was happening and basically told me this is what's wrong and this is what needs to be done.” (patient 8)
Patient willingness to seek clarification was identified as a determinant to information access. A patient who did not seek clarification stated he was unaware that he could ask questions. “It wasn't properly made clear that if you didn't understand it, maybe ask your doctor.” (patient 1) Another patient acknowledged how individual differences could also account for this hesitation. “I know that people might not be as vocal and might not get as much from it, and it's a difficult experience for them.” (patient 8)
OPPORTUNITY→ HCP Team Related Factors and Relationship Development
Patients reported fewer unanswered questions when there was continuity of care, personalised care, and when an HCP was accessible (i.e. phone, text, e-mail, etc.). One patient reported that continuity of care post-treatment was critical to their recovery and access to information. “The follow-up visits with the team were essential for both my mental and physical health.” (patient 6)
Most of the patients reported sufficient continuity of care. One patient described: “anytime I went to Y hospital they sent information over to my other oncologist. I think the X private hospital has the file on computers now anyway, it's an easier method to make sure that your information goes forward and back easily.” In contrast, failed continuity of care caused another patient to feel unsure of next steps. “The physios were in the hospital and they were around to walk me around the wards, but they never actually told me what I was supposed to do or continue to do. I didn't get any sort of information.” (patient 9) In some cases, offering personalised care led to fewer unanswered questions and a more positive experience overall. In one interview, the patient reported that the doctor was accommodating to the patient's personal goal to return to work: “he came back to me the next day and he said, so you want to go back to work...we better start working on that and they gave me all the advice.” (patient 7)
PRIORITY → Pacing of Information Delivery
There were fewer unanswered questions when the information provided to the patient was in terms that the patient could understand. Patients reported a greater sense of understanding when the information was tailored to individual preferences and properly paced with changing information requirements over time.. The volume of information and timing of delivery played a role in whether or not patients were able to adequately interpret the information. “Information overload” impeded some patients from getting answers to their questions.
When discussing barriers to accessing available resources, one patient stated that “if there was one barrier (to accessing available resources) it was my ability to interpret all the information…my ability to interpret and absorb everything.” (patient 1) It was mentioned by another patient that understanding the information that they were provided ensured their compliance with treatment. “I think knowing the information really helps. You're more likely to adhere to the regimen because you understand how important it is.” (patient 4)
Patients were more satisfied when the HCP team ensured that the delivery of information was appropriate in volume and timing. One patient described their HCP approach as “very good, it was clear, it was concise, and the information he gave us was timely. He didn't give us all the bad news at the start.” This patient also reflected positively on his experience stating that the HCP team provided “ just enough (information) to keep me sorted.” (patient 10). In contrast, another patient described: “I felt it was a huge dump of information, I was trying to process it all, you know, and on top of that, trying to deal with the situation emotionally, the fact that you have cancer... you're trying to process it all at the same time.” (patient 1)
Multiple patients reported that face-to-face communication was the most effective method of information delivery. Supplementation of verbal communication with visual and written resources (ie. videos, pamphlets) enhanced patient access to information and bridged gaps in understanding. Social support groups and awareness of these additional resources improved access to information by facilitating the sharing of experiences and information between patients.
Several patients reported that HCPs went above and beyond to ensure that they had access to any information/resources that they needed. Communication among HCPs provided smooth transitions of care and minimized the number of unanswered patient questions. HCP accessibility, specifically a dedicated team member available to patients, provided a constant source of information and open line of communication between patients and their HCP.
Fewer questions were left unanswered when the volume of information and pacing of delivery was timed to suit the individual patient’s needs. HCP consideration for patient information preferences strengthened trust and improved personalization of care.