Table 3.

Synthesized findings

Findings	Categories	Synthesized Finding
F3, F4, F5, F6, F8, F9, F10, F23, F26, F31, F32, F33, F39, F42, F45, F46, F94, F100, F114, F116, F146, F148, F164, F165, F166, F181, F201, F215, F217, F218, F220	Tailored information Practical support Complementary therapies Social network Caring healthcare professionals	Perception of what support would have been helpful Caregivers Informal caregivers needed timely access to information and practical support from both their healthcare team and wider social networks. Receiving practical support and targeted information to support self-management for both their loved one with brain cancer and themselves was viewed as essential. It was imperative that healthcare professionals provided family-centred care not only for the patient diagnosed with brain cancer but also for the caregiver as well. Patient Patients diagnosed with brain cancer reported perceived benefit in remote needs–based monitoring healthcare systems with their healthcare professionals. Having the right documented information in their next steps in care and treatment was important, as well as targeted documented probes to ask their care team. Many patients were afraid of the word “palliative care” which compounded their existential distress, but they would have valued an earlier referral as for many this was an inevitable part of the disease course. Patients relied completely on their caregiver and social network for daily living.
F24, F59, F61, F62, F80, F84, F85, F108, F111, F130, F132, F134, F135, F140, F153, F160, F167, F169, F173, F186, F188, F189, F195, F196	Home-based digital monitoring Documented specific probes Early access to palliative care Caregiver Social network
F1, F19, F20, F21, F22, F27, F28, F29, F30, F70, F113, F182, F200, F7, F12, F64, F69, F71, F72, F73, F76, F77, F79, F115, F145, F146, F2, F67, F178, F179, F180, F199, F206, F207, F210, F218, F14, F86, F92, F99, F117, F120, F219, F147, F11, F13, F37, F113, F44, F50, F51, F52, F88, F119, F125, F175, F176, F177, F203, F205, F211, F209, F213, F214, F215, F66, F68, F74, F75, F78, F87, F89, F90, F91, F93, F98, F112, F114, F118, F124, F126, F144, F149, F168, F197, F198, F202, F204, F213, F211, F212	Lack informational support Poor care coordination Lack of social support Caregiver role	Actual experiences of unmet supportive care needs Caregivers Caregivers expressed that they experienced a lack of informational support, advice and care coordination with problems with continuity of care. Caregivers reported that they were poorly, if at all, prepared for the enormity of their caregiver role. Not only did caregivers experience a lack of supportive care within the healthcare system but experienced diminished social support from family and friends overtime. Patients Patients articulated a lack of tailored information and time provided to them during consultations with their healthcare professionals. Patients express frustrations with a lack of general support from their General Practitioners and sub-optimal communication between primary and secondary care providers. Patients expressed unmet physical, psychological and social needs with profound existential distress with little support available to them.
F16, F17, F18, F25, F55, F87, F101, F102, F107, F109, F110, F123, F133, F136, F157, F159, F169, F174, F183, F185, F187, F191, F192, F193, F34, F35, F43, F54, F56, F82, F103, F104, F105, F128, F150, F163, F172, F36, F49, F53, F95, F96, F97, F122, F127, F167, F190, F40, F41, F47, F80, F81, F128, F129, F141, F57, F58, F60, F61, F63, F65, F106, F131, F137, F138, F139, F142, F143, F158, F161, F162, F168, F170, F171, F184, F154, F155, F83, F121, F151, F152, F156, F194	Lack of information Patient–clinician relationship Physical, psychological, social unmet needs Existential distress