Table 4 Main themes, illustrative quotes, and intervention modifications

Needs and Challenges

 Patients experience physically challenging symptoms that also stress family

“…[patients] can't do a lot of the housework they [used] to do, or even taxi drivers they can't engage in driving…” (HW01)

• Identify cancer symptoms and side effects of treatment that are specific and relevant to the patient, and tailor advice accordingly, so that patients and caregivers know what to expect and how to manage symptoms

• Advise on symptom red flags to look out for and how to seek emergency help

“… some side effects that we (caregivers) wouldn't know how to deal with it… but… you just have to learn as you go along so it is not so easy” (CG03)

 Patients and caregivers experience psycho-emotional struggles

“…[patients] struggle with… loneliness… mental issues, dealing with the sadness, inability to function like they used to, leading to depression” (HW03)

• Provide strategies to help patients and caregiver stay positive

• Provide strategies for open communication between patients and caregivers to address emotion masking

• Promote self-care for caregivers

• Provide list of resources and support to deal with mental health issues

• Advise how to monitor distress and when to seek professional help

“I cannot cry in front of [the patient]…” (CG05)

“…a lot of [caregivers’] time and effort …is all [engaged] with the patient, [caregivers] don't have much time to even care for themselves” (HW01)

“[caregiving information] is all quite medical but not necessary and it's all about external, there's not a lot about how do you handle the emotions when they break down what do you do, nobody give you any guidance on that…” (CG03)

 Psycho-emotional support is often offered too late

“… physical symptoms are more complicated [hence] the priority is [for] the physical symptoms to settle first… that doesn't give you much space and time to deal with the psycho-emotional parts” (HW01)

• Need to identify at-risk population and offer support earlier in disease trajectory

Patient involvement in healthcare decision making

 Preference for decision making (patient-led vs doctor-led vs shared) was varied among participants

“… the family were all called to listen to [the treatment options] and then come to a conclusion…” (CG111 and CG112)

• Identify preferred decision-making model and family dynamics so that advice to patients and caregivers can be tailored accordingly

“…patients who are very independent… want things… to be done [a] certain way… they do not want caregivers to be involved at all” (HW02)

“…[the decision was] still very much geared up to what the doctor thinks is the best thing to do [is]” (CG03)

“… [the doctor] knows best what my condition is… so I just do [the chemotherapy]” (PT04)

 Diagnosis disclosure not culturally appropriate

“[I] rather [not] tell [the patient] the ‘big C word’” because that would be “[taking] away that hope… [of] the chance to cure” (CG109)

• Assess patient and caregiver preferences for disclosure of diagnosis and prognosis

• Check if family are willing for participation in ENABLE

• Focus on content that does not require awareness of advanced cancer stage and/or prognosis

Content of ENABLE

 Advance care planning (ACP) discussions require good rapport

“…[advance care planning] will allow patients to be able to share about their personal values, their beliefs, preferences…” (HW02)

• Bring up ACP later on in the programme, when more rapport has been established

“If you have not build rapport with the patient yet and they are just coming to terms with their diagnosis I think advanced care planning may be just a bit too much to handle cause they don't know where they are headed now… later on maybe after third or fifth follow-up…then it's fine to bring it up…” (HW03)

 Financial matters are a concern for patients and families

“…[patients] are also afraid of… what kind of burden [the illness] has upon the family members, and especially if they are… the sole breadwinner of the family, then who is going to take over the role of getting money for the family…” (HW01)

• Provide information on financial matters and financial aid early on

 Body image and sexuality is an issue for some patients

“I experience this part (changes in sexuality) as well because there was a severe change… for women it can be demoralising… especially those patients that are undergoing let's say breast cancer…” (CG03)

• Provide opportunity to discuss changes in body image, sexuality and fertility

“I feel like this topic … would be a difficult topic for them to talk about…whether will they even be open to discussing that kind of topic with healthcare providers about their relationship with their spouse and how they can you know, kind of regain back their intimacy.” (HW02)

Delivery of ENABLE

 Avenue for asking questions in between sessions

“Maybe there should be a hotline for the patients to call you so when they have any issues, they can actually call the hotline to make some enquiries.” (PT03)

• Give patients and caregivers a point of contact to reach the ENABLE nurse coach

“an email kind of thing where they can, feedback with some questions, if after their consult, their talks, their face-to-face and over the phone. Maybe some, other things might come out for them, so is there another room for them to ask in between those days.” (HW01)

 Frequency and duration of sessions to be kept flexible

“it also depends on the patient himself or herself in terms of the independence mobility … if they … need someone to bring them and whether the caregiver can afford the time as well… for the duration patients might need to be given a break they are very lethargic it might be good to keep it a bit shorter versus patients who can do a bit more.” (HW105)

• Allow flexibility in scheduling of ENABLE sessions

“we have to really do consider just working around with patient's schedule.” (HW02)

 Face-to-face sessions may be more effective

“you can get instant feedback and then you know whether this person is receptive to what you suggest or whether this person has any other questions, that they probably may not say over the phone.” (HW100)

• Conduct the first ENABLE session face-to-face, and allow flexibility for subsequent sessions to be conducted over the phone or face-to-face