Table 2 Quotations and themes

First of all … there is no description or word in our Pacific Island that … describes Palliative Care (Int 5: Hospice Provider)

A matter of context

Perceptions of hospice and palliative services

I heard of hospice before, I really thought it was just the shops you know, where this clothing and things (Int 4: Family Member).

Lack of knowledge

A common myth I’ve seen in our Pacific families is that when you give them morphine (for pain) it’s euthanasia (Int 17: GP)

Misconception

I didn’t understand about it (hospice) until my wife was sick (Int 1: Family Member)

Perception

People close to dying they wait there (Int 27: Key Informant)

Limited information

You shouldn’t take your parents to the hospice but look after them cause you know they’ve looked after you for all this time … don’t leave them alone … to have taking care by other people (Int 4: Family Member)

Family responsibility

Families’ role (Looking after your own)

The younger generation (of Tongans in NZ) …they don’t seem to want to get involved in that whole grandmother, great-grandmother care thing. They’d rather keep their distance

Role of family

I mean hospice is also all the way in Wellington. How can you go back and forth, back and forth when you live out here? Whose got time to do that all the time and spend as much time as you can. Sometimes it’s easier for people to keep them at home and you know because we’re comfortable with that process’

Logistics and location that enhances families’ role

“We didn’t want the staff to tell our dad he had cancer… we wanted to tell him (ourselves) when he was ready … in fact one of the friggen nutritionist came in and she was talking about it … and we hadn’t as a family … yeah it was hard for him” (Int 3: FM).

Role of family in decision making

For me hospice has a more homely environment, you have that bond with the staff … it’s welcoming … is free … we are living in a hotel, a luxury hotel.

Positive shift in views with contact

Experiences with hospice and palliative care services

It’s like eating bacon and eggs every morning

Satisfaction

It felt to me like we’ve got this equipment but we don’t really want to give it to you if you don’t need it…. I know my dad is very sick, very, very sick bar a miracle he’s going to die … it felt like you’re withholding stuff cause you think he’s going to die … So yeah that doesn’t help.

Concerns about suggestions of indifference

I can’t talk too long …Yeah the personal care is ok, (but) I’ve got so many people that I send them away, because it doesn’t suit me and they talk and ask too many questions, and I told them that I can’t talk (due to shortness of breath), and I have listed down there the piece of paper, what they have to do, but still they ask question and I said don’t come back I’ll send for someone.

Sensitivity to specific disease needs

She wants me to lie beside her on the same bed but they can’t provide that. So, she told the nurse ‘Oh, we’re going to go home.

Subtheme: privacy, intimate/emotional needs;

Experiences with hospice and palliative care services:

As soon as we sat down in his home his face just lit up, changed, he wanted to eat, he ate so much and he wanted cups of milo, he said “I’m just so happy to be in my surroundings”.

Subtheme: Need for variations in environment

I don’t want her (hospice staff nurse) to leave. I don’t want her to go back …as she was very comforting and like family (Int 32: Patient)

Facilitation through caring and affection

Continuity of care in the community in the long term.

That’s the danger of us doctors and nurses and pharmacies, we think pills and medicine (Int 7: GP).

Polypharmacy

Sometimes my mum won’t want to take it or our routine gets mixed up because we’re out and maybe she forgets to take it or she just doesn’t want to take it yeah (Int 6: FM)

Inappropriate and burden of multiple medications

“because it takes for so long and they are paid by the head not by the time spent with the person … first, they’re slow in response, two they don’t know what they’re doing and three they forget a lot of things. … and you have to pace it. So they (GPs) try and wing them away from their practice rather than keep them” (Int 16: GP).

Health provider perceived client preferences

as soon as they (hospice support staff) started talking to dad in Samoan, immediately there was a connection, … fantastic but there were no Pacific clinicians, … it would have been quite nice to have someone at the clinical level (Int:30 FM)

Appropriate format and mode of communicating

Information and Communication

“Even though, even though we talk and I say yes, bla bla bla, but maybe there’s something I’m not understood” (Int 22: Patient).

Ensuring adequacy and comprehensive information is delivered

he/she might be working day shifts, (so) you can’t just deal with who is in the room, … know the family and look out for the person who is actually going to lead … everyone else is going to come and go but there’s going to be that one person that takes responsibility. (Int 17: GP).

Establishing connecting with key personnel

“It’s just the caring thing … the main reason why my late wife passed away fast because she fell over there … That’s because of, I don’t know” (Int 1: FM).

The detailed recording and communicating of critical/and medical events