Table 4 Quotes taken from the interviews and focus group discussions

Q1

Theme: Addressing needs of persons with PD and their family caregivers

This female with PD is in a phase that we need to make choices for the future. We do not know what she wants and how she think of her end of life…. Now, she has several cognitive problems… shouldn’t these conversations have been introduced earlier in the trajectory when this women was cognitively at a better level? (individual interview, nurse practitioner)

Many people with PD at advanced stage can’t communicate anymore. They can live their life but we can’t communicate on that moment about what they want and what is important for them. (focus group discussion)

Q2

Theme: Addressing needs of persons with PD and their family caregivers

People will stay focused on something like hope. Maybe there are still opportunities that will help them. They try, have new hopes, but also are often disappointed. (focus group interview, occupational therapist)

Speaking about prognosis should be done earlier. You see that if a person goes to a nursing home (...) they often expect that the condition will stabilize. But PD will continue and you need to discuss scenarios before things get worse. (focus group discussion, elderly care physician)

Q3

Theme: Addressing needs of persons with PD and their family caregivers

What I find really difficult is when a family caregiver is too overburdened and puts a patient in a wheelchair for the whole day. As a caregiver said: “At least he doesn’t stand in the way then and cannot fall. The more immobile my husband is the better, that’s easier for me. But it is very emotionally taxing. (focus group discussion, occupational therapist)

When a patient became ill, his partner pushed for a hospital admission. I don’t think that it was what he wanted, or what maybe was best for him. But this partner, she wanted to do something… (focus group discussion, physiotherapist)

Q4

Theme: Disease management

When you get diagnosed with PD, you will in fact fight against the disease. You form an alliance for many years with your specialist too fight for a better quality of life or to remain stable. It is very hard for a specialist to say, I cannot do anything more for you, I have to quit this fight. Telling this to a patient is tough. (individual interview, elderly care physician)

Saying that a patient is in his last month of his life, I think you get different interventions, focusing more on comfort than on treatment. I think we (professionals) feel and think about it, but don’t explicitly say it. (focus group discussion)

Q5

Theme: Disease management

You can have all kind of side effects through increasing the medication doses. For example, clozapine therapy carries a high risk of dizziness and balance problems. Balancing between pros and cons is very difficult. (focus group discussion, elderly care physician)

Parkinson medication is troublesome. It’s hard to judge whether medication is effective or not. Should we give more medication or should we give less medication instead to reduce side effects? Or should we quit trying to improve balance in medication completely?” (focus group discussion, elderly care physician)

Q6

Theme: Professionals need for training

I would never mention the word palliative to a patient. No, that’s not my thing. (individual interview, occupational therapist)

You have to get used to speak about difficult issues. However, you need to persuade yourself to do this and it will eventually get easier. (individual interview, nurse practitioner)

Q7

Theme: Professionals need for training

I think doctors won’t speak in depth about spirituality with their patients. Medical treatment is, of course, our core business and this (spirituality) often is not a subject. I hope also that our PD-nurse pays attention to this. (individual interview, neurologist)

Q8

Theme: Professionals need for training

Well, I won’t speak about dying if I see a patient for only a short time. But when I build a relationship with a patient, it is different. Even when a patient is physically stable, I probe whether they had ever thought of when the situation gets worse. (individual interview, physiotherapist)

A personal relation and connection with a patient is important; sometimes it is a nurse, a physiotherapist, or a cleaner who has known a person for a couple of years. (individual interview, occupational therapist)

Q9

Theme: Connection between services

I am also a member of a palliative care team in our region. The number of referrals for persons with PD is depressingly low. I think that should be different… I know there are many cases and why do they not consult us? (individual interview, elderly care physician)

Q10

Theme: Connection between services

What I often hear, is that there is a need for better coordination by for example a case manager. Especially when a patient comes from a situation of transfers between hospital, rehabilitation centre and home. There are changes in medication regimen, feeding or therapy from a physiotherapist. People do not always know what is agreed upon (focus group discussion)