669922

research-article2016
PMJ0010.1177/0269216316669922Palliative MedicineFox et al.

Original Article

Palliative Medicine

Palliative care for Parkinson’s disease: 1­–8

© The Author(s) 2016
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DOI: 10.1177/0269216316669922

explored through qualitative interview pmj.sagepub.com

Siobhan Fox1, Alison Cashell2, W George Kernohan3,

Marie Lynch4, Ciara McGlade1, Tony O’Brien5, Sean S O’Sullivan6,
Mary J Foley7 and Suzanne Timmons1

Abstract
Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research with
healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some
healthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views of
people with Parkinson’s disease and their carers about palliative care.
Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) to
examine perceptions about/understanding of palliative care.
Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.
Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), across
three Movement Disorder Clinics in the Republic of Ireland.
Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the role
of palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a high
illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later,
with advancing illness. Participants wanted more information about palliative care and especially further supports to address their
psychosocial needs.
Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by
people with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care.
Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.

Keywords
Parkinson disease, caregivers, palliative care, qualitative research, quality of life

What is already known about the topic?

•• An integrated palliative care approach is recommended in all life-limiting diseases, including Parkinson’s disease (PD).
•• People with PD and their families are not currently accessing Specialist Palliative Care services and unmet needs have
been reported.
•• Previous qualitative research has focused on the views of healthcare workers and, to a lesser extent, carers.

1Centre for Gerontology and Rehabilitation, School of Medicine, 6Cork University Hospital, Cork, Ireland
University College Cork, Cork, Ireland 7St Finbarr’s Hospital, Cork, Ireland
2Parkinson’s Association of Ireland, Dublin, Ireland
3Institute of Nursing & Health Research, Ulster University, Corresponding author:
Jordanstown, UK Siobhan Fox, Centre for Gerontology and Rehabilitation, University
4Irish Hospice Foundation, Dublin, Ireland College Cork, St Finbarr’s Hospital, Douglas Road, Cork, T12 XH60,
5Marymount University Hospital & Hospice, Cork University Hospital, Ireland.
and University College Cork, Cork, Ireland Email: s.fox@ucc.ie
2 Palliative Medicine

What this paper adds?

•• An exploration of the palliative care needs of people with Parkinson’s disease, from the perspectives of the people
themselves, and their carers.
•• Contrary to finding stigma or fear, many people with PD and carers were simply unfamiliar with palliative care and would
appreciate any extra support.
•• Key crisis times when extra support may be needed from palliative care are at diagnosis and at advancing illness.

Implications for practice, theory or policy

•• Healthcare workers may overestimate the fear and stigma associated with palliative care and should be mindful of cues
from their patients that they want to discuss palliative or end-of-life issues.
•• A palliative care approach should be adopted by all healthcare workers; formal needs assessments are vital to identify
people with PD who may benefit from referral to Specialist Palliative Care.
•• The provision of palliative care to people with PD requires a multi-professional and integrated approach, with guidelines
required to guide service provision and individual healthcare worker’s practice.

Introduction Table 1.  List of abbreviations.

Parkinson’s disease (PD; see abbreviations Table 1) is the HCW Healthcare worker
second most common neurodegenerative disorder after PD Parkinson’s disease
Alzheimer’s disease.1 PD is life-limiting, with complex PwPD Person/people with Parkinson’s disease
and progressive symptomatology; thus, a palliative care SPC Specialist Palliative Care
approach is appropriate. People with advanced PD share
some symptoms and have an equivalent overall disease impact of diagnosis, including changing social roles,
burden to people with metastatic cancer.2,3 There has financial difficulties and carer strain associated with a
recently been increasing recognition of the palliative care family member developing PD.3,11,12 ‘Information ten-
needs of people with neurological illnesses, nationally4 sion’ was another key theme reported,10 including a lack
and internationally.5 of information around the time of diagnosis, yet also a
All people with Parkinson’s disease (PwPD) would seemingly paradoxical fear of knowledge; many reported
benefit from a palliative care approach throughout their difficulty requesting information from HCW.3,11,13
illness, which involves all healthcare workers (HCWs) Hasson et al.12 examined the end-of-life experiences of
practicing palliative care principles as a core skill. A pro- bereaved family carers of PwPD: they reported a lack of
portion of PwPD may experience more complex needs preparedness for the death of loved ones; many struggled
and will benefit from Specialist Palliative Care (SPC) ser- to cope and felt abandoned and unsupported from health-
vices, whose core activity is the provision of palliative care services. Most had poor knowledge of SPC and few
care to individuals with more complex and demanding accessed these services.
care needs. This approach is recommended in current Other qualitative, non-palliative care research has found
guidelines.6,7 similar themes, for example, the experience of diagnosis as
However, palliative care needs remain largely unmet8 ‘dropping a bomb’,14 and the lack of support for carers.15
and relatively few people are referred to SPC services.9 It is clear from the literature that there is a high disease-
For example, a retrospective review in the United Kingdom related burden in PD16 yet PwPD and families are not being
of PwPD who died in hospital found that only 2.7% had a fully supported within existing healthcare systems from the
documented care planning discussion with a clinician and perspectives of HCWs and carers; notably, this has been
just 13.6% were referred to an SPC team.9 A recent review described across various countries with different healthcare
also noted that palliative services for PD have been slow to systems (e.g. Ireland,8,17 the United Kingdom12,18 and
develop.10 Canada13,19). However, existing qualitative research
Previous qualitative research, conducted with HCWs, involves very small sample sizes,13 and more importantly,
explored palliative care needs in PD from their perspec- little previous research has investigated what PwPD identi-
tive. Less research has been conducted with carers, and fied as their own palliative care and related support needs.
very little with PwPD themselves. This research illus- It is important to conduct research with a patient group20
trated the high disease burden in PD and unmet palliative and PwPD are expert on their own lives and condition.
care needs; it was widely found that PwPD and their fami- Therefore, this research complements our previous
lies have needs and experiences similar to those with met- research with HCW8,17 by adding the voice of PwPD and
astatic cancer.3 Other recurring themes were the emotional their carers.
Fox et al. 3

The primary aim was to explore the palliative care and Table 2.  Interview topics.
related issues affecting PwPD and their families. A sec-
People with PD Carers
ondary aim was to explore participants’ perceptions of pal-
liative care and elicit potential barriers or facilitators to Experience of PD Experience of PD diagnosis
accessing or receiving this care. diagnosis
Information needs Caregiving experience
Psychological needs Information needs
Methods Spiritual needs Psychological needs
Participants Experience of service Spiritual needs
delivery
This study was granted ethical approval by the Clinical Perception of palliative Experience of service delivery
Research Ethics Committee of the Cork teaching hospitals care
(reference number ECM4[ee]/ECM3[s]). Participants were Looking towards the Perception of palliative care
recruited from three movement disorder clinics in Cork, future
Ireland, between June and September 2014, using conveni- Recommendations Looking towards the future
for optimal health
ence and purposeful sampling. Previous research focused
professional support
on advanced PD; however, as palliative care is applicable
  Recommendations for
throughout the course of a life-limiting illness, we included optimal health professional
participants from early to advanced stages of illness. support
Most participants were approached by the primary
researcher (S.F.) face-to-face and informed about the study. PD: Parkinson’s disease.
The following definition of palliative care was read to all participants
Those interested were brought to a private room to read the
during the interviews: ‘Palliative care is used to help manage the medi-
study participant information and consent forms. Those cal symptoms of conditions which we cannot cure and is not only for
choosing to participate could complete the interview that day those with cancer, or who are dying. The symptoms that are managed
or arrange another suitable time. Other participants were include pain, problems with swallowing, shortness of breath, anxiety,
as well as referring to respite and hospital services. Palliative care is
recruited by their neurologist or geriatrician; those interested
focused on improving the overall quality of life of people with an incur-
had their contact details forwarded to the researcher. able disease and their carers’.
Most participants who were approached agreed to par-
ticipate. Those who declined reported feeling tired or
unwell, or not having time. Oral and written consent was Analysis
collected from all participants prior to the interviews. The
The first author (S.F.) conducted all interviews and analy-
demographics of study participants and those who declined
sis, ensuring familiarisation with the data. S.F. is a female
participation were similar for age, sex and PD duration.
researcher with a PhD in psychology and experience of
We planned to recruit 15 carers and 15 PwPD; however,
conducting quantitative and qualitative research in PD.
data saturation was achieved earlier than anticipated in the
S.F. wasn’t known to any of the participants, limiting a
carer group (n = 12) and later in the PD group (n = 19).
personal influence in recruitment. S.F. introduced herself
Where a primary carer was present, PwPD and carers were
given the option to be interviewed as a dyad; six paired as a local University researcher interested in exploring the
interviews were completed. This made it possible to experiences of PwPD and their carers, and their support
explore the topics from different perspectives based on the service and related needs. To identify and minimise poten-
dynamic of dyad or solo interviews. tial bias, a reflexivity diary was logged throughout data
collection and analysis. Interviews were transcribed ver-
batim and analysed using NViVo software, which assisted
Data collection in storage, searching and managing the coding.
Two semi-structured interview schedules were developed Data were analysed and reported according to
based on our previous research8 and existing literature.12 Consolidated Criteria for Reporting Qualitative Research
These were pilot-tested with one PwPD and one carer, and guidelines,21 wherever possible.
minor changes to wording and question order were made.
These interviews were included in the final analysis. The
topic areas are listed in Table 2. As the literature indicated Results
that many people are unfamiliar with palliative care, a Demographics
definition was read to all (see Table 2).
Most interviews lasted 20–40 min and were audio- A total of 31 people participated in 25 interviews: 19
recorded. All interviews took place in a private clinic PwPD and 12 carers. The sample characteristics are shown
room. Written reflections were recorded detailing partici- in Table 3. Interviews were conducted across three
pants’ non-verbal interactions. Participants completed a Movement Disorder Clinics: Clinic A (n = 5), Clinic B
basic demographics questionnaire. (n = 10) and Clinic C (n = 10).
4 Palliative Medicine

Table 3.  Participant characteristics.

N Sex Age Years since Home Relationship between PwPD and carer
diagnosis location

  Male Female M (SD); range M (SD); range Urban Rural Spouse Adult child Sibling No carer (n)
(n) (n) (n) (n) (n) (n) (n)
PwPD 19 13 6 67.9 (8.2); 51–79 7.25 (4.0); 2–14 7 12 10 1 2 6
Carers 12 1 11 68.2 (6.6); 58–78 5.4 (5.4); 0.25–24 6 6 9 1 2 NA

PwPD: people with Parkinson’s disease; SD: standard deviation; NA: not applicable.

Figure 1.  Thematic map illustrating relationships between the themes.

Themes Patient burden. PD clearly affected people physically.

Declining physical health with increased fatigue interfered
Seven themes were identified in the analysis. The theme with people’s ability to complete activities of daily living.
names and the relationships between the themes are rep- One PwPD reported ‘feel[ing] a lot older than what I am’.
resented visually in Figure 1. This diagram highlights the Decreased physical health was one factor directly
key issues faced by PwPD and their carers and how affecting mental health. One carer identified depression as
sometimes the needs of the PwPD and carer overlap and ‘part-and-parcel’ of PD. Motivation loss was common
at other times they experience unique needs. The diagram throughout the illness. Participants spoke about the impact
also highlights that palliative care (both ‘generalist’, i.e. of non-motor symptoms:
a palliative care approach adopted by all HCW, or ‘spe-
cialist’ i.e. provided by a trained specialist in Palliative I get up in the morning and just kinda say to myself ‘God
Medicine) can have a role in addressing all of these almighty, the start of another day’ … I feel tired, I feel kinda
needs, at every stage of illness. tired the whole time, and I feel ‘how am I going to get through
the day [sic.]’. (PwPD 2)
High disease burden
and how psychological distress may go unnoticed:
This theme refers to the significant challenges of manag-
ing the physical and psychological effects of PD on both you might look ok from the outside but on the inside we are
the person and their carer. suffering away in our own way. (PwPD 18)
Fox et al. 5

Advancing illness impacted participants’ social lives. PwPD and carers were sometimes unsure of what ser-
Some were embarrassed by their tremor or worried that vices or supports were available and/or didn’t know how
it would worsen with people watching them. PwPD to access these. Most who were experiencing advanced
withdrew from social engagements: disease highlighted the importance of having sufficient
and timely information to adapt homes, contact relevant
‘I don’t go out as much because I get tired way earlier in the services and prepare emotionally.
night and I might be spoiling other people’s nights, so I just Support needs were very individual. For example, many
come home early’ (PwPD 19). people greatly valued patient and/or carer support groups;
for others, attending such groups caused anxiety when see-
Some felt that they couldn’t complain to friends as ing others with more advanced illness:
they might ‘bore’ them and ‘drive them away’.
Overall, loss of independence and mobility were cited We met some very nice people, they are all in the same boat,
as the biggest impacting factors on quality of life. and [by comparison with other’s in the support group] I seem
to be coping fairly well. (PwPD 15)
Carer burden.  Carers, themselves often elderly and/or ill,
experienced significant financial, physical and emotional Witnessing people who had more advanced Parkinson’s than
myself, I find that quite disturbing. (PwPD 14)
caregiving burden. Some carers felt guilt acknowledging
this burden:
Informal family support was viewed as very impor-
I know that is selfish but [I would like] some time off, not tant. Participants agreed that PwPD living alone would
every weekend but maybe the odd weekend just to have time need greater formal supports, such as regular nurse visits.
and not feel guilty. (Carer 8) PwPD living alone admitted more vulnerability to depres-
sion as they have ‘too much time to think’ (PwPD 1).
Carers experienced social isolation as the PwPD Overall, PwPD and their carers wanted to have different
became more dependant and required full-time care. information and support options to suit individual prefer-
Carers faced complex psychosocial issues. For example, ence and illness stage, as no ‘one-size-fits-all’.
the bereavement process may start before the PwPD’s
death as carers grieve the loss to a nursing home or loss of
Crisis times needing extra support
their loved one’s personality.
Crisis at diagnosis. This theme related to the feelings of
‘What I miss would be his personality; he was a very chatty grief, depression, uncertainty and hopelessness at the time
man, now he’s quiet’ (Carer 1). of diagnosis. For many, the diagnosis was a prolonged,
stressful process. A lack of previous knowledge about PD
Information and support needs: no ‘one-size- meant that many thought they had been given a ‘death sen-
tence’: ‘I immediately classified Parkinson’s as “Parkin-
fits-all’ son’s, multiple sclerosis, cancer,” they were all the same,
There was an overall lack of information at diagnosis. they all wiped you out’ (PwPD 15). Carers with experi-
Some participants were missing basic information about ence of PD were aware of the serious implications of the
PD, even to know that it is incurable. Some participants diagnosis, ‘we never in our darkest days thought X would
would have liked all of the information up front to prepare get it. Never, ever, ever’ (Carer 3).
for advanced illness: Some PwPD coped initially by ‘living in hope’ for a
cure; however, many also admitted that they were ‘burying
I wanted to know, what I wanted to ask … is there a progression, their head in the sand’ (PwPD 14). Carers more often con-
is there a time scale … some people mightn’t want to know sidered the reality of the incurable disease: ‘do you think
about that at all, but I would prefer to know, so you can deal he will need more care in the years to come?’ (Carer 6).
with it then, and you can be prepared for it. (PwPD 10)
Crisis at advancing illness. This theme related to the many
Others preferred to ‘live day-to-day’. Participants sug- challenges faced by both carers and PwPD as the illness pro-
gested that information should be tailored to individuals, gresses. PwPD faced the reality of their illness at this stage:
depending on their illness stage and mind-set; available
in many formats, including printed, online, phone sup- [you get] a realisation that Parkinson’s is a serious thing and
port, DVD, seminar and leaflets. People who had used there is no cure and you see yourself going downhill every
the phone support service of the Parkinson’s Association day, that’s sometimes difficult to take. (PwPD 7)
of Ireland to speak with a PD nurse found it helpful for
general information or clarifying information that they Many carers were unprepared for advanced illness and
heard elsewhere. their partner’s high support needs, as they had often been
6 Palliative Medicine

told ‘you don’t die from Parkinson’s’. Carers found it dif- ‘I don’t want to be kept alive because I am alive; I want to be
ficult making tough decisions about the care of their loved kept alive because I want to be alive’ (PwPD 14).
one and would value support:
Another man who had lived with PD for 24 years was
I found it difficult making the right call, whether to call the very comfortable discussing death and dying:
doctor or to take him in [to hospital], judging whether he was
going to be ok, things like that. When you have no experience, ‘I have a few friends who died … and again they are not
when you are going through it for the first time and you are different because they are dying, it is a natural thing, and then
trying to find your feet, I found that very stressful. (Carer 8) hopefully they are not in pain, and quality of life is a big thing’
(PwPD 7).
Most carers wanted to care for the person at home and
felt guilt and despair when that was no longer possible or Similar to the ‘no “one-size-fits-all” theme’, discus-
preferential. sions around advanced care planning need to be delivered
at a time when the individual person/couple is ready; par-
ticipants felt that this would change depending on age, per-
Experience of healthcare services: feeling sonality and disease stage.
unsupported
Limited and sporadic contact with healthcare teams left Perceptions of palliative care.  Many participants were unfa-
some PwPD and carers feeling ‘alone’ facing their illness; miliar with the term palliative care, others misunderstood
PD is ‘a one-man show, and anything I got I got it myself’ it as ‘home help’ or ‘counselling’, or thought that it was
(PwPD 7). Participants felt unsupported when meeting dif- only available to people with a cancer diagnosis:
ferent HCWs at every clinic or hospital visit and felt that
support ‘dropped off’ when they returned home following I have [heard of palliative care], they are attached to X
Hospital but I don’t know about them, but they are for cancer
a hospital or respite stay. Many participants perceived that
patients I know that, but whether they apply to [PD], I suppose
their doctor was only interested in their medication needs,
they probably do I don’t know. (Carer 5)
overlooking social and psychological needs which were
often more distressing.
Those who had previous experience of SPC nurses,
Poor cohesion between services, and uncertainty about
often during the death of a relative, all reported positive
the available support services caused frustration for par-
experiences: ‘they are fantastic people’ (PwPD 14).
ticipants, impinging on carers’ ability to care for the PwPD:
When the role of SPC in symptom control was
explained, most people felt that they would benefit from
The doctor, he promised us everything, he promised us loads
of home help, it isn’t available, it just isn’t available, we were
this support. Carers were interested in a service which
actually very very lucky to even get the one hour five days a would include them in the unit of care. Participants experi-
week, that’s what we were told and there was never a question encing advanced illness welcomed any specialised sup-
of coming in again during the day, that was never going to port, including help with anxiety, breathlessness, fatigue or
happen. (Carer 8) other issues affecting quality of life. Participants experi-
encing advanced illness stages were pragmatic about their
needs and welcomed any supports that would decrease
Experience and perceptions of palliative care burden.
Advance care planning.  This theme relates to planning for
the future, an emotive topic for all participants. All partici-
Discussion
pants worried about the future to some extent. However,
some with early-stage illness didn’t want to think about the Increasing attention is being paid to the need for palliative
future, hoping that a cure would come in time for them: care for neurological illnesses, including PD. This study
adds to the literature by directly asking PwPD and their
‘you just have to wait and hope they get a cure in time’ carers about their support needs and eliciting their percep-
(PwPD 18). tions of palliative care. Past research has largely relied on
the experiences of HCWs or carers only, omitting the
These people felt that advance care planning may be too PwPD’s voice.
depressing. It was evident in these interviews that the holistic and
However, those living with more advanced illness, person-centred approach of palliative care could poten-
when medications were becoming less effective, were tially help to alleviate the complex burden experienced by
more open to discussions about the future. Some PwPD PwPD and their carers. In the opinion of these participants,
living with advanced illness had already given a lot of pri- their care focused on the management of motor symptoms
vate thought to care directives: and medication, with little or no psychological support.
Fox et al. 7

Past research has highlighted the importance of non-motor participants who exhibited this ‘fear’ of palliative care.
symptoms to quality of life and health status in PD.16 Thus, Many were simply unfamiliar with the term, and most
a palliative care approach which considers the holistic or PwPD in later disease stages were open to any supports
bio-psycho-social model of illness is needed, in contrast to that may improve their quality of life.
the dated ‘medical-model’. As Hudson et al.3 noted, the
psychological support offered to PwPD and families in
Limitations
response to feelings of loss and fear of the future, a com-
mon part of palliative care practice, would help in support- The authors acknowledge that this research is based on a
ing the PwPD and their carer, and the complex grieving limited qualitative sample. While effort was made to
processes reported in this study. reach a varied sample of participants in urban and rural
Similar to previous international research with carers settings, attending three different clinics, and at different
which reported ‘fragmented and patchy’ access to social stages of illness, no claim to generalisability of the find-
and healthcare services,12,17 PwPD, as well as carers in this ings is made. However, the current results add to the lit-
study, often experienced disjointed support from the erature the experiences and perceptions of PwPD, and
healthcare system. PwPD without a formal carer may be their current carers, about palliative care. A single author
particularly vulnerable; they may be less likely to seek for- completed the data analysis; however; the analyst is
mal supports (often difficult and frustrating to access), a experienced in methods of qualitative analysis, and we
task often carried out by carers. ensured a robust research process through establishment
Past research with HCW highlighted their uncertainty of a project steering group which oversaw all stages of
about the appropriateness and timing of palliative care the research.
interventions, resulting in unmet needs.17 Key ‘crisis
times’ for extra support and/or SPC involvement were
Recommendations
identified, namely, at diagnosis and at advancing illness.
PwPD and carers would further benefit from all HCW The following recommendations are made based on the
adopting a palliative approach to their care at all stages, current results and in light of previous literature.
focusing on psychological and other non-motor issues.
Regarding advance care planning, PwPD and carers dif- Clinical.  HCW should be mindful of cues from patients
fered in preparedness for this discussion, but notably a that they want to discuss palliative or end-of-life issues;
sizeable portion would like to have these discussions soon HCW may underestimate PwPD and family’s need for
after diagnosis. This is in line with past survey research frank discussion and overestimate the stigma associated
which showed that 21% of PwPD would like early discus- with palliative care. The delivery of information should,
sion about end-of-life planning and 27% about end-of-life however, be tailored to the individual PwPD and/or
care options such as hospice.22 carer.
As in past research,3,11,13 a lack of information was Participants in this study experienced fragmented sup-
highlighted; many participants had limited information port from the healthcare system. The provision of pallia-
about PD. This was problematic for many reasons, for tive care to PwPD requires a multi-professional and
example, many didn’t realise that their non-motor symp- integrated approach, with effective communication
toms may be attributable to their PD, and didn’t seek between HCW.
help from their specialist, even when in great distress.
This study also uniquely adds to the previous discussion Research.  It is becoming widely accepted that PwPD and
using both solo and dyad interview structures which their families would benefit from a palliative care
highlighted the differences in what information PwPD approach supplemented by SPC, and the specific areas in
and carers want, how they want this to be delivered and which they most require support have been outlined.
by whom. Notably, carers were lacking information Future research should focus on developing, implement-
about coping with advanced disease and were unpre- ing and evaluating palliative care supportive interven-
pared for this burden. Goy et al.19 also noted unprepared- tions. Research looking at cost-effectiveness will be
ness for their loved ones’ death in PD. Information given important. The public/patients should be involved in all
to the carer must be balanced, however, with the PwPD’s stages of research.
readiness to accept information, and they may prefer to
receive this information more slowly. Policy.  SPC should be offered on a needs basis; currently,
A common theme in previous research with HCW was there are some PwPD and their carers who need these ser-
their perception of the fear and stigma associated with pal- vices, yet are not accessing them. The introduction of evi-
liative care in the minds of PwPD and carers, which inhib- dence-based guidelines for palliative care in PD would
ited HCW in discussing these issues with their patients improve HCW confidence in supporting PwPD and
with PD.8,17,18 However, the current results revealed few improve referral to SPC where needed.
8 Palliative Medicine

Conclusion Report-of-the-National-Advisory-Committee-on-Palliative-
Care-2001.pdf
PwPD and their carers experienced complex physical and 8. Fox S, Gannon E, Cashell A, et al. Survey of health care
psychosocial symptoms and could benefit from their HCW workers suggests unmet palliative care needs in Parkinson’s
adopting a holistic palliative care approach to their care. disease. Mov Disord Clin Pract 2015; 2: 142–148.
Most PwPD’s ‘palliative care’ needs are addressable within 9. Walker RW, Churm D, Dewhurst F, et al. Palliative care in
existing disease management programmes. Accurate and people with idiopathic Parkinson’s disease who die in hos-
responsive needs assessments are important to involve pital. BMJ Support Palliat Care 2014; 4: 64–67.
SPC when needs become complicated and outside the 10. Richfield EW, Jones EJ and Alty JE. Palliative care for
Parkinson’s disease: a summary of the evidence and future
scope of the primary care team. As many PwPD and carers
directions. Palliat Med 2013; 27: 805–810.
are unfamiliar with palliative care, further education is 11. McLaughlin D, Hasson F, Kernohan WG, et al. Living and
essential so that they can access these services as needed. coping with Parkinson’s disease: perceptions of informal
carers. Palliat Med 2011; 25: 177–182.
Declaration of conflicting interests 12. Hasson F, Kernohan WG, McLaughlin M, et al. An explora-
The author(s) declared no potential conflicts of interest with respect tion into the palliative and end-of-life experiences of carers
to the research, authorship and/or publication of this article. of people with Parkinson’s disease. Palliat Med 2010; 24:
731–736.
Funding 13. Giles S and Miyasaki J. Palliative stage Parkinson’s dis-
ease: patient and family experiences of health-care services.
The author(s) disclosed receipt of the following financial support
Palliat Med 2009; 23: 120–125.
for the research, authorship and/or publication of this article:
14. Phillips LJ. Dropping the bomb: the experience of being
This research was supported by a grant from the Irish Hospice
diagnosed with Parkinson’s disease. Geriatr Nurs 2006; 27:
Foundation.
362–369.
15. Birgersson A-MB and Edberg A-K. Being in the light or
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