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REVIEW ARTICLE

Patient participation in mental health care – perspectives of healthcare professionals: an integrative review

Kim Jørgensen RN, MNsc, PhD Student (Senior Lecturer)1 and Jacob Dahl Rendtorff Dr scient adm (Doctor Scientiarum Administrationis) PhD, Mag art & Diplom Pol (Senior Associate Professor)2

1 The Department of Nursing, University College Capital, Hilleroed, Denmark and

2 Department of Social Sciences and Business, Roskilde

University, Roskilde, Denmark

Scand J Caring Sci; 2018; 32; 490–501

Patient participation in mental health care –

perspectives of healthcare professionals: an

integrative review

Background: In contemporary Western liberal society,

patient participation has become a key goal in psychiatric

healthcare treatment. Health professionals must encour-

age patients to play an active and involved part in their

treatment. According to Danish health law, patients have

the right to participate in their treatment, and the mental

health system therefore needs to be reformed in order to

ensure that treatment is based on individual, liberal, val-

ues. However, patient participation is not clearly defined,

and it is therefore a challenge to transfer it to clinical

practice.

Aims: This integrative review’s aims are to explore how

professionals perceive the challenges regarding patient

participation in the treatment course in mental health

care.

Design: An integrative review.

Findings: Seven studies met the inclusion criteria: six

employed qualitative methodologies and one utilised a

mixed-methods approach. The empirical studies took

place in Norway, the UK and Australia, all in a mental

health setting. Three themes were identified: ‘Patient par-

ticipation as collaboration between the healthcare profes-

sional and patient’, ‘Challenges to participation’ and

‘From a professional’s perspective – what expectations do

patients have when participating in decision-making?’

Conclusion: Different synonymous terms describing the

patient’s active role during treatment – user participation,

collaboration, partnership, user involvement and patient

participation – are linked to a recovery-oriented

approach, shared decision-making, shared ownership and

care plans. This integrative review achieves specific

knowledge around patient participation, comparing the

situation for adult patients with various mental disorders.

However, upon reflecting on the included studies, patient

participation is not clearly defined, and it is therefore dif-

ficult to transfer it to clinical practice.

Keywords: patient participation, mental health con-

sumer, mental health nurse, partnership, collaboration,

user involvement, mental health services, inpatients, per-

son-centred care, shared decision-making and integrative

review.

Submitted 29 August 2017, Accepted 3 September 2017

Introduction

In Denmark, as in other Western countries, patient par-

ticipation is one of the most common areas of focus in

the healthcare debate. According to healthcare policy,

patient participation is presented as a stated objective,

with legal requirements for healthcare professionals to

ensure that patients systematically participate within

their course of care and treatment, from start to finish (1,

2). Patient participation is seen as something positive,

which is substantiated by the fact that it improves quality

of life and provides patients with an increased sense of

ownership and management of their symptoms, their ill-

ness and their situation, giving them a sense of control

and self-determination. Moreover, it also improves treat-

ment processes (3) and quality of care (4, 5), and it is

argued that it leads to more effective services, implying

economic benefits (6). Finally, it is argued that patient

participation can reduce adverse incidents as the patient

becomes the watchdog of their own care, taking precau-

tionary measures against flaws in a pressured healthcare

system (7).

In the literature, it is not clear what is meant by ‘pa-

tient participation’, and several discourses on patient par-

ticipation exist simultaneously (2, 8). Terms including

Correspondence to:

Kim Jørgensen, The Department of Nursing, University College

Capital, Carlsbergvej 14, 3400 Hilleroed, Denmark.

E-mail: [email protected]

doi: 10.1111/scs.12531

http://orcid.org/0000-0001-9362-7600

patient participation, mental health consumer, partner-

ship, collaboration, user involvement, mental health ser-

vices, person-centred care and shared decision-making

are used, in combination with terms such as patients, cit-

izens, clients and service users (6, 7, 9–13). For the pur-

pose of clarity, we use the term ‘patient’ to refer to users,

and ‘participation’ to refer to active participation in the

healthcare process.

It seems inevitable that different understandings of

patient participation challenge healthcare professionals,

patients and their relatives. The definition is vague and

has different meanings depending on one’s perspective,

which makes the degree of participation in the treatment

difficult to distinguish or even achieve (6). Healthcare

professionals are expected to promote the patient’s self-

development, and to ensure that there are opportunities

available for the patient to solve his or her own prob-

lems. Patients are expected to take responsibility for their

situation and state of health, preferably with the support

of their relatives (14–19). This lack of clarification means

that healthcare professionals – across sectors, organisa-

tions or institutions – and patients, clients, citizens and

service users, along with other stakeholders, each repre-

sent their own legitimate perspectives on patient partici-

pation (8, 20–22). As a consequence, healthcare

professionals may practise patient participation based on

a variety of solicitous convictions concerning what

patient participation means and how it is best practised.

If the patients are to be offered equal access to participa-

tion in their own care and treatment (18, 23), this legit-

imises an exploration of how professionals perceive the

challenges when patients must participate in their treat-

ment course in mental health care.

In this study, the focus on mental health care is partly

due to the realisation that people with mental illnesses

constitute a marginalised and neglected group in health-

care policy, management and society (24). This is par-

tially because people with a mental illness are already

‘exposed’ individuals, and their abilities for self-determi-

nation are limited and changeable depending on their

symptoms and resources (25, 26). Accordingly, their abil-

ity to achieve patient participation appears challenged.

The aim of this study was to explore how professionals

perceive the challenges of involving patients in the men-

tal health care.

Methodological considerations

An integrative review is a meta-synthesis that provides a

broad description of research findings, thus ensuring a

wide range of sources regarding patient participation in

psychiatric treatment (27).

This review was guided by Whittemore and Knafl’s

(27) integrative review framework, to enhance rigour.

An integrative review is an approach that renders it

possible to include various methods (i.e., experimental

and nonexperimental research). It contributes to the pre-

sentation of different perspectives of a phenomenon and

has been recommended as being essential for nursing

science and nursing practice. Therefore, in this review,

the integrative review method is used to explore the

qualitative and mixed studies.

An integrative literature search was performed across

several electronic databases: MEDLINE (PubMed),

CINAHL, PsycINFO and SwedMed+. It included articles

published between January 2001 and December 2016.

January 2001 was chosen as a starting point after rele-

vant articles published in 2001 were found.

For CINAHL, the keywords ‘consumer participation’

OR ‘patient participation’ were used, and these keywords

were adapted to the specific thesaurus of each database:

MEDLINE: ‘patient participation’ or ‘patient involved’ or

‘patient consumer’; PsycINFO: ‘client participation’;

SwedMed+: ‘consumer participation’ or ‘patient participa-

tion’. The following keywords were used to define the

search context: ‘nurses’ or ‘staff nurses’ and ‘mental

healthcare’ or ‘psychiatry’. The keywords were selected

for a number of reasons: to suit the purposes of the

review and after looking at existing research using partic-

ipation, or based on synonyms and available database

index lists.

Limiters: (Date of publication: 2001–2016; English lan-

guage. Narrowed by subject age: all adult).

With the aim of including all relevant publications,

searches were carried out based on the authors’ names or

the articles’ titles. In addition, the reference lists of the

retrieved articles were scanned for relevant publications.

Sample and inclusion/exclusion criteria

Consideration was given to searching for articles that could

provide clarity to the consideration of when patients

should participate in their treatment course in mental

health care. To achieve a nuanced understanding of these

challenges, qualitative articles were included. A prior

search of the literature revealed limited studies where

nurses and other health professionals had been inter-

viewed regarding this objective; therefore, the search was

supplemented with other studies that could clarify views

on the topic of patient participation from a professionals’

perspective, from nurses and other health professionals.

The search was focused on the nurses and other health

professionals’ perceptions of the challenges with patient

participation, related to the treatment of adults in mental

health care. This included studies from a mental health-

care perspective in a mental health hospital setting.

The keyword search in the electronic database pro-

vided 725 articles. Following the rejection of duplicate

papers, a total of 655 potential scientific papers were

identified, of which 612 were excluded on the basis of

Patient Participation in mental healthcare 491

the year published and after reading the abstract and

title. A further 36 papers were excluded after reading the

full text. Most of the papers were excluded because of

the reported randomised controlled trial and intervention

studies aiming to test interventions for patient participa-

tion. In addition, reports were excluded if patient partici-

pation was discussed in terms of healthcare systems (i.e.,

integrating a new policy or procedure into the work-

place) or healthcare education (i.e., integrating theory

and research into practice). Additionally, unpublished

manuscripts (i.e., abstracts or dissertations) were

excluded. Finally, only full-text, peer-reviewed studies

that were published in English between January 2001

and December 2016 were included. Seven papers meet

the review’s objective and were selected in the final

review. Figure 1 shows the ‘PRISMA Flow Diagram’ for

the scientific literature results (27).

Literature search

The computerised databases were selected because they

contained numerous qualitative articles that offered a

comprehensive and appropriate insight into the topic.

The search process followed Whittemore’s phases for an

integrative review (27).

The first phase focused on the phenomenon of interest,

and terms used synonymously for patient participation

were searched. In phase two, the search was aimed at

mental health, psychiatry, mental health associations and

psychiatric nursing. In phase three, the first and second

phases were combined in further searches. In the fourth

and final phase, the sample was restricted by year pub-

lished, language, age of patients participating and full-

text studies (Table 1).

Searching accomplished by the four databases was sup-

ported by mesh terms/subject headings.

The second search strategy was to chain search articles

to find previously unidentified relevant literature.

We have worked independently and reviewed the

abstracts of all of the articles resulting from the search on

the predefined criteria. In cases of uncertainty over

whether to include the articles, articles were deemed eli-

gible for further inspection.

Search outcome

The systematic search process resulted in seven selected

articles that meet the inclusion criteria (Fig. 1). The

selection of the articles was discussed with another

healthcare researcher. The reference lists of the retrieved

Id en

tif ic

at io

n Sc

re en

in g

El ig

ib ili

ty In

cl ud

Records identified through database search

N = 725

Records after duplicates removed N = 655

Records excluded N = 612

Records screened N = 655

Full-text articles assessed for eligibility

N = 43

Full-text articles excluded, with reasons

N = 36

Studies included in the integrative review

N = 7

Figure 1 Prism Flow chart. The flow chart

shows the search strategies and the

exclusion criteria used to locate the relevant

scientific studies in this review (28).

492 K. Jørgensen, J.D. Rendtorff

articles were also searched by the authors of this paper

(rather than by computer), to check whether earlier

searching had excluded relevant literature (28).

Data extraction and evaluation

The selected articles are presented in a table consisting of

author, study design, setting and sample, findings and

comments (Table 2). The validity and reliability of the

selected articles were evaluated using the assessment tool

CASP (29), which is a critical approach designed for read-

ing research publications. This includes tools for System-

atic Reviews, Randomised Controlled Trials, Cohort

Studies, Case Control Studies, Economic Evaluations,

Diagnostic Studies, Qualitative studies and the Clinical

Prediction Rule (29).

Data analysis

We used a thematic synthesis to analyse and synthesise

the findings of the included studies, using Kvales’ work

as a guide (30). We used an inductive coding process;

each article was scrutinised line by line and across the

articles. The encodings led to broad categories, which

formed the basis of a meta-synthesis where the findings

were tested deductively, compared to the prior coding

and text (30). NVIVO 10 software (QSR International) was

used to assist with data management. After obtaining an

overview of the coding from each article, some patterns

appeared. The validation of themes was conducted by

discussing them with another researcher, which consoli-

dated the themes (30, 31).

All of the studies employed quality methodologies

except one (9), which adopted a mixed-methods

approach. The empirical studies took place in Norway,

the UK and Australia in a mental health setting (6, 7, 9–

13). Some of the studies included service users and vari-

ous health professionals. As the review focuses on the

health professionals’ perspective, the users’ perspectives

were not included. It was not possible to separate, for

example, nurses from other health professionals in these

studies (11, 13). However, since there were limited stud-

ies on nurses’ perceptions of the challenges regarding

patient participation in mental health, the seven studies

were all included, as they provided valuable knowledge.

The health professionals in the studies dealt with adults

with a mental health disorder.

Findings

The interactive inductive and deductive analysis gener-

ated three themes, which clarify how healthcare profes-

sionals perceive the challenge of ensuring that patients

participate in their treatment course in mental health

care, namely ‘Patient participation as collaboration

between the healthcare professionals and the patient’,

‘Challenges to participation’ and, finally, ‘From a profes-

sional’s perspective – what expectations do patients have

when participating in decision-making?’

Patient participation as collaboration between the healthcare

professionals and patients

Collaboration is defined as a process whereby health pro-

fessionals and patients build a partnership which focuses

on positive patient outcomes. The reviews show a co-

operative relationship in a therapeutic framework that is

focused on influencing the patients’ development and

well-being, and aimed towards the patients being able to

achieve individualised goals. An important issue for suc-

cessful collaboration is dialogic communication with the

patient, and the relationship builds on key features such

as listening to the patient, respect and honesty. The

health professionals perceived collaboration as a chal-

lenging and time-dependent process that is, however,

mutually rewarding when a successful outcome is

Table 1 First search strategy utilised via computerised databases

Steps CINAHL (CINAHL headings) MEDLINE (mesh terms) PsycINFO (subject headings) SWED+

1 (MH ‘Consumer Participation’)

OR (MH ‘Patient Participation’)

(MH ‘Patient Participation’) OR

(MH ‘Patient Involved’) OR

(MH ‘Patient Consumer’)

(MH ‘Participation’) (MH ‘Consumer Participation’)

(MH ‘Patient Participation’)

2 (MH ‘Nurses’) OR (MH ‘Staff

Nurses’) OR (MH ‘Nursing Staff’)

OR (MH ‘Mental Health’)

(MH ‘Psychiatry’) OR

(MH ‘Mental Health’)

and (MH ‘Nurse’)

‘Psychiatry’

‘Mental Health’

‘Nurses’

(MH ‘Nurse Clinicians’) OR

(MH ‘Mental Health

Associations’) OR (MH

‘Psychiatric Nursing’)

3 S1 and S2 S1 and S2 S1 and S2 S1 and S2

4 Limiters: Date of publication:

2001–2016; English Language.

Narrow by subject age: all

adult, full text

Limiters: Date of publication:

2001–2016; English language.

Narrow by subject age:

19+ years, full text

Limiters: Date of publication:

2001–2016; English language.

Narrow by subject age:

18 years and over, full text

Limiters: Date of publication:

2001–2016; English language.

Narrow by subject age: all

adult, full text

Patient Participation in mental healthcare 493

T a b le

2 O ve rv ie w

o f st u d ie s

D o cu m e n t

n u m b e r

A u th o r (Y e a r)

S tu d y d e si g n

S e tt in g a n d sa m p le

Fi n d in g s

C o m m e n ts

1 E ls ta d , E id e (2 0 0 9 )

Q u a lit a ti ve

a p p ro a ch .

In d iv id u a l in te rv ie w s a n d fo cu s

g ro u p .

Fi e ld

st u d y

T h re e co m m u n it y m e n ta l h e a lt h

ce n tr e s.

T h e p ro fe ss io n s o f o cc u p a ti o n a l

th e ra p y,

n u rs in g a n d so ci a l

e d u ca ti o n w e re

re p re se n te d ,

fi ve

w o m e n a n d o n e m a n (4 0 –

6 0 ye a rs ).

S e rv ic e u se rs

w e re

in vo lv e d in

in d iv id u a l in te rv ie w s,

w it h fi ve

w o m e n a n d fi ve

m e n (4 0 –

6 0 ye a rs ).

N o rw

a y

T h e st u d y p o in te d to

a n e e d fo r fl e xi b le

o ff e rs

to u se rs , fo r u se rs

w it h d if fe re n t

ch a lle n g e s a n d n e e d s fo r su p p o rt .

U se rs

sh o u ld

b e in vo lv e d a t d if fe re n t le ve ls

o f tr e a tm

e n ts

a n d th is co u ld

e n co u ra g e

th e ir p a rt ic ip a ti o n in

th e d e ve lo p m e n t o f

th e q u a lit y o f tr e a tm

e n t. G re a te r

p a rt ic ip a ti o n co u ld

p ro m o te

th e so ci a l

in te g ra ti o n o f p e o p le

w it h m e n ta l d is o rd e rs

in th e co m m u n it y

D e g re e s o f u se r p a rt ic ip a ti o n a n d

in fl u e n ce

o n th e in d iv id u a l le ve l

sh o u ld

n o t, in

g e n e ra l, b e vi e w e d

a s b e in g a t th e b o tt o m

o f a

h ie ra rc h y.

T h e re

is a n e e d fo r g re a te r cl a ri ty

re g a rd in g w h a t u se r p a rt ic ip a ti o n

m e a n s in

p ra ct ic e , fo r e xa m p le ,

re g a rd in g w h a t co m p e te n ci e s a n d

co n te xt s a re

n e ce ss a ry

to fa ci lit a te

2 M cC

lo u g h e n , G ill ie s,

O ’B ri e n (2 0 1 1 )

A m ix e d -m

e th o d s a p p ro a ch

co m p ri si n g fo cu s g ro u p s a n d

su rv e ys

to e xp lo re

th e su b je ct iv e

u n d e rs ta n d in g s,

a tt it u d e s a n d

e xp e ri e n ce s o f co n su m e r- n u rs e

co lla b o ra ti o n

In p a ti e n t re h a b ili ta ti o n se rv ic e o f

a p u b lic

p sy ch ia tr ic

h o sp it a l. S ix

fo cu s g ro u p s to o k p la ce . T h re e

o f th e se

co m p ri se d a to ta l o f

1 3 n u rs e s fr o m

fo u r o f th e

re si d e n ti a l- ty p e co m p le xe s a n d

o n e w a rd . T h e o th e r th re e

fo cu s g ro u p s co n si st e d o f a

to ta l o f 1 3 co n su m e rs

fr o m

fo u r o f th e re si d e n ti a l- ty p e

co m p le xe s.

S u rv e ys

w e re

m a ile d

to 1 1 8 n u rs in g st a ff . A u st ra lia

T h e st u d y fo u n d th a t a lt h o u g h co n su m e rs

a n d n u rs e s co n ce p tu a lis e d co lla b o ra ti o n in

si m ila r w a ys , th e ir liv e d e xp e ri e n ce s w e re

d is p a ra te . A

k e y fi n d in g o f th e st u d y w a s

th a t m u tu a l re co g n it io n o f k n o w le d g e a n d

e xp e rt is e is n e e d e d fo r su cc e ss fu l

co lla b o ra ti o n . T h e st u d y re in fo rc e d th e

n e e d fo r co n su m e rs

a n d n u rs e s to

e st a b lis h

co m m o n g ro u n d o n w h ic h to

co lla b o ra te

a n d to

a rt ic u la te

th e b e h a vi o u rs

a n d

e xp e ct a ti o n s o f w o rk in g co lla b o ra ti ve ly .

W h ile

co lla b o ra ti o n w a s a ck n o w le d g e d a s

a si g n ifi ca n t a n d d e si ra b le

b a si s fo r

th e ra p e u ti c re la ti o n sh ip s,

it w a s ch a lle n g e d

b y th e d e te rm

in a n ts

o f p o w e r, su ch

a s

k n o w le d g e , in fo rm

a ti o n a n d e xp e rt is e

T h e g e n e ra lis a b ili ty

o f th e fi n d in g s

o f th is st u d y m ig h t b e lim

it e d . In

a d d it io n , se lf -s e le ct io n fo r fo cu s

g ro u p s,

th e se le ct io n o f ‘w

e ll’

co n su m e rs , a n d a lo w

su rv e y

re sp o n se

ra te

m ig h t b e in d ic a ti ve

o f

a p a rt ic u la r p re d is p o si ti o n to , o r

p re co n ce p ti o n s o f, co lla b o ra ti o n

a n d th e re fo re

b ia se d d a ta

3 P o rt e r (2 0 0 1 )

Q u a lit a ti ve

a p p ro a ch .

S e m i- st ru ct u re d in te rv ie w .

C o la iz zi ’s

p h e n o m e n o lo g ic a l

a p p ro a ch

to d a ta

a n a ly si s w a s

a p p lie d

T h e p a rt ic ip a n ts

co m p ri se d n in e

q u a lifi e d m e n ta l h e a lt h n u rs e s

fr o m

th re e a cu te

g e n e ra l

p sy ch ia tr ic

w a rd s in

th e U K

T h e st u d y re ve a le d th a t n u rs e s va lu e th e

co n ce p t o f u se r in vo lv e m e n t b u t co n si d e r it

to b e p ro b le m a ti c in

ce rt a in

ci rc u m st a n ce s.

T h e st u d y re ve a le d th a t n u rs e s h o ld

si m ila r

vi e w s re g a rd in g th e m e a n in g o f p a ti e n t

in vo lv e m e n t in

ca re

p la n n in g , b u t lim

it e d

re so u rc e s,

in d iv id u a l p a ti e n t ch a ra ct e ri st ic s

a n d lim

it a ti o n s in

n u rs in g ca re

a re

th e

p ri m a ry

in h ib it in g fa ct o rs

T h e sm

a ll sa m p le

si ze

m e a n s th a t

th e fi n d in g s ca n n o t b e w id e ly

a p p lie d . Fu rt h e r d a ta

tr ia n g u la ti o n

m a y h a ve

st re n g th e n e d th e st u d y

494 K. Jørgensen, J.D. Rendtorff

T a b le

2 (C o n ti n u e d )

D o cu m e n t

n u m b e r

A u th o r (Y e a r)

S tu d y d e si g n

S e tt in g a n d sa m p le

Fi n d in g s

C o m m e n ts

4 S o lb jø r, R is e , W e st e rl u n d ,

S te in sb e k k (2 0 1 3 )

Q u a lit a ti ve

a p p ro a ch .

Q u a lit a ti ve

in te rv ie w .

G ro u n d e d th e o ry

a p p ro a ch

T w e n ty

u se rs

a n d 2 5 st a ff fr o m

a m e n ta l h e a lt h h o sp it a l.

T h e p ro fe ss io n a ls in cl u d e d

p sy ch ia tr is ts , p sy ch o lo g is ts

a n d

n u rs e s.

T h e p a ti e n ts

w e re

a g e d 2 1 – 6 9

a n d va ri e d in

d ia g n o si s,

ti m e in

tr e a tm

e n t a n d w h e th e r th e y

h a d e xp e ri e n ce

o f in - o r

o u tp a ti e n t tr e a tm

e n t.

N o rw

a y

B o th

u se rs

a n d p ro fe ss io n a ls sa w

p h a se s o f

p o o r h e a lt h a s a n o b st a cl e to

p a ti e n t

p a rt ic ip a ti o n . La ck

o f in si g h t, la ck

o f ve rb a l

a b ili ty

a n d d if fi cu lt ie s in

co o p e ra ti n g m a d e

p a rt ic ip a ti o n d if fi cu lt . D u ri n g su ch

p h a se s,

p a ti e n t p a rt ic ip a ti o n w a s re d e fi n e d . T h e re

w a s a sh if t in

re sp o n si b ili ty , w h e re

p ro fe ss io n a ls to o k ch a rg e th ro u g h th e

st ra te g ie s o f p ro vi d in g in fo rm

a ti o n ,

m o ti va ti n g p a ti e n ts

a n d re d u ci n g ch o ic e s.

R e sp e ct

a n d d ig n it y w e re

m a in ta in e d a n d

n o t re d e fi n e d

T h e in te rv ie w s in

th is st u d y p ro vi d e d

vi e w s fr o m

b o th

se rv ic e u se rs

a n d

h e a lt h p ro fe ss io n a ls . O n e lim

it a ti o n

is th a t a ll o f th e in te rv ie w e e s w e re

a ss o ci a te d w it h o n e m e n ta l h e a lt h

co m m u n it y h o sp it a l in

ce n tr a l

N o rw

a y.

T h is h o sp it a l is si m ila r to

o th e r su ch

h o sp it a ls in

N o rw

a y,

w it h b o th

st a ff

a n d u se rs

h a vi n g

e xp e ri e n ce s fr o m

o th e r m e n ta l

h e a lt h se rv ic e s.

A se co n d lim

it a ti o n

is th a t th e sa m p le

d o e s n o t

se p a ra te

th e re su lt s a cc o rd in g to

d ia g n o st ic

g ro u p s

5 S to rm

, D a vi d so n (2 0 1 0 )

Q u a lit a ti ve

a p p ro a ch .

S e m i- st ru ct u re d in te rv ie w s

In te rv ie w s w it h in p a ti e n ts

w e re

co n d u ct e d .

A se m in a r w a s h e ld

to e n g a g e

p ro vi d e rs

in a d ia lo g u e w it h

se rv ic e u se rs

a n d fa m ily

m e m b e rs .

M o n th ly

st a ff

m e e ti n g s w e re

h e ld .

In te rv ie w s w it h se rv ic e p ro vi d e rs

w e re

w it h m e n ta l h e a lt h n u rs e s,

so ci a l w o rk e rs , d e p a rt m e n t

le a d e rs

a n d th e ra p is ts

(p sy ch o lo g is ts

a n d p sy ch ia tr is ts )

e m p lo ye d a t th e in p a ti e n t

d e p a rt m e n ts

in th e tw

C M H C s.

N o rw

a y

T h e p ro vi d e rs

o ft e n p e rc e iv e d in p a ti e n ts

a s

b e in g u n m o ti va te d a n d u n w ill in g to

ta k e

p a rt in

th e ir o w n ca re . P ro vi d e rs

a ls o

a p p e a re d to

st ru g g le

w it h e n g a g in g p e o p le

in d ia lo g u e re g a rd in g th e ir ca re , m a k in g

tr e a tm

e n t g o a l- d ir e ct e d , in vo lv in g

in p a ti e n ts

in d e ve lo p in g in d iv id u a l ca re

p la n s o r in

m e e ti n g s a b o u t tr e a tm

e n t, a n d

d e ve lo p in g u se r in vo lv e m e n t a t th e

d e p a rt m e n ta l le ve l

T h e q u a lit a ti ve

fi n d in g s p re se n te d in

th is p a p e r d e m o n st ra te

th e d iv e rs it y

in in p a ti e n ts ’ a n d p ro vi d e rs ’

p e rs p e ct iv e s o n in vo lv e m e n t in

se rv ic e s.

S u ch

d if fe re n ce s in

p e rs p e ct iv e w ill n e e d to

b e

e xp lo re d fu rt h e r a n d a d d re ss e d in

fu tu re

e ff o rt s to

in cr e a se

se rv ic e

u se r in vo lv e m e n t in

in p a ti e n t ca re

Patient Participation in mental healthcare 495

T a b le

2 (C o n ti n u e d )

D o cu m e n t

n u m b e r

A u th o r (Y e a r)

S tu d y d e si g n

S e tt in g a n d sa m p le

Fi n d in g s

C o m m e n ts

6 T e e , La th le a n , H e rb e rt ,

C o ld h a m , E a st , Jo h n so n

(2 0 0 7 )

Q u a lit a ti ve

a p p ro a ch .

A n e m a n ci p a to ry

re se a rc h d e si g n ,

k n o w n a s co -o p e ra ti ve

in q u ir y,

w a s

ch o se n to

m o d e l a n e ff e ct iv e

re se a rc h a n d e d u ca ti o n p a rt n e rs h ip

S e rv ic e u se rs

w it h e xp e ri e n ce

o f

m e n ta l h e a lt h se rv ic e u se

ra n g in g fr o m

5 to

1 0 ye a rs

o r

o ve r. A ll w e re

st ill in

re ce ip t o f

se rv ic e s.

S tu d e n t m e n ta l h e a lt h n u rs e s

u n d e rt a k in g th e m e n ta l h e a lt h

b ra n ch

o f o n e o f th e fo llo w in g

p ro g ra m m e s – D ip lo m a ,

D ip lo m a w it h A d va n ce d

S tu d ie s,

D e g re e o r P o st g ra d u a te

D ip lo m a – w e re

a ls o in cl u d e d .

A ll h a d so m e e xp e ri e n ce

o f

w o rk in g in

th e ra p e u ti c o r

e d u ca ti o n a l g ro u p s d u ri n g th e

e d u ca ti o n p ro g ra m m e s.

U K

Fa ct o rs

in h ib it in g p a rt ic ip a ti o n in cl u d e d

st ig m a ti si n g a n d p a te rn a lis ti c a p p ro a ch e s,

w h e re

cl in ic a l ju d g e m e n ts

w e re

m a d e

so le ly

o n th e b a si s o f d ia g n o si s.

E n h a n ci n g

fa ct o rs

w e re

a re sp e ct fu l cu lt u re

w h ic h

re co g n is e d u se rs ’ ‘e xp e rt is e ’ a n d

co m m u n ic a te d a b e lie f in

in d iv id u a l

p o te n ti a l. T h e in q u ir y b e n e fi ts

in cl u d e d

in si g h t in to

se rv ic e u se rs ’ p e rs p e ct iv e s,

e n h a n ce d co n fi d e n ce

in d e ci si o n -m

a k in g ,

a n a p p re ci a ti o n o f p o w e r is su e s in

h e lp in g

re la ti o n sh ip s,

a n d th e d e co n st ru ct io n o f

d e ci si o n -m

a k in g w it h in

a sa fe

le a rn in g

e n vi ro n m e n t

T h is co -o p e ra ti ve

in q u ir y w a s lim

it e d

to th e e xp e ri e n ce

o f o n e g ro u p o f

e ig h t se rv ic e u se rs

a n d e ig h t

n u rs in g st u d e n ts .

G iv e n th e lim

it e d e xt e n t o f th e

e va lu a ti o n o f se rv ic e u se r

p a rt ic ip a ti o n in

p ra ct ic e

d e ve lo p m e n t in it ia ti ve s,

it is

im p o rt a n t to

le a rn

fr o m

w e ll-

d e si g n e d e xa m p le s w h ic h d e ve lo p

co n ce p tu a l tr a n sf e ra b ili ty

to o th e r

se tt in g s a n d in it ia ti ve s

7 W ri g h t, R o w le y,

C h o p ra ,

G re g o ri o u , W a ri n g (2 0 1 6 )

Q u a lit a ti ve

a p p ro a ch .

Fo cu s g ro u p s.

C o n ve n ti o n a l, th e m a ti c q u a lit a ti ve

te ch n iq u e s w e re

u se d to

a n a ly se

th e d a ta

O n e a cu te , in p a ti e n t m e n ta l

h e a lt h w a rd .

S e ve n se m i- st ru ct u re d fo cu s

g ro u p in te rv ie w s w e re

co n d u ct e d w it h w a rd

st a ff ,

co m m u n it y st a ff

a n d se rv ic e

u se rs

(t h e to ta l n u m b e r o f

p a rt ic ip a n ts

w a s 5 2 ).

U K

T h e u se r’ s vo ic e w a s n o t in vo lv e d in

th e

p ro ce ss . A

la ck

o f re so u rc e s ca u se d

m in im

a l in vo lv e m e n t.

D u e to

th e la ck

o f re so u rc e s (i n p a ti e n t

b e d s a n d co m m u n it y ca re

fo llo w -u p ), th e

ro le

se rv ic e u se rs

co u ld

p la y w a s

d im

in is h e d . In

th e ir n a rr a ti ve s,

cl in ic a l st a ff

a ss o ci a te d th e p e rs o n w it h th e p ro ce ss ,

a n d u se d la n g u a g e w h ic h d e h u m a n is e d

th e in d iv id u a l

T h e cu rr e n t co n te xt

o f ca re

d o m in a te d b y re st ri ct e d re so u rc e s.

W it h in

th is cl im

a te , in n o va ti ve

so lu ti o n s a re

re q u ir e d to

e n su re

th a t se rv ic e u se rs

a re

a b le

in fl u e n ce

th e d e liv e ry

o f th e ir ca re

a t th e k e y p o in ts

o f a d m is si o n to ,

a n d d is ch a rg e fr o m , h o sp it a l

496 K. Jørgensen, J.D. Rendtorff

achieved (Document 1–2, 7). This suggests that the

health professionals felt they had to adapt their knowl-

edge and skills depending on the patients’ resources and

needs. However, both the health professionals and the

patients need the desire, capability and time to achieve a

collaboration and the potential outcomes of collaborating

(Document 2).

Achieving collaboration is linked to partnership in

decision-making, which requires a deep understanding of

the individual’s circumstances through a process of

shared learning. The texts do not define shared learning,

but it is described as creating a basis for knowledge

acquisition and conditions in which the patient can feel

safe and confident talking about his or her concerns

(Document 6). Significantly, this entails engaging in col-

laboration, which makes special demands on nurses’ and

patients’ knowledge, skills and resources.

It also appeared that patients with severe mental illness

may be challenged in participating in active cooperation,

and therefore, they did not receive the same benefits

from the treatment. In contemporary society, there is an

expectation that the patients are active agents in coping

with their illness, which is perceived as a precondition

for good collaboration (Document 2, 5–6).

The review explains some concepts regarding the role

of the patient and the health professional in carrying out

treatment. The concepts are not, however, clearly

defined, and the authors did not engage in a discussion

of the terms used in relation to participation. The follow-

ing concepts – user participation, collaboration, partner-

ship, user involvement and patient participation – seem

to be used synonymously to describe the patient’s active

role in treatment, which is linked to a recovery-oriented

approach, shared decision-making, shared ownership and

care plans. A common feature of these concepts is that

the health professionals provide patients with the knowl-

edge with which to achieve a shared understanding of

their problems and treatment (Document 1–7). However,

encouraging the patient to take ownership of his or her

illness and the treatment is challenging in cases where

patients suffer from severe symptoms (Document 6). In

these cases, the consequence can be that the patient does

not receive the feeling of ownership over his or her treat-

ment (Document 4).

If the health professionals assess that the patient does

not feel able to actively participate in shared decision-

making, there is a tendency for the health professionals

not to involve the patient to any great extent, and

instead, participation is reduced to focusing on informing

them about the illness and treatment. The patient is thus

assigned a passive role as a recipient of information and

treatment (Document 5, 7).

According to the health professionals, the patients

desire support to solve their individual needs in their

recovery process. This has led to frustration among

health professionals that they could not meet the individ-

ual needs of patients (Document 1–2, 5–7).

It seems that patient participation relates to sharing the

power and clarity over an illness, in order to form a com-

mon understanding of the situation. The degree of partic-

ipation is dependent on how much power and resource

the patient has, as can be seen in the degree to which

there is patient participation, from being informed to

being consulted, in partnership, through to having some

kind of individual control (Document 1–2, 4–7).

Shared decision-making (SDM) is present as a model

for involving patient perspectives. In SDM, health profes-

sionals engage in a dialogue with patients regarding their

goals, hopes and expectations. Health professionals con-

sider the patients’ individual experience and expert

knowledge and offer the patients choices which seek to

meet the individual patient’s desires. SDM requires both

the patient and provider to be actively involved in deci-

sion-making, and that both parties share their knowledge

and preferences before they ultimately reach an agree-

ment (Document 4–7).

For SDM, the patient may relate to their situation and

treatment and reflect on this together with the health

professionals. To support the patient to become more

actively involved in decisions and achieve more self-con-

trol, skills training and courses are recommended in

order to learn how to manage symptoms (Document 4–

7).

There is limited focus on patients who, for various rea-

sons, do not want to be actively involved. The reasons

why some patients do not want to become actively

involved in patient participation are explained as being

organisational issues, such as a lack of resources, as well

as patients’ lack of benefit in playing an active role. It

does not appear that involvement is a choice from which

the patients can opt out (Document 1, 6).

Challenges to participation

Leading health policies, professionals and patients assume

patient participation will promote benefits in treatment,

creating more self-confidence, quality of life and foster

greater independence of professional help. Patient partici-

pation does, however, lead to some challenges in a men-

tal health practice. The concept is not clearly defined and

is difficult for patients and professionals to relate to, and,

consequently, also to how it should be implemented in

practice. The term is frequently used and discussed, but

the definition is vague and has different meanings

depending on individual perspective. Some patients

express concerns regarding participation, because they

fear it will lead to less support in the recovery process

(Document 1–7).

Health professionals experience that many patients are

not used to being actively involved in decisions regarding

Patient Participation in mental healthcare 497

their treatment. Active patient participation is subject to

a reform of psychiatry, from a paternalistic to a holistic

culture. It places new demands on healthcare profession-

als regarding the involvement of patients based on indi-

vidual expectations and needs (Document 4). There is a

need for a recovery-orientated approach to the treatment

in which the patient’s knowledge, experience and expec-

tations are incorporated in order to clarify and be open

to the patient’s participatory role in the process (Docu-

ment 1–3, 6).

It is a problem within mental health care that it main-

tains a biomedical approach to treatment, where the

health professional decides on behalf of the patient which

the most appropriate treatment. The leading health poli-

cies, user associations and professionals advocate a reform

of mental health care towards a more holistic approach

(Document 1–7). SDM and care plans are suggested for an

active insight into the patient’s social life, needs and avail-

able resources. This method incorporates goals for treat-

ment and how the plan must be carried out in practice and

when it will be evaluated (Document 2, 4–7).

There is a tendency for health professionals to focus on

the patient’s limitations instead of their strengths. The

health professionals find it easier to focus on problems

and to propose the best solutions to these problems for

their patients. The consequence is that the patient’s

resources are not involved in the planning and carrying

out of the treatment (Document 1–7).

From a professional’s perspective – what expectations do patients have when participating in decision-making?

From a professional’s perspective, in the UK, Australia

and Denmark, there is an expectation that patients in the

mental health service will be involved as equal partners.

The patient can expect to be involved in decisions about

their treatment and to participate actively over the course

of treatment.

When the healthcare professionals held high expecta-

tions regarding the patient’s abilities, they responded to

those expectations accordingly. Thus, resourceful patients

were more heavily involved than the most debilitated

(Document 1–2, 5–7).

Patients are expected to participate in decisions regard-

ing their treatment and enter into a dialogic mutual com-

munication, where the patient’s perspective is at the

centre of the treatment. This entails a dialogue in which

the patient’s knowledge, expertise and viewpoints are

involved. Closely linked to the idea of patient participa-

tion is the concept of recovery, which involves build-

ing up the treatment from the patient’s perspective

(Document 1–2, 4–5, 7).

Recovery is not described so clearly, but is referred to

and explained by Slade, who describes that a recovery-

orientated approach meets many patients’ wishes that the

treatment should be based on an individual’s perception of

his or her problems. It is not necessarily the patient’s hallu-

cinations or other symptoms which are the patient’s worst

problems, but rather being able to cope and control his or

her anxiety in social situations, or recovery from secondary

abuse. Similarly, many patients desire a long-term treat-

ment perspective including, for example, their social life

and life-world values. Participation in the treatment course

may help to strengthen empowerment, self-efficacy, devel-

oping a positive identity, framing the mental illness, self-

managing the mental illness and developing valued social

roles (Document 1–2, 5–7).

Participation and a recovery-orientated approach allow

for the genuine expression of what the person desires in

his or her life and how the treatment can support the

recovery process. Patient participation in mental health

care provides a better understanding of the patients as

unique individuals (Document 1–3, 5–7).

There is some variation in the patients’ desires con-

cerning their participation in decision-making. Some

patients wished to take part in shared decision-making

regarding their treatment and be active in the entire

course, while others preferred to leave the responsibility

for decisions to health professionals. A further group of

patients did not want to be active participants in deci-

sion-making at all, which may be due to their severe

symptoms and lack of energy to assess what may be best

for them (Document 1–2, 5–6).

Discussion

The findings of this integrative review reveal that patient

participation is not clearly defined and patient participa-

tion creates many challenges, making it difficult to trans-

fer to mental health practice. However, participation is

expected to result in a better recovery process and

strengthens empowerment, self-control and self-efficacy,

and promotes quality of life (Document 1–7). In accor-

dance with existing research, patient participation can be

considered a new paradigm within a neoliberalist logic,

which involves promoting the patient’s ability to become

an independent, responsible and healthy individual, but

also offers some challenges for healthcare professionals to

anchor involvement culture (2, 32, 33).

This integrative review leads to two themes that will

be discussed in the following section, namely ‘How can

patient participation be defined in mental health?’ and

‘What are the challenges in implementing patient partici-

pation in mental health?’

How can patient participation be defined in mental health

care?

Patient participation contains no clear definition, but

shares some common values that focus on activating the

498 K. Jørgensen, J.D. Rendtorff

patient’s resources and promoting the patient’s opportu-

nities for better self-care. In the review, no discussions or

comparisons of synonymous terms referring to patient

participation were made. The concepts used were ‘user

participation’, ‘collaboration’, ‘partnership’, ‘user involve-

ment’ and ‘patient participation’, all of which describe

the patient’s active role in treatment, which is linked to a

recovery-oriented approach, shared decision-making,

shared ownership and care plans.

Consequently, it would appear that the patient is

expected to be an active participant, implying that the

patient should share his or her thoughts, worries, prob-

lems, needs, hopes and goals. There is an expectation

that the patient can decide on their situation and treat-

ment and that treatment is based on a recovery-oriented

approach (Document 1–7).

This review shows that the patient has expert knowl-

edge of his or her own life, and this lived experience can

be used to an advantage in the planning and carrying

out of the treatment (Document 1–7). Patient participa-

tion is a new approach in helping the patients and

requires health professionals to adapt their knowledge

and skills to the patients’ needs (34).

In contrast to offering standardised services for treat-

ment, active participation is based on an individual per-

spective. Treatment should be planned based on the

patients’ perceived problems and needs. Mental health

care must be reformed towards being recovery oriented,

which means the treatment not only focuses on the diag-

nosis and achievement of remission, but is also based on

the patient’s hopes and desires for future goals. Recovery

is associated with a good quality of life, which is not the

same as being free from symptoms. A recovery-oriented

approach requires an insight into the patient’s life, hopes

and needs (Document 1–3, 5–7).

A recovery-orientated approach has the aim of promot-

ing the activation of the patient in their own treatment

course – this represents a trade-off with the traditional

paternalistic approach, where health professionals aim to

help the patient obtain ‘normality’ (9, 11, 12). This review

reflects how patients should be included and shares their

reflections of their illness and how treatment should be

arranged. Shared ownership illustrates how the responsi-

bility for the process is shared with the patient, and it is

assumed that more knowledge about the illness will lead

to greater ownership of the treatment. Thus, participation

is important in achieving a partnership with the patient

when agreeing on issues and plans for solutions. The goals

of participation are varied, but include motivating patients

by building cooperation, getting to know the person and

reinforcing self-care and self-management.

As practical suggestions for how health professionals

should be motivated to promote patient participation in

clinical practice, this review recommends the use of

dialogue, SDM and care plans (7, 12). Communication is

both a tool and a goal in patient participation. Creating a

relational and respectful dialogue is key, and this is also

the basis in SDM and the preparation of care plans (7,

12). Care plans and SDM are proposed as methods to

promote participation in the treatment course (7, 9, 12).

The individual patient’s perspectives are clarified through

open questions and by allowing the patient to be heard

in accordance with how he or she views their situation

and their understanding of the help required.

Recovery should be defined by the patient’s perspective,

whereby health professionals promote patient motivation

and opportunities for patients to be active participants.

Recovery is also connected with the sharing of knowledge,

whereby the professional shares their professional knowl-

edge and the patient his or her expert knowledge. This

assumes that the patient will open up and share their

thoughts and goals to create an equal partnership in the

mental healthcare setting, to develop plans for treatment.

The patient will then acquire the necessary knowledge and

skills in order to be able to manage their problems.

It is unclear how significantly patients must participate

before they can be considered to be actively involved.

Similarly, the question, ‘Is it acceptable if the patient opts

out of participation?’ may be asked.

What are the challenges in implementing patient

participation in mental health?

This integrative review reveals a tension between the ide-

als of participation in theory and in mental health prac-

tice, where there are still many challenges in involving

patients. This review shows a tendency that patients with

serious mental health problems are less involved, which

is linked to the fact that healthcare professionals focus