How do relatives of persons with dementia experience their role in the patient participation process...

OLDER PEOPLE

How do relatives of persons with dementia experience their role in

the patient participation process in special care units?

Ann K Helgesen, Maria Larsson and Elsy Athlin

Aims and objective. To explore the role of relatives in the patient participation process for persons with dementia living in

special care units in Norwegian nursing homes, with focus on everyday life.

Background. Studies exploring the experience of relatives of persons with dementia as to their role in the patient participa-

tion process are limited.

Design. The study had an explorative grounded theory design.

Method. Data collection was carried out by interviews with twelve close relatives. Simultaneously, data analysis was per-

formed with open, axial and selective coding.

Results. The relatives’ role in the patient participation process was experienced as transitions between different roles to

secure the resident’s well-being, which was understood as the resident’s comfort and dignity. This was the ultimate goal for

their participation. The categories ‘being a visitor’, ‘being a spokesperson’, ‘being a guardian’ and ‘being a link to the out-

side world’ described the different roles. Different situations and conditions triggered different roles, and the relatives’ trust

in the personnel was a crucial factor.

Conclusions. The study has highlighted the great importance of relatives’ role in the patient participation process, to secure

the well-being of residents living in special care units. Our findings stress the uttermost need for a high degree of compe-

tence, interest and commitment among the personnel together with a well functioning, collaborative and cooperative rela-

tionship between the personnel and the relatives of persons with dementia. The study raises several important questions that

emphasise that more research is needed.

Relevance to clinical practice. Relatives need to be seen and treated as a resource in the patient participation process in

dementia care. More attention should be paid to initiating better cooperation between the personnel and the relatives, as this

may have a positive impact both on the residents’ and the relatives’ well-being.

Key words: dementia, grounded theory, patient participation, relatives, special care unit

Accepted for publication: 28 July 2012

Introduction

Patient participation in health care is an ideology, a legal

right and an ethical value in Norway and many other

western countries [World Health Organization (WHO)

1994, Patients Rights Act 1999, Norwegian Nurses Associ-

ation 2007]. Patient participation, which commonly refers

to partaking in decision-making, has become a central

concept in nursing (Eldh et al. 2006) and the subject of

many research studies (Cahill 1996, 1998, Thompson 2007,

Authors: Ann K Helgesen, RNT, Doctoral Student, Assistant Pro-

fessor, Department of Nursing, Karlstad University, Karlstad,

Sweden and Faculty of Health and Social Studies, Østfold

University College, Halden, Norway; Maria Larsson, PhD, RN,

Senior Lecturer, Department of Nursing, Karlstad University,

Karlstad; Elsy Athlin, PhD, RNT, Professor, Department of

Nursing, Karlstad University, Karlstad, Sweden

Correspondence: Ann K Helgesen, Assistant Professor, Faculty of

Health and Social Studies, Østfold University College, Halden,

Norway. Telephone: +47 69303135.

E-mail: [email protected]

© 2012 Blackwell Publishing Ltd

1672 Journal of Clinical Nursing, 22, 1672–1681, doi: 10.1111/jocn.12028

Foss 2011). However, studies that explore the phenomenon

in one of the most rapidly growing areas in health care,

elderly care in general (Wetzels et al. 2007) and dementia

care in particular, are still limited (Menne & Whitlatch

2007, Helgesen et al. 2010).

Ferri et al. (2005) estimated in their global study that

24�3 million people had dementia, with 4�6 million new

cases of dementia every year (one new case every seven sec-

onds). The prevalence of people with dementia is increasing

also in Norway (Norwegian Directorate of Health 2007).

Because persons with dementia are heavy consumers of

health services, healthcare personnel will face several chal-

lenges in the future when caring for these persons (Ferri

et al. 2005). One such challenge concerns patient participa-

tion. Most persons with dementia deal with symptoms such

as memory loss, concentration and communication prob-

lems, and these will reduce their ability to express their

own wishes and to participate in the decision-making

process (Cheston et al. 2000, Karlawish et al. 2002,

Hirschman et al. 2004, 2005, Tutton 2005, Boer et al.

2007). However, even if a person has been found legally

incompetent to decide about healthcare matters such as

medical decisions, this does not mean that the person is

incompetent and unable to participate in day-to-day deci-

sion-making (Holm 2001, McCormack 2002, Maeck &

Stoppe 2008). Previous research has emphasised that

persons with mild to moderate dementia both have the

competence (Kim et al. 2002, Sabat 2005) and wish (Helge-

sen et al. 2010) to participate in everyday decision-making.

However, in situations where the person has problems

expressing his or her own decisions or is unable to partici-

pate in decision-making, their relatives should – according

to political ideology, nurses’ ethical codes and law – have

the opportunity to take part in the participation process

(World Health Organization 1994, Patients Rights Act

1999, Norwegian Directorate of Health 2007, Norwegian

Nurses Association 2007). Those relatives are entitled to

participate together with the person with dementia and thus

be included in the process of patient participation (Patients

Rights Act 1999).

Persons with dementia will most likely eventually become

dependent on health care (Norwegian Directorate of Health

2007) and because dementia is irreversible and not curable

(Kada et al. 2009), matters concerning decisions in every-

day life are of outmost importance for their quality of life.

In Brownlea’s (1987) definition of patient participation, the

importance of consulting and involving patients regarding

ordinary matters in everyday life is highlighted. In dementia

care, relatives must sometimes participate in this process on

behalf of the person with dementia, and there is growing

evidence that relatives’ involvement in the everyday life of

persons with dementia after admission to a care home can

have positive effects for both relatives and residents (Davies

& Nolan 2006, Woods et al. 2008). However, there are

indications that relatives find the involvement distressing

(Livingston et al. 2010), and that the involvement is not

always welcomed by the staff (Hertzberg et al. 2003,

Davies & Nolan 2006).

The residents’ and their relatives’ participation in every-

day life are often highlighted as important elements to fulfil

the philosophy of special care units (SCUs) for persons with

dementia concerning maximisation of the quality of life

(Gruneir et al. 2008) and the ideology of person-centred

care that provides prerequisites for patient participation

(Kitwood 1997, Edvardsson et al. 2008). However, research

into how relatives experience their role in the participation

process concerning the residents’ everyday life in the con-

text of SCU is limited; therefore, this study was carried out.

Aim

The aim of this study was to explore the role of relatives in

the patient participation process for persons with dementia

living in SCUs in Norwegian nursing homes, with focus on

everyday life.

Methods

Design

Grounded theory was chosen as the research methodology

for this study as it is suitable for studying social processes

and interactions and for exploring substantive areas in

which little is known (Strauss & Corbin 1998). In addition,

a design that derives theory from data will most likely

resemble the reality about how relatives of persons with

dementia experience their role in the patient participation

process and offer insight and enhance understanding for

both non-academic and academic audiences.

Settings and entrance to the field

The study was conducted in SCUs in three nursing homes

representing both urban and rural districts in the eastern

part of Norway. Written permission was obtained from the

head of the nursing homes before the study was conducted.

The head nurse of each unit was contacted and asked

to deliver verbal and written information about the study

to relatives of their residents and to ask for their consent to

participate in the study.


Journal of Clinical Nursing, 22, 1672–1681 1673

Older people Patient participation in dementia care

Informants

Inclusion criteria to join the study were to be the closest

relative according to the patient journal, able to speak

Norwegian and competent to sign the informed consent

form. In the beginning, the sampling of informants was

purposeful, and as the process proceeded, informants were

theoretically chosen to saturate the emerging categories

(Strauss & Corbin 1998). Saturation of the categories was

reached after eighteen interviews, but three more infor-

mants were interviewed to further secure saturation. This

new data validated and densified the categories. The total

number of informants was thus twelve relatives: five

spouses (two husbands and three wives), five children (three

sons and two daughters), one stepdaughter and one niece.

The age of informants ranged between 40 and 82 years

(md 59 years). Six informants had undergone education at

university/university college level, four education at upper

secondary school level and two at lower levels of education.

The duration that their next of kin had been in the unit

ranged from one month to four years (md 13�5 months).

Data collection

Data were collected between January 2010 and March

2011. Prior to data collection, one pilot interview was con-

ducted to test an interview guide that contained themes

regarding how relatives experienced their role in the partici-

pation process concerning the resident’s everyday life.

Aspects of everyday life included sleep and rest, personal

hygiene, clothing, meals, social activities and medications.

The interviews started as open dialogues in which the

informants were encouraged to talk freely about how they

experienced their role in the participation processes. The

interview guide was used as a reminder for the researcher.

The guide was extended during the data collection and

analysis and modified to focus on the emerging categories,

their properties and dimensions and the different condi-

tions.

All participants were interviewed twice. The second inter-

view aimed to deepen, broaden and validate the understand-

ing of the first interview. When both interviews were

analysed, a new informant was searched for and inter-

viewed. The interviews were conducted at the participants’

workplace, in their private homes or in meeting rooms at

the nursing homes, depending on the wishes of the partici-

pant. One informant was interviewed by phone because of a

long geographical distance. The interview duration ranged

from 21 to 70 minutes (md 39 minutes) on the first occasion

and from 15 to 60 (md 30 minutes) on the second.

All interviews but two follow-up interviews were recorded

and transcribed verbatim. Only notes were taken during

the two non-recorded interviews because the informants

expressed that they felt uncomfortable being recorded.

Data analysis

In line with the process of constant comparison in

grounded theory (Strauss & Corbin 1998), data collection

and data analysis were performed in a cyclic progression

meaning that data collection and analyses took place

simultaneously. In the open coding process, the text was

scrutinised to identify the meaning and process of the

data. These were then coded. The codes were constantly

compared and contrasted by discussions in the research

team and grouped into preliminary and more abstract cat-

egories. Further data collection took place, and properties

and dimensions of the emerging categories were sought.

In the axial coding process, the categories were further

clarified and linked to each other. In the process of selec-

tive coding, each category was densified, the core category

was identified and the conceptual model refined. During

the entire process, memos with thoughts, ideas, reflections

and preliminary connections between codes and categories

were written and discussed in the research team (Strauss

& Corbin 1998).

Ethical considerations

The study was approved by the Norwegian Social Science

Data Services and Regional Committees for Medical and

Health Research Ethics. The informants were verbally

informed and given written information stating the purpose

of the study that the data would be handled confidentially

and that the informants had the right to withdraw at any

time without any consequences for them or their next of

kin. Informed consent was given by all informants (Decla-

ration of Helsinki 2009).

Findings

Transitions between different roles to secure the

resident’s well-being

The relatives’ role in the patient participation process was

experienced as transitions between different roles to secure

the resident’s well-being, which was understood as the

resident’s comfort and dignity. The categories ‘being a

visitor’, ‘being a spokesperson’, ‘being a guardian’ and

‘being a link to the outside world’ described the different


1674 Journal of Clinical Nursing, 22, 1672–1681

AK Helgesen et al.

roles the relatives moved between to secure the resident’s

well-being, which was the ultimate goal for their partici-

pation. These roles contained both different degrees and

ways of participation. Which role the relatives stepped

into depended mainly on how they perceived the resident’s

situation, but ‘being a visitor’ was found to be the prere-

quisite for the other roles. The relatives judged the resi-

dent’s situation by using their senses (looking, listening

and smelling) and by observing changes in the resident’s

health, mood, behaviour and care. As long as the resident

expressed satisfaction and the relatives perceived that

everything was fine, their behaviour seemed to be rather

passive. When they perceived changes in the situation and

a reduction in the resident’s well-being, they took on a

more active role.

Different situations triggered different kinds of role. Two

kinds of situation were identified: healthcare situations,

which embraced physical health status and medication, and

daily care situations, which embraced sleep and rest, per-

sonal hygiene, clothing, meals and social activities.

The relatives’ role in the patient participation process

also depended on different conditions. These were related

to the relatives’ wish and effort to participate themselves,

their perception of the resident’s grade of dementia symp-

toms and day-to-day condition, the degree of emotional

closeness to the resident and their perception of the person-

nel’s care skills, which affected the level of trust towards

the personnel.

Being a visitor

‘Being a visitor’ was found to be a rather passive but

important role, and it was the prerequisite for the other

roles. In this role, all relatives, even those who explicitly

expressed that they wanted to be just visitors, searched for

information about the resident’s well-being by sensing the

atmosphere in the unit and by talking to the resident and

the personnel on duty. This information formed the basis

for further actions, to remain in the visitor role or move to

a more active role:

It is what I see and what I feel that decide whether I engage there

and then. But when I see that he (my father) is doing well I do not

engage more than visiting him, of course.

Most relatives stated that by ‘being visitors’, they could

contribute directly to the well-being of the resident, who

showed appreciation of their presence. Visiting the resident

was seen as important and stimulating, but the relatives

revealed that the visits also could be rather demanding. It

was hard for them to face the progression of the disease

and deal with the symptoms:

When I visit I want to be present, try to catch what she is preoccu-

pied with. I feel that everything is floating around in her head and

that she cannot collect the threads. You have to assure her that

everything is OK and after a while it all starts again. I cannot visit

her when I am tired.

Being a spokesperson

‘Being a spokesperson’ was found to be a more active role.

By ‘being a spokesperson’, the relatives could impart infor-

mation about the resident to the personnel and vice versa,

act on behalf of the resident and take care of the resident’s

interests. All relatives were spokespersons at least to a

certain degree, as all of them had filled in a form that

provided information about the resident:

That form contains information about his cottage, which he loved

so much. I understand that they use the information as they talk a

lot about the cottage.

Some relatives stressed that by actively speaking on

behalf of the resident, they contributed to taking care of

the resident’s personal preferences, which impacted on their

dignity:

We tell them what kind of clothes she likes. She is not that kind of

woman who dresses in nice blouses and so on. She is sporty and

prefers trousers and jogging shoes and things like that.

Relatives were most active as spokespersons concerning

the physical health status, medications and clothing. The

relatives seldom committed themselves in matters concern-

ing the resident’s sleep and rest, personal hygiene and what

to eat/drink. Those matters were often considered as private

and left to the personnel to deal with.

Being a guardian

‘Being a guardian’ was found to be the most active role,

and all relatives stepped into this role when they perceived

the resident’s comfort and dignity, and thereby their well-

being, to be threatened, and when they felt that they them-

selves were not being taken seriously as spokespersons. In

this role, the relatives controlled the care and were highly

attentive to changes in the resident’s status and daily care:

I try to come at different times. Then I can see how they (the per-

sonnel) provide care and how the residents are doing and so on.

The guardian role was particularly provoked when the

relatives perceived that something was wrong concerning

the physical health status, medications and/or clothing. This

role contained high degree of activity, as the relatives

demanded the personnel to take action:




Then they started with medication. He was like a vegetable, com-

pletely apathetic. I said to the nurse: Something is wrong here; my

dad is not like that. I told them to reduce the medication.

When the resident’s clothing was repeatedly perceived as

inappropriate, trust in the personnel became low and rela-

tives started to control the care and sometimes they actively

took over the care, for example, helped the resident to

change clothes.

To step into this role could be experienced as difficult for

the relatives as it was important for them to be liked by the

personnel, and they did not want to be perceived as ‘diffi-

cult relatives’.

Being a link to the outside world

‘Being a link to the outside world’ was found to be a role

into which some relatives stepped to give an opportunity to

the resident to catch a glimpse of ‘ordinary life’ outside the

SCU. They perceived that the resident’s opportunity to

enjoy social activities was often limited and poor. In this

role, relatives could contribute to a more meaningful daily

life, which was seen as important to secure the resident’s

well-being:

I notice that he is doing better when he comes out, much better.

It seems like he has something to live for.

Some relatives wanted to participate directly by bringing

more quality, variation and more individually adjusted

activities into the resident’s everyday life. These relatives

took the residents out for a drive, a visit to friends or to a

shopping centre or brought the outside world into the unit:

She is very fond of classical music so we bought her a CD player.

She really enjoys it when you turn the music on and give her a

glass of red wine or liqueur.

The impact of conditions on the relatives’ role in the

patient participation process

All previously mentioned conditions ‘see Fig. 1’ impacted

on the relatives’ role in the patient participation process,

but some of them were found to be more important than

others. The relatives’ perception of progression of the resi-

dents’ dementia symptoms and/or change in the day-to-day

condition could lead to a transition from a passive to an

active role. After a long time of severe dementia symptoms,

it seemed as the relatives became more passive and the

reported frequency of visits declined. Concerning the role

‘being a link to the outside world’, bad days and progres-

sion of symptoms reduced the relatives’ activities, as the

meaning of such activities was considered to be low.

Experience of emotional closeness to the resident had a

huge impact on relatives’ wishes and efforts to participate

and on which role they stepped into. A high degree of emo-

tional closeness seemed to motivate the relatives to take

part in the participation process. When emotional closeness

was lacking, relatives found it hard to be a visitor, to act as

spokesperson or to be a link to the outside world. In those

cases, relatives were not familiar with the resident’s prefer-

ences and felt uncertain about whether the resident wanted

their participation or not. With respect to the guardian role,

the degree of emotional closeness seemed to be of less

importance.

The relatives’ perception of the personnel’s care skills

and their level of trust in them affected which role they

stepped into. However, the findings were quite ambivalent

regarding how. The perception of good caring skills and

thereby high grade of trust seemed to motivate some rela-

tives to actively participate. On the other hand, this also

could lead to a kind of passivity as some relatives stressed

Figure 1 Illustration of the impact of situa-

tions and conditions on relatives’ role in the

patient participation process.



AK Helgesen et al.

that they had handed over the responsibility for the resi-

dent’s care to the personnel, whom they trusted. When rela-

tives perceived the personnel’s skills as poor, the grade of

trust decreased and all relatives stepped into the guardian

role.

Discussion

This study has shown that the relatives’ role in the patient

participation process was experienced as a dynamic issue in

which they moved between different roles to secure the resi-

dent’s well-being. The roles, which contained both different

ways and degrees of participation, are compatible with sev-

eral researchers’ descriptions of patient participation (Eldh

et al. 2006, Florin 2007, Thompson 2007, Foss 2011). In

this study, it was striking how the relatives’ ways and

degrees of participation were related to the situation and to

other conditions to a great extent.

Research has previously shown that relatives of older

people struggle to achieve good and just care (Haggstrom

et al. 2007) where they can perceive that their relatives are

happy and well looked after (Ryan et al. 2008). The rela-

tives’ concern for the persons with dementia does not stop

after the person’s movement to an institution, but continues

in an altered and still potentially stressful way (Davies &

Nolan 2006, Woods et al. 2008, Basset 2011). However, in

our study, it was striking that most relatives considered

their participation to be almost essential to reach the goal

of well-being of the resident. An alarming finding was that

relatives considered it necessary to take an active role in sit-

uations concerning health care, to secure the well-being of

their relatives. In such situations, relatives quite often per-

ceived the personnel’s care skills as limited, and therefore,

their trust in them became rather low. Even though resi-

dents in SCUs for persons with dementia are often younger

and in better physical health than residents in regular units

in nursing homes (Selbæk et al. 2008), advanced nursing

care is needed. This requires a high level of presence and a

high degree of competence, interest and commitment of the

personnel (Woods et al. 2008, Helgesen et al. 2010). SCU

residents often have psychiatric and behavioural symptoms

in addition to their cognitive impairment and frequently use

antipsychotic medications for these symptoms (Gruneir

et al. 2008, Andersen et al. 2011). This puts heavy

demands on the personnel’s ability to notice and adequately

interpret changes in the resident’s behaviour and health sta-

tus, as these might be signs of side effects of medication or

serious health problems. Our study indicates that relatives,

who knew the resident well, could be more able to recog-

nise and interpret such important signs than the personnel.

This underlines the importance of relatives’ participation in

dementia care in general and in decisions related to health-

care situations in particular.

Relatives were more passive in situations related to daily

care than healthcare situations. In matters concerning sleep

and rest, personal hygiene and meals, most relatives were

disinclined to actively participate. Relatives were particu-

larly passive in matters concerning the resident’s personal

hygiene that were regarded as issues of privacy for the resi-

dent. It was stated that keeping a distance from this private

sphere was a way of showing respect. This is comparable

with Johansson’s (2010) report suggesting that relatives’

participation in decision-making in the care can insult the

patient’s integrity. However, the relatives were more active

in situations related to the residents clothing, which might

be understood as being related to the fact that clothing is

more visible than the other daily care issues.

The relatives in our study also took on an active role in

matters that concerned social activity. This is a noteworthy

finding because residents’ involvement in meaningful activi-

ties and opportunities to get out from the nursing home

are important to residents’ well-being, quality in everyday

life (Bourret et al. 2002, Bergland & Kirkevold 2006) and

reduction in behavioural symptoms (Volicer et al. 2006). A

current study of Andersen (2011) has shown that individu-

ally adjusted stimulation programme provided by trained

nursing staff or caregivers/family members has positive

effects on the progression of the cognitive impairment as

well. When relatives in our study took on the role of being

a link to the outside world, they compensated for the

limited offering of social activities in the SCU, and in this

way, they contributed directly to high-quality dementia

care.

The findings regarding daily care situations reported here

are similar to those reported by Davies and Nolan (2006),

who described maintaining continuity and keeping an eye

on and taking part in social activities as main aspects of the

role of relatives in regard to older people living in care

homes. Our findings, which in the light of Kitwood’s theory

(1997), can be understood as important contributions to

maintaining the resident’s ‘personhood’ and thereby his or

her dignity, also underline the important role of relatives in

situations concerning daily care. The relatives in our study

have provided information to the personnel about the resi-

dents past life, their values and preferences. Such informa-

tion is crucial for the personnel to create opportunities for

the person with dementia to experience comfort, inclusion

and identity, which are essential element in person-centred

care and further on prerequisites for patient participation

(Kitwood 1997, Edvardsson et al. 2008). The words of




Morgan (2011), who herself has Alzheimer’s disease: ‘from

the moment of diagnosis your dignity is vulnerable to being

eroded, in small subtle ways and by blatant disregard’, are

a serious reminder that persons with dementia might be in

need of someone who take care of their interest to maintain

their dignity and well-being.

The finding that indicated relatives’ withdrawal when the

resident’s progression of dementia was chronic or severe

illuminated a possible threat to the resident’s well-being.

On the other hand, previous research has described that

preplacement stressors, depression and socioemotional

support prior to institutionalisation may be predictive of

relatives’ participation (Gaugler et al. 2000). However,

along with relatives’ decline of visits, they obtained fewer

opportunities to judge and monitor the resident’s health

and daily care and to take action if needed. Progression of

dementia symptoms means a loss of one’s own abilities to

express problems regarding health and care (Hirschman

et al. 2004). Thus, persons with severe dementia symptoms

are really in need of somebody to speak on their behalf to

secure their well-being. Even though the finding concerning

the connection between the frequency of visits and the

severity of dementia is rather preliminary, this is a notable

finding, and more research is needed.

Relatives in our study stated that facing the progression

of the symptoms of dementia in their loved one could be

rather demanding, and this may be one reason for the

decline in visits and the lower degree of participation. Pre-

vious research has shown that severe dementia symptoms,

such as behavioural, cognitive and functional impairments

of the person with dementia, are associated with increases

in the relatives’ burden, distress and with a decrease in

mental health and well-being (Sorensen et al. 2006). How-

ever, Gaugler et al. (2010) found clinically significant

decreases in the relatives’ burden and depression after insti-

tutionalisation of the person with dementia. The finding

that relatives sometimes perceived the caring skills of the

personnel as poor may have increased their level of burden

and distress, as they could never relax under such circum-

stances. According to Hertzberg et al. (2001), the person-

nel’s behaviour and activities towards residents and

relatives are a source of feelings such as uncertainty, disap-

pointment and frustration. It is also probable that relatives

who have a high degree of emotional closeness to the resi-

dent are particularly at risk of feeling a heavy burden and

distress, because the psychological and behavioural changes

in the residents can be hard to cope with. On the other

hand, if the degree of emotional closeness to the resident is

low, the efforts to keep on visiting and take part in the

patient participation process in spite of progression in the

dementia symptoms might be such a challenge that the vis-

its may cease. This would be harmful for the resident.

The findings of this study underline the great importance

of relatives’ role in the patient participation process to

secure the residents well-being. The findings also give rise

to important question: Who is actually responsible for

ensuring the well-being of residents? Is it acceptable that

relatives perceive to a great extent that they must step into

a guardian role to ensure that their loved ones are properly

taken care of? How will the perception that they have to

monitor the care impact on their experiences of burden

and distress? What happens to residents who do not have

relatives?

It must also be considered whether relatives’ participation

is always in the resident’s best interests. Relatives and per-

sons with dementia do not always have the same opinions,

care values and preferences (Whitlatch et al. 2009, Johans-

son 2010), and the participation of relatives may have a

negative impact on the person’s with dementia opportunity

to express own will (Johansson 2010).

Methodological reflections

Strauss and Corbin’s (1998) criteria for evaluation have

been taken in consideration, and efforts have been made to

establish an audit trail through the entire study. The

researchers who collaborated closely in the entire research

process have discussed own preconceptions about the topic

and made efforts to put these aside during the data collec-

tion and analyses, to secure as open minded an approach

as possible (Strauss & Corbin 1998). In this way, the

reliability of the findings was strengthened. Twelve infor-

mants were included in this study. Each informant was

interviewed twice to acquire as rich a data set as possible.

After 18 interviews, saturation was reached. To ensure

saturation of the categories, three additional informants

were included. However, the researchers were aware that

inclusion of even more informants might have provided

additional data.

Conclusions

The study has highlighted the great importance of relatives’

role in the patient participation process, to secure the well-

being of residents living in SCUs. Our findings stress the

uttermost need for a high degree of competence, interest and

commitment among the personnel together with a well func-

tioning, collaborative and cooperative relationship between

the personnel and the relatives of persons with dementia.

However, the care system cannot demand relatives to be



AK Helgesen et al.

active in the patient participation process, and personnel

cannot disclaim all responsibility for the resident’s well-

being. Relatives must be prepared for the new challenges

that the progression of dementia will bring and how this

progression may have an impact on their role. The study

raises several important questions that emphasise that more

research is needed. As this study had a qualitative approach,

it would be valuable to study relatives’ perceptions of their

role in the patient participation process also by quantitative

means, for example, using a survey, to obtain information

from a great amount of respondents.

Relevance to clinical practice

Relatives need to be seen and treated as a resource in

dementia care as they may play an important role in the

patient participation process to secure the residents’ well-

being. However, as their participation may become a heavy

burden for them, their well-being must also be considered

by the professionals. Interventions that support relatives in

their role in the participation process in the later stages of

the disease would be valuable.

More attention should be paid to initiating better cooper-

ation between the personnel and the relatives, as this may

have a positive impact both on the residents’ and the rela-

tives’ well-being. A well functioning, collaborative and

cooperative relationship between the personnel and the

relatives can also aid the personnel in their attempts to

provide high-quality dementia care.

Acknowledgements

The authors are grateful to the relatives who participated

and shared their experiences.

Contributions

Study design: AKH, ML, EA; data collection and analysis:

AKH, ML, EA and manuscript preparation: AKH, ML, EA.

Conflicts of interest

All of the authors declare that no conflicts of interest exist.

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How do relatives of persons with dementia experience their role in the patient participation process...

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