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PATIENT EXPERIENCE AND SATISFACTION

Factors that influence user satisfaction: tracheotomised home


mechanical ventilation users experiences
Dagrunn N Dyrstad, Britt S Hansen and Evy M Gundersen

Aims and objectives. To describe the self-reported life situation of users totally dependent on home mechanical ventilation
(HMV) after tracheotomy and to identify factors associated with user satisfaction.
Background. HMV users are a small but growing group in society and among the most vulnerable individuals with chronic
disabilities. The participants in the present study belong to an even more susceptible minority of this group, as they require
round the clock ventilation at home through a tracheostomy, implying the need for continuous care. Their testimonies are
important for the generation of new knowledge.
Design. A qualitative design using interviews.
Methods. Individual interviews were conducted with six participants and analysed by qualitative content analysis.
Results. The main theme that emerged different individual needs require a range of approaches was based on three sub-themes:
(1) Tailored information (2) Sensitivity in decision-making and (3) Building trust and confidence. Information was perceived as
crucial and participants described different experiences of receiving optimal information to not receiving information at all.
Successful collaboration was perceived when the user was given the opportunity to participate in decision-making about her/his
treatment and care, where to live and how to organise daily life. Trust and confidence in the caregivers were important.
Conclusion. The participants highlighted the need for strategies to improve satisfaction. Their experiences varied depending
on age, where they lived, who they encountered in the healthcare system and the level of family support. Our findings sug-
gest that patients who perceive themselves as well informed at an early stage are more satisfied with treatment, decisions
about their tracheotomy and their life situation.
Relevance to clinical practice. There is a lack of knowledge among healthcare providers, thus tailored, high competence and
guidelines are required.

Key words: decision-making, home mechanical ventilator users, influence, tracheotomy, user involvement, user participation

Accepted for publication: 24 June 2012

a growing interest in the quality of life of patients with neu-


Introduction
romuscular diseases and chest wall deformities have
Home mechanical ventilation (HMV) is a relatively new, improved the situation of HMV users. HMV can facilitate
expensive and highly specialised treatment used by a small a more normal community-based lifestyle as opposed to in-
number of patients. Advances in ventilator technology and stitutionalisation for ventilation-assisted individuals who

Authors: Dagrunn N Dyrstad, MNSc, ICCN, PhD Candidate, versity Hospital, Stavanger; Evy M Gundersen, ICCN, MNSc,
Department of Health Studies, Faculty of Social Sciences, Univer- Assistant Professor, Department of Health Studies, Faculty of
sity of Stavanger, Stavanger and Department of Anaesthesiology Social Sciences, University of Stavanger, Stavanger, Norway
and Intensive Care, Stavanger University Hospital, Stavanger; Britt Correspondence: Dagrunn N Dyrstad, PhD Candidate, Department
S Hansen, ICCN, PhD, PostDoc, Department of Health Studies, of Anaesthesiology and Intensive Care, Stavanger University Hospi-
Faculty of Social Sciences, University of Stavanger, Stavanger and tal, Stavanger, Norway. Telephone: +4793676824
Department of Anaesthesiology and Intensive Care, Stavanger Uni- E-mail: dagrunn.n.dyrstad@uis.no

2012 Blackwell Publishing Ltd


Journal of Clinical Nursing, 22, 331338, doi: 10.1111/j.1365-2702.2012.04304.x 331
DN Dyrstad et al.

are clinically stable (Brooks et al. 2004). HMV users repre- to participate in decision-making is demanding because
sent a small but growing group in society and are among patients are not always capable of judging the medical
the most vulnerable individuals with chronic disabilities treatment offered to them or understanding the terms used.
(Stuart & Weinrich 2001). Health care can only be provided with the patients consent
Lloyd-Owen et al. (2005) found that the estimated preva- (The Patients Rights Act 1999). For consent to be valid,
lence of HMV in Europe is 66 per 100,000 people. The the patient must have received the necessary information
national treatment for HMV in Norway was approximately about her/his condition and the content of the care offered.
199/100,000 in 2008 and their need for ventilation varies Lindahl et al. (2003) found that there is a lack of knowl-
considerably. Most HMV users in Norway only use face- edge about HMV in the healthcare system and that HMV
mask ventilation at night (Tollefsen et al. 2009). A minor- patients feel they are encountered with uncertainty and fear
ity (10%) are totally dependent on ventilatory support. on the part of healthcare providers. Individual attitudes
Previous research has mainly investigated HMV users as about HMV, especially among neurologists, seem to play a
one group, with focus on treatment and family experiences. role in whether the patient is offered this form of treatment
However, few studies have explored the small group of (Dybwik et al. 2010). Building competence is therefore
HMV users dependent on round the clock ventilator sup- important. According to Hamalainen et al. (2003), HMV
port through a tracheostomy. The participants in the pres- users who did not participate in decision-making were more
ent study belong to this vulnerable minority who are frequently older people, women and those on a lower
ventilated round the clock at home, through a tracheos- income. The overall purpose of this study was to describe
tomy, implying the need for continuous care and attention. the self-reported life situation of users totally dependent on
Communication is a challenge because the tracheostomy is home mechanical ventilation after tracheotomy and to iden-
placed under the vocal cords, making speech difficult. How- tify factors associated with user satisfaction.
ever, new technology and techniques make communication
possible (Rolltalk; Abilia, Risr, Norway, Lightwriter;
Methods
Toby Churchill Ltd, Cambridge, UK, speech valve, etc.). It
is important to find ways of including HMV users in Owing to the aim of the study, a descriptive, explorative
research because their testimonies are important for the design was agreed upon and qualitative one-to-one inter-
generation of new knowledge. views were conducted with six HMV users in their homes
According to Norwegian law (The Patients Rights Act in 2009. The inclusion criteria were dependency on round
1999), patients are entitled to receive relevant healthcare the clock ventilation at home through a tracheostomy. The
and treatment-related information from the health service. participants were recruited by a physician specialised in
This means that the Specialist Health Service is responsible HMV and provided with written information about the
for the supervision of care assistants in the community and purpose and method of the study, the fact that participation
for providing patients and their families with the informa- was voluntary, that they were free to withdraw at any time
tion necessary to take part in decision-making. In a recent (The World Medical Association Declaration of Helsinki
study, Dybwik et al. (2010) found considerable variation in 2008) and that full confidentiality was guaranteed. Three
the treatment offered to this patient group. They concluded male and three female HMV users agreed to participate.
that a lack of or uneven distribution of committed health The semi-structured interviews lasted from 3050 minutes
professionals with specific competence and interest in HMV and were conducted by the main author, an experienced
was the main reason for this variation (Dybwik et al. ICU nurse, in the HMV users homes. The participants gave
2010). permission for the interviews to be audio-taped.
This patient group often lacks the information needed to
participate in decision-making (Ingadottir & Jonsdottir
Participants
2006). User participation is understood as the extent to
which the patients (HMV users) viewpoints should be The participants ranged in age from 3778 years, while
taken into account when making decisions about services their experiences of HMV ranged from two to over
(Hansen et al. 2004). User participation is broadly reflected 10 years. They represented a range of diagnoses and levels
in Western government policy (Bradshaw 2008) and con- of functioning, but were all dependent on round the clock
tributes to the belief that healthcare consumers should have ventilation through a tracheostomy and unable to work.
a choice and express opinions about the care they receive During the interviews, they communicated by means of aids
(Stringer et al. 2008). Providing the necessary information such as Rolltalk (Abilia), which is a computer controlled

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332 Journal of Clinical Nursing, 22, 331338
Patient experience and satisfaction Tracheotomised HMV users experiences

by a joystick or the users eye, a type writer with a voice individual needs require a range of approaches, was based
such as Lightwriter (Toby Churchill Ltd) or a speech on three sub-themes; (1) Tailored information (2) Sensitiv-
valve. None of the interviews were repeated because of the ity in decision-making and (3) Building trust and confi-
participants breathing and speech problems. dence. The sub-themes are presented individually below.

Ethical considerations Tailored information

The Norwegian Social Science Data Services approved (no. Tailored information was perceived as crucial for decision-
20631) the data collection and storage. The project was making. The participants described a variety of information
exempted from review by the Regional Committee for Medi- strategies, from receiving optimal information to not receiv-
cal and Health Research Ethics of western Norway (2008/ ing information at all. The information provided was not
13567-YSV) and approved by the Faculty of Social Sci- always based on the HMV users needs. Some were satisfied
ences, Department of Health and University of Stavanger. and one HMV user stated:

Yes, I got the information about tracheotomy, we were well pre-

Data analysis pared.

The data were analysed by means of qualitative content We bought a new apartment. It was too small, as we didnt know
analysis (Graneheim & Lundman 2003). This process has that the team was entitled to a room for the team members use.
several steps. After reading the interview texts several times,
the meaning units that emerged were condensed, which Others experienced that their health situation suddenly
ensures preservation of the core meaning. The sub-themes changed for the worst when they became a patient in the
and themes were created by abstraction of the condensed intensive care unit (ICU) with a tube or a tracheostomy
meaning units. The authors discussed various alternatives connected to a ventilator. They were not aware that acute
to reach consensus on sorting and labelling (Table 1). respiratory failure could occur because of their condition or
diagnosis. One of them said:

I was not sure if the tracheostomy would be there permanently or


Results
if I would be able to speak through it. I was looked after by my
The participants were invited to describe their hospital stay mother and my sister; they helped me.
when HMV was initiated as well as their life situation after
Another participant expressed:
discharge. The results indicated that participation in deci-
sion-making about their care at an early stage of the disease I woke up with a tracheostomy and a tube in my stomach. They
was important. The main theme that emerged; Different said that they informed me, but I dont remember anything.

Table 1 Data analysis, different individual needs require a range of approaches

Meaning unit Condensed meaning unit Sub-themes Theme

I was invited to participate and given the choice to live with I was given several choices. Decision-making Sensitivity in
other HMV users. I chose to remain in my own apartment; was based on users decision-
the healthcare workers did not make the decision. A wishes. making.
healthcare team was organised for me.
I wanted to live at home and we (informant and husband) were We were involved from the Decision-making
involved in decision-making from the beginning. We had to beginning but had to push for was perceived as
push to achieve the best solution and speed up the process. the best solution. demanding.
In my experience, the healthcare personnel decided I had to Healthcare workers decided as we Unable to make
move to a nursing home. My family and I were in shock and were in shock and unable to decisions.
unable to make a decision. participate.
I had no choice. They said that a nursing home was the only I had no choice. They did not ask Excluded from
solution. They did not ask me. I was not prepared for this. me and my family. decision-making.
The decisions were often made before my family and I were
informed. A nursing home is not the best solution. I am not
satisfied. I wanted to live at home.

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DN Dyrstad et al.

important since my ability to communicate is reduced. Talking over


Sensitivity in decision-making
my head is very frustrating.
The HMV users highlighted the importance of making their
Another participant was concerned about the care assis-
own decisions and being taken seriously. Successful collabo-
tants lack of interest in him as a person:
ration was perceived when the user was given the opportu-
nity of participating in decision-making about her/his Some care assistants are more concerned about the ventilator than
treatment and care, where to live and how to organise daily me.
life. Some of the participants in this study were invited to
participate in decision-making about where to live after their Patients like me are dependent on the care assistants for help. It is
hospital stay while others were not, as illustrated in Table 1. therefore important that they know me and my disease.
The importance of good collaboration between the user,
Some participants worried about their own safety
her/his family and professionals from the hospital, nursing
because they did not trust the care assistants competence.
home and community was highlighted. Some users experi-
When the latter expressed insecurity and lack of knowl-
enced satisfactory collaboration, whereas others wanted it
edge, the HMV users felt insecure. One participant stated:
to start earlier. Several participants experienced that the
community was informed too late to plan and form a team Some care assistants dont know how to give me food through the
of care assistants and order aids such as a ramp, lift and feeding tube; they feed me too quickly, although I have told them
toilet for disabled people. that it causes me stomach problems. That makes me insecure. Its
The need to participate in organising activities of daily important that the assistants are well trained and have sufficient
life was expressed: competence for me to feel secure.

Its important for me to participate in the decision to employ new One participant expressed:
care assistants. I also want to take part in decisions about the time
The best is a small group of eight care assistants. Previously, 15
at which I go to bed, take a shower and visit the toilet, what
care assistants came, and those who were here frequently gained
clothes I wear, etc.
experience, whereas the others were more of a burden to me. They
The HMV users who lived in their own homes expressed were very insecure.
satisfaction with their life situation, whereas those residing
in nursing homes did not. Social life seemed to be better in
Discussion
ones own home and a participant commented:
This study aimed to describe how this vulnerable group of
I live at home in my own surroundings with my husband. We have
HMV users, dependent on round the clock ventilation at
many friends who visit us and therefore it feels like the good old
home, perceived their life situation and to identify factors
days. Almost as good as before.
associated with user satisfaction to improve quality of care.
The participants described the hospital stay when HMV was
initiated and their life situation after discharge, which ran-
Building trust and confidence ged from living at home (with family or in their own flat)
with 24-hour assistance from caregivers to living in a nurs-
The participants believed that it is important to feel safe when
ing home. The overall results demonstrate that a variety of
ones health and strength are impaired. Their diseases were
approaches is required to meet individual needs in terms of
progressing, the need for care was increasing and their situa-
(1) Tailored information (2) Sensitivity in decision-making
tion varied from day to day. Continuity and a high level of
and (3) Building trust and confidence. The participants high-
competence on the part of the care assistants were perceived
lighted the need for strategies to achieve satisfaction. Their
as crucial for trust and confidence. One participant reported:
experiences varied depending on where they lived, who in
Its very important for me to approve the employment of new staff the healthcare system they interacted with and the level of
members, to be involved in their training programme and the plan- family support. Information about prognosis, treatment
ning of their work schedule. choices and legal rights (where to live and level of care) is
important for making the right decision.
Another participant expressed:
Tailored information is important to meet each HMV
Its important that the care assistants listen carefully, even if it users needs. Because this patient group has problems com-
takes time for me to express myself. It has become increasingly municating, it is easy for care assistants to misunderstand

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334 Journal of Clinical Nursing, 22, 331338
Patient experience and satisfaction Tracheotomised HMV users experiences

them. They need time to express themselves and often use medical technology is transferred to a patients home as
few words because speech is exhausting. One participant well as a risk that hospital traditions and routines will
underlined the importance of being listened to, even if it influence daily life. The need for 24-hour care from care
took time for her to express herself. Respect, time and assistants can turn the home into a workplace because they
understanding are crucial. Communication both before and may require a room for themselves (office) and therefore
after the tracheotomy and HMV may be challenging. It is take up space and disrupt daily family life. Healthcare pro-
sometimes difficult for care assistants to understand that viders must not put pressure on the family and should
these patients have normal feelings, thoughts and reactions attempt to find a solution that both the HMV user and her/
and that only their muscles have failed (Lindquist 2004). his family can accept and live with. As demonstrated in this
Some users were satisfied with both the timing and the study, there are few choices regarding where and how to
information provided. They were also content with the way live when a patient is HMV dependent. All participants sta-
hospital and community care assistants collaborated and ted that living at home with full-time care assistance is the
involved them in decision-making. Others experienced that best alternative. A nursing home was perceived as the only
they had to work hard to obtain the information and assis- alternative to living at home, but in such cases, the users
tance to which they were entitled. They described involve- were not involved in the decision-making process. Two of
ment in planning as very demanding, especially during the six participants experienced that living at home was
acute situations such as hospitalisation, tracheotomy and not an alternative; they ended up in a nursing home, but
ventilator treatment, when the whole family was in shock. their satisfaction was not evaluated by the healthcare pro-
Each individuals need for information may differ because viders. One of these participants, an elderly woman,
of the character of the disease and her/his unique life situa- described her adaptation to life as a nursing home patient,
tion. It is important to be aware of this, and individual although she wanted to live at home. She was one of many
strategies are therefore necessary. The extent to which the patients and had to wait her turn. However, the care assis-
users perceived themselves as able to participate in deci- tants were kind and treated her well. The other participant
sion-making had a major impact on their life situation. who lived in a nursing home, an elderly man, was depressed
One participant explained that he did not know that and expressed dissatisfaction and hopelessness. This sup-
acute situations such as requiring a tracheostomy could ports the findings of Hamalainen et al. (2003) that patients,
occur. Others described the shocking experience of waking often elderly, who are excluded from the decision-making
up with a tracheotomy, without any information about process, are less satisfied with their quality of life. The par-
what it is and why it was there. One participant stated that ticipants living at home highlighted the importance for their
his family received the information about tracheotomy on well-being of being able to choose when to go to bed, what
his behalf. Although the accounts may reflect the unpredict- to wear, when to have visitors and how to spend the day.
ability of acute situations, they nevertheless underline the They cherished these choices, but the HMV users living in
importance of the patient receiving relevant, balanced and nursing homes did not have the same opportunities.
adequate information about the tracheotomy on several It is important to include the HMV users families and to
occasions, along with information about the progression of understand their perceptions of the situation and how it
the disease. Realistic information is crucial for user involve- could be improved. The economic situation and healthcare
ment in decision-making. The participants described their plans vary from region to region and affect the provision of
involvement in different ways: as a success, non-existent or healthcare services. When offered a place in a nursing home,
very demanding and all had different stories to tell. one participant explained how her family moved her to
It is important to listen to the patients experiences and their part of the country, where HMV users were provided
wishes, underlining the importance of sensitivity in deci- with better living conditions. Internationally, there is wide
sion-making. The familys voice is also vital because living variation between the hospitals, institutions, out-patient and
with an HMV user can be demanding. Bringing the patient rehabilitation centres that initiate and prescribe HMV and
home requires the presence of high technology in the coordinate HMV services (Lloyd-Owen et al. 2005).
domestic environment, something that has the potential to The findings of this study underline the importance of a
create pressure for both the HMV user and her/his family nationwide discussion because the local economy and the
(Fitch & Ross 1998). Dybwik et al. (2011a) found a large level of family support seem to have a strong influence on
gap between what families expect and what the community the life situation of HMV users. People about to begin
healthcare services can provide. According to Lindahl ventilator treatment may experience their situation in
et al. (2005), there may also be concerns about safety when fundamentally different ways; the consequences of their

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DN Dyrstad et al.

way of viewing life may vary and the optimal solution for and an HMV user. She highlighted the importance of
the HMV user, her/his family and society will differ. participating in the training of her own team and was dis-
There is a need for more information on the different dis- concerted by the lack of research on the homecare of HMV
eases leading to HMV treatment. One of the participants users and the absence of knowledge and ability to deal with
expressed frustration about care assistants who lacked the daily challenges they face. Ballangrud et al. (2008)
knowledge of his disease and spoke over his head, treating reported that personal assistants trained by the users them-
him as if he was mentally impaired. Our findings suggest selves seemed to better meet users individual needs, which
that patients who perceived themselves as well informed at should be taken into account in the future planning of
an early stage were the most satisfied with treatment and health services for HMV users.
decisions made about their tracheostomy and life situation.
To improve the well-being of this group of patients, the
Conclusion
Specialist Health Service should initiate an information
strategy as early as possible involving the patients, their Information about prognosis, treatment choices and legal
families and the Community Health Service. In a frag- rights is crucial for user involvement in decision-making.
mented healthcare system, coordinated information is nec- Living at home with full-time care assistance was considered
essary and can be the basis for cooperation across different the best alternative. A nursing home was perceived as the
disciplines (Kjellevold 2005). only alternative to living at home, but also as the outcome
The third factor perceived as important for HMV user of a decision made without user involvement. The overall
satisfaction was building trust and confidence in the care- results revealed one main theme; Different individual needs
givers. The users in this study were surrounded by technical require a range of approaches, which was based on three
equipment, and it was important for them to be able to sub-themes; (1) Tailored information (2) Sensitivity in deci-
trust the competence of the care assistants. They perceived sion-making and (3) Building trust and confidence. The par-
it as frustrating when the care assistants had no ventilator ticipants highlighted the need for strategies to improve
knowledge and were concentrating on the ventilator only. satisfaction. Their experiences varied depending on age,
Incompetent care assistants gave dependent HMV users a where they lived, who they encountered in the healthcare
terrible feeling of insecurity. Having a chronic disease and system and the level of family support. Our findings suggest
being dependent on HMV made them vulnerable. Accord- that patients who perceive themselves well informed at an
ing to Lindahl (2010) and Hirano et al. (2006), HMV early stage are more satisfied with treatment and decisions
treatment generates a strong need for trust and confidence made about their tracheotomy and life situation. Patients at
in the caregivers because the ventilator is seen as represent- risk of being ventilator dependent and their families need
ing both freedom and imprisonment. Brooks et al. (2004) both practical and medical information about what to
found that information and staff training are necessary and expect. Tracheostomy and ventilator dependency knowledge
important, as they influence the HMV users quality of life. is important for enabling them to make decisions in advance
It is crucial that care assistants dealing with patients who or at least to start thinking about the future.
require HMV and related services are competent. According To improve satisfaction, the Specialist Health Service
to Dybwik et al. (2011b), municipalities often recruit unli- should initiate an information strategy as early as possible,
censed care assistants, despite the fact that HMV users need involving patients, their families and the Community Health
tailored, high competence. Service. Healthcare providers should be aware of the funda-
The participants highlighted the need for training, guide- mentally different ways in which HMV users experience the
lines and continuity. One long-time HMV user had experi- situation, that their perspective on life varies and that the
enced teams of 15 and 8 care assistants and nurses and was optimal solution for each user and her/his family will differ.
of the opinion that smaller teams made up exclusively of
nurses were best. He was involved in hiring new team
Study limitations
members and described continuity as crucial, stating that
his current team was optimal, being both competent and The participants in this study are considered vulnerable
stable. He felt in charge of his own life and was very satis- because they experience breathing difficulties and are totally
fied; I even get strawberries in winter. His satisfaction is dependent on healthcare technology. According to Lindahl
consistent with the observations of Lindahl et al. (2003), (2010), such persons are often considered the most exposed
who linked caregivers competence with users feelings of and powerless of all individuals with chronic disabilities,
security. Stuban (2010) has long experience as both an RN thus interviews could be regarded as intrusive and energy

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336 Journal of Clinical Nursing, 22, 331338
Patient experience and satisfaction Tracheotomised HMV users experiences

consuming. It is important to find ways of including them lems is challenging. We found that a variety of approaches
in research because their testimonies are of interest for the is necessary because their diseases are in progress, their care
generation of new knowledge. A flexible study approach needs are increasing and their situation varies from day to
was therefore chosen to enable the HMV users to partici- day. Continuity is crucial for trust and confidence. There is
pate. Other possible limitations are sample size, lack of sat- a lack of knowledge among healthcare providers and tai-
uration and the fact that the participants varied in terms of lored, high competence and guidelines are required. It is
age, gender and diagnosis. However, these variations may important for HMV users to participate in organising the
contribute to the breadth and thereby enhance the credibil- activities of daily living.
ity of the data in this exploratory research project. The
small sample size was attributed to difficulties recruiting
Acknowledgements
HMV users from this minority group, the members of
which are totally dependent on 24-hour ventilator support. The authors wish to thank the HMV users for their gener-
ous contribution to this study. We would also like to thank
Dr. Philos Bjrg Karlsen at the University of Stavanger for
Relevance to clinical practice
valuable advice. The project was financially supported by
Care assistants should be aware of the fundamentally differ- The Stavanger Healthcare Research Foundation.
ent ways in which HMV users experience the situation, that
their way of viewing life varies and that the optimal solu-
Contributions
tion for each user and her/his family will differ. However,
this group has in common dependency on round the clock Study design: DND; data collection and analysis: DND,
ventilation at home. To improve satisfaction when deciding BSH, EMG and manuscript preparation: BSH, EMG, DND.
whether or not to choose a tracheostomy and where to live,
an information strategy should start early and involve the
Conflict of interest
patients, their families and community healthcare services.
This study is important because communication with tra- There is no conflict of interest associated with the publica-
cheotomised HMV users with breathing and speech prob- tion of this study.

References
Ballangrud R, Bogsti WB & Johansson IS system: families caring for ventilator- does not participate? Health Expecta-
(2008) Clients experiences of living at dependent children and adults with tion 6, 118127.
home with a mechanical ventilator. complex health care needs at home. Hansen T, Hatling T, Lidal E & Ruud T
Journal of Advanced Nursing 65, 425 BioMed Central Health Services (2004) The user perspective: respected
434. Research 11, 156163. or rejected in mental health care?
Bradshaw PL (2008) Service user involve- Dybwik K, Nielsen EW & Brinchmann BS Journal of Psychiatric and Mental
ment in the NHS in England: genuine (2011b) Home mechanical ventilation Health Nursing 11, 292297.
user participation or a dogma-driven and specialised health care in the com- Hirano YM, Yamazaki Y, Shimizu J,
folly? Journal of Nursing Management munity: between a rock and a hard Togari T & Bryce TJ (2006) Ventilator
16, 673681. place. BioMed Central Health Services dependence and expressions of need: a
Brooks D, King A, Toonack M, Simson H, Research 11, 115122. study of patients with amyotrophic
Gould M & Goldstein R (2004) User Fitch MI & Ross E (1998) Living at home lateral sclerosis in Japan. Social Science
perspectives on issues that influence on a ventilator. Official Journal of Medicine 62, 14031413.
the quality of daily life of ventilator- Canadian Association, Critical Care Ingadottir TS & Jonsdottir H (2006) Tech-
assisted individuals with neuromuscu- Nursing 9, 1824. nological dependency the experience
lar disorders. Canadian Respiratory Graneheim U & Lundman B (2003) Qualita- of using home ventilators and long-
Journal 11, 547554. tive content analysis in nursing research: term oxygen therapy: patientsand fam-
Dybwik K, Tollali T, Nielsen EW & concepts, procedures and measures to iliesperspective. Scandinavian Journal
Brinchmann BS (2010) Why does the achieve trustworthiness. Nursing Edu- of Caring Science 20, 1825.
provition of home mechanical ventila- cation Today 24, 105112. Kjellevold A (2005) Hensynet til brukeren
tion vary so widely? Chronic Respira- Hamalainen PM, Perala M-L, Poussa T & Idealet om brukerorientering
tory Disease 7, 6773. Pelkonen M (2003) Patient participa- i helse- og sosialtjenesten (User involve-
Dybwik K, Tollali T, Nielsen EW & tion in decision-making on the intro- ment in health and social services)
Brinchmann BS (2011a) Fighting the duction of home respiratory care: who In Brukerens medvirkning (Willumsen

2012 Blackwell Publishing Ltd


Journal of Clinical Nursing, 22, 331338 337
DN Dyrstad et al.

E ed.). Universitetsforlaget, Oslo, pp. Lloyd-Owen SJ, Donaldson GC, Ambrosin- informed. American Journal of Nurs-
4971. o N, Escarabill J, Farre R & Fauroux ing 110, 6367.
Lindahl B (2010) Patients suggestions B (2005) Patterns of home mechanical The Patients Rights Act (1999) Norwegian
about how to make life at home easier ventilation use in Europe: results from Board of Health Supervision, Oslo.
when dependent on ventilator treat- the Eurovent survey. European Respi- The World Medical Association (WMA)
ment a secondary analysis. Journal ratory Journal 25, 10251031. (2008) The Declaration of Helsinki.
of Caring Science 24, 684692. Stringer B, van Meijel B, de Vree W & van Available at: http://www.wma.net/en/
Lindahl B, Sandman PO & Rasmussen BH der Bijl J (2008) User involvement in 30publications/10policies/b3/17c.pdf
(2003) Meanings of living at home mental health care: the role of nurses. (accessed 2 May 2012).
on a ventilator. Nursing Inquiry 10, A literature review. Journal of Psychi- Tollefsen E, Gulsvik A & Fondenes O
1927. atric and Mental Health Nursing 15, (2009) Prevalens av hjemmerespirator
Lindahl B, Sandman PO & Rasmussen BH 678683. behandling i Norge Medisin og vitens-
(2005) On becoming dependent on Stuart M & Weinrich SM (2001) Home- kap (The prevalence of home
home mechanical ventilation. Journal and community-based long-term care: mechanical ventilation treatment in
of Advanced Nursing 49, 3342. lessons from Denmark. Gerontologist Norway. Medicine and Science). Tid-
Lindquist UC (2004) Ro uten arer En 41, 474480. sskrift for Norsk Legeforening (The
bok om livet og dden (A Book on Stuban SL (2010) Home mechanical venti- Journal of the Norwegian Medical
Life and Death). Gyldendal Norsk lation. Nurses can be the home users Association) 129, 20942097 [in Nor-
Forlag, Trondheim. best resource, if they become better wegian].

The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard
of clinically related scholarship which supports the practice and discipline of nursing.

For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http://
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Reasons to submit your paper to JCN:


High-impact forum: one of the worlds most cited nursing journals, with an impact factor of 1118 ranked 30/95
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One of the most read nursing journals in the world: over 19 million full text accesses in 2011 and accessible in over
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Positive publishing experience: rapid double-blind peer review with constructive feedback.
Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in
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