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Keywords:

  • clients’ experiences;
  • community care;
  • home;
  • interviews;
  • mechanical ventilation;
  • nursing

Abstract

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

Title. Clients’ experiences of living at home with a mechanical ventilator.

Aim.  This paper reports on a study of how clients experience living with home mechanical ventilation and how they experience care and supervision of healthcare personnel.

Background.  The number of people living at home with mechanical ventilators is increasing, and this is considered a successful approach to reducing incapacity and mortality.

Method.  Qualitative interviews were conducted with 10 service users in 2006. The informants were 18–75 years old and had varying diagnoses and levels of functioning. The interviews were tape recorded, transcribed and analysed by qualitative content analysis.

Findings.  Two main themes emerged: Theme 1. Having a home ventilator enhances quality of life – a life worth living. The ventilator treatment builds up strength and improves well-being. Participants emphasized that it was important to feel in control of their own situation and had an overriding wish to live a normal and active life; Theme 2. Competence and continuity of healthcare personnel are factors for success. The experience was that competence and follow-up by healthcare personnel varied, and that good quality teaching and information were important.

Conclusion.  Users of home mechanical ventilators should be active partners in their own care so that their experience is taken into account. It is important for clients having home mechanical ventilation to be empowered and have control in their daily lives, as well as having competent caregivers and continuity of care.


What is already known about this topic

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References
  • • 
    A rapidly increasing number of people with a wide range of different respiratory problems are using home mechanical ventilation.
  • • 
    Most clients having home mechanical ventilation are satisfied with their quality of life but they experience challenges such as dependence on technology, healthcare personnel and limitations of freedom.
  • • 
    Most research associated with different client groups using home mechanical ventilation has been done from a biomedical approach.

What this paper adds

  • • 
    Autonomy and control over one’s own life situation were important for living a normal and active life with a home mechanical ventilator.
  • • 
    Personal assistants gave clients using home mechanical ventilators freedom and control and were frequently preferred to home care nursing personnel.
  • • 
    Continuity of care by competent healthcare personnel is of prime importance for living a good and active life with home mechanical ventilation.

Implications for practice and/or policy

  • • 
    Users of home mechanical ventilators should be active partners in their own care so that their experience is taken into account.
  • • 
    It is important for clients having home mechanical ventilation to be empowered and have control in their daily lives, as well as having competent caregivers and continuity of care.
  • • 
    Support given by personal assistants, whom the clients themselves have educated, seems to meet users’ individual needs, and this finding should be taken into account when planning future healthcare services for this growing group of clients.

Introduction

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

Home mechanical ventilation (HMV) for people with chronic respiratory failure caused by lung and airway pathologies, chest wall and neuromuscular disease, is a successful method of reducing incapacity and mortality. At the same time the client’s quality of life is improved, and healthcare costs are reduced by making hospitalization unnecessary (Simonds 2003, Farrėet al. 2005, Lloyd-Owen et al. 2005). HMV can be non-invasive, most often via a face mask, or invasive, via tracheostomy (Laub et al. 2006).

Since the polio epidemics of the 1950s, home respiratory aids have been a useful means to increase survival rates for clients with chronic breathing problems, and the numbers in need of HMV are increasing (Bach 2002, Farrėet al. 2003). A study of 16 European countries shows the estimated prevalence of HMV to be 6.6 per 100,000 people, with the highest prevalence in France, Denmark, Sweden, Portugal, Norway and Finland (Lloyd-Owen et al. 2005). The Norwegian national HMV register from 2006 shows a prevalence of 18.9 per100,000 inhabitants, with the most marked increase in the people with lifestyle diseases such as chronic obstructive pulmonary disease and the Pickwick syndrome. However, there are major differences in treatment and record-keeping methods throughout the European countries (Lloyd-Owen & Wedzicha 2002, Simonds 2003).

Background

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

Starting a HMV presents a new and challenging life situation for clients and studies have shown that they experience the adaptation process very differently. The changes are psychological, physical, spiritual and existential (Fitch & Ross 1998, Brooks et al. 2004, Lindahl et al. 2005), and include dependence on technology, dependence on healthcare personnel and limitations in mobility and freedom (Goldstein et al. 1995, Brooks et al. 2004). These challenges are tackled better when clients becomes familiar with the equipment and their new situation, but success is connected with the information and supervision provided by healthcare personnel (Fitch & Ross 1998, Lindahl et al. 2003). Quantitative studies measuring quality of life have shown that HMV users maintain good psycho-social functioning and see themselves as being in comparatively good health (Pehrsson et al. 1994, Gelinas et al. 1998, Narayanaswami et al. 2000, Markstrőm et al. 2002, Domenech-Clar et al. 2003), but again this depends on good care provided by competent healthcare personnel (Gelinas et al. 1998, Lindahl et al. 2003, Brooks et al. 2004).

Qualitative studies where users of HMV have been interviewed reveal that clients regard the healthcare personnel involved as having too little knowledge and experience of their complex needs (Lindahl et al. 2003, 2006, Brooks et al. 2004). Personnel with backgrounds in the biomedical model have a long tradition of their expert knowledge being all-important in making decisions about people with chronic diseases. This is in spite of the fact that they themselves advocate the importance of service user participation (Opie 1998, Paterson 2001). Health care today is in the process of change, and the role of expert in the management of chronic illness is increasingly important in healthcare policy and delivery (Fox 2005). For example, official Norwegian documents make recommendations on an all-embracing healthcare service across management boundaries, focussing on user cooperation. Often the most susceptible and troubled clients are those in greatest need of a healthcare service organized along these lines (Norwegian Official Reports (2005), Report to the Storting No. 25 (2005–2006)). This includes those using HMV, who may be characterized as a vulnerable and exposed group (Stuart & Weinrich 2001) who are dependent on being offered comprehensive health support.

An examination of the literature reveals that there are relatively few studies describing clients’ experiences of what it is like to live with HMV at the expense of that of healthcare professionals.

The study

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

Aim

The aim of this study was to increase understanding of how clients experience living with HMV and how they experience care and supervision healthcare personnel.

Design

An inductive qualitative approach and the data were collected by interviews.

Participants

The initial invitation to participate in the study was made by regional staff (specialist nurses and physicians) working at the Norwegian Centre for Home Mechanical Ventilation, who mailed a request and information about the study to potential participants. We had no prior acquaintance with the group. Criteria of inclusion were formulated with a view to getting a broad spectrum of experiences. Informants were to be aged 18 years or over, and represent both women and men and a distribution of diagnoses and levels of function. All were to have been using HMV for more than 6 months and be able to communicate orally. Of the 20 clients who were asked to participate, three women and seven men, aged 18–75 years, agreed and took part in the interviews.

Data collection

The data were collected from March to June 2006. A pilot interview was done beforehand and this resulted in some modification of the questions. The time and place for the 10 interviews were agreed by telephone and all the informants wished them to be conducted in their own homes.

The interviews started with some initial questions to provide background data and then informants were asked to give an account of their experiences of HMV. The main question was ‘What does it involve for you in your daily life to be dependent on HMV?’ In addition, the clients were asked to describe their experiences:

  • • 
    associated with the introduction of home ventilator treatment
  • • 
    with regard to teaching given by healthcare personal
  • • 
    with regard to follow-up support from hospital and community healthcare staff.

Finally, they were asked to give recommendations of their own wishes on the way teaching and follow-up should done to promote as good a life as possible.

The interviews lasted for 40–60 minutes and were adapted to the individual condition of the informants. Both authors took part in the interviews; one interviewed, while the other wrote process notes to evaluate and improve the interviews. All interviews were tape-recorded and manually transcribed verbatim.

Ethical considerations

The study was approved by the appropriate ethics committee and carried out in accordance with Ethical Guidelines for Nursing Research in the Nordic Countries (2003). Information to informants was given in writing and repeated orally prior to starting the interview. Assurances were given that all data would remain confidential, that participation was voluntarily and that participants had the right to withdraw at any time. Observation of participants’ general state of health was an important consideration, as some developed breathing problems from talking for too long. Participants were given an opportunity to a talk about feelings that could have arisen from the interview situation, if required.

Data analysis

The transcripts were subjected to content analysis focused on both the manifest and latent content. What the text literally ‘says’ was linked to the manifest content, whereas what the text ‘talks about’, what the reader understands by it, was linked to the latent content (Graneheim & Lundman 2004). With this as a starting point, the analysis was carried out in the following manner:

  • • 
    Each interview was read through repeatedly to gain an overview and general impression.
  • • 
    Content areas were identified and selected in words and phrases that dealt with experiences about living with HMV, and experiences with teaching and follow-up.
  • • 
    Units of meaning were identified and condensed.
  • • 
    Codes were formulated and marked according to pagination to ease retrieval within the text for checking if needed.
  • • 
    The codes were assessed with respect to similarity and difference and sorted into subcategories.
  • • 
    Coherent subcategories were sorted under categories (manifest content).
  • • 
    From the categories, two themes emerged (latent content).

Rigour

The participation of all authors throughout the phases of the data acquisition and transcription process was regarded as a quality assurance mechanism. Every interview situation was discussed and evaluated afterwards, which gave the opportunity to make improvements at an early stage. All authors were also involved in all steps of the analysis process, and the codes and categories found were discussed and re-examined in the research team.

Findings

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

A description of the sample is shown in Table 1. This shows that four out of ten had respiratory support via a tracheostomy and six used masks. Six of the informants were in need of respiratory support only at night, but the rest needed it full time. Just two of the informants did not have additional aid from the community and home-based care services. Out of the eight receiving additional aid, seven had access to personal assistants (PAs), and three had a PA combined with other measures. The average treatment time with HMV was 8.1 years.

Table 1.   Participant characteristics
ParticipantDiagnosisNumber of years using HMVExtent of HMV treatmentSupport viaCommunity health serviceHospital health service Lives with Family/work
  1. DMD, Duchenne Muscular Dystrophy; CMT, Charcot-Marie-Tooth syndrome; SMA, Spinal Muscular Atrophy; MS, Multiple Sclerosis; MD, Muscular Dystrophy; HMV, Home Mechanical Ventilation; PA, Personal assistants.

1DMD7Night/parts of day Nose maskPA day/eveningYesYes/Unemployed
2CMT2, 5NightNose maskPA some hours a week/home aidYesNo/Unemployed
3Limb Girdle1NightNose/mouth maskNoYesYes/Unemployed
4SMA9NightNose maskPA full-timeYesNo/Student
5MS15Night/parts of dayTracheostomyPA day/afternoonYesYes/Unemployed
6DMD0, 5NightNose/mouth maskePA day/home nursing at nightYesYes/Student
7MD12Full-timeTracheostomyPA full-timeYesNo/Retired
8Polio-myelitis20Full-timeTracheostomyPA full-time/home nursingYesYes/Retired
9MD8NightTracheostomyHome nursing + support person once a weekYesNo/Unemployed
10Pickwick syndrome6NightNose maskNoYesNo/Retired

Two main themes were identified in the analysis, and these two themes are described by five categories and ten subcategories. An overview of these themes, categories and subcategories is presented in Table 2a,b.

Table 2.   (a) Experiences of living with home mechanical ventilation. (b) Having home mechanical ventilation: experiences with supervision and follow-up
(a)
Theme 1The home ventilator enhances quality of life – a life worth living
CategoryThe significance of the respirator for the patient’s strength and well-beingControl of own life situationTo live a normal and active life
SubcategoryHard at the outset,  but becomes a habitImproved respiration  gives everyday energyTo be in control  is importantPersonal assistants give freedom and controlLeisure activities, family and friends – important parts of lifeDependence on a ventilator sets challenges in life
(b)
Theme 2Competence and continuity of healthcare personnel as factors for success
CategoryVaried competence among and follow-up by health-care personnelThe significance of instruction and information
SubcategoryContentment with follow-up by the health serviceContentment with ventilator, other equipment and service Instruction in the initial phaseAccess to information and sharing of knowledge and experience

Main Theme1: the home ventilator enhances quality of life – a life worth living

The informants’ experience was that ventilator treatment saves life physically because some service users are completely dependent on the respirator to continue living. At the same time, the fact that the treatment takes place at home instead of in an institution greatly enhances their quality of life. The technical part of ventilator treatment was found comparatively uncomplicated to relate to. What really had an impact on the life situation of the individual was to what extent they perceived themselves to be empowered and to have control over their everyday life. Furthermore, they were enabled to perform what they described as normal activities. This was closely linked to the support they received and the extent to which it was adapted to their individual needs. This main theme consists of three categories: The significance of the respirator for the person’s strength and well-being, Control of one’s own life situation and to live a normal and active life.

The significance of the ventilator for the person’s strength and well-being

Informants experienced starting on ventilator treatment as frightening. They associated a ventilator with seriously-ill people in the terminal phase of life. To let the machine ‘take over’ their breathing took a little time getting used to:

I was completely panic-stricken because I thought I was going to lose my breath.

However, interviewees pointed out that starting on ventilator treatment was neither dangerous nor sinister and that no one should be afraid to try it:

You have everything to gain by it.

and

It was clear that it was hard at the outset, but became a habit.

Once the adaption phase was over, breathing, and thus the whole life situation, was felt to be improved. Symptoms such as headaches and weariness were reduced and improved respiration gave more everyday energy:

Then I woke up in the morning and felt like a new human being.

The ventilator became such a natural part of everyday life that it was no longer associated with serious illness. On the contrary, informants reported that most of the time they felt healthy and were happy about their state of health.

Control of one’s own life situation

Participants were in need of help in varying degrees and ways, and it was very important to be in control and to have as much influence as possible on how and when this aid was offered. Informants possessed a great deal of knowledge about their own conditions, equipment and their own rights. This enabled them to stand on equal terms in discussions about their own situations. It was pointed out that PAs gave freedom and control. These assistants were assigned according to the needs of the individual and helped in everyday activities such as taking care of basic needs, domestic help and assistance with the ventilator. One informant characterized the PA in this way:

I am very content with them, they put everything in order and the division of labour has come about through cooperation.

Getting used to having people around all the time could be hard, but:

The assistants have realized that they have to be present and absent at the same time and I feel the balance between having a pleasant time together and being allowed to be alone is working very well.

Participants instructed their new PAs themselves in most cases. Alternatively, they were helped in this by their families and other more experienced assistants. In this way, they could provide tuition adapted to their specific needs for help. For instance, one stated:

It is important to teach assistants hygienic habits in order not to contract pneumonia; after all, bacteria could be anywhere.

Several informants owned a car which had to be driven by assistants, family or friends. This was also looked upon as an important contribution to personal independence.

To live a normal and active life

Informants pointed out that they wanted to live as normally as possible and thought that the ventilator should not dominate their lives, in which leisure activities, family and friends were an important part. They had quite normal hobbies adapted to their situation. Some found ventilator treatment put limitations on travelling, while others went abroad without problems. Some preferred well-organized rehabilitation holiday stays. However, it was stressful that travel had to be well planned to avoid problems.

For some, the illness and the ventilator were not felt as limiting at all. Others had adapted their levels of activity to the situation. Still others had become less active than they would have wished to be. Being able to live at home contributed to ‘normalizing’ life. Common routines and activities could be maintained and the wish to minimize dependency on others was fulfilled. Although they were dependent on help, it was important to keep their roles at home and make the assistants ‘invisible’ to be happy having people around them at all times. They also spoke about different challenges which made it difficult to live normally. One said:

Just now I haven’t got much to do, I’m waiting to get a job.

Another said:

It’s tough being dependent on the help of others all the time – most of all I trusted my wife.

Participants generally showed great gratitude for the opportunities the home ventilator gave them. They expressed a very positive attitude to life, but at the same time made it clear that dependence on a ventilator set challenges. Some mentioned the feeling of panic they had that the ventilator might fail, and the fear of this happening had to be tackled at all times. The ventilator could limit their freedom of action, and an increased physical strain called for increased ventilator capacity. They spoke about inconveniences in connection with the use of a mask, and in some cases these were difficult to adjust and could leave less than attractive marks on their faces:

I look completely silly with that mask on.

Others were plagued by the noise of the ventilator, which disturbed their sleep. Those with a tracheostomy were apprehensive that their helpers might not be able to master the suction procedure involved and that the tube might become clogged.

Main Theme 2: competence and continuity of healthcare personnel as factors for success

The quality of competence among healthcare personnel was not measured in number of years of education, but in the ability of the support institution and the helpers themselves to give individually-adapted care, identified by listening closely to the client’s needs and wishes. Continuity was considered important to maintain stable relationships. In addition there needed to be a state of preparedness with regard to the technical equipment to create a feeling of security in the home situation. This main theme consists of two categories: varied competence among and follow-up by healthcare personnel and the significance of teaching and information.

Varied competence among and follow-up by healthcare personnel

Satisfaction with follow-up by the community health service providers could vary, but everyone with a PA found the service to be very good. On the negative, side hiring assistants occasionally caused problems because of the lack of applicants. Some considered home-based nursing to be a less than suitable option, and in one instance this articulated as follows:

You had no idea when you could get up in the morning, when to go to bed or to the loo, and it was terrible! Problems everywhere, and that irritated me.

Participants found home nursing personnel to be short of time and the service they offered was poorly organized, with a lack of continuity and competence. On the other hand, they looked upon the aid of a support person as a good additional measure enabling them to go on excursions, visits to films and other individually-adapted activities.

Doctors and healthcare professionals in hospitals were given credit for having been accessible to when help was needed. Several clients had the same person to relate to throughout their course of treatment. Some enjoyed being looked after in their homes during the hospital–home transition phase, which provided security and continuity. Satisfaction with the ventilator, other equipment and service by the hospitals were as a rule very good. In cases of acute need, new equipment was delivered promptly. Maintenance by external firms was experienced by some as not working quite so smoothly. Storing spare parts at home was considered important, even if technical problems with the ventilator were rare.

The significance of teaching and information

Clear instructions in the initial phase and the provision of information were, according to the informants, very important to be able to live securely with their ventilator. They had received relatively little teaching during the starting-up phase, but even so it was adequate. The ventilator was found to be simple to learn and use, and several benefited by having their families joining in at the outset. It was important that those teaching them possessed solid competence and insight into the client’s situation. The equipment had to be well-adapted to the individual, and it was important to spend ample time testing it out. Some showed considerable knowledge of the functioning of the ventilator and its accessory equipment, while others wished just to relate to its ‘on–off’ function.

Informants believed that a confident attitude to the positive effects of ventilator treatment would be the motivation factor in making the adaption process run smoothly. Good motivation on the part of the teachers was important. This also applied to early information on the possibility of ventilator treatment, especially when facing gradually deteriorating respiratory capacity. Some claimed to have received inadequate or no information at all from their assigned general practitioner. Several found that they themselves and their families had to push hard to get the information and help to which they were entitled. The Internet was mentioned in this connection as an important source of information. Access to information and sharing of knowledge and experience that other service users passed on to them was mentioned as important. This could be through private acquaintances, organizations, participation in seminars and by reading literature on the subject. By sharing experiences, clients could both give and receive useful advice about living with a ventilator.

Discussion

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

Possible limitations of our study were those of most qualitative studies, in that the sample was small and included only service users in the eastern part of Norway who were using HMV. If the sample had included all those using HMV throughout Norway, regional differences might have led to other and more varied findings. Furthermore, it must be borne in mind that the informants were limited to those who felt healthy enough to participate in the study, leaving the possibility that the experiences of more seriously-ill clients was omitted. On the other hand, all informants in the sample fulfilled the advance inclusion criteria of the study. There was great variation in age, diagnosis, aid measures and the duration of their experience. This ensured breadth and thereby enhanced credibility in the data.

Some informants became tired during the interviews and were unable to keep on talking for very long. This may have resulted in data acquisition limitations and consequently may have dependability. The data might have been more extensive, if the interview guide had been included in the letter of information which was sent to informants, who could thus have been better prepared.

In view of having been present during all interviews, having discussed the relations aspect afterwards and worked out the manifest content of the text, we are confident that the themes identified represent the latent content of the data.

The findings might be considered to have transferability value to clients in general who use HMV ventilator, and in addition to other groups with chronic illnesses.

Chronically ill – but feeling in good health

Ventilator treatment, after what was for some clients a difficult initial phase, gave increased energy to tackle daily life and generally enhanced quality of life. This is confirmed by other studies (Goldstein et al. 1995, Markstrőm et al. 2002, Lindahl et al. 2005). HMV users experienced their lives as functioning well, which is in accordance with a number of previous quantitative and qualitative studies (Pehrsson et al. 1994, Thomassen 1996, Gelinas et al. 1998, Paulsen 1998, Lindahl et al. 2003). Informants’ own assessment of their state of illness was that they were relatively healthy. Professionals, on the other hand, based on objective findings, would probably conclude the contrary. Evolving out of the traditional objective perspective on illness, people with a serious chronic condition and dependence on advanced technical support equipment are prone to be characterized as unwell (Lindahl et al. 2005). A number of our respondents expressed the view that they were in good health and that they were happy to be so well. This is a good example of the fact that the perception of health is individual, and that health is not the equivalent to the absence of disease.

Dependent on care – but one’s own master

To be able to stay on in one’s own home and feel in charge of one’s everyday life in spite of the need for a ventilator and various other aid measures is a highly valued benefit. Participants reported feeling empowerment, which meant control and making decisions about the total support they received. They themselves must be able to lay down the prerequisites for this (Askheim 1998). To achieve this condition, a change in traditional thinking seen from a nursing perspective is necessary, according to Gibson (1991). Professional nurses and others healthcare services must shift the aim of their practice to actively supporting and strengthening individuals, families and local communities to see the resources of these released. The goal is to develop and use the resources and energy of individuals and at the same time counteract and reduce the stress and strain felt by individuals as impeding control over their lives (Stang 2003). To what extent the informants in this study felt that they themselves were in command partly depended on the organization of aid measures. For those in great need of help, having PA was considered a suitable measure. PAs included users as active and competent actors and gave them the feeling of living a normal and active life with a large degree of autonomy and control. Askheim (1999, 2005) concludes that a PA seems to be a suitable instrument to attain the goal of full participation and equal status for people with disabilities.

In need of competent care and continuity – but formal competence is not the most important

Our findings indicate that a good life with a home ventilator depends on adequate teaching and back-up by competent healthcare personnel with a high level of continuity. Through regular consultations with the specialist healthcare service, service users on the one hand satisfied their need for information and knowledge about their treatment and medical condition. On the other hand, they needed help to carry out everyday activities. In this respect, those with PAs were the most satisfied. Informants reported that they took part in teaching their own PAs so that they knew exactly what was needed. Thus, these assistants, in most cases without any formal special competence, received tuition from their clients. It is rather paradoxical that the PAs often had no formal competence, but had a solid functional competence based on the tuition they received from the HMV users. The need for continuity and predictability, freedom and the possibility of being in control were also central factors in the study by Kiessling and Kjellgren (2004) of clients’ perceptions of participation in health care.

In contrast to PAs, interviewees found the service offered by the home nursing service to be poorly adapted. The home nursing service, which might be expected to be the most competent, was characterized by several informants as incompetent. It might seem as if the way in which the home nursing service is organized would make satisfying the special and complex needs of the home ventilator users more difficult. This can be seen in connection with what Holman and Lorig (2004) say about healthcare services in the United States of America. These were organized at the beginning of last century to take care of acute illness and have not been changed substantially today, when chronic illness has become the major issue. Community and home-based care are poorly developed. To serve clients with chronic disease, a shift in roles is required where service users – with their needs and knowledge – take an active part on equal terms.

Good competence on the part of daily support personnel was characterized by the clients as being helped by familiar people who regarded them as human beings with a broad spectrum of needs, who were there when needed, and who were able to inspire confidence when performing technical procedures. This is confirmed in other HMV studies (Lindahl et al. 2003, 2006, Brooks et al. 2004, Ingadottir & Jonsdottir 2006) and possibly through the work of Wilde et al. (1993) in connection with how hospital patients experienced quality of care.

Personal assistants build up this specific competence to cover the needs of their only client, while professionals in the home nursing service, who their work in a completely different system where knowledge and competence in a large number of fields is expected, cannot possibly have such adapted specialist competence to offer each client they encounter.

Knowledgeable – but hardly heard

Our data indicate that informants had considerable knowledge of living with HMV. They must to a greater extent be met and heard in the light of their experience. The traditional situation where patients are inexperienced and healthcare professionals knowledgeable and apply that knowledge to a passive patient is still predominant. This is in spite of official health policies that incorporate the resources of service users and their right to cooperation (Lov om Helsepersonell 1999, Lov om Pasientrettigheter 1999, Norwegian Official Reports 2001). Traditional practice should be discarded as no longer appropriate especially in the case of chronic disease. Service users should be active partners, applying their expert knowledge continuously in the care process. They must have the opportunity to give their opinion as to what they see as good quality in healthcare services. Quality of health services may, according to Huycke and All (2000), be defined from four vantage points – clients, providers, payers and the public – all having different conceptions of a quality healthcare service. The definition of quality on the part of clients must be given greater consideration.

Conclusion

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

The findings show the importance of clients having HMV being empowered and having control in their daily lives, as well as having competent caregivers and continuity of care. This has implications for nurses who are seeking to improve the quality of care for people living with HMV. Support given by PAs, whom the clients themselves have educated, seems to meet users’ individual needs, and this finding should be taken into account when planning future healthcare services for this growing group of clients. Our research offers some insight into the HMV users’ daily life experience but further research with this in focus is needed. Studies which offer insight into the experience of people living close to the HMV users would also be required.

Funding

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

We would like to acknowledge the Gjøvik University College and the Innlandet Hospital Trust for financial support.

Author contributions

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References

WBB, RB and ISJ were responsible for the study conception and design, drafting of the manuscript, they also performed the data analysis, critical revisions to the paper for important intellectual content and obtained funding. WBB and RB performed the data collection.

References

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgement
  11. Funding
  12. Author contributions
  13. References
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