Abstract
Background:
High-quality health services include both safe care as well as involving service users in treatment and decision-making.
Material:
The aim was to explore how mental health service users perceive the relationship between safe care on the one hand and increased influence and decision-making on the other. This was a qualitative study of 15 User Interviewing User evaluation reports, including 417 service users.
Discussion:
Safe and predictable care was essential in poor illness phases, while increased influence and independence were more important in better phases.
Conclusions:
High-quality services are flexible enough to adjust to users’ varying symptoms and needs.
Introduction
A growing number of patients suffer from mental health problems and are in need of health services. Good health services are a universal goal for governments and for professionals providing services. The World Health Organization (WHO) has summarized high quality in mental health services as making the best use of current knowledge and technology in producing positive outcomes for those suffering from mental health problems and their families (WHO, 2003). Governments state that health services should be effective, safe and sound, involve users and give them influence, be coordinated and continuous, make good use of resources, and be accessible and righteously distributed (Coulter, 2002; NDHSA, 2005). In addition, service providers should be attentive to users, and make sure that they are respected (Coulter, 2002). High-quality health services thus encompass different aspects that also presuppose that the service user plays an active role in treatment processes and decision-making.
Users and providers of health services can hold different opinions on what constitutes high-quality services. The term quality has been described as a subjective term defined by the respective person or sector (ASQ, 2012), and as a multidimensional concept that also includes that services are given with attention to the relationship between the patient and the physician (Lohr, Yordy & Thier, 1988). The service user perspective is thus an important element in good-quality services. Several studies have found that professionals’ and service users’ evaluation of services can be different (Bjorngaard, Ruud, Garratt & Hatling, 2007; Shannon, Mitchell & Cain, 2002). Service users want effective and safe treatment, but are more concerned with quality of life and work opportunities, while professionals in general are more concerned with symptom counts (Kendall, Glover, Taylor & Pilling, 2011). Service users are also focused on the experience of treatment and care (Kendall et al., 2011), accessibility, attentiveness, good communication and information, adequate treatment, symptom relief and improved health (Coulter, 2002). The quality of services thus lies in the eyes of the beholder, and service users are important sources of knowledge on service quality.
Neither is who conducts the evaluation of health services insignificant. In a randomized controlled trial more criticism was voiced by the participants when services users conducted the interviews (Clark, Scott, Boydell & Goering, 1999). Another study showed high patient satisfaction through using surveys, while lack of satisfaction emerged when persons with service user experience interviewed the participants (Svensson & Hansson, 2006). Involving persons with user experience in data collection might thus produce different research results, and might provide new knowledge on how service users evaluate the services.
Aim
The aim of this study was to explore how mental health service users perceived the relationship between safe care on the one hand and involvement in treatment processes and decision-making on the other. The study investigates reports from the User Interviewing User evaluations where persons with user experience have conducted data collection, analyses and presentation of results.
Methods
This was a qualitative study based on a sample of reports from the User Interviewing User evaluations in mental health care.
Data material
The User Interviewing User evaluation (http://www.brukererfaring.no/indexEnglish.htm) is a method for evaluation of health services, both in mental and somatic health care. The method has been developed and used in Norwegian health services since 1998. Similar methods have been used in the British National Health Service (Rose, 2001). The User Interviewing User evaluation consists of several steps. First, the main aims for the investigation are developed in collaboration with the services. The services accommodate loyalty and practical aspects of the investigation, and include the participants. Second, individual and focus group interviews are conducted with service users to investigate their experiences with the services. Third, the data are analysed and are presented in a process report. Fourth, the process report is discussed in a dialogue conference with relevant service providers and users. The preliminary findings are thus discussed and validated during this conference. Fifth, the themes discussed in the dialogue conference are added to the data material. Finally, all data, including new themes from the conference, are analysed and presented in a final report. This final report includes summarizing text and illustrative quotes and is thus a summary that all participants agree to.
To date there have been 45 written reports from the User Interviewing User evaluations, and a total of 1,569 service users have been interviewed. The sample for the present study comprised 15 of these reports, including 417 participants receiving mental health services in social, primary and secondary care. First, an initial strategic sample of seven reports was chosen to give variation in type of services, geography and history. Then eight additional reports were randomly chosen through drawing lots.
Analysis
The analysis was conducted by two researchers and the two founders of the User Interviewing User evaluations. The first seven reports were read and all text concerning service users’ perceptions of the relationship between safe and predictable care on the one hand and the possibility for increased empowerment, responsibility and influence on the other were collected. First, all data from three of the reports were read and coded by all four authors. Codes were headwords or short descriptions of aspects characterizing the service users’ perceptions. The codes were discussed and a preliminary list of codes was made. This list was used to re-code the three first reports to check face validity of the code list and to reveal any additional codes. The result from this re-coding was discussed and the list was adjusted accordingly. This procedure was repeated for the next four of the first group of seven reports. The final code list was used to code the next eight reports. Next, the list of codes was discussed and condensed into larger categories formed of several codes. The authors refined the categories by continuous discussions and confirmed them by constant comparison with the transcripts. The quotes used in this article are representative of the material and are chosen to illustrate and complement the description of the findings.
Results
The final reports included in the analysis are based on interviews with a total of 417 service users in 15 unique User Interviewing User evaluation reports in mental health and social services.
Service users described a need for safe and predictable care, especially in phases with strong mental health symptoms. At the same time they emphasized the need for opportunities to increase empowerment, responsibility and influence in phases with fewer symptoms. According to the service users, high-quality services would be flexible enough to provide both safe care and increased empowerment, and to adjust to the users’ varying needs.
Safe and predictable care
The service users described a need for services that provide security and support, especially in poor illness phases. They expressed a need for predictable contacts with professionals who had at least some knowledge about their situation and needs. This was described as particularly important in difficult illness phases and in crises. Participants described it as demanding and difficult to have to repeatedly relay the same explanations and information. Predictability was described as important to feel safely cared for.
Regarding the communication between the different units… first you arrive to a new unit where you have to relate to new persons and when you have established trust in them you are being moved to another unit. Then you have new persons, new faces to relate to and you have to tell the same story once more. I stayed a fortnight in the acute unit… before I came here, and I found it difficult to meet new health professionals again. You should be able to bring one of the professionals with you from the acute unit in a period of transition. Then you wouldn’t have to start over again every time, and you wouldn’t have to feel all alone every time you are moved to a new unit.
The service users also described a need for a shift in responsibility in difficult illness phases and crises. They described difficulties in taking responsibility for handling finances, writing applications, filling in forms, making phone calls and decision-making, and expressed a wish to share this responsibility with professionals. The users wanted professionals to take some or all of responsibility for these areas when they felt incapable. They suggested that meetings, especially where treatment options were discussed and decisions made, could be adjusted in poor illness phases in order to increase the possibility that the user could partake, that is limiting the number of persons present. The users also expressed a wish for having professionals as supportive assessors in formal meetings, for example with the social services.
Increased empowerment, responsibility and influence
The service users also said that high-quality services encourage and facilitate increased empowerment, responsibility, independence and coping. They emphasized that this was crucial in periods with fewer symptoms, to help them be independent from support and help from the service system. The service users described wanting more training towards independence – towards living independently and having a normal job. Help from professionals to increase social contact was also emphasized as a step towards more independence.
I would prefer to live in my own home and be able to cope on my own. The best for me is to have a service appointment, say once a week. But, I am here [in hospital] now, even though I prefer to be in my home. At the same time, I can see how much better I feel by being in the hospital, how important it is for me and how much learning I gain from it.
Users also described that increasing responsibility, decision-making and social contact after a period of strong symptoms could be very difficult. They expressed a wish for more demands from professionals towards increased responsibility and decision-making in phases with fewer or milder symptoms. Good services were thus described as supporting and facilitating the process towards a more normal life.
But I said “ugh no”, because I didn’t know if I was ready for it. I didn’t feel that the meeting place was something for me. But, NN [psychiatric nurse] was there for me, she rang me and said: “I am here now, you can come if you like”, and when I came she met me on the stairs and went inside with me. I wouldn’t have gone there without her support. So, I think it’s important for the services to offer a companion the first time you visit these places.
Flexible services
A main finding was that the service users wanted services that accommodate the varying levels of functioning in the user. This means providing predictability, safety, support and help in poor illness phases, and encouraging and facilitating empowerment, responsibility, influence, development and independence in phases with fewer symptoms. The users thus described a need for services that adapt to varying symptom strength and varying levels of functioning. High-quality services would thus be able to change from being mainly safe, predictable and caring in one period, to making more demands towards the user’s responsibility, independence, influence and development in other periods.
Users described services as being flexible regarding treatment options, time frames, and with therapy sessions guided by their needs and wishes. Accessibility of services outside normal office hours was highly demanded, and participants described that this was when the need for help and support was greatest. Users expressed a wish for low threshold services. They also expressed a desire for services where agreements can be altered, where one can accept a treatment offer that one has previously declined, and where appointments can be changed if needed. According to the users, such flexibility accommodates their needs and enables them to govern their own life.
Discussion
Service users described that high-quality services should be flexible in order to adjust to their varying needs. In phases with strong symptoms, safe and predictable care was wanted. In phases with fewer symptoms, increased empowerment, responsibility and decision-making were important.
Both qualitative and quantitative research has shown that predictability and continuity of care are important for patients suffering from severe mental health illness (Crawford, de Jonge, Freeman & Weaver, 2004; Lester, Tritter & Sorohan, 2005). It has also been shown that changing professionals and having to explain problems several times is straining (Crawford et al., 2004; Lester et al., 2005). Research has also found that service users focus on encouragement and enablement towards increased decision-making and coping (Lester et al., 2005).
The two characteristics or aspects that are the main results in this study appear both as opposites and as complementary: safety, care, predictability and support on the one hand, and increased empowerment, responsibility and influence on the other.
The combination of needs for both nurturing and empowering processes has also been show in previous research (Taylor, Jones, O’Reilly, Oldfield & Blackburn, 2010). Nurturing has been described as an experience of belonging and being accepted ‘as one is’, while empowerment focuses on strengthening a belief in oneself (Taylor et al., 2010). It has also been stated that mental health services have to flexibly support these processes in order to provide good treatment (Taylor et al., 2010).
Users of mental health services have illnesses and symptoms that vary. The present study highlights that high-quality services must adapt to these variations. Two questions are important in view of the findings. The first question is whether services’ structures are flexible enough to adapt to services users’ varying needs. The importance of coordinating health services for patients, especially in chronic health problems, has been emphasized by many (Lemieux, Levesque & Ehrmann-Feldman, 2011; Watts & Segal, 2009). The link between organizational attributes of health services and degree of, for instance, self-management in patients with chronic illnesses has not been investigated much. Current knowledge shows that such attributes explain a small albeit significant portion of service users’ self-efficacy in illness management (Lemieux et al., 2011). The quality of relationships and communications with service providers has, however, been shown to be a factor that influences the service users’ self-management in chronic conditions (Schulman-Green et al., 2012).
The second question is whether users are sufficiently involved. A high level of user participation would be needed to adapt and adjust the services to the users’ current needs. Optimal mental health treatment has been described as an individualized process where professionals collaborate with users to tailor the best possible treatment and support (Adams & Drake, 2006). Although users find it hard to evaluate professional competence, they feel that their perceptions should be valued as highly as the professional’s views (Elwyn, Buetow, Hibbard & Wensing, 2007).
Involving the individual user in the development and adaptation of the services presupposes good information, good cooperation between different aspects of services, and skilled and experienced professionals. It also puts strong demands on the professionals’ respect for the users’ views. Previous studies have shown that professionals perceive that mental health users lack insight into their illness and the ability to collaborate with services, especially in phases with strong symptoms (Mahone et al. 2011; Solbjor, Rise, Westerlund & Steinsbekk, 2013). Such perceptions would make it challenging to genuinely involve users.
Many have emphasized that respect is important to achieve high-quality health services (Coulter, 2002; NDHSA, 2005). Some have found that both service users and professionals consider respect to be a core aspect of user participation in health care (Rise et al., 2011). Rise and colleagues (2011) have previously found that respect was crucial for service users, and that professionals should communicate their underlying respect for the users more strongly. To adapt mental health services to service users’ expressed needs would be one important way to demonstrate respect for the user’s voice.
The results of the present study also point to another aspect: how mental illnesses are viewed by service users and professionals, respectively. Professionals tend to view severe mental illness as a chronic and lifelong condition, while users are more focused on the possibility of recovery, coping and development (Lester et al., 2005). Users of mental health services have described the prognosis as fixed as soon as the mental health diagnosis is given, and that services are rigid and inflexible (Mahone et al., 2011). Such differences in perceptions might help explain why service users emphasize a need for more flexible and adaptive services. Patients’ perception of chronic illness determines how they respond to the disease and influences environmental factors such as employment (Paterson, 2001). A stronger focus on self-management, development and participation among professionals would thus be helpful to improve patients’ self-management skills despite chronic health problems.
Paterson (2001) describes a shifting perspectives model of chronic illness – a model where the perspective is constantly shifting between focusing on the illness and focusing on the wellness. The patient’s perception thus changes according to whether the illness is in the foreground or in the background. This description resembles the varying phases described by the participants in the present study. The present findings thus support Paterson’s (2001) argument that health professionals should not assume that the patient’s perception of illness is static. An illness-management approach that is highly appropriate in one phase would therefore not necessarily be good in another phase. The gradual variation between the need for safe, predictable care and increased responsibility and influence might be a strategy for coping with mental illness that the health services could profitably encourage and adapt to. Professionals could benefit from focusing on and having strategies for the phases with less illness, and working towards increased empowerment, coping, development, social contact, responsibility and decision-making.
Strengths and limitations of study
The main strength of this study is the size of the data material. This ensures a broad view on what users perceive as good mental health services. However, a limitation is that the data material was not collected to answer questions about quality of services specifically. We consider the data material as varied, and this is confirmed by literature. Working with the leaders of the User Interviewing User evaluations in the analysis process strengthened the work as they had close knowledge of the data material. To balance their strong relationship with this data, the other researchers have conducted independent analyses and focused on posing critical questions.
Conclusion
Service users describe that high-quality mental health services encompass the need for safe, stable and predictable care and support on the one hand, and on the other encouraging and facilitating increased empowerment, responsibility and influence in periods with fewer symptoms. To provide individually tailored and high-quality services, a large degree of flexibility is needed. This places strong demands on health service structures and on health personnel’s ability to provide flexible services adjusted to the users’ current needs. Genuinely involving the users’ perception of needs would thus be crucial in providing high-quality services.
Footnotes
Authors’ contributions
MBR participated in the data analyses and wrote the manuscript. HW collected data, participated in the data analyses, and contributed to the editing of the manuscript. DB collected data, participated in the data analyses, and contributed to the editing of the manuscript. AS participated in the data analyses and contributed to the writing and editing of the manuscript. All authors approved of the final version of the manuscript.
Competing interests
No competing interests have been declared.
Funding
This study was funded by the National Centre for knowledge through experience in mental health, Norway.