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Keywords:

  • concept analysis;
  • non-participation;
  • patient participation

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings
  6. Discussion
  7. Conclusion
  8. Funding
  9. References

Objective  The aim of this study was to depict patient non-participation as described by a diverse group with recent experiences of being patients.

Background  Patient participation is regarded as a primary condition for optimal quality of care, suggesting that non-participation should be avoided. A common understanding of the concept of patient non-participation is needed. A discrepancy in definitions of patient non-participation has been found in health-care interactions, health-care classifications and health-care research, and little is known of what patient non-participation represents to patients.

Study design  A survey consisting of closed-ended and open-ended questions was administered to persons that had recently been patients to gather respondents’ descriptions of what they considered as patient non-participation. Qualitative content analysis was used to analyse free-text descriptions, and descriptive statistics were used for the close-ended alternatives.

Findings  Lacking information (e.g. not being provided with appropriate information) and lacking recognition (e.g. not being listened to and/or lacking recognition as an individual with individual needs and concerns) were significant aspects of patient non-participation. Furthermore, non-participation encompassed facing organization-centred, as opposed to patient-centred, health care as well as feeling insecure in health care interactions.

Conclusion  The findings provide input for a better understanding of what patients experience as non-participation. Organising for the caregivers to be able to thoroughly listen to the patients’ illness narratives would easily reduce the risk of patient’s experiencing what is described as non-participation and would provide a sound base for patient learning needs.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings
  6. Discussion
  7. Conclusion
  8. Funding
  9. References

To gain better insight into interactions in health care,1 we need a common understanding of the words and concepts related to the area.2 Although a key concept such as patient participation could be better understood if we had a common understanding of the opposite, i.e. patient non-participation,3 the issue of patient non-participation has been largely overlooked in health care. Patient participation in health care, on the other hand, has been in focus over the past 50 years, promoting the individual’s autonomy4,5 and is now regarded as a primary condition for good care,6,7 suggesting that patient non-participation should be avoided.

Participation is an ancient word, probably originating from the same root as partaking: to partake, to share.8 There are various descriptions of participation, i.e. ‘the action of partaking’, ‘taking part’, ‘associating’, or ‘sharing’ with others in some action or matter, more specifically described as ‘the active involvement of members of a community or organization in decisions which affect their lives and work’.9 Thus, the concept of participation carries the possibility of an extended understanding, although Western countries’ legislation generally uses the more specific description when relating to patient participation.10 The narrow description is also found in the National Library of Medicine’s Medical Subject Headings (MeSH),11 where patient participation is noted as patient involvement in the decision-making process in matters pertaining to health.

Non-participation, on the other hand, is not commonly included in dictionaries and thesauri9,12 but has been defined as ‘not taking part’.13 The MeSH database text does not define non-participation yet clarifies that patient participation should not be confused with patient compliance, which has been defined as ‘voluntary co-operation of the patient in following a prescribed regimen’.11 This suggests that non-participation should not be confused with non-compliance. Yet, when exploring articles in the MedLine database that match the search terms ‘patient non-participation’, we found they primarily reported patient non-compliance to scientific studies, screening programs, or pharmacological treatment.14 Thus, the concept of patient non-participation has not been clarified from either a professional or a patient perspective.

In a study of patient participation and non-participation, we found that patients living with chronic heart failure considered non-participation a significant issue. Non-participation contained such aspects as being disrespected and not knowing what to do to deal with symptoms, where to turn for help, and what plans and strategies should be used in their care and treatment.15 Furthermore, we observed inconsistencies between patients and health providers’ understanding of patient non-participation: Whereas nurses described patient non-participation as not accepting the recommendations of health professionals, patients portrayed it as not having needed information or knowledge, not being regarded as an individual, and being told what to do or how to act without their situation or opinion being acknowledged. This discrepancy in understanding seemed to cause misinterpretations and hindered optimal nurse–patient communication.16 However, paternalistic and maternalistic attitudes and behaviours among health professionals are known to impede patient empowerment.17 Furthermore, there is growing evidence that health professionals value medical benefits more than patients’ right to self-determination.18

The agreed content of a concept should originate from the experience of the phenomenon.1 Thus, patients, who are entitled to autonomous roles in relation to health-care professionals, should contribute to a common understanding regarding patient non-participation, to facilitate mutual understanding in health-care interactions. Yet, little is known of what patient non-participation represents to patients in general, so the relations between patients’ experiences of the phenomenon and general assumptions of the concept need to be investigated. Therefore, the aim of this study was to depict patient non-participation as described by a diverse group with recent experience as patients.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings
  6. Discussion
  7. Conclusion
  8. Funding
  9. References

Setting and participants

We administered questionnaires to persons who had visited or been admitted to a local acute care hospital for adults with somatic disorders. Convenience samples of 100 questionnaires were distributed at nine clinics (i.e. 900 total): three with in-patient wards (internal medicine, surgical and orthopaedic) and six with out-patient services (internal medicine, surgical, arthroscopy, orthopaedic, emergency department and day surgery). The hospital was used as a means of contacting patients without our needing to use the patient inventory. Therefore, the survey was anonymous, and no data regarding patients’ names, addresses or reason for health care contact were identified.

Data collection

The questionnaire was developed to collect descriptions of what respondents regarded as patient non-participation. To our knowledge, no previous questionnaire covered these aspects. In addition to five background questions, the questionnaire included a main question concerning what non-participation represents to patients. The questions consisted of two parts, one in which the participants could tick suggested items and one in which they could present additional, individual aspects in free text.

We constructed the questionnaire with both open- and close-ended questions. Six items were stated as input for the respondents to reflect on – i.e. respondents could choose to describe non-participation by marking one or multiple items appropriate to what they depicted as non-participation – or they could describe non-participation in their own words, or both. To define and phrase the items, we used themes of patient non-participation revealed in previous work15,16 and negations of general notions of patient participation found in European legislation:10

  • • 
    Lack of understanding, as when the patient receives instructions or prescriptions without explanations and/or receives information that he or she does not understand;
  • • 
    Sensing not being accountable, as in the case when the patient is not given the opportunity to explain how he or she is or is not being respected as an individual; and
  • • 
    Decision-making issues, as when the patient is not partaking in decision-making regarding his or her care/treatment and/or in the planning of his or her care.

The questionnaire was phrased in the first person; i.e. descriptions were prompted by the statement ‘Non-participation to me, as a patient, is:’, followed by the suggested items. A consecutive statement, ‘Non-participation is rather/also:’, was followed by a space for respondents’ own words. Background questions consisted of sex, age group, type of setting (to recognize in- and out-patients), duration of present symptom/disease and other health-care encounters. Further survey questions regarding the respondents’ perception of patient participation and experiences of patient participation or non-participation are described elsewhere.19,20

The questionnaire was distributed by the principal author or a contact person among regular staff in each care unit. The distribution started on a set date and continued until all units had administered their 100 questionnaires, which took 6 weeks. The questionnaires were given to the patients who were discharged to their home from a ward or were leaving an out-patient unit after a visit. Patients matching inclusion criteria, i.e. who were able to understand and communicate in Swedish, were approached with verbal and written information about the study. The information stated the aim of the study, that taking part in the study was voluntary and that the participants could choose not to return the questionnaire if they later made the decision not to participate, regardless of initial consent. Each questionnaire was also accompanied by an envelope with prepaid postage for the response. Before administering the questionnaire, we obtained individual informed consent.

Validity and reliability

The questionnaire’s clarity21 was tested in a pilot study: 20 questionnaires were distributed in the same manner as in the main study at a clinic not involved in the principal study. A response rate of 70% was reached; the 14 respondents in the pilot study had no questions for the researchers, and their responses indicated that they understood the questions as we intended. Furthermore, the responses indicated that the suggested items were carefully considered and marked and the open responses presented additional descriptions of patient non-participation.

Data analysis

Quantitative and qualitative methods were used in the analysis. The quantitative data were entered into SPSS, version 14.0. Descriptive statistical analysis was performed for the responses to the background questions and the respondents’ use of suggested items to depict non-participation. All suggested items were tested using chi-square tests for significant relationships to the background variables. Results with < 0.05 were considered statistically significant.

The additional individual descriptions of what non-participation constituted to the participants were transcribed verbatim to text files and later analysed using qualitative content analysis.22 The analysis began with repeated reading of all responses to the open-ended question. Subsequently, meaning units were abstracted from sentences and phrases. Sub-themes were identified and, finally, themes were formed. An interpretative approach was used during the analysis23 according to the hermeneutic approach.24 An analysis of the occurrence of the themes was also performed.25

Ethical implications

The study followed the recommendations of the Helsinki declaration and was approved by the ethical committee of the Karolinska Institute, Stockholm, Sweden.

Findings

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings
  6. Discussion
  7. Conclusion
  8. Funding
  9. References

Response rate

Altogether 362 patients responded to the questionnaire (response rate 40%). The questions on what the respondents described as patient non-participation rendered 325 responses: 324 respondents described non-participation by ticking the suggested items, and 77 also provided additional individual descriptions; one respondent provided only an individual description. Demographics are outlined in Table 1.

Table 1.   Demographics
VariableResponses (%) (n = 325)
Sex
 Female190 (58)
 Male132 (41)
 Missing data3 (<1)
Age group
 29 years or younger38 (12)
 30–59 years162 (50)
 60–79 years102 (31)
 80 years or older23 (7)
Type of setting
 Outpatient214 (66)
 Inpatient109 (34)
 Missing data2 (<1)
Symptom/disease duration
 <1 month84 (26)
 1–6 months69 (21)
 >6, <12 months45 (14)
 ≥12 months126 (39)
 Missing data1 (<1)
Other disease/disability causing contact with health care providers
 Yes122 (38)
 No195 (60)
 Missing data8 (3)

Responses to suggested items of non-participation

The vast majority of the respondents ticked the following items describing non-participation: ‘Getting instructions or prescription without explanation’, ‘Not being respected as an individual’, ‘Not getting the opportunity to tell how I am’, and/or ‘Getting information that I don’t understand’; 35% (= 114) ticked all suggested items. Furthermore, the items ticked the least (by approximately 50% of the respondents) were the ones considered as negations of the common notion of participation, namely not being involved in planning and decision-making regarding care and treatment. All responses are presented as numbers and percentages in Table 2.

Table 2.   Patients’ descriptions of non-participation using the six suggested items by frequency and percentage
Suggested item with order number from questionnaireNumber of patients (%) (n = 325)
1Getting an order or prescription without explanation274 (84)
6Not being respected as an individual265 (82)
3Not getting the opportunity to tell how I am249 (77)
2Getting information that I don’t understand238 (73)
4Not taking part in decision making regarding my care/treatment183 (56)
5Not taking part in planning of my care156 (48)

Participants in the older age groups ticked the item ‘Not partaking in decision making regarding my care/treatment’ more frequently than the younger age group (= 0.004), and more women than men chose the item ‘Not being respected as an individual’ to describe non-participation (= 0.008). Furthermore, the respondents reporting symptom duration of 1–12 months favoured describing non-participation as ‘Not getting an opportunity to tell how I am’, compared to those reporting a symptom duration of less than 1 month or more than 12 months (= 0.009). In addition, respondents reporting additional health care encounters ticked the item ‘Not partaking in decision making regarding my care/treatment’ in describing non-participation more often than respondents not reporting additional health care encounters (= 0.027).

Additional descriptions of what non-participation represents

The 78 additional descriptions in respondents own words formed 84 meaning units describing non-participation. The texts spoke primarily of non-participation as not getting the information needed to feel safe, of being seen as a disease or a problem rather than as a person, of being neglected, and of not having one’s knowledge recognised.

From the analysis we formed 10 themes related to patient non-participation. All themes and their corresponding sub-themes appear in Table 3. The themes were structured to represent four overarching themes, i.e. domains to non-participation: Lacking recognition, Lacking information, Facing organisation-centred rather than patient-centred health care, and Feeling insecure. These four overarching themes may be illustrated by the following quotes from the questionnaires:

Table 3.   Additional domains, themes and sub-themes of patient non-participation
Sub-themesThemes Domains/overarching themesNumber of times domain identified in analysis
Not being listened to Not being believed Not being recognised Not getting the care I needNot being listened toLacking recognition40
Being disregarded Not being regarded as a person Not being regarded as an individual Lacking equality in dialogueNot being respected  
Not getting opportunities to understand provided information Not getting explanationsNot getting information in an appropriate mannerLacking information26
Not getting the information I need Not getting information Lacking information of plans Lacking information of prescription/s Lacking information of how the body functions Lacking information of where to turnNot getting appropriate information  
Not asking questionsNot seeking information  
Not getting sufficient time in interaction with health professionals Not getting an opportunity to impact plans for care/treatment Facing awkward routines not adjusted to patient’s needsFacing routines not patient-centred but arranged to support the health care structureFacing organization-centred rather than patient-centred health care10
Being forced to make a decisionFacing involuntary decisions  
Not getting promised care Not feeling secure in interaction with health professionals Lacking contact with health professionalsFeeling insecureFeeling insecure 8

Lacking recognition

‘My experience as a patient is not recognised.’

‘Having this (disease) for over a year, yet not being believed or not being listened to. Telling that I’m allergic to (a specific drug), but getting that drug anyway.’

Lacking information

‘Not getting my results from lab tests and examinations and no communication about my health situation.’

‘Getting prescription without information of how the medication works, possible side effects, etc.’

Facing organisation-centred rather than patient-centred health care

‘Not being allowed to take any responsibility and being excluded from the team.’

‘Not being able to influence the time and date for visits to my physician.’

Feeling insecure

‘Not feeling secure enough to tell my whole story or ask questions to the health professionals.’

‘Not knowing if the health professionals have the knowledge that they claim and thus the basis for their decisions.’

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings
  6. Discussion
  7. Conclusion
  8. Funding
  9. References

The descriptions depict patient non-participation as lacking recognition from professionals, lacking information, facing routines that do not make sense when ill or in need of health care, and being insecure in interactions with health professionals. The most frequently used description, in terms of both suggested items and patients’ own words, was that non-participation featured not being recognised and lacking information.

Furthermore, we found aspects of what non-participation is to patients which suggests that non-participation is a separate concept rather than the opposite of patient participation; patient participation has been found to correspond to having knowledge and comprehending the provided information; i.e. the information is usable in the individual’s daily life.15 Yet, patient non-participation comprises further aspects of not having information: not getting enough information, getting information that is inappropriate to the individual’s needs or is not presented in appropriate ways, or not seeking information.

In accordance with legislative10 and professional standards,26 identifying patients’ learning needs and providing information are daily tasks for many health-care professionals. When these tasks are not performed well, i.e. when they lack focus on what the patient needs to know and opportunities for the patient to understand the information, what patients describe as non-participation may be an issue. Not being listened to by health-care professionals is a main aspect of what is described as non-participation, particularly among people with symptoms lasting 1–12 months, along with not being recognised as part of one’s own health-care team. The patients’ experience needs to be considered by health-care staff,27 and for positive patient-physician consultations to take place, there has to be active listening from both parties,28 as the behaviour of one person in the interaction might constrain or facilitate the other’s response.29

Nurse-led clinics are established in Europe and the USA particularly for patients with long-term conditions such as diabetes and chronic heart failure. It would be expected that patients get their opportunity to be listened to there, but unfortunately the clinics tend to be organised from a biomedical instead of an individualised and patient-centred perspective.30 Although patient-centred care is commonly regarded as holistic, there is a need to better understand what it represents,31,32 and our findings of non-participation, described by patients as in, e.g. facing organisation-centred care, could provide input to that discussion. These findings emphasise the need for nurses to take the responsibility to organise care according to each patient’s narrative while also including objective- or disease-oriented observations.33 Our study shows that lacking recognition is a significant aspect of what patients describe as non-participation, particularly for women, which may be related to women presenting their symptoms differently from men (e.g., Ref. 34) or women’s symptoms not being recognised by health professionals.35

Despite the persistent call for patient autonomy4,5 the patient’s voice is still lacking in the dialogue between patients and health-care professionals.36 Within health research, non-participation seems to be confused with non-compliance,14 and even though it is acknowledged that the autonomy of persons ought to be respected,11 health professionals regard patients who do not adhere to a prescribed regimen as non-compliant. Many have called for a change from a paternalistic attitude among health-care professionals to team-oriented work in which the patient is included as a partner.37 However, despite the legislative focus on participation in terms of patient involvement in decisions related to care and treatment,10 patients did not depict non-participation as not participating in decision-making and planning as often as not being listened to and not receiving proper information.

It has been suggested that the trend towards patients taking part in decision-making initially meant that patients were allowed to make decisions, yet later it came to mean that patients were encouraged to make decisions, and nowadays patients are forced to make decisions.38 We suggest that patients should be given the right to make important personal and health-care decisions but reinforce the need for professionals to recognise that other aspects might be as crucial in preventing what patients describe as non-participation. Health-care professionals should recognise patients’ right to life and choice26 in the sense that people make choices that are appropriate for them based on their knowledge, situation and values. For health-care professionals, the way to achieve the understanding necessary to support the individual’s experience of participation is to engage in dialogues that encompass a patient’s knowledge and context. Listening to the individual is a basis for ethics in care,39 and recognising the individual’s experience and choice is a tribute to human rights.40

Limitations

In this study we prioritised respondents’ possibility of remaining anonymous, both at inclusion and when responding. Although we used a specific health care provider to get in touch with people with experience of being patients, we did not want to use the health care provider’s directory, which was an option considered for a mail survey. Rather, we chose to have no opportunities for reminders. The overall response rate of 40% to the survey is acceptable,41 and our personal delivery of the questionnaire with verbal information along with the written allowed us to reinforce that the survey applied to the participants’ perception of patient non-participation in general, not whether non-participation had taken place during the present visit/care period. This was important to establish reliability in the study, i.e. to render what non-participation was to the respondents. Survey methods allowing reminders could probably have yielded a higher response; however, such methods were considered inappropriate as they would have had a negative impact on patients’ integrity. In addition, 325 descriptions of non-participation exceeded what we could have attained with interviews and provided us with descriptions of a diverse group of patients. Although we identified a possibility that the suggested items would be ticked in the order in which they were presented, we found that the items seemed to be considered carefully. Thus, the items used for describing non-participation did not follow the order in which they were presented (as noted in Table 2), and similar descriptions were found among the most common open descriptions to non-participation (as presented in Table 3). We found that by providing opportunities for respondents to depict the concept by either suggested items or free text or both, we were able to analyse both how the items were considered, as well as how patients’ descriptions in their own words corresponded to the suggested items. In this study we found that the open responses provided both similar depictions and additional perspectives to the concept of patient non-participation. Consequently, the findings suggest that questionnaires may be used as means to depict what people consider a certain concept to be.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings
  6. Discussion
  7. Conclusion
  8. Funding
  9. References

Despite a growing awareness of the concept of patient participation, little attention has been given to patient non-participation and even less to patients’ descriptions of the concept of non-participation. This may cause inconsistencies in interactions, as patients and health-care professionals do not share a common understanding of the concept. We urge health-care professionals to consider the issue of patient non-participation in health-care interactions. In particular, we suggest that patients’ view of non-participation may coincide with not being recognised and/or not being provided with appropriate information rather than not participating in decisions. Rather, being forced to make decisions may cause what patients describe as non-participation, which speaks to a need for mutual dialogue on patient participation and non-participation in health-care interactions.

Funding

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings
  6. Discussion
  7. Conclusion
  8. Funding
  9. References

This study was granted financial support for data collection and analysis by the Stockholm County Council (PICKUP 2004-7611), Capio, and Capio St Görans Hospital, Stockholm, Sweden.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings
  6. Discussion
  7. Conclusion
  8. Funding
  9. References
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