Original articlePatient participation in the intensive care unit
Introduction
In many European countries, patients’ right to participate in healthcare have been established in laws and formal regulations (Organization, 2013). In practice though, patients have often perceived difficulties in taking an active position in their care and have sometimes been met by a paternalistic attitude by healthcare professionals (Vincent, 1998). Until relatively recently, it was not unusual that the healthcare system did not allow active patient participation or that caregivers opposed of patients being involved in their process of care (Suominen, 1992, Charles et al., 1997, Sahlsten et al., 2005a, Chewning and Sleath, 1996). However, since patient participation has been shown to be an important factor in increasing motivation for treatment adherence, inducing higher satisfaction with care and optimizing treatment outcomes (Williams et al., 1998, Sainio et al., 2001), practice is slowly changing. Most patients want to be involved in major decisions regarding their care, such as whether to undergo an operation or not, but are less concerned about minor decisions (Mansell et al., 2000). Patients state that they expect to receive competent care, but want to have knowledge about their condition and possible treatments and wish to be respectfully met by the healthcare personnel (Eldh et al., 2008, Eldh et al., 2010, Larsson et al., 2007). Information has been considered to be the key to patient participation, but often patients lack the most basic information (Organization, 2013, Sainio et al., 2001, Sahlsten et al., 2005b, Tutton, 2005). Patients are highly dependent on the caregiver to provide adequate and sufficient information to be able to give informed consent to care and treatment (Larsson et al., 2007).
Critically ill patients treated in an intensive care unit (ICU) are completely dependent on the ICU personnel. Many patients are comatose, sedated or in other ways affected by life-threating illnesses. Compared to in general health care, active participation in care and treatment may be difficult to achieve. In most countries today, the majority of patients survives the acute phase of critical illness (Vincent et al., 2014) and recovers cognitively enough to be able to participate in their process of care. Despite this, ICU patients rarely participate in decisions regarding their own care (Lautrette et al., 2008, Ferrand et al., 2001). When ICU patients were asked, they expected caregivers to make expert decisions for them, but as soon as they had recovered consciousness and vital parameters were stabilized, they wanted to participate in the process of care as much as they possibly could (Lindberg et al., 2015). Even though many factors influence the level of patient participation, there is an urgent need for ICUS to implement and practice a more person-centered care (McBrien, 2009). Today, little is known about the possibility for patient participation in the ICU (Olding et al., 2016). Therefore, this study explores critical care nurses’ perceptions of patient participation.
Section snippets
Objective
The purpose of the study was to explore critical care nurses’ perceptions of patient participation for critically ill patients.
Settings and participants
The present study used a qualitative research design that involved four focus group interviews. The study was conducted in two intensive care units, with 8 beds per unit, at two county hospitals in Stockholm, Sweden. Swedish-speaking critical care nurses who worked at the two ICUs were included in the study by using convenience sampling. The head nurse in each ICU
Findings
In the ICU context, patient participation was initially described as being conditional to patients’ health condition and consciousness. During the life-threatening phase of critical illness, patient participation was explained as passive involvement in care. Once the life-threatening phase was over and the patients’ vital parameters were stabilized, a more active patient participation could gradually be incorporated in nursing care. However, the nurses found it to be challenging to know when to
Discussion
In this study, we explored ICU nurses’ perceptions of patient participation in nursing care. The nurses found that it was possible to achieve patient participation in an ICU setting. Direct participation was conceivable for awake and cognitively alert patients. For sedated or unconscious patients, participation was interpreted by indirect means, such as through bodily expressions or discussion with relatives, or was found in documentation in medical charts.
Previous studies have shown that,
Limitations
The finding of the study should be interpreted in the light of its limitations. The interviews were conducted by two different sets of interviewers, which may have influenced the results. A more experienced interviewer may also have been able to reach deeper into the interviews. In a qualitative study, it is important that the researchers are aware of their own preconceptions. In the analysis, one researcher had vast ICU experience and the other had more experience of patient participation in
Conclusion
In the ICU, the possibilities for patient participation in nursing care are not only dependent on the patient́s health condition but also the nurse’s ability to include patients in various care actions despite physical and/or mental limitations. When the patient is not able to participate, nurses strive to achieve participation through relatives’ knowledge and/or other external sources of information. A better understanding of the core attributes for patient participation could help nurses to
Funding
The authors have no funding to report.
Conflict of interest
The authors declare no conflict of interest.
Acknowledgements
We would like to thank Anna Westring, Jonatan Malmqvist, Sara Pettersson and Liv Vannefors for conducting the focus group interviews.
References (33)
- et al.
Challenges in achieving patient participation: a review of how patient participation is addressed in empirical studies
Int. J. Nurs. Stud.
(2015) - et al.
Participation and support in intensive care as experienced by close relatives of patients: a phenomenological study
Intens. Crit. Care Nurs.
(2013) - et al.
Shared decision-making in the medical encounter: what does it mean: (or it takes at least two to tango)
Soc. Sci. Med.
(1997) - et al.
Medication decision-making and management: a client-centered model
Soc. Sci. Med.
(1996) - et al.
Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness
Nurse Educ. Today
(2004) - et al.
A trajectory towards partnership in care–Patient experiences of autonomy in intensive care: a qualitative study
Intens. Crit. Care Nurs.
(2015) Translating change: the development of a person-centred triage training programme for emergency nurses
Int. Emerg. Nurs.
(2009)- et al.
Patient participation in nursing care on medical wards: an integrative review
Int. J. Nurs. Stud.
(2015) - et al.
Professional autonomy in 21 st century healthcare: nurses’ accounts of clinical decision-making
Soc. Sci. Med.
(2010) - et al.
Assessment of the worldwide burden of critical illness: the intensive care over nations (ICON) audit
Lancet Respir. Med.
(2014)
Patient participation: a concept analysis
J. Adv. Nurs.
Considering patient non-participation in health care
Health Expect.
A comparison of the concept of patient participation and patients’ descriptions as related to healthcare definitions
Int. J. Nurs. Terminol. Classif.
Decision-making capacity and surrogate designation in French ICU patients
Intens. Care Med.
Qualitative research. Introducing focus groups
BMJ
Intensive care unit nurses’ perceptions of patient participation in the acute phase of chronic obstructive pulmonary disease exacerbation: an interview study
J. Adv. Nurs.
Cited by (25)
The diverse invitations to participate in early rehabilitation – A qualitative study of nurse-patient interactions in the intensive care unit
2024, Intensive and Critical Care NursingIntensive care professionals’ perspectives on dysphagia management: A focus group study
2023, Australian Critical CareCare practices for patients requiring mechanical ventilation more than seven days in Swedish intensive care units: A national survey
2023, Intensive and Critical Care NursingCitation Excerpt :One method of facilitating such family member participation is having liberal visiting policies, which was more common in Swedish ICUs than in ICUs in other countries (Morandi et al., 2017). Liberal visiting policies do present organisational challenges (Ning and Cope, 2020) but can encourage family members to be active in daily ICU rounds, patient communication and providing information regarding the patient (Au et al., 2017; Schandl et al., 2017). Policies based on person-centred care were uncommon in Swedish ICUs.
Patient participation in critical care research, service design, and care delivery
2022, Intensive and Critical Care NursingThe core of patient-participation in the Intensive Care Unit: The patient's views
2022, Intensive and Critical Care NursingCitation Excerpt :However, research from general wards on patient participation has shown that several obstacles must be overcome such as: the paternalistic model of health care and patients’ lack of capability and/or unwillingness to participate due to illness (Tobiano et al., 2015a; Tobiano et al., 2015b). Previous research has shown that patient participation is possible to obtain in the ICU, in both active and passive ways, but also through relatives (Mackie et al., 2019; Schandl et al., 2017; Stayt et al., 2016). However, reports of the phenomenon of patient participation during intensive care from the patient’s point of view are scarce.
Nurses' Perceptions of Patient Participation in the Postanesthesia Care Unit—A Qualitative Focus Group Study
2021, Journal of Perianesthesia Nursing