Quality in Care requires Kindness and Flexibility – a hermeneutic-phenomenological study of patients’ experiences from pathways including transitions across settings

doi:10.21203/rs.3.rs-3423405/v1

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Quality in Care requires Kindness and Flexibility – a hermeneutic-phenomenological study of patients’ experiences from pathways including transitions across settings

https://doi.org/10.21203/rs.3.rs-3423405/v1

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published 22 Jan, 2024

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Background: The number of people living with chronic conditions is increasing worldwide, and with that, the need for multiple long-term complex care across care settings. Undergoing transitions across healthcare settings is both challenging and perilous for patients. Nevertheless, knowledge of what facilitates quality during transitions in healthcare settings from the lifeworld perspective of patients is still lacking. Therefore, we aimed to explore the lived experience in healthcare quality for Danish adult patients during healthcare pathways including transitions across settings.

Methods: Three women and five men with various diagnoses and care paths between 30 and 75 years of age shared what influenced their perceived quality of care in interviews with a hermeneutic-phenomenological approach. Data underwent a three phased thematic analysis leading to three themes.

Results: Patients with various illnesses’ experiences of quality of care is described in the themes “Being powerless in the face of illness,” “Burdensome access and navigation,” and “Being in need of mercy and striving for kindness.” This highlights that patients’ experiences of quality in healthcare pathways across settings interweaves with an overall understanding of being powerless at the initial encounter. Access and navigation are burdensome, and system inflexibility adds to the burden and enhances powerlessness. However, caring care provided through the kindness of healthcare professionals supports patients in regaining control of their condition.

Conclusions: We conclude that two main aspects: I) kind and merciful professional relationships and II) system flexibility including access and navigation, are essential for patients’ experiences of care quality during healthcare transitions. This is important knowledge when striving to provide patients with a clear voice regarding quality in care pathways stretching across settings.

Quality

Healthcare Transitions

Patient Experience

Phenomenology of Practice

The number of people living with chronic conditions is increasing worldwide, and with that, the need for multiple long-term complex care across care settings [1]. This also applies to Denmark, where about one-third of all adults have at least one chronic condition [2] and the prevalence of long-term complex care across departments, sectors, etc., is increasing notably [3]. Undergoing transitions across healthcare settings is both challenging to patients [4] and potentially perilous [3,5,6]. Literature suggests that regardless of illness type, dimensions related to the structuring of healthcare services and interpersonal factors are essential to patients’ experiences of quality of care in pathways including transitions across healthcare services [7–11]. However, the studies we identified in a systematic literature search [12] were about the lived experiences of patients with one specific illness, at a specific stage in care and/or a narrow age group. Thus, we still lack knowledge of what facilitates quality of care during transitions in healthcare settings from the lifeworld perspective of patients in a broader perspective. In agreement with this, a new Danish report argues that patients request both well-coordinated care pathways and to be taken seriously to achieve quality in healthcare. The report also calls for further research in the area [13].

Navigation, including coordination and sharing of information, seems to be an essential aspect of quality of care in pathways across healthcare settings [7]. Studies also indicate that patients need coordination, information sharing, and continuity to feel safe and cared for in their care pathways [14–17]. However, many still experience fragmented care [1,3,4], and there seems to be inequity in care quality [18–22]. Our prior work showed that no relevant and sufficiently comprehensive tool is yet available to assess the general patient-experienced quality in these complex pathways [BLINDED, SUBMITTED ARTICLE]. Consequently, giving patients a genuine voice in quality improvement and targeting improvement initiatives to patients’ needs is difficult. We see a need to gain this valuable insight that can help understand patient-experienced quality in healthcare better, inform quality assessment from the patient perspective, and improve clinical practice [23,24]. This paper focuses on lived experiences of patients receiving care in pathways including transitions across settings within the Danish healthcare system to provide patients with this genuine voice. Therefore, we aimed to explore the lived experience in healthcare quality for Danish adult patients during healthcare pathways, including transitions across settings.

Design

The study was conducted as a qualitative interview study with a phenomenology of practice approach [25]. We performed a hermeneutical-phenomenological study to understand the lived experience and gain insight into what it is like to receive care for patients. By applying an approach inspired by the methodology of Max Van Manen [25], we aimed to break through the taken-for-granted spheres of our understanding of healthcare services and achieve new insight based on the patient perspective [25]. In pursuit of this, we endeavoured to establish contact with the lived experiences behind the immanent practices of body, social interactions, and environment [25].

Setting and Participants

To reflect the experiences of patients in healthcare transitions broadly, we purposefully selected patients with illnesses related to obstetrics, oncology, neurology, chronic back pain, and mental illness. In addition, different stages of care pathways were sought, ranging from the emergency department to being in recovery at home. Patients were recruited in person from Slagelse Hospital, Odense University Hospital, and the Spine Centre of Southern Denmark. We recruited three women and five men ranging in age from 26 years to 76 years (Table 1). The interviews took place from February to May 2022.

Table 1

Participants’ contacts with healthcare services
	Hospital	Region/private	Municipality
INF 1	Neurology, Cardiology, Emergency care	GP, out-of-hours medical generalist	Home healthcare, occupational therapy
INF 2	Ophthalmology, emergency care	GP, private practice ophthalmology	Home healthcare
INF 3	Gynaecology, oncology, orthopaedic surgery	GP	Home healthcare, rehabilitation, occupational therapy
INF 4	Gynaecology, oncology, rheumatology	GP	Home healthcare, rehabilitation
INF 5	Psychiatry	District psychiatry	Job centre, other services
INF 6	Spine centre, Orthopaedic surgery	GP	Rehabilitation
INF 7	Obstetrics, neonatology	GP, out-of-hours generalist	Early-childhood nurse
INF 8	Orthopaedic surgery	GP	Job centre
GP = General Practitioner

Interviews

We conducted semi-structured interviews guided by Kvale and Brinkmann [26] to bring forth patients’ lived experiences of the quality of care while being in transitions between healthcare settings. The interview guide introduced the aim of the study and followed with three open questions: “Please tell me about your care path?”; “Please, try describing the quality of your care path for me?”; “Are there any other experiences you would like to share with me?” The questions had an open, curious point of inquiry to understand the lived experiences of patients’ care transitions and the quality hereof. Descriptions were subsequently accompanied by honest and probing enquiries regarding the uniqueness of the episodes, actions/reactions, and the daily context. Seven interviews were conducted in person and one was done by telephone. The interviews were recorded and transcribed verbatim. The telephone interview was not recorded, but the interviewer created notes during and immediately after the interview.

Data analysis

We conducted a three-phased hermeneutical-phenomenological theme analysis [25] to interpret the interview data. The first author gained a comprehensive understanding of the text through a wholistic reading, familiarizing herself with its overall meaning and grasping phenomena [25] significant to patients’ experiences of being in healthcare transitions. Following this, a selective reading guided by van Manen’s existentials (see Fig. 1) was performed. The existentials supported identification of essential aspects of patient-experienced quality in healthcare transitions and how these phenomena were described [25]. This constituted the basis of thematic expressions about quality in care. Especially evocative statements were cast to convey the subsequent interpretation [25]. This was done by several readings where the structure of van Manen’s extistentials was slowly erased, and the most significant phenomena stepped forward. A detailed reading was conducted [25], which involved thematic analysis with an in-depth interpretation of the patients’ lived experiences of being in healthcare transitions. The authors discussed the analysis continuously to achieve agreement on the essence of the participants’ experiences. In the section on findings, we present descriptions of the identified themes. Rhetorical gems from the data material, which we have found especially evocative, are included to give transparency.

Three women and five men with various diagnoses, illness severity, age, and stages in care gave interviews about their experiences of quality in healthcare pathways including transitions across different settings. Overall, the participants were in a state of powerlessness against illness and in a need for kindness and flexibility when they approached the healthcare system. Their experience of care quality is embedded in this. In the following, this will be unfolded in a description of the three themes identified: “Being powerless in the face of illness,” “Burdensome access and navigation,” and “Being in need of mercy and striving for kindness.”

Being powerless in the face of illness

Based on the data, it was identified that participants sought help in the health care system because their ability to function was impaired or threatened, and they lacked the power or resources to help themselves. This was shown when the participants initiated the interview with a disclosure of how or what they were suffering from. Hence, reasons for contacting the healthcare system were based on needing help to manage illness and alleviate symptoms. The participants explained that they had attempted to help themselves or awaited spontaneous alleviation without success. Participants described being out of control with their ill health and needing help from healthcare services to regain the power to manage their everyday lives and cope with illness. The participants expressed this in their narrations of how their illness reduced their ability to take part in meaningful activities such as work, leisure activities, and taking care of depending others. For the most critically ill participants, fear of death was their primary concern.

Participants experienced accentuated powerlessness when their needs were not met in the healthcare system. One man suffering from hallucinations during psychosis explained in these words:

INF 5: Well, I go to the district psychiatry every third week, but it is kind of too long for me to be able… it’s as if it sort of crumbles along the way. […] The problem is that it becomes a bit like a garland. Where I kind of go down into depression and start having some psychotic experiences. It is clear that the treatment helps me get back up again, but when the visits are so far apart, I sink pretty low […]. I drop so low that I start having thoughts about suicide and stuff like that.

The material disclosed how the participants’ experiences of losing control over their illness were exacerbated by the experience of inflexibility in the provision of healthcare services and how this was perceived as poor quality of care. Inflexibility was illustrated by stories of rigid schemas for care that led to expressions of exhaustion, pain, anxiety, and frustration while waiting for care, being transported long distances for care, or being offered a care regime that did not meet the participants’ perceived needs. The participants described feeling powerless towards such rigid schemas and that powerlessness manifested in an experience of being objectified. In objectification, the participants sensed a lack of recognition of their worth as human beings. When the participants’ needs for help were unmet, they were left helpless to suffer alone.

Burdensome access and navigation

In the participants’ disclosures, experiences of navigating healthcare services were about difficulties in gaining access to care. The participants described this as confusing and stressful. The confusion started when they tried to figure out whom to contact and when to gain access to the help they needed. The more courses of care they had and the more actors involved, the more confusing access to care became. Accessing care became even more challenging when the participants’ needs for help appeared suddenly and out of hours, primarily because of a feeling of not fitting in with healthcare service schedules and time slots. Not being able to conform to healthcare time slots made participants circumvent access routes. In this way, they eventually gained access, but the path through the gate had been one of significant energy expenditure and stress. An example of how the participants circumvented access routes was by using emergency contact although they knew they were not in an emergency, or by using their personal network to access care.

Gaining access to referrals from the General Practitioner was also experienced as confusing. This scenario was depicted as an experience of being a parcel expedited by one doctor onto the next, which caused a sense of being at risk of stranding in no man’s land. Being in such no-man’s land between referral and accessing care was related to insecurity and unpredictability for participants. This shows how obscurity in referrals made the participants unsure whether they would get the help they needed and unable to predict what would come next. Moreover, participants feared being rejected when they tried to get help, and they had concerns about not being taken seriously by the healthcare professionals. The risk of rejection and not being taken seriously was experienced as a lack of acknowledgment that accentuated powerlessness.

After gaining access to care, participants experienced even more challenges in navigating in several cases. A participant with multimorbidity who was admitted to the emergency unit gave an example:

INF 1: […] I have my entire calendar booked out with hospital visits, so they will have to discharge me so that I can keep the appointments I’m booked for. I struggle to convey that message to them or to get an answer to how far they have come. […] It feels unsafe. I am the one who has to keep track of all those appointments. And it’s been that way through the whole course of my illness, right from when it started. I am the one who has to be the project manager for my illness.

The data covers how the participants mainly experienced being left alone with the burden of navigation. Communication flow and coordination between providers were not transparent to the participants. This led to experiences of disrupted and incoherent care in a problematic and inflexible setup that forced participants to be in charge of their care by keeping track of appointments and following up on test results because no one else seemed to be. The perception of trying to navigate a tricky path without a compass or a map was experienced as burdensome and lonely.

In sum, the participants painted a picture of overall burdensome navigation in what they perceived as an uncoordinated, inflexible healthcare system, which had the power to abandon them outside the gates – or let them in but not help them. This impacted the perceived care quality negatively.

Being in need of mercy and striving for kindness

The participants disclosed how they relied heavily on the kindness of the healthcare professionals. In cases where healthcare professionals took upon them the responsibility to help the participants compassionately, they felt a burden lifted from their shoulders. The following quote describes the relief the participants felt:

INF 7: It was great, such a relief. […] I felt happy after she had been here, even though we agreed I should stop breastfeeding. It was lovely, even though it was actually pretty sad. She was just so smiley and listening and acknowledging. […] She didn’t just weigh him and calculate how much formula he needed. She listened to me and answered the questions I had.

They experienced being cared for when their needs were met and their suffering was acknowledged. Individual needs being met was illustrated as healthcare professionals adjusting guidelines or bending rules to compensate for the participants’ lack of strength or needs for emotional support from family; that is, according to the participants, acts of kindness. Also, kindness was experienced when healthcare professionals made eye contact, took time to listen, or supported participants’ struggles to cope with suffering. When met with kindness, participants felt less like a burden or an object and more like a respected person. Furthermore, they described regaining the power to help themselves when healthcare professionals facilitated participation and acknowledged their preferences. In this way, the participants were supported back to a position in life where they experienced being more in control, more able to function, and supported in their efforts to live meaningful lives.

The participants’ physical impairments varied, and for those who were most critically ill, caring for their basic functional requirements were imminently significant to their experience of quality. This woman, who had undergone major surgery and was in chemo- and radiation therapy, gave an example of how meaningful the simple act of providing a comfortable chair could be:

INF 4: I was SO tired. They planted me in a chair, and I just fell asleep sitting in that chair. […] I have slept in so many waiting rooms simply because I was exhausted. […] So, if I didn’t have to go to all the different hospitals all the time, it would have meant that I could rest, and then I might have had a bit more strength to recover. Maybe I could have better managed it all. If only they had come and said – look, you can have this chair because you can hardly stand on your feet, right?

This demonstrates that some individuals were barely surviving, struggling to eat, and finding it challenging to take even a few steps. During such times, having a comfortable chair to rest in while waiting at the hospital became the epitome of mercy and excellence in providing care with quality. Participants longed for kindness, through someone to acknowledge and care for their situation, help them compensate, and gain alleviation when they were powerless in the face of illness.

This study highlights that patients with various diagnoses and illness severity, age, and stage in health care pathways experience quality of care across settings to interweave with an overall experience of being powerless at the initial encounter. Of novel interest, quality in care was experienced when patients were met in powerlessness by kindness and flexibility. This will be discussed with a theory of care and other research.

Kindness facilitates quality in care

Our finding that patients experience powerlessness before their encounter with healthcare services includes struggling to cope and find meaning in illness. However, the patients met with kindness and mercy experience regaining control - and in that meaningfulness. The Finish nursing Professor Katie Eriksson denotes suffering in patients as either bearable or unbearable [27]. She stresses that to make suffering bearable, care needs to be caritative with love, mercy, and compassion [28,29]. The opposite is non-caring care, which accentuates feelings of helplessness, and being trapped in anxiety and shame [29]. The kindness found in this study can, along this thinking, be seen as caritative care [29] that helps reduce powerlessness and fosters regaining control. According to Eriksson caritative care may arise in the encounter between patient and health care professionals [29]. The finding can thus demonstrate that quality in care depends on this interaction.

The inflexibility of healthcare provision intensifies patients’ powerlessness

Our study reveals that patients experience powerlessness and objectification because of rigid, inflexible healthcare services. Hence, patients experience exacerbated powerlessness by being alone with the burden of accessing care and navigating healthcare transitions. In Erikson's view, the powerlessness expressed by the patients may be understood as hopelessness, not only in the face of illness but intensified by the rigidity of healthcare services. This leaves the participants helpless and trapped in shame or exposed to non-caring care, in Eriksson’s words [30]. We interpret that patients are exposed to non-caring care by inflexibility in care pathways across different settings and carrying the burden of challenging access and navigation. This prevents them from regaining control and fosters the experience of lacking quality.

The significance of kindness and flexibility to quality in care

Our findings add new insight into the experienced quality of healthcare pathways across different settings from the patients’ perspective and focuses on care for patients with various illnesses. Several other Danish studies have similar results with transitions described as unsafe and troublesome [31], fragmented [32], or “being lost in a maze” [33], and our findings on patients’ needs for coordination, information sharing, and coherent care pathways are also supported by other research [14–17]. However, finding navigation of healthcare services to be burdensome for patients seems to be an international issue [4,7] resulting in frustration [17] and needs not being met [14,34]. This indication, that access and navigation are essential to perceived quality of care in healthcare pathways across settings, is further supported by the fact that receiving care across healthcare settings has been found to be a hazard to patient safety [3,5,6], especially for the most vulnerable patients [19–21]. This is in line with Beattie et al., who suggest that the Institute of Medicine’s (IOM) conceptualization on quality in healthcare: safety, timeliness, effectiveness, efficiency, equity, and patient-centeredness [7], can benefit from the addition of the concepts of caring and navigation [7]. Our findings, though, add that the system oriented factors safety, timeliness, effectiveness, and efficiency are not sufficient markers of quality in care if not flexible and adaptable to individual patient needs.

Our findings of needs for kindness in quality care may be equivalent to the suggestions by Beattie et al. of adding caring to the conceptual definition of quality [7]. This is supported by Baudenstil et al. who found that patients’ preferences for quality indicators across healthcare sectors were mainly focused on human-relational themes [35]. Further, Jørgensen et al. found that a trusting relationship with healthcare professionals was meaningful for mental health users to bring coherence to their cross-sectoral care pathways [36]. This finding is similar to ours, but we found the trusting relationship essential for all patients and not just mental health users. We thus interpret that patients’ experiences of quality in healthcare transitions are affected by two unique but interdependent aspects as shown in this study. That is a human-relational dimension (Kindness) on one side and a system-related dimension (Flexibility) on the other. Given the interdependence we have found between the aspects, we expect a two-factor or bi-factor model to reflect patient-experienced quality in healthcare transitions best. This finding brings valuable information to the development and evaluation of content validity of measures for assessment of patient-experienced quality in healthcare transitions.

Strengths and limitations

It is a strength that by taking a hermeneutical-phenomenological approach and letting patients share their perspectives, we were informed by patients’ lived experiences and gained valuable insight into what is at play during pathways including transitions across healthcare settings among various illnesses, ages, and stages. Approaching our data with inspiration from Max van Manen [25] allowed us to focus and study existential aspects of human life with illness, which is needed for healthcare professionals in the future to comprehend what it is like to be an ill person in the world of pathways in the healthcare system. The design also provided rigidity and opened new angles, linking patient-experienced care quality to powerlessness and the experience of regaining control, by guiding our analysis to see the lived experiences behind the immanent practices of body, social interactions, and environment. Nevertheless, the study results must be interpreted cautiously because they merely reflect experiences within the Danish healthcare system. Moreover, it is a limitation of this study, that no participants had other ethnicity than Danish. Further studies, including patients’ experiences from other healthcare systems and with representation of other ethnic groups than Danish, will qualify the knowledge in the field. However, we find the inclusion of participants representing a broad group of people living with different illnesses to be a strength to the transferability of results. Furthermore, our inclusion strategy may support generalisability and an understanding of what it is like to live transitions between healthcare settings rather than focus on illness-specific themes.

Patients of different ages living with various diseases who are in healthcare pathways across settings struggle with powerlessness in the face of illness in the initial encounter with the health care system. This powerlessness predicts patients' experience of care quality. Patients experience being supported in regaining control during healthcare transitions when met with caring care constituted by kindness and system flexibility. The two main aspects of patients’ experience of quality of care in healthcare transitions are; I) kind and merciful professional relationships; II) system flexibility including access and navigation. Both aspects should be represented when assessing the patient-experienced quality of healthcare in transitions. Furthermore, we support the idea that IOM’s dimensions of quality may benefit from adding a dimension related to caring care because healthcare professionals play a crucial role in supporting patients to regain control and thus provide quality care.

General Practitioner

IOM

Institute of Medicine

Ethics approval

According to Danish law, no ethics permissions were required for this study. The study was approved by the legal department at the Research and Innovation Organisation, University of Southern Denmark, Notification number 10.953, and their guidelines were followed along with the ethical principles of the Declaration of Helsinki [37]. All experimental protocols were approved by the PhD School at University of Southern Denmark. Informed consent was obtained from all participants. All participants were informed about guaranteed anonymity, that they could withdraw consent at any time, and that data handling according to current standards would be kept confidential.

Consent for publication

Not applicable.

Availability of data and materials

The datasets generated and/or analysed during the current study are not publicly available due to issues regarding anonymity and the protection of study participant privacy. Data sheets containing anonymized quotes and analyses are available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, or publication of this article: This work was supported by the local research fund at Næstved, Slagelse, and Ringsted hospitals; by a program grant for Exercise First from Region Zealand; and a faculty scholarship from Department of Clinical Research at University of Southern Denmark.

Authors’ contributions

SW conducted the interviews and qualitative analysis and drafted the manuscript. MB made substantial contributions to conceptualisation and theoretical discussions based on interview data and analysis and revised the manuscript critically for important intellectual content. HHL and LM contributed substantially to the conception and aim of the study, revised the manuscript critically for important intellectual content, and supervised the project management. CS made substantial contributions to the conception and design of the study, was involved in the interpretation of findings, contributed to theoretical discussions, and revised the manuscript critically for important intellectual content. All authors have read and approved the final manuscript.

Acknowledgment

We thank Mette Kring Clausen for transcribing interviews.

WHO | WHO global strategy on people-centred and integrated health services. WHO n.d. https://www.who.int/servicedeliverysafety/areas/people-centred-care/global-strategy/en/ (accessed May 3, 2021).
Denmark: Country Health Profile 2021 | en | OECD n.d. https://www.oecd.org/denmark/denmark-country-health-profile-2021-2dce8636-en.htm (accessed October 3, 2022).
Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. The Lancet 2012;380:37–43. https://doi.org/10.1016/S0140-6736(12)60240-2.
Schoen C, Osborn R, How SKH, Doty MM, Peugh J. In chronic condition: experiences of patients with complex health care needs, in eight countries, 2008. Health Aff Proj Hope 2009;28:w1-16. https://doi.org/10.1377/hlthaff.28.1.w1.
Bodenheimer T. Coordinating care--a perilous journey through the health care system. N Engl J Med 2008;358:1064–71. https://doi.org/10.1056/NEJMhpr0706165.
Kripalani S, LeFevre F, Phillips CO, Williams MV, Basaviah P, Baker DW. Deficits in communication and information transfer between hospital-based and primary care physicians: implications for patient safety and continuity of care. JAMA 2007;297:831–41. https://doi.org/10.1001/jama.297.8.831.
Beattie M, Shepherd A, Howieson B. Do the Institute of Medicine’s (IOM’s) dimensions of quality capture the current meaning of quality in health care? – An integrative review. J Res Nurs 2013;18:288–304. https://doi.org/10.1177/1744987112440568.
Waibel S, Henao D, Aller M-B, Vargas I, Vazquez M-L. What do we know about patients’ perceptions of continuity of care? A meta-synthesis of qualitative studies. Int J Qual Health Care 2012;24:39–48. https://doi.org/10.1093/intqhc/mzr068.
Scholl I, Zill JM, Härter M, Dirmaier J. An Integrative Model of Patient-Centeredness – A Systematic Review and Concept Analysis. PLoS ONE 2014;9:e107828. https://doi.org/10.1371/journal.pone.0107828.
Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med 1982 2000;51:1087–110. https://doi.org/10.1016/s0277-9536(00)00098-8.
Staniszewska S, Boardman F, Gunn L, Roberts J, Clay D, Seers K, et al. The Warwick Patient Experiences Framework: patient-based evidence in clinical guidelines. Int J Qual Health Care 2014;26:151–7. https://doi.org/10.1093/intqhc/mzu003.
Lars Tang, Søren Thorgaard Schou, Nina Nissen, Mette Dideriksen, Graziella Zangger, Lars Bo Jørgensen, et al. Protocol: A scoping review to explore concepts and assessment of patient-experienced quality in cross-sectoral care, and how it is assessed. Open Sci Framew n.d. https://osf.io/v3ec5/.
Patienterne har ordet: Dét er kvalitet for os | Danske Patienter 2023. https://danskepatienter.dk/publikationer/patienterne-har-ordet-det-er-kvalitet-for-os (accessed May 8, 2023).
Sampson R, Cooper J, Barbour R, Polson R, Wilson P. Patients’ perspectives on the medical primary–secondary care interface: systematic review and synthesis of qualitative research. BMJ Open 2015;5:e008708. https://doi.org/10.1136/bmjopen-2015-008708.
Hohmann NS, McDaniel CC, Mason SW, Cheung WY, Williams MS, Salvador C, et al. Patient perspectives on primary care and oncology care coordination in the context of multiple chronic conditions: A systematic review. Res Soc Adm Pharm 2020;16:1003–16. https://doi.org/10.1016/j.sapharm.2019.11.014.
Mayo SJ, Ajaj R, Drury A. Survivors’ preferences for the organization and delivery of supportive care after treatment: An integrative review. Eur J Oncol Nurs 2021;54:102040. https://doi.org/10.1016/j.ejon.2021.102040.
Boye LK, Mogensen CB, Mechlenborg T, Waldorff FB, Andersen PT. Older multimorbid patients’ experiences on integration of services: a systematic review. BMC Health Serv Res 2019;19:795. https://doi.org/10.1186/s12913-019-4644-6.
Friis K, Vind BD, Simmons RK, Maindal HT. The Relationship between Health Literacy and Health Behaviour in People with Diabetes: A Danish Population-Based Study. J Diabetes Res 2016;2016:e7823130. https://doi.org/10.1155/2016/7823130.
Wolf MS, Gazmararian JA, Baker DW. Health Literacy and Health Risk Behaviors Among Older Adults. Am J Prev Med 2007;32:19–24. https://doi.org/10.1016/j.amepre.2006.08.024.
Husson O, Mols F, Fransen MP, van de Poll-Franse LV, Ezendam NPM. Low subjective health literacy is associated with adverse health behaviors and worse health-related quality of life among colorectal cancer survivors: results from the profiles registry. Psychooncology 2015;24:478–86. https://doi.org/10.1002/pon.3678.
Adams RJ, Piantadosi C, Ettridge K, Miller C, Wilson C, Tucker G, et al. Functional health literacy mediates the relationship between socio-economic status, perceptions and lifestyle behaviors related to cancer risk in an Australian population. Patient Educ Couns 2013;91:206–12. https://doi.org/10.1016/j.pec.2012.12.001.
Bo A, Friis K, Osborne RH, Maindal HT. National indicators of health literacy: ability to understand health information and to engage actively with healthcare providers - a population-based survey among Danish adults. BMC Public Health 2014;14:1095. https://doi.org/10.1186/1471-2458-14-1095.
Galvin K, Todres L. Caring and well-being: a lifeworld approach. New York: Routledge, Taylor & Francis Group; 2013.
Beck M, Simonÿ C, Damsgaard JB, Missel M, Birkelund R. The Patient’s Voice in the Development of Complex Interventions. Iris J Nurs Care 2020;3:1–5.
Van Manen M. Phenomenology of practice: meaning-giving methods in phenomenological research and writing. Walnut Creek, California: Left Coast Press; 2014.
Kvale S, Brinkmann S. Interview: det kvalitative forskningsinterview som håndværk. København: Hans Reitzels Forlag; 2014.
Eriksson K. Det lidende menneske. 2. udg., 2. opl. København: Munksgaard; 2012.
Bergbom I, Nåden D, Nyström L. Katie Eriksson’s caring theories. Part 1. The caritative caring theory, the multidimensional health theory and the theory of human suffering. Scand J Caring Sci 2022;36:782–90. https://doi.org/10.1111/scs.13036.
Bergbom I, Nyström L, Nåden D. Katie Erikson’s caring theories. Part 2. The theory of caritative caring ethics and the theory of evidence. Scand J Caring Sci 2022;36:1251–8. https://doi.org/10.1111/scs.13098.
Eriksson K. Omsorgens idé. 1. udgave, 5. oplag. Kbh.: Munksgaard Danmark; 2006.
Andreasen J, Lund H, Aadahl M, Sørensen EE. The experience of daily life of acutely admitted frail elderly patients one week after discharge from the hospital. Int J Qual Stud Health Well-Being 2015;10:27370. https://doi.org/10.3402/qhw.v10.27370.
Petersen L, Birkelund R, Schiøttz-Christensen B. Experiences and challenges to cross-sectoral care reported by patients with low back pain. A qualitative interview study. BMC Health Serv Res 2020;20:96. https://doi.org/10.1186/s12913-020-4952-x.
Jørgensen K, Bonde Dahl M, Frederiksen J. Healthcare Professionals’ and Users’ Experiences of Intersectoral Care between Hospital and Community Mental Healthcare. Int J Environ Res Public Health 2020;17:6510. https://doi.org/10.3390/ijerph17186510.
Instituto Nacional de Cancerología E.S.E, Arias Rojas M, García-Vivar C, Universidad de Navarra. The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers. Investig Educ En Enferm 2015;33. https://doi.org/10.17533/udea.iee.v33n3a12.
Baudendistel I, Noest S, Peters-Klimm F, Herzberg H, Scherer M, Blozik E, et al. Bridging the gap between patient needs and quality indicators: a qualitative study with chronic heart failure patients. Patient Prefer Adherence 2015;9:1397–405. https://doi.org/10.2147/PPA.S83850.
Jørgensen K, Rasmussen T, Hansen M, Andreasson K, Karlsson B. Recovery-Oriented Intersectoral Care in Mental Health: As Perceived by Healthcare Professionals and Users. Int J Environ Res Public Health 2020;17:8777. https://doi.org/10.3390/ijerph17238777.
WMA - The World Medical Association-WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects n.d. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/ (accessed December 10, 2020).

No competing interests reported.

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published 22 Jan, 2024

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Editorial decision: Major revision
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Quality in Care requires Kindness and Flexibility – a hermeneutic-phenomenological study of patients’ experiences from pathways including transitions across settings

Status:

Journal Publication

Version 1

Abstract

Figures

Background

Methods

Design

Setting and Participants

Interviews

Data analysis

Results

Being powerless in the face of illness

Burdensome access and navigation

Being in need of mercy and striving for kindness

Discussion

Kindness facilitates quality in care

The inflexibility of healthcare provision intensifies patients’ powerlessness

The significance of kindness and flexibility to quality in care

Strengths and limitations

Conclusions

Abbreviations

Declarations

References

Additional Declarations

Status:

Journal Publication

Version 1