Older patients’ experiences of person-centred integrated care: joint replacement surgery as a case

Abstract

Purpose

Integrated care (IC) is mainly studied from the perspectives of organisations or employees. However, less research is focussed on how patients themselves experience person-centred (PC) IC in practice. This context-specific, small-scale study examines what PC-IC means to older patients who went through joint replacement surgery (JRS).

Design/methodology/approach

The data consists of ten in-depth interviews of older patients, focussing on their experiences of care during their patient journey related to joint knee or hip replacement surgery. The data were analysed with thematic analysis.

Findings

Three central dimensions of PC-IC for older patients were identified: information sharing, continuity of care and compassionate encountering. Human validation and compassionate encountering were experienced as important aspects of PC-IC. Compassionate encountering was concretised through professionals’ very small everyday practices, which made the patient feel comfortable and respected. Instead, probably due to the medical and quite straight-forward nature of the joint replacement care process, patients seem to be pleased to trust the expertise of professionals and did not necessarily expect an active role or participation in the decision-making.

Originality/value

This Finnish case study focusses on the patients’ authentic perceptions of what is central to person-centred IC in the specific context of JRS.

Citation

Seittu, H.A.-M., Hujala, A. and Kaarakainen, M. (2024), "Older patients’ experiences of person-centred integrated care: joint replacement surgery as a case", Journal of Integrated Care, Vol. 32 No. 5, pp. 1-12. https://doi.org/10.1108/JICA-08-2023-0062

Introduction

The move towards integrated care (IC) has been central in the policy of many countries, as well as the suggestion of WHO (2016, 2019). IC is needed because the increasingly complex care needs, for example, due to the ageing of the population, that has led to increasingly specialised care and a relentless increase in health expenditure (Lorenzoni et al., 2019). Thus, fragmentation occurs between different parties and levels of healthcare, and there is an acute need to make care more integrated (WHO, 2016, 2019).

IC is intertwined with person-centredness (PC) in many ways. The core of PC is on a person’s needs and wishes, and person-centred care is characterised by regarding the patient as a person and approaching the care from a biopsychological perspective (Paul-Savoie et al., 2018). Sometimes, integrated and coordinated care is seen as one dimension of PC (e.g. Van der Heide et al., 2018), sometimes vice versa (Suter et al., 2009). Discussed mutually, these approaches are regarded as patient-centred IC.

Despite the overlapping terminology and conceptualisation of both terms, PC-IC can be described as health and social care services that are managed and delivered across different levels of the health systems in a way that patients receive a continuum of care services according to their needs (WHO, 2015). The importance of PC-IC is easy to explain by shedding light to the fragmentation of current healthcare systems. Fragmentation can appear as the patients’ needs to contact multiple service providers to coordinate their care, as errors occurring between care transitions (Lafortune et al., 2015), low patient satisfaction (WHO, 2016) or as disagreements with service actors on the same care (Wodskou et al., 2014). Fragmentation has been found to be linked with, for example, higher mortality rates (Pereira et al., 2018), a higher number of referrals for specialised healthcare (Olthof et al., 2019) and a higher number of hospital admissions in general (Barker et al., 2017).

Despite its general importance, patients have reported different preferences of PC and IC (Boudioni et al., 2015; Spoorenberg et al., 2015), and these preferences vary between the treatment context in which they have been researched. When it comes to IC, in general, patients appreciated productive interactions with care team (Youssef et al., 2019), cooperation (Youssef et al., 2020), coordination and communication across their health care journey (Berendsen et al., 2009). Studies show that they, for example, wanted to prevent the need for repeating their story, wanted a familiar healthcare professional (Freeman and Hughes, 2010), appreciated when someone told them about other available services that they were entitled to, wanted information about their treatment to be transferred smoothly across health care staff (Berendsen et al., 2009; Carrigan et al., 2023) and wanted help in self-managing their care (Youssef et al., 2020). When it comes to PC, patients preferred a climate that consisted of safety, hospitality and everydayness (Al-Sahli et al., 2021). Moreover, Greenfield et al. (2014) found that patients wanted to be treated as a whole person: to be seen with their whole life beyond their medical symptoms; to be acknowledged as a unique person and to be treated with dignity and respect; to be listened to and get proper attention; to be cared for with warmth and empathy and to be involved in the decision-making. However, in general, there has been limited attention to the patient perspectives on compassion and empathy (Barker et al., 2023).

This study examines PC-IC from the perspective of older people who went through a joint replacement surgery (JRS), a context in which older patient perspective, to our knowledge, has not been examined previously. That context is important to examine for multiple reasons. Firstly, PC-IC is indeed needed especially for older patients because they often have multiple complex needs. They receive care from many healthcare actors (Gro et al., 2018) but typically experience lack of coordination across health care (Shaw et al., 2011). That is because the potential for vulnerability in care fragmentations is obvious in the context of JRS, which includes a variety of service providers in different care sectors. Secondly, it is crucial to explore perceptions of IC within the context of JRS to comprehend the specific attributes necessary for IC in this intricate care process, which demands close professional collaboration. By delving into the patient perspective, we can reap several benefits, including identifying best practices, enhancing collaboration amongst diverse professional groups and crafting treatment models that more effectively cater to individual patient needs. A comprehensive understanding of authentic individual experiences and expectations aids in the development of treatment models that can better address the unique needs of patients in this specific context. This, in turn, leads to cost savings through improved communication and optimal resource utilisation, as well as enhancements in treatment recommendations and practices. Thus, it is relevant to study how care could be integrated in a person-centred way in the context of JRS.

The aim of this study was to examine how older patients who went through a JRS experience PC-IC. Our research question was the following: How do older patients experience their care during their JRS patient journey from home-to-home through primary, specialised and social care?

Methods

Study design and data collection

This study was a sub-study of a larger ongoing Finnish Hauraan Elämän Riskit (Risks of Fragile Life) (HERIT) Research Project by the University of Eastern Finland and the Kuopio University Hospital. The HERIT project examines older patients (65+) with multi-morbidity going through either hip or knee JRS. The main multidisciplinary HERIT Research Project comprises many research perspectives, such as integration of care from the perspectives of care professionals (Hujala et al., 2024) and effectiveness. In order to study patients’ personal experiences, we conducted individual interviews for the patients participating in the main research project. The interviewees were recruited randomly through the HERIT Project’s database in September 2022, selecting patients who had lately gone through a (either hip or knee) surgery follow-up inspection (three months after the surgery). The willingness of these people was first enquired by phone calls. From eleven candidates, ten agreed to participate in the interview. Interviews were conducted in late 2022. All interviewees signed the written informed consent. The research HERIT project has received both research permission and ethical review from the local University Hospital district.

The participants were 67–86 years old, seven females and three males. Each of them had at least two chronic diseases. All of them were living independently at home, either alone or with a spouse. Due to the COVID risk, six out of ten interviewees preferred the interview via phone. Four of the interviews were conducted face-to-face. It is notable that there was no significant difference between the depth or the content of the phone and face-to-face interviews. In-depth individual interviews lasted from 30 min to 60 min and were recorded and later transcribed verbatim. After the preliminary reading of the ten interviews, it was concluded that the saturation point was reached. The transcribed data consisted of 103 pages (font Calibri 12, paragraph spacing 1,15). Background information of the research participants is presented below in Table 1.

As in many other countries, fragmentation between care sectors and units has historically been the case in the Finnish healthcare system (Tynkkynen et al., 2022). For example, in the Finnish healthcare system, the journey of a surgery patient starts from the referral at (usually public) primary care and continues to the surgery in a hospital at public specialised care. General practitioners at the primary care’s health centre are the gatekeepers from primary to specialised care. After the surgery, patients stay some days at the ward in the hospital, where they are discharged to home or, before that, to a temporary primary care ward if needed.

In the interview, the person was asked to freely tell about her/his own actual experiences during the whole JRS patient journey. The interviewer (first author) helped to structure the journey in the phases, enquiring about the experiences starting from initial symptoms and pain, meeting General Practitioner (GP) in the health centre, getting the referral, waiting times, preassessment in the hospital, the actual surgery, days in the hospital ward, discharging and staying at home afterwards.

The interview guide, initially outlined in 2019 by the HERIT Research Project group, supported the interviewer to highlight the main research issues by specific questions related to the holistic health and wellbeing status of the patient, the need and use of health and social services and, for the main part, individual experiences of different issues related to care, such as how professionals took into account the age and multimorbidity or assessed their care needs. Open interview questions, such as “what was your experience of the collaboration between professionals” was used to encourage the patients to talk freely about their experiences throughout the journey.

Data analysis

The data were analysed with thematic analysis, loosely following the analysis guide of Braun and Clarke (2006). Also, the principles of the Gioia method (Corley and Gioia, 2011; Gioia et al., 2013) were utilised to make to the analysis process more visible. In the first phase, the first and the second author read the transcripts. Then, the data was coded and analysed inductively by the first author, using Atlas.ti software to organise codes and potential themes. The data coding started with line-by-line open coding of transcripts to identify patterns, meanings and themes central to the research question. In this phase, the data was analysed by using the language employed by informants. Following open coding, the identified informant-oriented first-order codes were further categorized into theory-centred second-order themes. The purpose of this categorization was to explore the relationships and dimensions inherent in the first-order codes, as outlined by Gioia et al. (2013). This involved analysing commonalities and central themes present in the first-order codes and interpreting them within the authors' understanding of the corresponding scientific phenomena. Ultimately, aggregate (third-order) dimensions were formulated to elevate the data into abstract, research-driven themes, providing a comprehensive description of the phenomenon from a scientific perspective. The initial themes underwent a collaborative review in conjunction with all authors, resulting in the coding structure illustrated in Figure 1. Finally, relevant quotes were selected to represent each dimension.

Results

What does information sharing mean to older patients?

Related to information sharing, the interviewed patients emphasised the importance of two issues: informing the patient and information sharing amongst the professionals.

Informing the patient

All the interviewed patients experienced that informing the patient about the treatment and related care was a central dimension in PC-IC. Eight out of the ten patients experienced that they were well informed by the healthcare personnel about the phases of the surgery:

It was put on a paper what should be done in each phase, and I think it was quite clearly stated. … Yes, I got the information I needed without asking for it. (P9) [1]

As well as being well informed, the patients explained that they wanted to understand the logic of the whole process.

Well I think it is [important] that there would be a plan, that the plan is gone through together [with a care professional] … It is the common thread there, that in every phase, everyone knows what has been done with this patient earlier, and how it is going to continue. That is how the patient is able to respond to the plan. (P6)

As the account of P6 shows, it was important for the patient to acknowledge what happens before and after the surgery. Understanding the treatment process increased the feeling of safety and improved the compliance to preparation and rehabilitation from the surgery.

An example of good informing of the patient was a booklet that was offered to each patient by the hospital on their first visit. This simple but informative booklet included designated information for the JRS patients and clearly had an important role in complementing the information given orally by professionals. For example, the booklet included holistic instructions and contact information of all the health care professional involved before, during and after the treatment. In addition, the booklet included clear instructions for rehabilitation exercises with illustrative pictures. P3 explains the importance of the booklet in taking care of the knee after the surgery:

Those [instructions] were clear enough that I did not need any more … We got a booklet [from the hospital] that told what has to be done in each phase. (P3)

As our interviewees explained, something that might be self-evident to the healthcare professionals, might not be clear to the patient. Thus, in good informing of the patient, the professionals shouldn’t assume that the patient is aware of things – or remembers them all – related to the treatment or rehabilitation.

Information sharing among the professionals

The interviewed patients showed respect of the fact that the information was transferred between healthcare professionals:

Well of course it is important that you know, when you are being treated, that the information is transferred [between professionals]. It is important so that you do not have to always [repeat the information] from the beginning. (P4)

Like the account above shows, many of the patients felt it was very important that they did not need to explain their situation many times when they move from one care professional to another. Instead, mixed information amongst the professionals, different opinions and outages in the information flow made patients easily feel unclarity and unpleasant wonderment. That was, for example, the case of P3, in whose situations the different treatment actors and health information systems of primary care and specialised care didn’t communicate:

What is this kind of system that the laboratories of the health centre do not ‘play together’ with the laboratory of the hospital? It is stupid to take two electrocardiograms, one after another, while it was already taken. So why couldn’t they look at that one? (P3)

Like the account of P3 shows, problems in communication caused irritation as well as more, even unnecessary exams, for the patient.

What is continuity of care from older patients’ point of view?

Related to the continuity of care, in the context of the JRS patient journey, the interviewed patients regarded the stability of the contact person as the most important. Continuity of care was thus strongly perceived to happen through personal contacts.

Amongst the interviewees, stability of the healthcare personnel was appreciated. Many of the interviewed patients experienced confusion, because the care professionals treating them changed. Instead, having the same person taking care of them increased the feeling of satisfaction:

It was a relief that it was the same familiar doctor. It is better than if the workers [care professionals] are changing all the time. (P8)

Many of the interviewees expressed their wish that one single actor would take care of the whole treatment process and could be contacted when problems or questions arise. This is not easy to arrange in the context of JRS, whilst care is provided by multiple actors at different phases of the process, each of them of being responsible for a specialised part of the care. However, the patients experienced it as important that at least the informing party would have been one same person throughout the treatment journey:

Well, it would be good to have one certain person who is responsible for the whole care, a person whom you could trust and ask about things. That there would be one person who you could contact throughout the entire process. … It would be possible to ask and call her/him if needed. (P1)

P3 clarifies that being kicked around between healthcare professionals was the most annoying for the patient:

That you [the patient] would not be bounced around from one to another like a ball, but that you would get a clear answer, such as ‘Let’s do it like this’ or ‘I will find this out and I will call back’ or something like that. That bouncing around is really annoying. (P3)

Also, P7 explains, that he experiences it as frustrating when, at the doctor appointment, the doctor cannot help him with all his current problems and, instead, he needs to meet multiple professionals to get all his problems taken care of. He noted:

Often, the doctor – if you discuss [a problem in] a finger, so s/he cannot take a stance on a toe. I think the doctor should take the patient into account as a whole, [ask] how you are. It is important for good care. (P7)

Specialisation resulted in the lack of holistic care. From the patient’s point of view, this means lack of continuity, whilst all separate problems call for visiting different professionals.

How older patients wish to be encountered?

Listening to the patient and paying attention to their needs

Our interviewees emphasised that listening to the patient was important dimensions in PC-IC. Being heard was not, however, the experience of all our patients. In practice, all our interviewees had experienced a situation where they had visited primary healthcare and explained their pain, and despite that, they couldn’t get a referral to specialised healthcare. In other words, patients felt that the access to surgery was restrained because doctors in primary did not listen to them but, instead, ignored what the patient told about their situation. In fact, this was mentioned by many patients as the most frustrating phase of the process. Many of our interviewees said that they needed to “bomb” primary health care doctor to get the referral to specialised care:

I had to be relentless. I was continuously bombing the health centre, telling them that these are aching knees. It was not quite easy to get access to the surgery … I visited health care doctors several times before some of them took it seriously, that they [the knees] are aching. (P3)

Oppressing the patients, they experienced that they were not taken seriously, listened to and their pain was belittled. Patients understood that restraint is sometimes justified, but in many cases, they experienced that restricting their access to surgery went too far considering their difficult condition. They felt neglected and that they weren’t being heard. In the case of P3, despite the constant pain and bombing of the primary care, the doctor had even told him that the special healthcare staff will laugh him (the doctor) off if he would send a referral to specialised care. One reason GPs seem to underestimate patients’ pain problems may stem from a kind of professional uncertainty: GPs in primary care are afraid they are showing their unprofessionalism by referring patients too easily for surgery.

However, some patients did not want their own opinion to be asked. In these cases, listening to the patient basically meant respecting the patient’s willingness not to decide for their own treatment. Like the quote of P2, where she experienced the doctor as an authority and wanted the doctor to make the decisions:

Well, yes, you wish of course that a doctor decides. You trust the doctor, and the doctor has the best expertise. (P9)

Thus, we argue that despite the fact that listening to the patient is recognised as one of the core dimensions of PC in our data, not all patients want to be involved in the decision-making. Sometimes the patient wants to be just a patient, not a decision-maker.

Compassionate encountering

The interviewees emphasised that compassionate encountering was crucial. The interviewed patients appreciated if nurses treated them kindly and by compassion – even though those interactions may be very short and busy. Being present in an encounter, so that the patient felt that the care professional was genuinely present for her/him, was thus considered a salient dimension of IC-PC.

Especially, for example, in the surgery situation, which was new and even scary for many of the patients, but moreover in the process of ward treatment right after the surgery. As a dimension of PC-IC, the compassionate encountering could be delivered in different ways; but, in general, in all these experiences of our interviewees, central was the fact that the patient experienced that they were taken care of and validated as a human being.

According to our interviewees, the practices didn’t have to be anything special; instead, compassionate encountering may come from very simple things. For example, P4 experienced the touching up of the pillow by a nurse as a positive demonstration of compassionate encountering. Typical experiences of our patients were that even though the nurses seemed to be busy at the ward, they paid personal attention to the patient.

Yes, I felt like they were taking care of me all the time and were interested in how I feel … all were so kind and asked about everything … It is a very nice and kind of trustful feeling when you feel you are ‘in good hands’. (P2)

For one of the patients, the compassionate encountering during the surgery was built upon discussion with the nurse about a familiar issue, the patient’s hometown:

I said that I am frightened, and there was a nurse who was very wonderful; she told me that I don’t have to be afraid. And then there was another nurse who said that she is from the same town as I am. Then we talked about it for a long time, and it kind of took my mind off the surgery. (P3)

As the quotes show, being present and showing interest on the patient as a human being, such as talking about everyday issues, relieved the patients’ stress and, consequently, their feelings of security and comfort increased.

Unfortunately, having compassionate nurses was still not the experience of all patients:

There was a rushed feeling [at the ward] … I was a bit disappointed in the interaction and that there was not much interaction at all [between care staff and patients] … They [nurses] could have paid more attention on the surgery patient coming from the operating room. I felt that we were not taken into account at the emotional level … The nurse could have made me feel safer when moving for the first time after surgery. I would have needed that kind of care. (P6)

Another similar experience was the experience of P10, who told about her feelings at the hospital ward after the surgery:

I think that the care was – from my point of view – indifferent and actually a bit cold. (P10)

In the cases of P6 and P10, the lack of compassionate encountering made them feel that the treatment was not person-centred. As the accounts show, paying attention on the patient at an emotional level is an important part of PC-IC.

Discussion

This study examined how older patients who went through a JRS experience PC-IC. Three central dimensions of PC-IC were found to be important for the interviewed patients: information sharing, continuity of care and the way how care professionals encounter patients as human beings. These experiences shed light on further understanding of how PC-IC-centred initiatives and practices can be formed in the context of JRS. By understanding both the patients’ and professionals’ views, the care provided can be even more HERIT person-centred and integrated, resulting in better and more effective care from all stakeholders’ point of view.

This study was limited to a certain context, JRS, and the data consisted of a restricted number (10) of interviews. The care process had gone quite well amongst the interviewed patients, which may have influenced on the positive experiences of them. In addition, the interviewees were in quite good condition regarding their age. It is also obvious that people of this age group are not eager to complain about the care they receive. However, the background information of the interviewees represented the average of the patients compared to all participants the Research Project in general.

As a whole, the findings show that – at least when the surgery itself happens without extra problems – older patients are mainly satisfied with the PC and integration of care they receive in different phases of the JRS process. The trouble areas are experiences of “underestimation” of the pain symptoms at primary care and feelings of lack of respect related to it. Especially human care, i.e. dignity and respect – consisting of small everyday human considerations – proved to be important PC-IC dimensions experienced by older JRS patients.

In general, the findings support previous findings on PC and IC. Along with the findings of Bourdioni et al. (2015) and Spoorenberg et al. (2015), our study reveals different preferences of PC-IC. Indeed, although all our interviewees could name important dimensions of PC-IC, their experiences of what is important varied. An example of the difference between patients was their willingness to be involved in decision-making. For some, it was a clear wish from PC-IC, like it was also in the findings of Greenfield et al. (2014), an important element of PC. However, our findings also show that there were aspects in which the patient didn’t want their opinions to guide the treatment process. For some, letting the doctor decide served as the most PC-IC care. As noted, PC can be delivered in various ways, and the practices don’t need to be enormous. Central in it is to listen and pay attention individually to the situation of the patient. PC doesn’t imply that patients should always be involved as much as possible, but that it implies that patients are involved as much as they wish to be involved. In other words, involvement in decision-making should be tailored according to the needs and preferences of individuals.

Along with the findings of Berendsen et al. (2009) or Youssef et al. (2020), our interviewees appreciated cooperation, coordination and communication. Like Freeman and Hughes (2010) also recognise, our interviewees wanted to avoid repeating their story, preferred a familiar healthcare professional, and like Berendsen et al. (2009) note, wanted information about their treatment to be transferred smoothly across healthcare staff. Inadequacies in information sharing were experienced as unclarity and lack of PC-IC, in general. Moreover, our findings show that many of the patients wished for one single coordinative person who would take care of the whole care process. A coordinator or case manager, at least for older patients, would be of value, in particular when the care journey passes the border between primary and specialised care.

It is noteworthy that our interviewees experienced the human and compassionate presence of care professionals as important dimensions of PC-IC. This is something the literature does not emphasise that much. Although, Greenfield et al. (2014) argue that being cared for with warmth and empathy, as well as being treated with dignity and respect, were important in PC. For many, compassionate and present care might consist of very simple everyday practices and central in their experience was that there was another human being available and present for them. The compassionate approach should be integral to the value base of our health services wherever they are provided.

Thus, our findings show that not only the formal practices, such as information delivery, are at the core of PC-IC. Instead, for patients, human validation and presence are something that form the centre of the PC-IC experience. That is why all healthcare professionals and researchers should ask how we can meet the needs for human aspects in care in the era where healthcare is constantly being digitalised, and professionals are met with high workloads.

Conclusions

In today’s healthcare environment, PC-IC is increasingly important. To understand PC-IC holistically, we need to expand our lens from focussing only on the service provider’s viewpoint. Including the authentic perspective of patients in different kinds of care contexts is crucial, especially of older people with frailty and multimorbidity, as they receive care from multiple sources and are thus prone to care fragmentation (Shaw et al., 2011). That is why our small-scale case study examined what the central dimensions of PC-IC from the older patient’s point of view are in the context of JRS. Our results show that when planning and implementing PC-IC initiatives, information sharing, continuity of care and compassionate encountering need to be considered, as they represent the dimensions that patients perceive important in PC-IC.

Figures

Figure 1

Data structure

Table 1

Background information about the interviewed patients

Interviewee	Gender	JRS operation	Year of birth	Intervention/control group	Phone/face-to-face
P1	Woman	Hip	1951	Intervention	Phone
P2	Woman	Knee	1945	Control group	Phone
P3	Woman	Knee	1944	Intervention	Face-to-face
P4	Woman	knee	1948	Intervention	Face-to-face
P5	Man	Knee	1937	Control group	Face-to-face
P6	Woman	Knee	1946	Intervention	Phone
P7	Man	Knee	1955	Control group	Phone
P8	Man	Knee	1952	Control group	Phone
P9	Woman	Hip	1945	Control group	Phone
P10	Woman	Knee	1938	Intervention	Phone

Source(s): Authors’ own creation

Note

1. Patient interviews 1–10 are coded as P1– P10, e.g. P9 = Patient interview number 9.