Hearing the patient voice: a qualitative interview study exploring the patient experience of a nurse-led initiative to integrate and enhance primary and secondary healthcare pathways

Abstract

Objective

The Transitional Care Nursing Service was a 2-year proof-of-concept trial exploring local health system readiness for incorporating integrated, person-centred models of care into existing health service structures within a provincial New Zealand context. Improved patient experience remains a priority in international and local healthcare policy directives. This qualitative study aimed to investigate patient experience by exploring the effectiveness of this integrated care person-centred service from the patients’ perspective.

Methods

Qualitative, semistructured, face-to-face interviews with 12 patients purposively sampled to achieve maximum variation of patient characteristics within the trial cohort. Interviews were audio-recorded and transcribed verbatim before analysing the data using thematic analysis supported by a general inductive approach.

Results

Findings demonstrated that patient interactions with the transitional care nurse positively influenced patient experience, self-reported outcomes and quality of life following hospitalisation and during the transition period between hospital and home. Participants perceived the nurse to be highly skilled in displaying kindness, empathy, accessibility and responsiveness, and communication skills with participants and their families. They perceived that their interactions with this individual team member working from an integrated care paradigm had a positive impact on their overall experience of care and recovery.

Conclusion

This study supports the use of integrated care principles to deliver person-centred care. The findings emphasise the need to place kindness, compassion and respect at the heart of care delivered to patients, and suggest these core values are an essential factor in improving patient experience and thus the effectiveness of our healthcare systems.

Key messages.

What is already known about this subject?

• Patient experience is widely recognised as being one of the most important factors to consider when designing, providing and evaluating health services.

• However, little literature exists to document the patient experience of integrated, person-centred health services.

What does this study add?

• In this study, patients perceived that the demonstration by their wider healthcare team of increased kindness, caring, accessibility and responsiveness, and communication skills had a positive impact on the patient’s experience of their healthcare journey, well-being and recovery.

How might this impact on clinical practice or future developments?

• This study suggests that care teams able to work within person-centred integrated care service delivery paradigms may achieve better patient-reported outcomes and experiences.

• This was an exploration of a provincial small-scale service, and further research into transferability of the model within larger scale services would be beneficial.

Introduction

The principles of ‘integrated’ and ‘person-centred’ care are increasingly recognised at an international level as important cornerstones in the redesign and delivery of healthcare services.^{1 2} Singer et al defines integrated, person-centred care as, ‘care coordinated across professionals, facilities, and support systems, continuous over time and between visits, tailored to the patients’ needs and preferences, and based on shared responsibility between patient and caregivers for optimizing health’.³ Primary healthcare services are seen as playing a pivotal role in laying the foundations for integrated care, as they provide the key first contact for many patients with complex needs and their families.⁴ Integrated, person-centred care is widely accepted as one of the most promising solutions to address many primary and secondary care sector challenges including workforce demands and current capabilities, traditional models of operation, and rising patient demands due to multimorbidity, chronic conditions, ageing populations and complex needs.^5–13 In addition, the need to consider new, innovative service delivery models is increasingly important as a result of the COVID-19 pandemic and the evolving impact this has on existing healthcare systems.^14–16

This qualitative study of patient experience uses the Transitional Care Nursing Service model, a 2-year proof-of-concept trial developed in New Zealand and operated in 2016–2017. It aimed to explore local primary and secondary healthcare service readiness to accommodate an integrated, person-centred model of care. A nurse was employed, as a ‘transitional care nurse’, in a new and standalone role based at a large general practice but conducting her duties in three working environments: the general practice, the hospital, and the patient’s home and community. She was given freedom from prior organisational constraints to develop the role based on integrated and person-centred philosophies. Her role was defined using Singer et al’s definition³ and Curry and Ham’s definition of integrated care, which builds on this by adding a focus on vertical (between primary, secondary, and community health and social care services) and horizontal (across acute services) integration.¹⁷

An overview of the original model (developed by Macklin, Pert and Dowell (2015)) and service aims (these are the original service aims; the quantitative results of the service evaluation are not included in this qualitative study of patient experience) is shown in figure 1 and box 1. Patients and their whānau (families) are at the centre with the aim to provide services based on what patients and their families said they needed and wanted, rather than following prescriptive or boundary-defined models. All patients enrolled at the general practice participating in the proof-of-concept trial were eligible to access the service if they required support to self-manage their health needs. Many patients accessed the service during, or following, hospitalisation for support in transitioning to home. There was no time limit imposed on the nurse–patient relationships and services were concluded once patients believed they had enough tools and confidence to continue to self-manage in the community without structured support from the service. This person-centred fluidity of service provision, and embedding the role and its associated activities within multiple teams in the general practice and hospital wards, were key differences compared with existing local models of service delivery. This flexible and non-prescriptive approach taken with time, activity, location and reach within the Transitional Care Nursing Service model made it a new and much broader role compared with more traditional models of service delivery such as the local District Nursing Service. The Transitional Care Nursing Service was able to work closely with these existing community services to use local resources, while avoiding service overlap.

Figure 1.

The Transitional Care Nursing Service model. *Non-governmental organisations.

Box 1. The aims of the Transitional Care Nursing Service and evaluation.

Greater support for patients to self-manage their health journey

• Through increased patient autonomy; person-centred and patient-led care planning; enhanced health literacy development support; and more comprehensive engagement of the patient and their family in primary care and community services.

Enhanced safety and quality of patient health services

• Through greater information sharing between health services involved in patient care; up-to-date medicines reconciliation; and a more person-centred approach.

Improved service efficiencies

• Through patients being supported to access appropriate services at appropriate times; greater patient care coordination to minimise duplication of services; tests and resources; and to optimise utilisation of outpatient, primary and community services.

There is little published research on the patient experience of integrated care globally,^{18 19} or articulation of the patient voice,^{11 18} an anomaly considering patients are those who can most accurately judge their care needs.^20–22 This qualitative study explores the impact of the Transitional Care Nursing Service, from the patient’s perspective and describes patient journeys and experience across every facet of their care.²⁰ It adds important information about the practice of integrated, person-centred care from the patient perspective.

Materials and methods

Patient and public involvement

Patients were involved in the initial genesis of the Transitional Care Nursing Service project as a result of discussions between patients and health professionals at the local general practice. It became clear that existing services were not effectively bridging patient needs between primary and secondary care. A funding proposal for the project was developed as a result. Patients were encouraged to direct interview themes according to their own needs and adjusted themes adopted for subsequent interviews. On publication, patients will be sent results in a format suitable for general patient readership.

Nurse recruitment

Once the service business proposal had been accepted by the key funding stakeholders, a job description was developed, and the process of recruitment commenced to employ one full-time equivalent nurse.

The position was advertised across local and national health sectors, and a heavy emphasis was put on interpersonal skills combined with 5+ years of clinical experience. It was the expectation that the nurse would possess sufficient generalist nursing knowledge and expertise with this level of experience.

In this case, the nurse recruited for this service came from an intensive care nursing background. Her interpersonal skills displayed during the selection process made her a very appropriate candidate. Possibly due to her experience in intensive care nursing, she had enhanced skills in providing close emotional support to patients and families. Beyond a comprehensive orientation to the general practice, hospital settings and community services involved with the role, there was no specialised training provided.

Participant recruitment

Patients were recruited from one general practice of approximately 12 000 registered patients in a large provincial town (population: 75 000) in the North Island of New Zealand; all patients had access to the Transitional Care Nursing Service, including all age groups. In 2016 and 2017, 735 (6.4%) of the practice’s patients accessed the service. In broad terms, the practice population demographics (ethnicity, age, gender, socioeconomic status) closely resembled the demographics of the wider regional population.

Participant selection was based on experience of some level of care, including a home visit, provided by the transitional care nurse following a period of illness or injury requiring admission to hospital in 2016 or 2017. To explore family experience of patient care, we included one participant who was the wife of a patient who passed away during the evaluation period; and one parent of hospitalised children as ‘patient’. Sampling variables also considered were gender, age, ethnicity, socioeconomic status and level of interaction (light vs heavy) with the transitional care nurse. The sampling frame of 12 participants provided an illustrative collection of narratives, which achieved data saturation. Participant recruitment occurred in three stages, including a mix of purposive and random sampling techniques designed to minimise selector bias and achieve maximum variation in the final sample. Staged recruitment enabled reflexivity within the data collection and analysis process and ensured evolving trends within the data were responded to.

Verbal consent was obtained from potential participants, by the transitional care nurse, for NM to contact them directly to arrange an interview at a time and place of their choosing (all participants chose their own homes). Written consent was obtained prior to commencing the digitally recorded interview. Interviews were conducted between January and May 2018 and transcribed immediately following each interview. The interview guide covered the following broad topic areas shown in box 2.

Box 2. Semistructured interview guide topic areas.

• Participant’s background.

• Reason for their hospitalisation.

• Recalled experiences of their hospitalisation and transition/s to home.

• Medicines use and understanding.

• Recalled impressions of the transitional care nurse and service; and if they found the service helpful, why and how.

• Whether they felt their hospital, general practice and community care teams worked well together.

• What could have been done differently by any member of their care teams during their episode of care and recovery.

Qualitative research approach

A thematic analysis framework was supported by a general inductive approach that included: familiarisation with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report.^{23 24} Software program NVivo V.10 was used to code and review the data. NM completed initial coding of the data, all authors discussed and refined throughout the process as required. The final framework was discussed and agreed by all authors. For reporting the study, the Standards for Reporting Qualitative Research reporting guidelines were used.²⁵

Researcher characteristics

NM and AD were involved in the original service model development and quantitative evaluation for the Transitional Care Nursing Service proof-of-concept trial, which operated in 2016–2018. NM was the project manager of this service and worked closely with the transitional care nurse but had no patient contact prior to recruiting participants for this qualitative study. The data collected for the study and reported here were completed as part of NM’s Master of Primary Health (University of Otago, 2018),²⁶ supervised by AD and CM.

Results

Patient characteristics

Fourteen potential participants verbally consented to participate. However, two were unable to be contacted following the initial approach, leaving a final sample size of 12. A summary of participant characteristics is outlined in table 1.

Table 1.

Participant characteristics (n=12)

Characteristics		Number of participants
Sex	Female	8
	Male	4
Age (years)	0–25	2
	26–35	0
	36–45	0
	46–55	2
	56–65	2
	66–75	4
	76–85	0
	86–95	2
Ethnicity	Māori	3
	NZ European	9
Socioeconomic deprivation quintile27	1 (least deprived)	0
	2	0
	3	2
	4	5
	5 (most deprived)	5
Living with a long-term condition?	Yes	9
	No	3
Reason for admission	Complications following fall	3
	Exacerbation of CORD or COPD	2
	Viral infections	2
	Cancer	1
	Complications of alcoholism	1
	Cellulitis	1
	Orthopaedic surgery	1
	Abdominal surgery	1

COPD, chronic obstructive pulmonary disease; CORD, chronic obstructive respiratory disease; NZ, New Zealand.

The final sample of 12 participants closely reflected the patient population who received intervention from the transitional care nurse in 2016–2017, with 25% of the research participants identifying as Maori, and 41% of the research participants from socioeconomic quintile 5 (most deprived).²⁷

Illness and treatment experience

Every patient reported feeling significant emotional impacts associated with their illness, treatment and care during hospitalisation and longer term recovery at home. Examples of these experiences were grouped into contextual themes, shown below.

Transition-related anxiety about discharge from hospital to home

The majority of patients felt simultaneously conflicted feelings about returning home on the day they were discharged. Most felt happy but also nervous and worried about coping at home.

I did want to come home, but I didn’t want to come home because I didn’t know what I was going to do…when (sister) went to work, and I was on my own, you know. (P1)

I feel like some of the nurses were quite keen for us to go because they’re busy and we were a big drain on their resources having twins in there you know…I started suffering a bit of anxiety, thinking how am I going to keep you alive when I get home, if there’s no machines to do all this…But we were ready to go, that day that we went I was ready to be at home again. (P12) (parent of high-need twin babies)

Loneliness and isolation during hospitalisation and once home

Eight of the 12 patients described feeling a sense of loneliness and isolation during their hospitalisation, which continued when they were discharged home. For each of these patients, their illness, prognosis or residual functional impairments had an impact on their ability to independently perform activities of daily living or maintain active contact with people and places outside their home.

You come out (of hospital), you’re taken home, right, you’ve got to get on with it. And a lot of people haven’t got anybody. And they’d just sit. It’s easy to sit, I can tell you… (P2)

The first time (leaving hospital) it wasn’t too bad. But the second time…I sort of sat here thinking, oh you know all I’ve got to look forward to today is the district nurse and the caregiver. (P1)

Feeling like a burden to others

Many of the patients described feeling like a burden in their interactions with hospital care teams during hospitalisation, and with their family and support networks following discharge. In some instances, patients reported actively avoiding asking for help from their hospital care teams because they felt uncomfortable doing so. They felt conscious of the demands they were placing on family members to care for them on discharge and this further exacerbated their feelings of loneliness and isolation.

You know, I couldn’t even talk to my daughter about it because I didn’t want to worry her. There’s things that you can say and things that you can’t to your own, you know. (P6)

Key themes relating to the role of the transitional care nurse

Two key themes emerged from the data; these, together with their subthemes, are shown in box 3.

Box 3. Summary of key themes and subthemes.

Theme 1: the Transitional Care Nursing Service helps to alleviate the impacts of illness and treatment

• Relieving aspects of loneliness and isolation.

• Supporting health literacy and knowledge.

• Supporting appropriate medication usage.

• Supporting whanau and families.

• Coordinating care and access to services.

Theme 2: patients perceived differences in their care provided by the transitional care nurse compared with their other care team members

• Perceived empathy and kindness.

• Accessibility and responsiveness.

• Communication skills.

Theme 1: the Transitional Care Nursing Service support helps to alleviate the impacts of illness and treatment

Relieving aspects of loneliness and isolation

All but one of the patients felt very strongly no one else within their care teams or support networks provided the level of support and reassurance they received from the transitional care nurse; she filled a gap in their care that would otherwise go unfilled.

…there has to be (Transitional Care Nurse), because what would we do, who would we call? And like for some people who’ve got nobody, they’ve got no family, and who do they ask? (P1)

Supporting health literacy and knowledge

Eleven of the 12 patients reported that the transitional care nurse helped them considerably in understanding aspects of their illness, treatment, and how to self-manage their recovery or ongoing illness. They felt that she was accessible and responsive when they had questions about their care.

…to know that there’s someone there for backup, if you were a bit desperate for an answer…that was always my call, ring (nurse)… (P9)

Supporting appropriate medication usage

Assisting with medicines reconciliation processes following hospitalisation, and patient support to use medicines correctly, were operational objectives of the service. The majority of patients found this service useful, especially following discharge home.

…sometimes I wasn’t sure about my medications so I rang her and she’d be straight out and fix things up because you know, if you ring the doctor or the doctor’s nurse, sometimes you don’t hear back and you get…a perfect stranger nurse asking you, and you gotta go right through it again. (P1)

Supporting families

The transitional care nurse played an important role in supporting the families of the patients she was involved with. Patients described the reassurance that they felt, knowing that their family members also had access to information and support.

I just think she (Transitional Care Nurse) was a lot of help to (husband), you know like, because he was so worried, and you know like the doctors are not accessible all the time. And he could ring her if he needed to know something. So I think that, yeah, it was good for him. (P4)

Coordinating care and access to services

The transitional care nurse arranged transport to follow up appointments for patients, coordinated multiservice input and information flows, and arranged follow-up care with community social and health services. Patients appreciated assistance with coordinating these multiple facets of care.

She’s taken me to different medical things I’ve had to go to, she’s taken me up to the hospital a couple of times. She’s also taken me down to (rehabilitation centre), I had to go down there and do some rehabilitation stuff. (P10)

Theme 2: patients perceived differences in their care provided by the transitional care nurse compared with other care team members

Patients categorised three clearly defined characteristics of their relationships with, and perceptions of, the transitional care nurse: perceived empathy and kindness, accessibility and responsiveness, and communication skills. Patients distinguished these transitional care nurse characteristics compared with other care team members (care team members were identified by patients as including the transitional care nurse, hospital doctors and nurses, and general practitioners (GPs) and practice nurses) creating perceived points of difference in the patient’s care journeys.

Perceived empathy and kindness

Providing reassurance was a frequently recurring theme during the interviews. Patients described their relationship to the transitional care nurse in many different ways. They felt she interacted with them as a friend would, they appreciated her use of physical contact as a form of demonstrating engagement, they felt she was an advocate for them and someone they could ask for help if needed.

I think she just turned up at the right time. I needed to see somebody - a friendly face that could kind of reassure me that everything was going to be okay, and I think she might have given me a hug. And just I remember the little card with the number on it, just thinking I can call her if I need to for anything, for extra support, and I think that was kind of like a little ray of sunshine on a cloudy point. (P12)

Straightaway it was awesome because it’s the way she spoke, I felt good. She’s got a way of making people feel good about themselves… there was times she was there, and I just felt like hugging her, because she was just awesome. (P6)

Patients described the importance of both the presence and absence of kindness and empathy by health professionals during the vulnerable period of hospitalisation and transition to home. The transitional care nurse was perceived as going ‘above and beyond’ in terms of kindness and empathy, and this was identified by most patients as positively influencing their experience during their episode of care.

…she’s so lovely. She’s amazing and it’s so important because when you’re that sick, that you can’t care for yourself and you know when you’ve got (hospital) nurses like aggro (aggressive) one, and then you’ve got (TCN), you know she’s a lifesaver and you need that. You need that human contact, you need somebody to be an advocate for you that genuinely cares about you. Because that’s how I felt, I felt she genuinely cared and she was amazing, like just went above and beyond. (P7)

Accessibility and responsiveness

The transitional care nurse’s accessibility and responsiveness to patients, with questions or concerns about their treatment, medicines, follow-up or self-management, were reported by patients as being a point of difference when compared with other members of their care teams.

It’s nice to have someone to talk to because (Transitional Care Nurse) would sit there and talk to you and explain things to you and where some of the nurses wouldn’t. (P3)

Many patients found the transitional care nurse’s accessibility to be reassuring, and they used her as a point of contact to obtain information or advice, which was provided to them in a timely way.

Just being able to ring somebody and ask them…sometimes they were silly things that were just bugging you, or…you just wanted reassurance quite often…and you can’t really do that with your doctor because I mean they’re so busy and then they have to look up their notes. (P4)

Patients felt it was sometimes difficult to access other care team members when they needed information or support, and appreciated the transitional care nurse filling this perceived gap in access to services and support.

They (GPs and practice nurses) tell you to wait and they’ll find out for you and they never come back. (P9)

…they (GPs) haven’t got the time to do it, they haven’t got the time to spend with the family, you get down there for fifteen minutes and that’s so and so, and that’s $35 or whatever it is, and no I can’t see your family at the same time, they need to make another appointment. (P2)

Communication skills

Most patients felt that the transitional care nurse displayed a higher level of communication skills compared with their other care team members. The patients’ perceptions were usually framed in the context of how her style of communication made the patients feel, as well as her understanding of their illness, treatment and recovery.

(Transitional Care Nurse) come around here and oh you know there’s people you can actually click with, and there’s people you can’t…and there’s people that put on false airs, or they talk at you, not to you…She called a spade a spade… she’s really awesome. (P6)

Patients described barriers to understanding and processing information given to them by their hospital-based teams, when they were acutely unwell. Often information was in a form that the patients could not understand well, using complex terms and jargon.

…because half the time I didn’t know what the doctors were talking about…because I was on heaps of painkillers and stuff like that and you don’t really take it in, you know?…Because if (Transitional Care Nurse) had come in there, she would have explained to me what they meant, you know…I didn’t know what they meant by washouts and things like that. (P1)

I can remember, you know, them (hospital team) coming round, and that I went to sleep, and I couldn’t remember whether they’d been or not and what they’d said. And so I had to ask the nurse, and of course they don’t really have the notes…It’s almost like - can you write it down so when I wake up I can remember what you said? (P4)

Discussion

This paper describes the experiences of patients receiving care from a new and innovative form of integrated care service, the Transitional Care Nursing Service. The results of this proof-of-concept trial show that the transitional care nurse was able to provide a number of integrated resources and support to patients in ways not provided by activities and actions of the existing primary and secondary health sector care teams. Based on the patient-reported experiences, their interactions with the transitional care nurse had the ability to significantly affect both patient experience as well as create tangible improvements in their perceived outcomes and quality of life following hospitalisation. These findings are relevant when considered alongside other international studies that found that patient perceptions of having received person-centred, integrated care have a positive impact on patient satisfaction and outcomes, such as reduced emergency department utilisation and increased use of outpatient services.20 21 28 29

At the time of implementation, this person-centred, integrated care model of service delivery had several points of difference to other care models. The participants of this study identified the transitional care nurse as being an extension of care received from their medical home, their general practice. No other examples could be found from the literature that illustrated a similar service model, having a nurse working as a member of the general practice and multiple hospital ward teams simultaneously to support shared patients; driven and operated from within a general practice organisation. This provided greater integration between the primary and secondary healthcare services and community social and health agencies, as opposed to models driven by hospital organisations.

As indicated by the results, another difference was that the service offered to patients was based on what they said they wanted and needed; it was not prescriptive or formulaic in terms of regularity or duration of involvement with the service. This flexibility to tailor interventions as determined by patients themselves has been identified in other studies as a predictor of success, especially when working with high-need populations,^30–32 but can be difficult to achieve as a service quality.³³

Self-reported benefits identified within this study included improvements to the patients’ experience of hospitalisation and transition to home; increased health literacy and appropriate medications usage; confidence in self-managing recovery following discharge; improvements to the family experience of the patients’ episode of care; and improvements to patients’ sense of control, well-being, and perceptions of their overall quality of care.

Characteristics of care that patients identified as being particular to the transitional care nurse and of most value to them as patients included perceived enhanced kindness and empathy; accessibility and responsiveness; and good communication skills. These findings are consistent with other literature; a 2005 systematic review into patient perceptions of quality of care²⁹ identified person-centred care, accessibility, communication and information flow, courtesy and emotional support and organisational efficiency as key markers of quality care.

Communication by care team members to patients and their families is well documented as being influential with regard to patient experience and perceived outcomes.^34–38 The patients’ views on the communication skills of the transitional care nurse and their other care team members reinforce the important role that communication plays in patient experience. By providing information patients wanted and needed using a style of communication that was person-centred and approachable, the transitional care nurse was able to positively impact on patients’ abilities to self-manage their conditions.

Many of the perceived benefits identified by the patients during their recounting of their experiences with the transitional care nurse could be attributed not to the integrated service design, but to interactions with this individual nurse herself. They viewed her as exceptionally kind and empathetic; the impact of the individual personalities of those providing care to patients, on patient recovery and outcomes, has been explored in several studies.^{37 39–43} This is pertinent for this study. First, the perceived exceptional nature of the nurse at the centre of this study may not be easily replicable, and thus a different nurse may yield different results in terms of patient-perceived experiences and outcomes. Second, the challenges of practising in a highly empathetic and accessible way over a sustained period of time, while beneficial to patients, may lead to carer fatigue of the practitioner or ‘burnout’.^44–47

The purposive sampling and three distinct phases of recruitment yielded a selection of information-rich cases providing an in-depth exploration of patient experience. Partway into the research, a new phase was added to the recruitment process to minimise selection bias when concerns emerged that the data set was becoming too homogeneous and overly positive views of the service were being established. A limitation as discussed above is that the exceptional nature of the nurse in this instance provided very positive results that would be hard to replicate. This highlights the importance of a focus on core values of kindness and communication in training of health care professionals, from a patient experience perspective.

Conclusion

The reported experiences gathered during this study reinforce the value of person-centred, integrated care service models in achieving improved patient experience and health outcomes for patients and their families. In integrated care settings, patients valued demonstration of increased kindness, compassion, openness and a focus on clear communication; training and attention to these issues can have a significant impact on patient experiences and subsequent ongoing recovery in the community.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplemental information. Study protocol, in the form of the original Master's study proposal, is available on request.

Ethics statements

Patient consent for publication

Not required.

Ethics approval

Ethics approval was granted by the University of Otago Ethics Committee (ethics committee reference HD 20/013).