Haematology CNSs’ understanding and application of person-centred care: a pilot qualitative evaluation

Background

There is currently no consistent definition of PCC and there are many different terms to explain a similar topic (The Health Foundation, 2016). It must be stated that this study is not intended to provide a definitive description of PCC; however, there is research that views PCC as a broad concept, with different components (de Silva, 2014). From reviewing the literature, there are similarities regarding what qualities are required to successfully provide PCC. Giusti et al (2020) discussed the importance of valuing and promoting quality of life (QoL) and the patient's own goals, as well as improving health outcomes. This supports earlier work by Kitson et al (2013) who reported that a key theme is patient's valuing the respect that health professionals show towards their own personal values, preferences and needs. Another quality of PCC that has been repeatedly mentioned in the literature is a shared decision-making approach centred around the patient's emotional, psychological, and practical support (The King's Fund, 2012, Kitson et al, 2013).

The origins of PCC derive from work by the American psychologist Carl Rogers (1959). Although the principles were initially used in psychotherapy and counselling, they can also be applied to other areas such as healthcare or education (Leplege et al, 2007). Rogers’ idea of non-directive therapy, later called ‘person-centred’ therapy, involves the therapist following the client's lead, and sees the development of a collaborative relationship (Joseph, 2015). According to Rogers, the main characteristics of PCC are transparency of the health professional, a positive attitude, and empathy. The patient is therefore able to be guided to find their own solutions due to the caring and open relationship they have with the caregiver.

Rogers’ theory appears to fit well within healthcare's 21st century definition of PCC. The NHS requires a workforce that partners with patients to develop improved outcomes, and this starts with educating health professionals using a skills-and-behaviours-based framework. By combining many of Rogers’ characteristics, from developing genuine partnerships with patients and their families, and seeing the person in the context of their whole life, this ultimately allows for the development of a relationship where the patient can collaboratively manage their own health outcomes.

Many of those working within the NHS are governed by bodies who also promote the use of PCC, for example, the Nursing and Midwifery Council (NMC) Code requires nurses to be conscious of and acknowledge the qualities that make patients unique so that they can put their needs first (NMC, 2020). The General Medical Council (GMC) states that doctors must work in partnership with patients (GMC, 2025). Both regulators mirror aspects of Rogers’ characteristics of PCC with regards to forming a collaborative relationship with patients.

There have been several inquiries into the standards of care at various NHS trusts, from failures at Ely Hospital in Cardiff in 1967 to the Mid Staffordshire Hospital inquiry in 2013 (Powell and Walsh, 2019). The Mid Staffordshire inquiry found that there was a culture of patients lacking basic nursing care (Francis, 2013). It highlighted concerns around a lack of individualistic and holistic care, which is of central importance when providing PCC. One key finding from the inquiry was the failure to listen to and involve patients and their families during care (National Voices, 2014).

PCC is an approach that puts the person at the centre of the care experience, considering their individual needs, preferences, and goals (Evén et al, 2019). Research shows that this approach leads to better health outcomes, increased patient satisfaction and improved quality of life (McCormack and McCance, 2006; National Institute for Health and Care Excellence (NICE) 2012; McCormack, 2022). Therefore the meaning of PCC will differ from person to person (The Health Foundation, 2016). The Health Foundation (2013) produced principles of PCC: care should be personalised, co-ordinated, and enabling. Ultimately, patients should feel empowered and educated to protect their health and manage their conditions (National Voices, 2014).

Despite the recognition that PCC has many benefits, its increasing acknowledgement in government policy and in research, the frequency and level of PCC being delivered in practice remains low (Dewing and McCormack, 2017). Laird et al (2015) argued that most patients only receive person-centred ‘moments’. These inconsistencies are influenced by a variety of contextual factors such as the challenges present in the care environment (Laird et al, 2015), difficulties in communication (Younas et al, 2023) and a lack of time spent with patients (Esmaeli et al, 2014).

One of the reported barriers to providing PCC is preconceptions of what health professionals believe is PCC, especially when they believe that they are already providing it so do not feel the need to adjust their practice (Ahmad et al, 2014). This is a commonly cited barrier (The Health Foundation, 2016), but once health professionals develop a deeper understanding of PCC, they realise they are not delivering it sufficiently (The Health Foundation, 2013). Personal attributes, such as education, understanding of PCC, nurses’ self-awareness and coping strategies are important facilitators of PCC (Carvajal et al, 2019).

Effective communication is essential for providing PCC. However, difficulty in communicating with patients appeared to be a barrier in more than one study – specifically, language barriers and medical terminology (Giusti et al, 2020; Younas et al, 2023). Language barriers can lead to misunderstandings, inaccurate information being delivered, and poor patient satisfaction (Karliner et al, 2011). This supports earlier work by Hasnain et al (2011) who found that Muslim women in the USA did not feel that their religious or cultural needs were met by their healthcare providers. As well as language barriers, other challenges were cited as a lack of understanding of cultural and religious requirements, such as the preference for being seen by a female health professional.

The importance of effective communication within the multidisciplinary team (MDT) is also recognised as a facilitator for PCC delivery (Lamb et al, 2013). To deliver PCC successfully, all MDT members must communicate effectively. This facilitates collaboration between team members, allowing for the development of treatment that best suits the patient (NHS England, 2014). Evidence shows that patients have limited opportunities to influence the decision-making process within MDT meetings (Taylor et al, 2014). The question of how to best bring patient preferences into the MDT is complex. Unless the patient is present in the meeting, which is uncommon, the CNS is often viewed as the patient's advocate (Lamb et al, 2013). Therefore, it is imperative that the CNS should build a strong relationship with the patient to fully understand their needs.

There are key functions within all CNS roles. One function is to act as a key worker across the whole care pathway (National Cancer Action Team, 2010). It has been reported that patients who do not have a CNS at diagnosis have lower survival rates (Alessy et al, 2024) and it is a key performance indicator of PCC within London Cancer Alliances (Transforming Cancer Services Team, 2020). In the National Cancer Patient Experience Survey (NHS England, 2022), 91.5% of participants reported that they had a main person of contact (CNS) at diagnosis and 71.1% had a discussion at the beginning of treatment about their needs or concerns. However, for those who were living with or beyond cancer, only 31.1% reported that they had received emotional support throughout their treatment.

The Leukaemia ‘Watch, Wait and Worry’ campaign (Leukaemia Care, 2025) reported that pre-pandemic, just 24% of patients on Watch and Wait with chronic lymphocytic leukaemia said they had been offered access to a CNS. During the COVID-19 pandemic, only 39% of patients on Watch and Wait had successfully contacted their CNS. Clearly, there is a lack of support at various points of the patients’ experience and understanding the barriers to this could be the start to improving PCC at all stages of the patient's pathway.

Evén et al (2019) stated that an important principle of PCC was for the health professional to get to know the patient well enough that they could view them holistically and tailor their care to them, enabling compassionate care and improved shared decision making. Health professionals often have limited time to spend with patients, making it challenging to establish good communication and understanding of the patient's needs and preferences. Carvajal et al (2019) found that a lack of allocated time resulted in nurses not being able to sufficiently support and understand the needs of patients. Similarly, Esmaeili et al (2014) found that patients did not receive PCC due to nurses having insufficient time to understand patients’ needs and concerns. Moore and McQuestion (2012) discussed that once the principles of PCC are embedded within the team's understanding, it becomes easier and less time consuming to implement, especially once patients develop their independence through PCC.

Method

This research study, which aims to evaluate the experience of PCC delivery (Table 1) within a group of CNSs, was carried out in a Haemato-oncology department within a leading, dedicated cancer centre in the UK. The haematology department treats a variety of haematological malignancies including lymphoma, leukaemia and myeloma. Currently there are a total of 15 haematology CNSs working in the department.

Purposive sampling identified participants working in haematology as CNSs to provide an insight into the PCC experience. A total of 10 haematology CNSs were initially identified as appropriate to take part; however, two were unable to participate due to work commitments and illness. All participants were from the same hospital trust, and had been in their role for a minimum of 12 months. The Student Research Toolkit (Health Research Authority, 2022) identified that NHS approval or review by an ethics committee was not required.

Qualitative semi-structured interviews conducted virtually were used. This approach was chosen as the research sought to explore and understand the perspectives of individuals and gain a deeper understanding of their experiences with haematology CNSs delivering PCC (Creswell 2014). The interviews lasted between 30 and 40 minutes, beginning with an explanation of the study's aim and the opportunity for the participants to ask questions. Overall, four open-ended interview questions were used for all participants to guide the interview towards the research aims (Table 2).

Due to COVID-19 regulations and work commitments, interviews were conducted virtually, which enabled them to be recorded and automatically transcribed. The interviews were conducted in a private room to maintain confidentiality for all participants. Verbal consent was obtained to record and transcribe the interviews. Participants were reassured that interviews were confidential, and any quotes used would be anonymised and not attributed to any individual. At the end of the interview, it was explained that recordings and transcripts would be stored on a password-protected personal computer.

The recorded interviews were reviewed several times alongside the transcripts to check for mistakes and achieve a deeper understanding of the participants’ experiences of PCC.

The interview data were then thematically analysed using the 6-stage method developed by Braun and Clarke (2006) (Table 3). By closely examining the data, common themes were identified, such as topics or ideas.

Results

The thematic analysis gathered a range of insights into how the CNS team experience their delivery of PCC, namely the barriers and facilitators, as well as their understanding and interpretation of PCC. The following section presents these findings.

Discussion

The evidence gained from the interviews generated a rich source of qualitative data that enables deeper understanding of the experiences of haematology CNSs delivering PCC. The findings have raised discussions and learning points, including the facilitators and barriers to its delivery, their understanding of PCC and whether it is successful.

Participants discussed the importance of communicating effectively in MDT meetings to ensure the patients’ specific needs were discussed and included in decisions made regarding their care. Lamb (2013) discussed the failure to consider patient-centred information in MDTs, leading to a poor decision-making process. In this study it was found that, during MDT meetings, the patients’ wellbeing was discussed and they were viewed holistically. The participants were able to advocate for their patients, ensuring their needs were considered.

Evidence shows a connection between the relationship patients have with their CNS and the extent to which they participated in their care (Santana et al, 2018). In this study, one CNS discussed the fact that one of their patients had not engaged until midway through treatment, preventing PCC conversations until that moment. It would be significant to understand the reasons for the lack of initial engagement. It may have been related to the lack of time, affecting the CNS's opportunities to have those conversations with the patient, to listen to them effectively and make them feel empowered enough to engage with their treatment.

When discussing communication between the CNS and the patient, one area that was not initially considered by the researcher was when communication breaks down due to differences in opinion. The example seen in the study was a patient who wanted to delay treatment, but this was deemed an ‘unwise decision’ by the medical team. Khankeh et al (2023) likens patient's adherence to a spectrum, going from complete adherence to complete refusal of treatment recommendations. Their study findings suggest that effective communication between the patient and CNS, particularly from the onset, can improve adherence to treatment. Effective communication is promoted by listening to patients, acknowledging and discussing uncertainties and responding empathetically without judgement (Santana et al, 2018). These aspects of communication, can help to promote PCC.

Carvajal et al (2019) and Evén et al (2019) described the importance of health professionals knowing their patients well enough so that they can build a good relationship. In this study, the participants cited large workloads, insufficient time available to spend with patients and a lack of appropriate rooms available in which to see them as barriers to building a relationship. This challenge is supported in the literature from Dulko et al (2013), Esmaeili et al (2014) and Evén et al (2019), who reported these factors as preventing PCC from being provided to its full potential.

Nevertheless, it could be argued that the CNS team have a strong culture of PCC, facilitated by their knowledge and extensive experience compared with more junior nurses. Both Klein (2021) and Ahmad et al (2014) discuss the CNS as an expert and a leader within the MDT. The findings are significant because, by showing a consistent appreciation of what PCC is and how it should be delivered, as role models, the CNS team can cultivate a culture of PCC with more junior health professionals. A culture of PCC, enabled by a supportive environment, can spread throughout the whole department or organisation (Ross et al, 2015).

Given the importance of evaluating practice, it was surprising that none of the participants discussed this in their interviews. The literature highlights the various methods to evaluate PCC and Cribb et al (2022) promote the use of patient-reported outcome measurements (PROMs). An example currently being used by the CNS team, and mentioned by one participant, are HNAs. The HNA is a tool that identifies patient needs and from this, a care plan is created collaboratively between the patient and the CNS (Macmillan Cancer Support, 2023). Unfortunately, the one participant who mentioned the use of the HNA, explained that it often did not get completed.

HNA data is measured in a majority of NHS trusts (Lavender et al, 2022). However, HNA data only monitors a single PCC conversation, usually carried out by a CNS or cancer support worker. It is likely that there will be many instances of PCC throughout the patient's experience that are not being recorded (Lavender et al, 2022). There are various QoL surveys available, although not widely used. In a study of patients with myeloma, only three out of 26 centres across England and Wales were using QoL questionnaires (Kirkpatrick et al, 2023). Evén if we can measure an improvement in the patient's QoL, can this be directly attributed to the completion of a HNA and careplan? Further research is required to evaluate what methods are currently being used to measure PCC and their level of success.

Santana et al (2018) emphasised the importance of organisations providing a working environment that supports staff to implement PCC. Examples of these include providing protected time and designated space for CNSs to provide more PCC, or specifically the development of haematology support worker roles to support PCC delivery by assisting patients to complete HNAs. The listed examples have the potential to increase and improve the PCC being delivered to patients. As previously identified, PCC can lead to better health outcomes, increased patient satisfaction, and improved QoL. Therefore, if haematology CNSs have more resources to provide PCC, patients will have an improved experience.

A recommendation for nursing practice would be to promote the culture of PCC within the wider haematology team. This could be done by providing education to the team around the concept of PCC and how it can be delivered effectively. The creation of additional roles, such as a cancer support worker, could be a resource to enable greater provision of PCC. Furthermore, the senior leadership team, which includes the CNS team, also consists of consultants and other lead nurses. It is important that they collectively promote a culture of PCC and share the vision of PCC, to support junior staff to practise PCC.

Limitations

There are several limitations to this study, such as the small sample size. Considering that the study sample is a group of specialist nurses working at a tertiary referral centre, the findings generated are not representative of the wider haematology department, across other areas of the cancer CNS workforce or the wider haematology nurse community. A larger, multi-centre study with more varied members of the team, for example, junior nurses or the medical team, would provide a more representative sample within haematology and a greater understanding of PCC delivery within cancer nursing. Additionally, participants worked alongside the researcher, so a potential limitation could have been researcher bias (Creswell, 2014). To mitigate this, a pilot study could have been used to identify potential research bias. However, the sample size was already limited, and the researcher did not want to exhaust the participants.

Conclusion

The findings of this study support the definitions of PCC theory and the impact a clear understanding of PCC within the team can have on patients. As well as understanding the values of PCC, the CNS team report behaviours that also align with those in the literature. As they are role models within the team, this could result in a more effective culture of PCC among other health professionals.

This study offers an initial exploration into the experiences of haematology CNSs in delivering PCC. It provides an understanding of the barriers and facilitators associated with the provision and delivery of PCC. The research has shown a shared understanding within an experienced and influential group of health professionals. It offers recommendations into measuring the success of PCC delivery within the team, starting with involving the patient to understand the value of PCC. Additionally, it promotes a culture of PCC within the wider haematology team to enable greater provision of PCC.

KEY POINTS

CPD reflective questions