Service user and carer experiences of the advanced nurse practitioner role in a memory assessment team

Advanced nurse practitioners

The advanced practitioner role has expanded rapidly in the past 20 years (Sheer and Wong, 2008; RCN, 2018). These roles are known to exist in a wide range of practice settings (HEE, 2017; Parker and Hill, 2017; ICN, 2020).

However, there is little evidence in the research literature that details the overall contribution of the ANP in mental health towards health and social care outcomes. Fung et al (2016), in a Hong Kong-based study, described the impact of what they termed as psychiatric advanced practice nurses (PAPNs) on service users' overall wellbeing. Also in the Hong Kong context, Fung et al (2014) found PAPNs in a mental health context have varying and complex roles but need to show that outcomes of their interventions are cost-effective.

Research pertaining to memory clinics and advanced nursing roles has mainly been conducted in Australia by a group at the Wicking Dementia Research and Education Centre in Tasmania. Bentley et al (2013) reported that the main benefit of having nurse practitioners in Tasmania was improved support for general practitioners and improved access to timely diagnosis. Although this work was limited to a ‘nurse practitioner role’, they were more restricted in their role than ANPs; this would correspond to mental health nurses extending their role in memory services.

However, there is still no clear understanding of the perceived credibility and efficacy of the ANP role. Early analysis of memory service referrals over an 18-month period in a memory clinic in the north west of England found a high level of accuracy in diagnostic capability of mental health nurses, but this study looked only at nurses' informal diagnoses, with formal diagnoses still undertaken by a psychiatrist (Page et al, 2008).

Bentley et al (2016) reviewed the literature of interaction in older persons' and primary care settings, and found nurse practitioners facilitate engagement with service users and carers through the provision of empathetic approaches and affirmation. This was confirmed by interviewing service users and carers following consultation in a clinic, termed a nurse-led memory clinic (NLMC), in a primary care setting. The same researchers also showed that nurses in advanced practice roles in NLMCs increase the likelihood of dementia being diagnosed at an early stage (Minstrel et al, 2015), as well as give people diagnosed in the early stages more time to plan for the future (Stirling et al, 2016).

An overall theme is that nurses in advanced roles are well received, particularly regarding engagement with and time given to people diagnosed with dementia and their families. No study was found that addressed whether NLMCs met standards that are set as the level for ANPs, for example the four pillars set out in the RCN's (2018) standards for advanced level nursing practice in the UK.

Study context

Mirroring the national (Clibbens et al, 2019) and international context (Page et al, 2008; Sheer and Wong, 2008; Morilla-Herrera, 2016), the Kirklees memory assessment team has had many challenges when trying to meet demand, and waiting times for initial assessment and diagnostic appointments had at times exceeded 24 weeks. A new ANP role was established in January 2016 to support improved access to assessment of cognitive function, review of physical investigations, diagnosis and decisions about treatment (Clibbens et al, 2019).

The advanced level nurse practitioner benchmarks (DH, 2010) were the recognised standards for advanced practice and were key to the initial development of the ANP role in general. Guidelines published by the ICN (2020) also shaped the early understanding of the definitions and characteristics of ANPs. These were reiterated in the RCN's (2018) advanced practice pillars.

In the UK, memory services are integral to people receiving assessment and timely diagnosis of dementia (Memory Services National Accreditation Programme (MSNAP), 2018; NICE, 2018). The benefits of a timely diagnosis include the person and their family and carers knowing what to expect so that they can consider their future needs and make advanced care plans (NICE, 2019).

The memory assessment team has been a memory services nationally accredited team since 2016 (MSNAP, 2018). It is a commissioned service that covers a geographical area and has an agreed memory pathway. This team is an evolving service, with more recent developments including the introduction of cognitive stimulation groups, independent nurse prescribing and ANP roles. The ANP role builds on and complements the clinical skill mix within the memory assessment team. Advancing the role of the mental health nurse in dementia requires ensuring the right skills, knowledge and attitudes are in place (Page and Hope, 2013) and, as part of this new role, it was recognised there was a need to have appropriate supervision and governance (Clibbens et al, 2019).

Clinical/direct care practice

Nurses working at an advanced level use complex reasoning, critical thinking, reflection and analysis to inform their assessments, clinical judgments and decisions (RCN, 2018). They are able to apply knowledge and skills to a broad range of clinically and professionally challenging and complex situations.

Much has been written about ANPs in primary and general healthcare (Lowe, 2012; Morilla-Herrera, 2016), but information regarding the development of ANP roles in memory clinics is limited. The first part of the evaluation questionnaire was developed to reflect how service users and families in these clinics regarded the ANP's ability in clinical and direct care. It included questions on service users' and families' perceptions of ANP knowledge, satisfaction levels and care received.

Leadership and collaborative practice

Advanced nurses are recognised as being able to significantly improve service user and family satisfaction with medical services (Donald et al, 2013). There is a great deal of evidence to suggest that ANPs within primary care settings improve service user engagement and adherence to treatment plans (Bentley et al, 2016). The questions were designed to elicit information about how service users and families felt that the ANP performed in relation to being listened to and in care management.

Improving quality and developing practice

Service users and families were asked to rate their opinion of the quality of the service they had received. There has been much debate regarding service improvement for people with memory difficulties, often with little robust evidence to support change (Griffiths et al, 2014). The authors wanted to understand clearly what service users and families thought about the service they received from the ANP and if they would recommend it.

Developing self and others

Advanced nurses can enable service users to learn by designing and coordinating the implementation of plans appropriate to their preferred approach to learning, motivation and developmental stage (RCN, 2018). The authors aimed to seek feedback from service users and carers on how the ANP improved access to information to manage their own health.

Open-ended comments

A space for open-ended comments was added to the survey so service users and their carers could give qualitative information about their experiences.

The survey questions were structured using the RCN's (2018) four pillars to gain service user and carer feedback on how they were treated by the ANP, decision-making ability, credibility and overall satisfaction with the service they received. The survey also encouraged service users and families to give their opinion of improvements that could be made, and if they felt they were active participants in their care.

The survey was shared with the memory services team and governance department and feedback from this review process confirmed a high level of face validity for the questionnaire. The satisfaction survey was developed so service users and families could complete it at home.

The most common method of data collection involves the use of pre-coded, self-completion questionnaires (Batchelor et al, 1994). One of the advantages of self-administered questionnaires is the absence of interviewer effect (Haidar, 2008). A potential challenge with this type of survey is that some service users could struggle when completing it or with recalling information about their appointment. The ANP took into account that, if the service user needed this, they had a family member who would be able to support and include them in the evaluation of the care they received (Kim et al, 2013).

The questionnaire had 16 items, including 15 Likert-style items directly addressing the four pillars (Figure 1) and an additional open-ended question requesting a general opinion of the service. The Likert items comprised 5 points corresponding to strength of agreement: strongly disagree, disagree, neither agree nor disagree/not applicable/not yet sent, agree, strongly disagree. The option of ‘not yet sent’ related to participants' assessment of medical care plans; these had not been mailed out to everyone at the time the questionnaire was administered.

A purposeful sample recruitment strategy was undertaken, with the questionnaire sent out to 115 service users who attended the memory clinic and their accompanying families over an 8-month period, with the aim of negating selection bias.

Scoring and analysis

The Likert items were scored from 1 (strongly disagree) to 5 (strongly agree) and used to create mean item scores for all items. Mean domain scores were also derived, which corresponded to the means of all items in each domain. Non-applicable responses were considered to be equivalent to a neutral response.

Relationships between and within domains were also analysed, with analysis of individual items focusing on three key items: ‘I was happy with the nurse practitioners' decisions/actions regarding my care’ ‘I felt the nurse practitioner had good ability to manage my care’ and ‘I would recommend Kirklees Memory Services to my family and friends’.

The open-ended questions were subject to deductive qualitative content analysis of the data. According to Bengtsson (2016), two approaches can be used in content analysis: examine the answers to present questions deductively, or allow themes to be developed inductively from the data. Deductive content analysis was used because the analysis was structured on the basis of existing knowledge that could be abstracted from the statistical data.

Statistical analysis

Results were uniformly very positive, with service users expressing significant satisfaction with the ANP, in particular in the areas of direct clinical practice and quality of care received. A few surveys were returned with suggestions for improvements. ‘Strongly agree’ was the most common response to all the Likert-style items, and no items received a response of ‘strongly disagree’ or ‘disagree’. Mean item scores of all items were in excess of 4.79 (out of a maximum of 5.00) except for the item relating to whether the patient had received a copy of their medical care plan, which had a mean item score of 4.32. The likely reason for the lower score in this item is that some respondents returned the evaluation before they had received their report.

Mean item scores for clinical care direct practice and all other domains are summarised graphically in Figure 2 and Figure 3 respectively.

The mean domain scores were almost identical in all four domains, with little within-item variation. Analysis of individual items revealed extensive correlation between the items, with many participants responding ‘strongly agree’ to all items, and a small number of participants responding ‘agree’ to all items. This latter group contributed the bulk of all responses of ‘agree’. Scores reported on the three key items were very slightly higher but broadly were closely aligned to scores reported for other items.

Analysis of open-ended comments

Overall, as with the statistical results, patients expressed significant satisfaction with the ANP, in particular in the areas of direct clinical practice and quality of care received. A few surveys were returned with suggestions for improvements. The open-ended comments were very positive and many respondents were impressed by the ANP's sensitivity, professionalism, empathetic nature and knowledge. For example, one said the ANP was ‘a very caring, empathetic lady who treated my family with up most respect in what was a difficult time for us. She was extremely knowledgeable and answered any questions we had sensitively and calmly. Many thanks.’

Only a small percentage (6%) of verbal responses were less positive. Issues included wanting an extended appointment to discuss future care needs, not understanding medical jargon and the medical report being signed off before they could comment.

Out of the 85 returned evaluations, 44 (52%) gave written feedback. Of these, 40 were positive (94%) about the ANP service they had received, with complimentary comments including a comprehensive validation from a carer who expressed quality of performance of the ANP.

The key words seemed to suggest that people were very satisfied with the overall service. Many respondents used words such as ‘excellent’ or ‘good’ (n=22), ‘thank you’ (n=13) and ‘reassuring’, ‘wonderful’ or ‘helpful’ (n=9). Barker (2017) described important aspects of recovery from mental health problems in terms of support, comfort, presence and ‘other human stuff’ rather than doctors, psychotherapy or drugs. One respondent in the present study commented ‘very informative and dealt with my father on a very personable level’, which suggests that patients and families appreciate medical expertise but it is important that health professionals have time for the ‘fluffy stuff’ such as caring and giving time (Baldwin, 2013).

In terms of dementia, how practitioners communicate is critical in the process of diagnosis, whether this is verbally or in writing. People with dementia can be disempowered because others continually speak, move and act more quickly than they do. In changing how they approach that person, health professionals can support feelings of self-worth and personal identity (Allan and Killick, 2014). Kitwood's work regarding dementia often challenged the medical discourse and promoted a person-centred approach to people (Baldwin and Capstick, 2007). Many comments received, such as ‘was thorough, thoughtful and caring throughout and explained everything in the required amount of detail’, clearly indicate that areas of care, trust, openness and dignity are often very important aspects of diagnosis and care provision (Shattell et al, 2007).

Clinical direct care practice

All issues covered by quantitative questions were rated highly (82% overall domain), and this was mirrored in the open-ended comments, which showed that at least one ANP was working at a standard at least equal to what is expected of an autonomous, competent and expert practitioner.

Feedback from service users and carers in this survey showed they rated the performance of the ANP positively and this was reflected in the survey and the free text. This suggests that nurses, when extending their role, are starting to show they are as competent as the practitioners they have replaced, although more outcome-based research such as comparison with psychiatrists undertaking the same role or evidence of the health-related outcomes following ANP consultations is necessary. These findings do, however, provide evidence to underpin further legitimacy for the ANP role in memory services.

The clinical practice of the ANP, including making formal diagnoses, was well received in this study. Previously, advanced practice activities such as diagnosis by an ANP had only been compared informally with psychiatrists' decision making (Page et al, 2008).

Leadership and collaborative practice

With the exception of when they did not receive a copy of the medical care plan, results showed that the patients and carers felt listened to, involved and satisfied with the way their care was managed both statistically (82% overall domain) and from content analysis.

Barratt and Thomas (2019) interpreted the communication styles of nurse practitioners and noted that this was a two-way process beyond history taking. Therefore, service users and carers can have their concerns directly addressed if they are encouraged to participate actively, as evidenced in this study.

Bentley et al (2016) stated that affirming actions and giving time allow for stronger engagement and likely health outcome benefits, which the ANP role within a memory service can facilitate. This is an area for further research to evaluate how ANPs can include service users and carers in decision making that affect their immediate future and beyond.

Improving quality, developing service

The findings repeated those of the first two benchmarks with outstanding statistical scores (86% overall domain) and excellent comments. These results very much reflect the trust shown in the direct care received from the ANP. The development of the service with the ANP in advanced roles was well received and, in turn, would be recommended by service users because they received high-quality treatment.

Bauer (2010) showed some evidence that ANPs can provide care that is at least the equal of that given by other practitioners and the findings of this study appear to agree with this.

Cost-effectiveness is one outcome that was not included in this evaluation and remains a limitation of the study. A large-scale evaluation on the cost effectiveness and outcomes of ANP interventions needs to take place, perhaps along the lines of the recent i5 (2015) study into the advanced clinical practice intervention of non-medical prescribing.

Developing self and others

The participants also reported positively in this domain (84.7% overall) with statistical findings and open-ended comments showing that service users and carers in the sample felt they were given information and support to enable them to more effectively meet the care needs of the person diagnosed with dementia.

This is an important area where the ANP facilitated understanding as well as the service users and carers' ability to adapt and live with multiple challenges they face when the reality of a diagnosis of dementia is made.

Stirling et al (2016) found that service users and carers very much initially focused on how to maintain the status quo of life before diagnosis, but needed continuity and clarity so they could adapt to necessary changes as physical and psychological deterioration happen. Fortinsky (2014) reported that such clarity and consistency of support can improve health and wellbeing outcomes for service users and carers.

How to enable the service user and carer adapt to the future challenges after a diagnosis of dementia and how this impacts on their wellbeing is a topic that needs further consideration.