For many people with a terminal illness, home is their preferred place of care (Gomes et al, 2013). To enable this, informal carers, particularly family members and friends, need to provide physical, emotional and practical support to the terminally ill person (Epiphaniou et al, 2012). Such support can include practical assistance with activities of daily living, including personal care, household tasks, financial assistance and social and emotional support (Rowland et al, 2017). Caring is associated with increased risk of physical and mental morbidity (Williams and McCorkle, 2011). In a palliative care context, the demands of the caring role can become all-encompassing. Support for carers can be limited, as carers do not recognise themselves as carers and often feel their needs are not legitimate in comparison to those of the person being cared for (Carduff et al, 2014). To ensure that the wellbeing of carers is maintained and to enable them to care for the terminally ill person, it is important that their needs are assessed (Ewing et al, 2018).
Background
The Carer Support Needs Assessment Tool (CSNAT) assesses the support needs of informal carers of people with a terminal illness (Ewing and Grande, 2013). This is a 14-item tool that assesses (a) support needs for the carer themselves and (b) support needs to enable the carer to provide care to the terminally ill person. The CSNAT has proven validity and reliability for supporting family caregivers in a palliative care setting (Ewing et al, 2013; Alvariza et al, 2018).
The CSNAT approach consists of five steps (CSNAT, 2013; 2016). Each step is facilitated by the practitioner, but is carerled (CSNAT, 2016). The five steps are documented in Table 1.
The CSNAT can enable carer support in the transition to end-of-life care at home (Ewing et al, 2013). It also enables practitioners to focus on carer needs upon discharge home for palliative care, and helps to prevent readmission towards the end of life (Ewing et al, 2018).
Implementation of such tools in clinical practice can be challenging (Grande et al, 2009; Ahmed et al, 2015), and barriers include practitioner beliefs and attitudes, lack of knowledge or training regarding any new tool and issues it may raise, and lack of time or resources (McIlfatrick and Hasson, 2013; Antunes et al, 2014; Ahmed et al, 2015). The provision of education and evidence-based knowledge for practitioners is an important facilitator in the implementation of new tools in palliative care settings (Thomas et al, 2010). Regular use of the intervention and opportunities for staff to interact with other practitioners to support learning can promote successful implementation of the intervention (Diffin et al, 2018a; 2018b). There is often a fear that a new tool might replace or negatively impact the relationship between carer and practitioner, so it is important that any tool be seen as complementary to enhance the therapeutic relationship (Antunes et al, 2014).
| Step | Explanation |
|---|---|
| 1. Introduction of the CSNAT | The practitioner administers the CSNAT by introducing and explaining it at the earliest opportunity in the caregiving journey |
| 2. Carers' consideration of needs | The practitioner allows time for the carer to consider their needs using the CSNAT |
| 3. Assessment conversation | An assessment conversation takes place, in which the carer highlights their support need priorities |
| 4. Shared action plan | The assessment conversation leads to development and documentation of an action plan, which summarises actions required from the carer and practitioner |
| 5. Shared review | Regular review of the carers' support needs |
CSNT: Carer Support Needs Assessment Tool
Diffin et al (2018a) explored the influence of practitioner attitudes on the implementation of the CSNAT. They found that services with a higher proportion of internal CSNAT facilitators to staff members were more likely to be high adopters of the CSNAT, thus being more successful at implementing it. Diffin et al (2018b) found that the success of the implementation of the CSNAT was also determined by how the internal facilitator role was enacted within the service. The establishment of a team of internal facilitators who are given the authority to manage the implementation process positively influenced the success of CSNAT implementation.
Austin et al (2017) identified factors influencing CSNAT use in a community specialist palliative care context based on interviews conducted between February 2011 and January 2012. Barriers included practitioners' preference for existing carer support practices and concern about those practices that would change with CSNAT introduction. Facilitators of CSNAT implementation included practitioners' positive attitudes towards the CSNAT and the perception that the CSNAT may enhance existing practice. However, the CSNAT was a new tool at the time of data collection and was just being developed. Since then, there has been a plethora of publications on the need for carer support, for example, Ewing et al (2018), Jack et al (2014) and the Carers (Scotland) Act 2016 (UK Government, 2016), along with a growing recognition among clinicians, service managers, educators and policy-makers that carers play an essential role in providing care at home and need to be enabled and supported in their role. Consequently, more recent studies on the implementation of the CSNAT as a tool to identify the support needs of carers were warranted.
Methods
Aims
This study explores the use and acceptability of the CSNAT and the barriers and facilitators to implementing the CSNAT approach in a community palliative care setting. The research questions are as follows:
Setting
Data collection was undertaken with two community specialist palliative care nursing teams in Lothian, Scotland. Both teams were attached to a local hospice. The CSNAT approach had recently been introduced within the community service. The present study was designed to explore the perceptions that the community nurse specialists (CNSs) had about the CSNAT approach and to identify any recommendations to improve CSNAT implementation. Data were collected by a postgraduate student researcher, ZH, as part of a Masters of Public Health dissertation. ZH is a registered nurse by training and has no professional connection to the Marie Curie team.
CSNAT training prior to the study
The Hospice Lead Nurse and two community CNSs (one per site) attended an official CSNAT training day facilitated by the CSNAT developers, in June 2015. They each subsequently hosted CSNAT-training meetings at their respective sites, using CSNAT training materials to introduce and explain the tool and its approach to all members of both teams. Follow-up conversations occurred at team meetings thereafter, and the CSNAT was an agenda item at weekly team meetings. The CSNAT was launched in October 2015 and has been used routinely in the hospice's practice since then. Any CNSs who have joined the team since the CSNAT was introduced have received training from their induction supervisor, typically a member of the community nursing team who has received CSNAT training.
Design
This study used a qualitative study design, using semi-structured interviews.
Sample
All 14 CNS team members were invited to take part; two declined due to holiday and work commitments. A purposive sample consisting of 12 community palliative care CNSs was recruited. The recruitment process involved the researcher visiting both teams to explain the study and invite them to participate. Participants volunteered to take part during the researcher's site visit. A participant information sheet and consent form were provided, and informed consent was sought prior to the interview. A summary of the characteristics of sample participants is shown in Table 2. All participants were female, with an average age of 43 years.
Data collection
Interviews were conducted in June 2017 and lasted between 25 and 55 minutes. They were carried out in pre-booked, private meeting rooms located at the two sites during the participants' working hours, for their convenience and comfort. All interviews were audio-recorded and transcribed. All participants signed informed consent forms prior to participation.
For the interviews, a topic guide was designed to explore four main areas: use, accessibility, barriers and facilitators of the CSNAT. The main body of each interview focused on the barriers and facilitators of the CSNAT approach. An open, non-presuming questioning style was adopted, with a focus on understanding participants' perceptions and situational experiences of using the CSNAT.
Ethics approval was obtained from the Usher Ethics Committee at the University of Edinburgh, and the study was approved by the Marie Curie Hospice Research Governance Committee.
Data analysis
A framework analysis approach was adopted (Ward et al, 2013). The steps in framework analysis and their application in this study are detailed in Table 3.
Rigour
Rigour was built into this study using the consolidated criteria for reporting qualitative research 32-item checklist for qualitative studies (Tong et al, 2007). The framework analysis, too, involves several processes that enhance rigour (Ward et al, 2013). In step 5 of the analysis, the draft theoretical framework was adjusted following the researchers' reflections on categorisation of some codes, in order to avoid repetition of data across themes (Ward et al, 2013). In step 7, context checking was undertaken to ensure that participants' meaning was conveyed through the final emerging themes (Smith and Firth, 2011). Cross-validation was used to validate the emerging themes, through participant checking, which involved a discussion of the findings between the CNS participants and the Lead Nurse (Tong et al, 2007).
Findings
Use of the CSNAT
Most participants introduced the CSNAT to new patients at the end of the first visit (92%). Generally, this involved giving the tool to the carer and explaining it.
‘At the end of every first visit, we offer carer support, and we always give out the CSNAT. I always present the CSNAT as a tool that has been formulated because we are aware that carers require support’. (P1)
None of the participants reported using the CSNAT to develop carer action plans, and none reported that they used it to regularly review carer needs over time. Most participants (75%) gave the CSNAT as an ‘add on’ to supplement existing carer support practice, allowing carers time to reflect on CSNAT content alone, to identify issues that had not already been covered. Half of the participants revisited the CSNAT on subsequent visits, while the other half never revisited it, leaving it to the carer to raise any issues they had.
‘I have been using it as an add-on, to try and identify the gaps I have not met’. (P2)
‘I introduce it by saying “this is a tool to help me make sure that I am not assuming your needs” and “we have talked about a lot of things, but there may be other things that come from this”.’ (P6)
| Site | Number of CNS participants from team | Gender | Average number of years in community palliative care CNS role | Range of number of years in community palliative care CNS role | Percentage of staff with 3 or more years of palliative care experience |
|---|---|---|---|---|---|
| Site | Number of CNS participants from team | Gender | Average number of years in community palliative care CNS role | Range of number of years in community palliative care CNS role | Percentage of staff with 3 or more years of palliative care experience |
| Team 1 | 5 | Female | 3.5 | 3.0–4.0 | 100% |
| Team 2 | 7 | Female | 5.3 | 1.5–9.0 | 57% |
*More experienced = Three or more years in the community palliative care CNS role
** Less experienced = Less than 3 years in the community palliative care CNS role
CNS: Clinical Nurse Specialist
All participants strongly expressed the perception that carer support is a hugely important aspect of their job, which is central to patient and carer wellbeing and underlies patients' ability to receive palliative care at home.
‘Carer support is important as any other aspect of the job we do, their needs are important’. (P5)
‘If the carer isn't being looked after it can have a major impact on the patient and on their wishes to remain at home’. (P8)
Acceptability of the CSNAT
Participants were positive about the CSNAT as a carer support tool. Many (67%) could appreciate how it could potentially improve carer support.
‘I’d like to think it does enable carer support, it very much puts that conversation on the table’. (P4)
‘I think it is a good tool...it is not too invasive, it is quite generalist, and it is covering many aspects of the carers role. I do think it is appropriate and fairly easy and self-explanatory to follow’. (P12)
Some participants expressed lack of confidence in using the CSNAT and a desire to improve their knowledge and understanding of it, in order to improve their use of it (42%).
‘I’d be interested to know about how I could improve using it…have I just got the wrong end of the stick with it and I am the barrier’? (P2)
‘It is a privilege that we are part of this vulnerable time with many families…if there is something that can help us deliver our care better, obviously we will want to try and use it better to ensure that happens'. (P10)
Barriers to using the CSNAT
Participants perceived carers to have self-deprecating attitudes, including not valuing their own worth or identity as a carer, and, consequently, not wanting to discuss their needs. Many participants (83%) were keen to help the carer acknowledge their role as a carer and the additional responsibilities that come with that.
‘I think it is just carers needing to acknowledge that they are a carer, and they are important, because they don't see themselves as important’ (P7)
A few participants expressed the view that they are ‘already providing’ carer support without the CSNAT, and that the CSNAT is ‘extra, burdensome documentation’ (42%).
‘We don't need any more documentation, we have enough’. (P1)
| Step | Action involved | Details of action | Relation to this study |
|---|---|---|---|
| 1 | Verbatim transcription | Undertaken by the researcher | An ongoing process during data collection |
| 2 | Familiarisation | The researcher must become familiar with the transcripts and be immersed in the data | Completed by researcher by conducting and transcribing the interviews, and subsequent reading through the transcripts for initial coding |
| 3 | Coding Reading the transcripts line-byline, applying codes to summarise important parts of each passage | The researcher coded the transcripts by hand. Codes referred to behaviours, values, emotions, and more abstract or impressionistic elements of the data | |
| 4 | Drafting a theoretical framework | Grouping important and recurring codes into categories | A draft theoretical framework table was created using Microsoft Word, in which recurring and important codes and categories were clearly defined and labelled |
| 5 | Indexing Application of the draft theoretical framework to the transcript, using qualitative data analysis software | NVivo 11 was used to apply the framework to each transcript. Appropriate codes were linked to sections of transcript that they were reflected in. The draft theoretical framework was adjusted for clarity | |
| 6 | Charting a framework matrix | Insertion of recurrent codes and categories into a framework matrix | Microsoft Excel was used to create a matrix for each theme. The codes developed in NVivo 11 were entered into a matrix, with participant quotes reduced to a succinct summary for each code of each theme |
| 7 | Context checking Checking themes against original transcripts and field notes to ensure context is appropriate | The researcher compared the findings in the framework matrix to original data, the audit trail and the field notes to ensure the context was congruent |
At the time of the study, only a poor-quality photocopied version of the CSNAT was available to the CNS team. All participants expressed concern with the unprofessional appearance, lack of colour and poor print quality. The CNSs found this embarrassing when administering the tool and worried that the poor appearance may seem representative of their services' approach to carer support.
‘It is awful! It is photocopied and the copies are on a slant, they are fuzzy, have no colour...it looks like a scrap bit of paper’. (P5)
Facilitators for using the CSNAT
CNSs felt encouraged to use the CSNAT when given workplace support through a local CSNAT Champion, provision of training and updates and when they heard success stories and positive feedback. Equally, participants felt that ample time and space were available to use the tool.
‘Having someone in the team who owns it and makes it their bag makes it easier to use, because if it just came from senior management saying ‘this is a new tool and this is what we are doing, get on with it’ that would be bland. Whereas, here you have got the teaching and hearing the feedback from other areas about how successful it is and actually how unsuccessful it is where we are, so that is good to hear’. (P9)
‘Hearing about good experiences and how it has worked really well for other areas previously helped you to kind of have belief in the tool’. (P5)
Many participants created a space for using the CSNAT with carers, through relationship building and by revisiting the tool (84%).
‘Immediately showing carers that they are a priority too is good support for them...if they have questions we suggest setting aside a separate appointment for them, sometimes away from the house if it is easier for them’. (P12)
‘I offer to meet carers in cafes to have a chat away from the home, and the information you get there is immense compared to what you would get in the house’. (P5)
Discussion
Use of the CSNAT
Overall, the majority of participants found the CSNAT useful, and nearly all of them used it to explore carer support needs. Most participants reported introducing the CSNAT towards the end of the first visit with the carer. This is congruent with recommended CSNAT practices, which advise that the CSNAT be delivered as early as possible in the caregiving journey, in order to capture carers' initial support needs (CSNAT, 2016).
Acceptability of the CSNAT
CNSs found the CSNAT acceptable and perceived carers to review and consider the tool, too. However, they felt that the tool would be better at identifying carer support needs if it had a greater uptake by carers. Given that carers are often reticent to self-identify as such (Carduff et al, 2014), gentle reminders by CNSs at follow-up visits may encourage CSNAT completion or the commencement of a conversation focused on their needs. Some CNSs expressed a lack of confidence in using the CSNAT and said they would appreciate more training on the recommended five-step CSNAT approach.
Valuing carer role and validation of carer support
All CNSs expressed a strong, consistent recognition of carer support as important, central and fundamental to their role. Palliative care CNSs have an in-depth understanding of the additional responsibilities that come with being a carer and believe that their nursing role involves recognising carers and helping them address any needs that arise. In line with previous research (Carduff et al, 2014), this study found that CNSs feel carers do not self-identify as carers, ask for support or value their own needs. Carduff et al (2014) found that rather than self-identifying as carers, carers see themselves in the context of their relationship with the cared-for person, that is, as a spouse, sibling, child or friend. This lack of validation of the carer role, along with the all-encompassing demands, often means that carers do not have time to address their own needs. The lack of self-recognition is further compounded by a societal and cultural demand for relatives to adopt the role of family caregiver (Sharma et al, 2016; Rezende et al, 2017). These pressures on carers increase their risk of morbidity and mortality (Epiphaniou et al, 2012). There is a need to encourage carers to self-identify and recognise their own needs as valid and important and to encourage society to recognise the pressures of caregiving. This requires a change in healthcare professionals' practices, to identify formal carer support opportunities and mechanisms (Epiphaniou et al, 2012). The CSNAT helps convey to carers that their needs are important, legitimate and distinct from those of patients (CSNAT, 2016; Ewing et al, 2016a). This, combined with the finding from this study that CNSs are passionate and keen to support carers, could help address this need. Further training to highlight the usefulness of the CSNAT in helping carers recognise their own needs might be beneficial.
The CSNAT approach
The recommended five-step CSNAT approach is person-centred and carer-led. However, many participants described methods of using the CSNAT that are inconsistent with the recommended approach, such as using the CSNAT as an add-on to existing nurse-led practice and not revisiting the CSNAT. In their study of the use of the CSNAT in palliative home care, Austin et al (2017) also found that the tool was used as an add on to existing practice. This may have been because practitioners did not fully appreciate that CSNAT implementation requires a shift in their carer support approach from practitioner-led to practitioner-facilitated but carer-led assessment. Similarly, the findings of the present study suggested that CNSs added the CSNAT to their existing practice, rather than changing their carer support approach. Many used it as a one-off assessment tool and, generally, the planning and review stages, which are part of the broader CSNAT approach, were not carried out.
Further training would improve CNSs' understanding of the principles of the CSNAT approach. The findings of this study suggest that such training would be well received by staff, as several expressed a desire for more knowledge on the CSNAT approach.
Barriers to using the CSNAT
Participants expressed that they are ‘already providing’ carer support, and that the tool adds ‘extra documentation’, ‘duplicating’ their existing practice. However, the recommended CSNAT approach suggests that the tool should form the basis of carer needs assessment, rather than being an add-on (CSNAT, 2016). McIlfatrick and Hasson (2013) found that aspects of a palliative assessment tool can duplicate what is already being done as part of the clinicians' existing role, and that the approach taken to using a tool by the practitioner can hamper the efficacy of the tool if the tool is not used as proposed. Instances described by CNSs in the present study suggest that the CSNAT is used more as a one-off assessment rather than part of a broader process.
All CNSs interviewed in this study mentioned the physically unattractive appearance of the CSNAT, expressing concern about it being representative of the services' approach to carer support. The CSNAT's appearance should be reviewed to reflect the necessary improvements desired by participants. This finding has implications for the implementation of service documentation beyond the palliative care setting. It is important to ensure that documents are professional and well presented in order to engage target audiences (Pearson, 2003).
Facilitators for using the CSNAT
Positive workplace support can strengthen CSNAT use. Hearing positive messages about the CSNAT and workplace provision of time and space to use the tool motivated the participants to implement the CSNAT. Having a CSNAT Champion within the team promotes and encourages team members to use the tool. Diffin et al (2018b) found that successful CSNAT implementation was associated with having internal facilitators within each team, particularly when the internal facilitator is given sufficient ‘leverage’ to implement the CSNAT, such as the authority to change practice, being on a supportive team of facilitators and having effective positioning within the service. These findings suggest that the workplace positivity described by participants encouraged engagement with the CSNAT. This has implications for the introduction of tools in practice, as having a local champion may facilitate acceptance of new tools in healthcare settings.
Creating space for carer support and CSNAT use was described as a facilitator by many participants. They described creating opportunities for carer support by proactively arranging individual meetings with carers, where they encouraged them to use the CSNAT. Nelson et al (2017) stated that meeting with carers is important to allow time for them to discuss their needs. This enables carer support by providing the opportunity for the CSNAT assessment to occur. These facilitators were also identified by Ewing et al (2016a), who identified that the CSNAT's mechanism of action is the creation of space for carer support.
Relevance of the study to district nursing
Supporting carers of people at the end of life is relevant to healthcare beyond the hospice setting, particularly in primary care, given the growing number of people projected to die in community settings over the next two decades (Bone et al, 2018). District nursing teams are well placed to support family carers at home and often carry out carer support in an informal manner during home visits (Griffiths et al, 2013). The CSNAT approach could be adopted by district nurses as a formal method of addressing carer needs at home, and the findings of this study could guide the implementation of the CSNAT approach in a district nursing team. Further, the CSNAT could be evaluated for use by the district nursing workforce not just for carers of individuals with a terminal diagnosis but also to identify support needs for carers of older individuals with increasing frailty, dementia and complex needs. The CSNAT is currently being promoted as part of the new Daffodil Standards, which are care standards for primary care team delivery of end-of-life care, which includes online training (Royal College of General Physicians, 2019).
Further research
Further research should be conducted to examine the carers' views of engaging with the CSNAT approach and the extent to which implementation of the CSNAT approach improves support for the carer and, indirectly, for the terminally ill person.
Limitations
The data in this study were generated by interviewing CNSs who are highly knowledgeable and experienced in the palliative care setting. Twelve participants (86%) of the potential 14 were recruited, giving a good representation of the majority of views from the two sites. However, given the hospice-based context of this study, the findings may not be directly transferable across all settings.
Conclusion
CNSs view carer support as an essential element of their role. They encourage carers to acknowledge their own needs as valid and important. The CSNAT was deemed acceptable by the CNSs interviewed in this study, who found it useful for legitimising carer support. However, there is potential for improvement in way the tool is administered, as CNSs need to move away from using the CSNAT as an ‘add-on’ to adopting the broader CSNAT approach. Further training and education using the five-step approach is recommended, as is the identification of a CSNAT Champion within the nursing team. These recommendations are relevant and applicable to the introduction of the CSNAT to the district nursing workforce. BJCN