Community nurses’ experiences of the Swedish Dignity Care Intervention for older persons with palliative care needs – A qualitative feasibility study in municipal home health care

Objectives: The Swedish Dignity Care Intervention (DCI-SWE) is an intervention for people with palliative care needs to enhance their dignity. The original DCI was de - veloped in Scotland, where it was


| INTRODUC TI ON
The World Health Organization has declared palliative care as a human right (World Health Organization, 2018).As the world's population is ageing, the need for palliative care is increasing (Connor et al., 2020).
According to the International Association for Hospice and Palliative Care [IAHPC] (2019), governments must ensure access to palliative care for vulnerable individuals, including older people.The highest prevalence of palliative care needs exists in home care and nursing homes (Morin et al., 2016).Palliative care needs include specialist palliative care required because of illness, considerable physical symptoms, or complex psychosocial needs (Beynon et al., 2011;World Health Organization 2004).Older people often have less access to specialised palliative care, which jeopardises their end-of-life quality (Lindskog et al., 2015).Older people can, moreover, suffer from frailty, defined as the 'increased risk of chronic disease, loss of independence, mortality and increased healthcare use' (Xu & Kirkland, 2016, p. 140).Since transitions to palliative care can be difficult, it is important that community nurses (CNs) caring for older people have the right knowledge and support to realise a palliative approach in care (Moir et al., 2015) characterised by improvement in quality of life, and prevention and relief of physical, psychosocial and spiritual suffering (World Health Organization, 2020).
Dignity is an essential value within palliative care (Chochinov, 2007;World Health Organization, 2018), and if CNs adopt a dignity care approach, they may respond more effectively to patients' needs (Bylund-Grenklo et al., 2019).People receiving health care have dignity when able to live in accordance with their standards and values (Barclay, 2016).While 6% of older people with frailty have reported loss of dignity (Chochinov et al., 2016), it has been reported that 50% of older people in care homes feel that their dignity is undermined (Gallagher et al., 2017).Losing dignity can make a person feel like a burden to others and consequently the person can lose the desire to live (Chochinov et al., 2007).Older people's dignity is often threatened by illnesses, symptom/existential distress, dependence, absence of peace of mind and lack of support (Gallagher et al., 2008;Gwyther et al., 2009;Rudilla et al., 2016).Even though healthcare professionals know how to nurture older people's dignity, their knowledge is not always put into practice (Hall et al., 2014).By affirming a person's value and focusing on attitude, behaviour, compassion and dialogue, healthcare professionals can help maintain the person's dignity (Chochinov, 2007).However, conserving older people's dignity is complex; and tailored, evidence-based dignity interventions are needed (Baker et al., 2015; International Association for Hospice and Palliative Care [IAHPC], 2019).Only a few dignity interventions at the end of life are available (Guo & Jacelon, 2014;Söderman et al., 2020), and therefore, there is a need for the Dignity Care Intervention (DCI).

| The Dignity Care Intervention
The DCI, which was developed in Scotland, aims to conserve dignity for people with palliative care needs (Brown et al., 2011;Johnston et al., 2015;Östlund et al., 2012).It has been adapted for Sweden as the DCI-SWE (Blomberg et al., 2019;Östlund et al., 2019;Werkander Harstäde et al., 2018).The theoretical foundation for both versions of the intervention is Chochinov's dignity model (2002) (Figure 1).
The DCI-SWE can be used by CNs in a process (see Figure 2) that includes: (1) the Patient Dignity Inventory (PDI) (Chochinov et al., 2008) measuring 26 items of dignity-related distress; (2) reflective questions to deepen conversations with older people; and (3) evidence-based care actions related to dignity.

The original DCI has previously been evaluated in Scotland and
Ireland in rural and urban settings, and it was reported that CNs found the DCI useful.However, according to the report, the intervention requires

What does this research add to existing knowledge in gerontology?
• The study reports on a care pathway that is useful in enhancing dignity in older people with palliative care needs.
• The study is a qualitative inductive description of community nurses' experiences of the Swedish Dignity Care Intervention (DCI-SWE).
What are the implications of this new knowledge for nursing care for older people?
• It contributes to the provision of evidence-based palliative care.
• It supports health care professionals in providing dignity-conserving care.
• It describes the DCI-SWE as a relevant tool for giving community nurses structure while providing palliative care.

How could the findings be used to influence policy, practice, research or education?
The findings could be used - • for planning health care to provide dignity-conserving care.
• to illustrate barriers and facilitators to dignity-conserving care in municipal home health care.
• to underpin future research on dignity-conserving care.communication skills, and some CNs needed more support and training to initiate deeper conversations (Johnston et al., 2012;McIlfatrick et al., 2017).Yet, older people were positive about the support that the DCI enabled (Johnston et al., 2017).Hence, previous research indicates that the DCI can be helpful.As documented interventions are important in making health care evidence-based (Malterud et al., 2018), the DCI-SWE needs further evaluation to be implemented.Therefore, this feasibility study aims to describe experiences of the DCI-SWE from the perspectives of CNs working in municipal home health care in Sweden.

| Design
A feasibility study was undertaken as recommended by the Medical Research Council (MRC) (Craig et al., 2008) to support formulating plans for a larger study (Giangregorio & Thabane, 2015).A qualitative content analysis approach with descriptive and inductive design was used (Elo & Kyngäs, 2008;Patton, 2002).Focus group (Barbour, F I G U R E 1 The dignity model (Chochinov, 2002)  (Kelly, 2013) with CNs were conducted to describe their experiences of the DCI-SWE.

| Setting and sample
The context was urban and rural home health care in a medium-sized municipality in Sweden.Two home healthcare units were included, where CNs worked with older people (Table 1; inclusion and exclusion criteria for CNs, Table 2; criteria for using the DCI-SWE in older people).The CNs were recruited with help from first-line managers through a purposive sample where mixed genders and an age range were aimed for (Patton, 2002).The CNs (n = 18) were provided with information about the DCI-SWE face to face during unit meetings, and twelve CNs consented to take part in the study.One CN dropped out because of a change of workplace.The CNs asked older people with palliative care needs and frailty (according to CNs' judgements) for permission to use the DCI-SWE in their care.

| Ethics
The study was conducted in accordance with the Helsinki Declaration (World Medical Association, 2018).Ethical approval was obtained from the Regional Ethical Review Board of Uppsala, Sweden (Reg No. 2014/312).
The head of home health care at the municipality gave written permission for the study to go ahead.Oral and written consent was collected from the CNs.They were informed that they could withdraw their participation at any time, and that data would be handled with confidentiality.

| Procedure
Formal and informal meetings, giving information about the DCI-SWE and introducing the researchers were held before and during the study (with CNs n = 19; managers n = 3; and palliative coordinators n = 2).Researcher A.S. followed the CNs on three shifts to establish relationships and get familiar with the context and met some CNs to assess the relevance of the DCI-SWE care actions.
In addition, the CNs participated in a workshop about the DCI-SWE process (Figure 2) at which the researchers demonstrated the intervention in role play.The CNs were then given time to practice among themselves to become familiar with the DCI-SWE and instructed to use it with three older persons each during the 3-month study period.After the workshop, the CNs started the DCI-SWE process after consulting with the older person and making the clinical decision to include that person.This required at least two meetings with the older person.At first, the older person completed the PDI together with a relative or a healthcare professional to identify concerns.The PDI items were measured on a 1-5-point Likert scale.The older persons were told they could highlight questions in the PDI that they wanted to discuss to construct a more person-centred approach.Concerns rated ≥3 were explored by the CNs who posed reflective questions.The CNs could also formulate their own reflected questions.Identified concerns were dealt with by care actions suggested in the DCI-SWE.These actions were later followed up by using the PDI again, to establish whether the concerns had been resolved, or whether they remained or new ones had emerged.

| Data collection
Focus group interviews (n = 3) (Barbour, 2013) were selected to promote the CNs' discussions and held after the study.Group size varied from two to six participants.One individual interview (Kelly, 2013) was conducted with a CN who was unable to attend the focus group interviews.All interviews were performed at the units, in a comfortable and undisturbed setting.One researcher (A.S.) acted as moderator to stimulate discussions and to ensure that the research TA B L E 1 Inclusion and exclusion criteria for community nurses.

Inclusion Exclusion
• TA B L E 2 Criteria for using the Swedish Dignity Care Intervention (DCI-SWE) in older persons.

Inclusion Exclusion
• Receiving municipal home health care Reflective diaries (Allen, 2013) were also used to gather data from CNs.These included a few deeper descriptions, but mostly shorter comments about the DCI-SWE (0.5-1.5 pages on average).
Furthermore, researchers took field notes (Allen, 2013) on meetings with managers/CNs and while researcher A.S. followed CNs at the units.The notes included observations of what was happening in the clinical field, and information about the delivery of the DCI-SWE.

| Data analysis
All data were analysed using inductive content analysis (Elo & Kyngäs, 2008).In the preparation phase, data transcripts were read for familiarisation.Units of analysis (extracts from interviews; field notes; diaries) that corresponded to the study's aim were selected and organised (A.S.).The analysis focused on both manifest and latent content and was conducted in NVivo 12 (QSR International, Doncaster, Australia) (Edhlund & McDougall, 2016).
Open coding nodes were written down, describing the content of the units of analysis.They were then gathered on a coding sheet for an overview of data content and variances.Nodes were grouped based on similarities and differences in the data to generate subcategories (A.S., K.B., C.W.H.).Subcategories were named based on their content, further compared and, in line with the researchers' interpretations, grouped into two main categories.
Categories were further discussed for clarity to reach consensus in the research group (see Table 3 for the abstraction process), and quotations were identified to illustrate the findings, all to increase trustworthiness.

| RE SULTS
Eleven CNs participated in the study (for sociodemographic data, see Table 4).Of these, five had the possibility to use the DCI-SWE with altogether seven older persons (five women, two men, age ≥80).Two main categories and six subcategories described CNs' experiences of the DCI-SWE (Table 5).Although not all CNs used the DCI-SWE, all of them participated in the workshop and familiarised themselves with the intervention so that they were able to give feedback.

Main category
Focus group [...] there is a little more structure in that case and suggestions on what to ask.
A benefit of the DCI-SWE is that it gives more structure.
Gives structure while providing palliative care.
Practising the palliative approach while responding to palliative care needs.

Reflective diary
The patient thought […] the conversation was important.I found that the patient was surprisingly nuanced in his comments, [and] could highlight great and small things.
The DCI conversation is a way to talk about important things.Gives older people opportunities to be confirmed.Practising the palliative approach while responding to palliative care needs.

Field note
The nurse believes that it is easier to use the DCI-SWE if the patient has already received a palliative decision.
The DCI-SWE suits older persons enrolled in palliative care.
Proposals for establishing the DCI-SWE in the context of home health care.
Aspects influencing the use of the DCI-SWE.

| Practising the palliative approach while responding to palliative care needs
The DCI-SWE structured the palliative care provided and helped confirm older people.The intervention was a way for CNs to respond to the older people's existential and sensitive needs.The discussion about an older person's needs was beneficial, as was the possibility to plan the care according to that person's wishes.
The DCI-SWE was described as a supportive tool for nurses, useful for measuring different symptoms, and enabling CNs to focus on those concerns that the older person thought was most important.
Reflective questions gave CNs suggestions for how concerns could be resolved.One CN described how she formulated questions based on the DCI-SWE, during other conversations as well.
I thought it was interesting to see the questions in print like this, and it has helped me in another break-point conversation to … yes, to think about the questions, a little bit more expressively asked […].(Interview A) The CNs expressed the need for clear documentation and a follow-up to evaluate the outcomes of the DCI-SWE and to decide what more needed to be done.Some thought that follow-ups would be easier if the PDI had been used already at the time the older people were enrolled in home health care.The CNs differed in their views about how soon the effects of the DCI-SWE would be felt: some said 'at once' while others thought it could take weeks or even months.

| Gives older people opportunities to be confirmed
The CNs experiences were that the DCI-SWE helped older people to be seen as part of a greater whole; it also helped the older people to express themselves and to reflect on the questions.The CNs commented on the DCI conversations in their reflective diaries, for example: The patient thought […] the conversation was important.
I found that the patient was surprisingly nuanced in his comments, [and] could highlight great and small things.
(Reflective diary of CN 1 ) The CNs emphasised that older people's thoughts about dignity should be focused.The use of the DCI-SWE was a way to give older people hope, reduce their uncertainties, and give them insights into their situation.Although the CNs had encountered some older people

Main category Subcategory
Practising the palliative approach while responding to palliative care needs Gives structure while providing palliative care who did not want to participate in the DCI-SWE, others said they wanted to even if it felt challenging.The CNs also mentioned that relatives were positive to the DCI-SWE.The DCI-SWE was a help to communicate about difficult issues:

I think it [the DCI-SWE] was a bit helpful between the
spouses; it raised some issues that they had not dared to raise between each other.(Interview B)

| Responding to existential and sensitive needs
According to the CNs, dignified care could be about knowing when it would be appropriate to talk about existential questions.Through the DCI-SWE, more profound questions were raised that would otherwise not have been asked, for example, about death.One CN described that nurses might see death anxiety in older people, but might have difficulties in raising this with them, possibly because of their own fear.
In our culture, we do not talk about death.(Interview A) According to the CNs, nurses must be able to talk about death, but some wanted to refer such issues to other professions (e.g.support counsellors).While some CNs thought the DCI-SWE could help newly qualified nurses, others believed that nurses who are new at their job cannot ask PDI questions.The CNs highlighted the PDI question of 'being a burden to others'; they had to know when the appropriate time for it was: The question is hard, it really is […].But at the same time, if you are a burden […], then it can still be good to formulate, even in such harsh circumstances.
(Interview A) The CNs described that existential aspects of their work could easily be overshadowed by other duties.Some thought that the DCI questions were too sensitive and could be hard for older people to answer.The CNs also worried about leaving older people alone with their thoughts, and that they might be sad if informed about their situation.
Questions could stir things up; and the CNs might be perceived as prying.However, one CN mentioned that an older person had wanted to talk more about spiritual issues.One CN wrote: The patient's experience of her situation has emerged from the conversation, that she is worried about how it will end.[…] My experience was that the patient accepts her situation despite concerns about how everything will end.(Reflective diary of CN 2 ) The CNs stated that they did not usually talk with older people about daily routines, relations, worries about the future, how other people 'saw' them and unresolved issues.The CNs felt that the DCI-SWE might lead to something that they would need to handle and highlighted that it might be difficult for them to help older people.

| Aspects influencing the use of the DCI-SWE
The CNs experienced both facilitators and barriers to the use of DCI-SWE.They also made suggestions for establishing the use of the DCI-SWE in home health care.

| Facilitators to the use of the DCI-SWE
The One CN said that break-point conversations could help older people accept their situation and be calmer and more stable during DCI conversations.Some thought that PDI questions resembled questions asked during break-point conversations and suggested that a physician should be present during a DCI conversation.
While some CNs felt comfortable using the DCI-SWE, others did not.Some CNs asked for extra time for using the DCI-SWE with older people; others used it automatically.Many had come across similar content as in the DCI-SWE before.The CNs expressed that if the CN had the ability to hold conversations and gave enough attention to and allowed sufficient space and time for holding these, the use of DCI-SWE could be facilitated.They said that nurses with experience, who did not see the DCI-SWE as threatening or out of the ordinary, would find it easier to initiate conversations using the DCI-SWE.
The CNs further raised the importance of leadership and said that it could facilitate if first-line managers took a positive stand towards the use of the DCI-SWE as this would make CNs more confident in using the intervention.

If I have a manager who wants to conduct research, then she or he pushes it through, then this [using the DCI-SWE] is what matters. (Interview A)
At the time of the interviews, the first-line managers neither requested that CNs use the DCI-SWE nor prevented them from using it.Some felt that this lack of a stance had to do with worries about losing staff.

| Barriers to the use of the DCI-SWE
Some CNs stated that there were no barriers to using the DCI-SWE, as ways to improve palliative care were always welcomed.
However, others said that lacking resources was a barrier.The CNs related that plans to use the DCI-SWE had to be put on hold because of a reorganisation, time constraints and lack of CNs.
Regarding the DCI workshop, the CNs suggested that time should be set aside for this, so that everyone could participate.Some CNs thought that the DCI-SWE would initially affect their workload, while others thought not.
The CNs further listed lack of engagement, as well as fear, as a barrier and expressed that this attitude could easily be spread if certain colleagues not want to work with the DCI-SWE.Therefore, while some CNs spoke of good conversations they had because of using the DCI-SWE, others lacked the commitment to use the intervention.The CNs suggested that CNs who did not use the intervention would have to motivate why they chose not to use it, and thought it might enable them to hear about other CNs' positive experiences of the DCI-SWE.The comment from the researcher's field notes was: The nurse thinks that some are afraid to hold these [DCI] conversations.
Further, the CNs asked for uninterrupted meetings with older people to accomplish DCI conversations.They perceived mobile phones as a barrier.At some units, CNs always had to carry their work phones with them while on duty.
The problem is also "to sit down" […]  Hence, some expressed the need for a coordinator to help organise space and undisturbed time for this purpose.Additionally, the CNs needed to balance the use of the DCI-SWE against the purpose of other visits.For instance, if the older person lacked energy, the CN needed to be prepared to keep the DCI conversation short.The CNs needed to pay attention to whether relatives took over the conversation, and if so, provide space for the older person to express themselves.

| Proposals for establishing the DCI-SWE in the context of home health care
The CNs made suggestions for establishing the DCI-SWE in the home healthcare context.They raised the importance of highlighting all parts of the DCI-SWE when introducing it.In this context, they felt that smaller groups at the workshop would have been better.
Most CNs had a broad view of who would benefit from the DCI-SWE, but they were not agreed on this.Some CNs found it easy to identify older people who might benefit from the intervention, while others expressed difficulties doing so.To help identify suitable older people, it was highlighted that there should be more focus on those with frailty.The DCI-SWE was described as suitable for people with comorbidity or palliative care needs, for whom continued care could be planned.Some CNs expressed that the DCI-SWE can be used in people without severe concerns or palliative care needs.The researcher's field note commented: The nurse believes that it is easier to use the DCI-SWE if the older person has already received a palliative decision; it makes it easier to come up with the questions then.
However, the CNs considered older people enrolled for help with medication, or people who were very ill or at the very end of life, or who had cognitive concerns and were unable to answer for themselves as unsuitable for the DC-SWE.They suggested that the DCI-SWE should be introduced to the older person in several steps. [

| DISCUSS ION
The results showed that the DCI-SWE gave CNs structure while providing palliative care, and it helped CNs to confirm older people and to respond to their existential and sensitive needs.As previously mentioned, healthcare professionals may have knowledge about how to nurture older people's dignity, but they do not always put their knowledge into practice (Hall et al., 2014).This suggests a need for interventions that are helpful in structuring care.In our study, the CNs perceived the DCI-SWE as a help to remember important aspects and said that it gave suggestions on what can be done for older people to enhance their dignity.This is in line with what was reported in a previous Scottish study, namely, that the DCI has potential to help structure nurses' conversations about dignity issues and give patients an opening to express their concerns (Johnston et al., 2012).The DCI-SWE helped the CNs in our study to talk about existential and sensitive needs.It has been stated that older people often express their concerns vaguely or implicitly, but that CNs can respond to them in their communication (Höglander et al., 2017;Sundler et al., 2017).More knowledge on how to perform communication in a person-centred way is needed (Höglander et al., 2017).
This makes it relevant to further study and develop the DCI-SWE.
Community nurses must be attentive so that they will notice if older people have or want to discuss concerns, and so that correct conclusions about care actions will be drawn (Höglander et al., 2017).
Therefore, interventions such as the DCI-SWE that emphasise communication must be highlighted more in health care.
Facilitators to using the DCI-SWE were as follows: possibilities for training, establishing the DCI-SWE within the organisation, managers' leadership and support, and CNs being comfortable holding conversations.The usefulness of developing and improving dignity training activities has been reported (Bovero et al., 2019), making it relevant that all CNs should be given the opportunity to participate in a DCI-SWE workshop.Additionally, training can enhance the provision of multidimensional palliative care (Thoonsen et al., 2019).By establishing the DCI-SWE in the organisation, the CNs can become more comfortable using it.Then, both CNs and the older people know what issues can be expected to be discussed and what care pathway the CNs aim to follow.As the DCI-SWE is based on evidence from several sources, including both clinical and patient perspectives (Blomberg et al., 2019;Östlund et al., 2019;Werkander Harstäde et al., 2018), it has the potential to be a relevant dignity care pathway.However, our findings indicate that conversations about death can be especially challenging for CNs, possibly because in our society, we do not talk about death.Some CNs were not confident to use the DCI-SWE and needed more support, as has also been reported from Ireland (McIlfatrick et al., 2017).Such support can include concrete training (Moir et al., 2015) or focus groups to raise awareness about dignity issues (Bovero et al., 2019).The CNs expressed that leadership from their managers could help them become more comfortable using the DCI-SWE.Previous studies have pointed to the importance of managers' support (Eriksson et al., 2015;Hall et al., 2014).If managers engage more in the DCI-SWE, this may facilitate its implementation.
Making room for DCI conversations was sometimes hard for CNs to accomplish.Limited time is a significant barrier for dignityconserving care (Hall et al., 2014), making it relevant to discuss time constraints within organisations.Among the suggestions the CNs made for establishing the DCI-SWE, in the context of home health care was that a CN needs more reflection time while using the DCI-SWE, which can assist in organising work (Dellve & Eriksson, 2017).
Reflection time is especially important when caring for dying people (Eriksson et al., 2015).If the time is not given, it will be hard for CNs to embrace the new way of working with the DCI-SWE.
With CNs' valuable suggestions, the DCI-SWE can be further developed and implemented.If facilitators are developed and barriers can be addressed, the possibilities of providing dignity-conserving care to older people can be enhanced.

| Limitations of the study
A limitation of this study was the low number of older people the CNs tested the DCI-SWE on (n = 7).An explanation for this could Abbreviation: DCI-SWE, Swedish Dignity Care Intervention.
3.1.1| Gives structure while providing palliative care A clear benefit was the structure provided by the DCI-SWE, making work more systematic and the CNs more alert.The CNs said that the intervention could be used from the moment older people were enrolled in home health care/palliative care until their death.The CNs used the DCI-SWE with people with a steadily deteriorating illness, and with concerns that could be alleviated by the DCI-SWE.The DCI-SWE helped CNs to gain an overview of what could be done for the older person.… the conversation around the questions was good.In this way we have been able to identify two main problems the person has! [...] These are problems we're now working concretely with.(Reflective diary of CN 1 ) Abbreviation: DCI-SWE, Swedish Dignity Care Intervention.
workshop facilitated CNs' use of the DCI-SWE.The CNs said that the time allocated to learning about the DCI-SWE had been sufficient.The workshop had clarified important issues, had been inspirational and had created interest.The role play had made some CNs eager to try out the DCI-SWE, while others said they did not need training to use it.The CNs wanted everyone to work in a similar fashion and felt that having routines in place for the DCI-SWE would facilitate this.They said that holding conversations was as important as everything else in health care, and that establishing the DCI-SWE as part of the care work for the organisation would make the CNs more comfortable.I can sometimes find it a bit difficult to ask these questions but if it is legalized […] then this is what we should follow.(Interview A)The CNs expressed that DCI-SWE should not be used spontaneously without first discussing it with the older person.They further believed that giving information to older people about their illness would facilitate the use of the DCI-SWE.If not appropriately informed, older people might get lonely having to face their problems on their own, which will negatively affect their dignity.Knowledge about their condition enables older people to decide what they want to do while they are still able to do it.Some CNs felt that a break-point conversation must precede the introduction of the DCI-SWE, while others thought not.… it is important that you are convinced that the patient has understood it [that nothing more can be done] because otherwise it [using the DCI-SWE] can go crazy … (Interview C) The process of using the Swedish Dignity Care Intervention (DCI-SWE).PDI, Patient Dignity Inventory …] you can take a few questions and see if you're on the right path.Then if it turns out that you find a concern, you can go on with more and more[questions].(Interview B) It was suggested that the amount of text in the DCI-SWE should be shortened as older people often have limited strength, and the PDI facilitated if there were fewer questions and answer options.Some CNs thought that the PDI questions had a negative focus and suggested using more open questions.
To conclude, most CNs felt that, with cooperation among themselves, using the DCI-SWE could work within the organisation.The CNs suggested they could coordinate the DCI-SWE work at morning meetings, and further use the intervention in conjunction with home healthcare enrolment visits, drug reviews and senior alerts (a care prevention tool), and integrate it into break-point conversations.They felt that this would make these meetings more complete.