We present the key themes in order of prominence.
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Providing relevant spiritual care services in a religiously, culturally, and racially diverse population
By far the most prominent theme from the FGDs focussed on the barriers hindering the provision of effective and relevant spiritual care services within a highly diverse population.
Participants argued that hospice personnel needed to have a basic working knowledge of the main religions in SA.
On the other hand, the ability to engage with patients about spiritual and existential issues without referencing religion was also mentioned as a crucial skill. Participants emphasised the need to be tolerant, sensitive and non-judgemental.
As a participant from Hospice #2 put it:
I was sitting here thinking that should the whole spirituality curriculum then not focus a whole lot on those who do the training to reach highest level of self-awareness because when you are self-aware, your ability to tell and convey to others their worth and their value within their existence is just so much easier…because I think that we are kind of stuck in the thing about spirituality equals religion…it doesn’t and to break that mind-set in people, especially in Christians, I find very difficult.
According to participants, this requires self-knowledge and openness:
And if it’s about self-awareness, then if you’re not comfortable with homosexuality for example, it would affect you if your patient is requiring, or if your patient who is homosexual needs your help…
(Participant of Hospice #5)
Racial, cultural and linguistic diversity
Participants believed that patients should ideally receive care in their mother tongue. However, the resources required are not often there:
The other thing of course we started looking at (was) for Xhosa speaking patients we want somebody that can support them in their mother tongue language.
(Participant of Hospice #5)
Specific mention was made of the need to know and respect traditional African beliefs, spiritual practices and bereavement rituals. Hospices need to be tolerant and sensitive to African bereavement rites; and to allow space for these to take place at the hospice in a way that does not negatively impact on the other patients. This is how a participant from Hospice #7 put it:
…the patient died, and the family came back for the spirit…they want to catch the spirit and they ask us if we can allow them to come catch that spirit because they believe (after the) patient (died)…the spirit stayed behind…we had to (allow for this ritual), but in the specific way where we say we will give you this part of the area (hospice) because we have to think about our other patients and protect them and they don’t see somebody is looking for a spirit here. So we make space for them and they came and catch the spirit and they spent a few hours in ways to get the spirit and then eventually they leave.
On the other hand, participants noted that patients did not always want a representative from their official religion or speaking their mother-tongue. Some patients may want spiritual guidance and support from a person with whom they have built a close relationship. Navigating the territory between trying to make appropriate spiritual care available on the one hand, and allowing for choices which violate assumptions about cultural and spiritual differences on the other, could be a challenge in practice. As a participant from Hospice #9 put it:
(A Muslim, Afrikaans-speaking patient) overheard me speaking to other patients after the (Christian Xhosa-speaking) pastor had visited…about what is going on in spirituality, in the Christian work. (The Muslim patient asked me): “Can the pastor come pray for me?” I said, “We’ve called your Imam (Islamic priest); he’s going to help you.” But she keeps on asking (for the Christian pastor). So there comes a time that they don’t understand their religions, I would rather say that.
2. The Organisational Context
Participants felt that spiritual care services were an integral part of the palliative care Inter-Disciplinary Team (IDT), whether provided by a designated person or by a team. It was felt that all IDT members should be able to support the patient’s spiritual needs. Hospice participants went on to list intangible resources such as time and effort as a crucial part of spiritual care services.
Hospice-specific palliative care team dynamics and organisational culture
Participants affirmed that working in an IDT helped provide a deeper, more holistic understanding of the patient’s situation and challenges. Having a structured inclusion of spiritual care into the IDT consultations and patient assessments was reported to be exceedingly helpful.
On the other hand, participants reported that some colleagues were not comfortable working with spiritual issues. Working in a team would allow such colleagues to hand over to other, better equipped colleagues. As Hospice #1 participant put it:
So for me it’s working with what you have (the staff) and enable that to be completely comfortable and open and that’s where we start, because…a lot of the staff cannot do it (spiritual care). They want to run when there’s an existential need expressed (by a patient)…
There was a felt need to create spaces where all team members bring different professional, personal and spiritual schools of thought to the table and allow for those differences to be acknowledged, recognised and respected. This creates a tolerant, pluralistic atmosphere for patients as well. Indeed, the smooth functioning of the IDT was viewed as so important that some hospices hired spiritual care staff to fit the team and not necessarily all the ideal requirements of the spiritual care post. In recruitment processes in many hospices, the larger team often gave input into the recruitment and selection of a prospective spiritual care staff member, to ensure that they could all work well together. A participant from Hospice #11 explains:
We trust each other…when we hire…we hire for a fit on the team…the person that gets chosen may not have all the qualifications but if they fit in the team…we can grow (that person).
Having a larger team that worked together on the patient’s overall care plan, and particularly the patient’s spiritual care plan, could also ensure that adequate support was provided to the staff, which could reduce stress and burnout. Staff often worked in situations that were difficult or uncomfortable for them. Working in teams could be a better option in difficult situations where workers were struggling, emotionally or professionally, as a participant from Hospice #5 puts it:
The ability to know even if you are trained, that if you can’t handle a situation, that you need help. I have seen many people go under (burn out) because they take on more and more.
You don’t go in alone because two is stronger than one.
The organisational culture of the hospice was cited as another crucial element. Hospice #10 participant explains:
What culture the organisation lends itself to…whether spirituality is embraced or not…will set the tone in terms of the spiritual care (that it provides or does not provide).
…the culture of spirituality…in this organisation…is how we do things and people who come in new will automatically sense the culture of that organisation.
The calibre of staff working in the spiritual care service team was also mentioned as a crucial factor affecting the quality of spiritual care services. In addition to skills that can be acquired through training and development, staff needed to be empathetic and open to continuous learning, feedback and self-improvement. There was a difference of opinion as to whether there should be dedicated spiritual care service staff or whether all hospice staff should be trained to offer spiritual care services:
…we have a (formally employed) spiritual care worker, volunteer spiritual care worker that sits on our IDT, and are (present) at all our meetings and we also have a counsellor and our social worker, nurses, doctors.
(Representative of Hospice #12)
However,
Ja, so for me…my thinking is that in terms of addressing spiritual existential needs, one would have to situate all members of the hospice team that at any given time or any given point in the journey with that patient, they are open and available to address any existential need because you can’t box that need at any point in time.
(Representative of Hospice #11)
Having dedicated spiritual care staff could allow for more cost-effective training and skills development for fewer people. However, as the patient decides with whom they wish to talk about spiritual and existential issues, having only one or two spiritual care staff could limit the patient’s freedom of choice. Having designated staff also limits the availability of spiritual care services to patients, as patients could decide to talk about these issues whenever the moment seems right to them. The designated spiritual care services staff may not be present at that specific moment, and the present staff would have to deal with the matter as best they can. This could have a negative impact on the quality of spiritual care services provided to the patient.
Conflicting demands
The conflicting demands of the patient’s wellbeing – balancing physical care with emotional and spiritual care – contributed additional complexity. All needs were urgent, but finding time to focus on spiritual care in the face of urgent physical care needs could be challenging. There are significantly fewer spiritual care workers compared to other professions represented in hospices.
Participants noted that it is challenging to assess the impact of spiritual care, and this in turn makes it difficult to assess what best practice may be:
And then I just need to say that most of the time we find out that the value of what we do is only seen after we’ve seen the patient and family and up to two, three months, four months. We get a card or we get a phone call to say thank you that you have helped us through this journey. And every so often our doctor here will come back to me and say (representative’s name), what did you do to that man (patient)? And then I will say, well, you asked me to do some support and uh the guy never wanted to be compliant or didn’t want to work along with the doctor and the nurse and was always angry or aggressive maybe. Then after I’ve seen the person (patient), the doctor comes back and wants to know what I did. Well, I think I did what I was asked to do.
(Hospice #11 representative)