Home-based palliative care services from the perspective of family caregivers: an evaluation of the Integrated Palliative Care model in Tyrol / Häusliche Palliativversorgung aus der Sicht der pflegenden Angehörigen - eine Evaluation des Modells Integrierte Palliativversorgung in Tirol
Pubblicato online: 23 lug 2023
Pagine: 24 - 36
Ricevuto: 03 ago 2022
Accettato: 05 giu 2023
DOI: https://doi.org/10.2478/ijhp-2023-0004
Parole chiave
© 2023 Christine Rungg et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
The wish to die at home is widely described (De Roo et al., 2014; Woodman et al., 2016). The European Association for Palliative Care states that even though 75 % of terminally ill persons prefer staying at home, 60 %–95 % die in institutions (Radbruch & Payne, 2011a). Different strategies have been developed to promote palliative care at home (Graaf et al., 2016; Murray et al., 2014). Availability of informal carers, their competencies and capacities to cope with terminally ill patients are increasingly recognised as a backbone of palliative care at home (Gomes & Higginson, 2006; Horsfall et al., 2015). Family caregivers undergo enormous stress and have associated health risks (Horsfall et al., 2013; Stajduhar et al., 2010). The care for a terminally ill person puts family members at risk of becoming patients themselves, referred to as “hidden patients” in the literature (Kristjanson & Aoun, 2004). Increasing demands on family caregivers can lead to hospital admissions of the cared-for person at the end of life (Gomes & Higginson, 2006). “Caregiver burden” describes the negative physical, mental, emotional, and socioeconomic impacts of providing care (Carretero et al., 2007). Demands of caregiving intensify at the end of life: caregivers experience the most burden and negative health impacts from caregiving during the terminal phase (Williams et al., 2016). Pelttari et al. (2018) estimate that 80 %–90 % of dying people and their families need general palliative support at the end of life. In 10 %–20 % of dying situations, specialized palliative care is needed (Pelttari et al., 2018) to support family members and to avoid hospitalization at the end of life (Scazzabarozzi et al., 2016). To give an example, the model Hospice at Home (HaHo) in the Netherlands has shown that due to professional support, 91% of the cared-for people could die at the place of their choice (Graaf et al., 2016).
Family caregivers interact with palliative care professionals in at least two ways: as a “caregiver” and as a “care recipient”. Good communication and cooperation with professionals play an essential role in decreasing caregivers’ burden (Ateş et al., 2018). The establishment of relationships and the quality of collaborative work with palliative services strongly influence the family caregivers’ perception of provided care and support (Linderholm & Friedrichsen, 2010).
In Austria, a population-based plan for care at the end of life, called
Our study was carried out in Tyrol, a western Austria province with a population of 760,000. In 2019, only 24 % of deaths took place at home (Statistik Austria, 2020). The Integrated Palliative Care (IPB) model was launched as a pilot project in 2009 and has since been implemented throughout the province (Tiroler Gesundheitsfonds, 2018). The IPB care organizational structure consists of primary care providers (general practitioners (GPs) and district registered nurses (RNs)), the mobile palliative care team (MPCT; doctors and nurses specialized in palliative care), various therapeutic services like physiotherapy or psychotherapy if needed, and hospice volunteers. The GP makes decisions regarding the time to contact the MPCT team and to start the IPB care process. The team further coordinates home-based care in complex palliative situations and aims to: i) support dying at home without any additional costs; ii) avoid emergency admissions to the hospital; and iii) provide the needed support for the dying person and their family (Medicus et al., 2012). Services are, on average, provided for four to eight weeks and end when the cared-for person passes away.
Although the model has existed for many years, no research has been done on it so far, and an evaluative look at the care model to identify potential for improvement was long overdue. So, in a first step, the perspective of family caregivers on IPB was surveyed in a dissertation (Rungg, 2020). The aim of this study was to investigate how family caregivers caring for terminally ill persons at home perceive palliative care services of IPB. Specifically, research guiding questions were:
How did family caregivers experience care within IPB? To what extent were care needs met? What would have been needed in addition? What was too much care? What was experienced as helpful/not helpful? What problems did family caregivers face despite professional support? Did emergency admissions occur during the time of care? Were the persons being cared for able to pass away in the place of their choice? How was the end of care experienced?
To capture the experience of family caregivers in its diversity and depth, following a social constructivist research paradigm, a qualitative research design was chosen. By means of a problem-centred interview (Flick, 2018), former family caregivers were asked about their experiences in the time of caregiving for a person cared for under IPB. The topics covered by the interviews were the perception of the IPB with regard to quantity and quality of the professional support as well as the experiences that the family caregivers had during the caregiving period. Semi-structured interviews were carried out face-to-face in the home of the family caregivers. An interview guide ensured that all relevant aspects were addressed and allowed partial comparability of respondents’ answers. Additionally, field notes were taken. Starting the interview, participants were asked to describe the caregiving situation using a narrative-generating question (Flick, 2018). This start was chosen to give interviewees the opportunity to talk about their personal experiences in addition to the prepared questions in the interview guide. Underlying this was the assumption that there would be important areas away from the interview questions that should receive more attention in IPB care in the future.
Adult relatives over 21 years of age who were the main caregiver at home of a person receiving IPB care, regardless of their underlying illness, were chosen as interview partners. Based on the recommendations of the mobile palliative team, the time period for the interviews was chosen as six to twelve months after the death of the cared-for person, since the relatives are strongly challenged with organizational issues in the first months, and the distance to the experiences becomes too long after more than twelve months. An exclusion criterion was if the deceased person was a child under 18 years of age.
The members of MPCT Innsbruck and the head of the home-care nurses “Telfs und Umgebung” recruited the main informal adult caregivers (age 21+) who were previously caring for terminally ill persons and received the services of IPB. Before the first contact with the researcher, potential study participants were asked for consent to be interviewed. Information and informed consent were then sent to all participants directly in written form before the interviews.
Twelve interviews with 14 participants (as in two interviews there were two participants each) were conducted between December 2017 and May 2018 by the first author, a female RN and psychologist with years of experience in psychological counselling. Interviews were recorded by consent and transcribed verbatim and in full, using f4transcript, version 6 (Dresing & Pehl, 2018). Subsequently, the transcripts were proofread several times and pseudonymized.
The transcribed material was subjected to qualitative content analysis according to Mayring (2016). Coding was performed using VERBI software, version 10.0.8 (MAXDQA, 2018). Aims of IPB and findings from a literature research were the basis for forming deductive codes and subcodes. However, due to the narrative-generating introductory question, revealing narratives were found that went beyond the expected content. These led then to inductive codes and subcodes. Codes and subcodes were thus formed in the sense of deductive-inductive category formation (Kuckartz & Rädiker, 2019). To ensure quality due to consistency in the coding process (Kuckartz, 2018), four interviews were coded again in a team of three independent experts, two interviews were coded by two experts each, and the codings were then compared.
Twelve (85.7 %) of the 14 interviewees were women, including five wives, five daughters, one mother and one daughter-in-law (see table 1). The two men were a husband and a father. The average age of the interviewees was 57.3 years, ranging from 37 to 86. The duration of the interviews ranged from 32 to 77 minutes, with an average of 52 minutes, depending on individual respondents.
The IPB care network consisted of GPs and RNs in all care situations, and the MPCT was involved in all but two cases. Other professionals, such as therapists, pharmacists, or priests were rarely mentioned. Informal helpers in all care situations were family members, which reflects the family-based structures in Tyrol (Brandt & Szydlik, 2008); friends or neighbours were barely named. Four key overarching and not mutually exclusive codes with several subcodes were identified from the interviews. Table 2 shows an overview of the codes and subcodes with their frequency, the number of negative statements, and whether they were formed deductively or inductively.
Sample characteristics.
| 1 | female | 62 | wife | 42 minutes |
| 2 | male | 73 | husband | 54 minutes |
| 3 | female | 60 | wife | 46 minutes |
| 4 | female | 72 | wife | 54 minutes |
| 5 | female |
64 |
mother |
54 minutes |
| 6 | female | 50 | daughter | 63 minutes |
| 7 | female | 77 | wife | 53 minutes |
| 8 | female | 49 | daughter | 77 minutes |
| 9 | female |
86 |
wife |
41 minutes |
| 10 | female | 43 | daughter | 52 minutes |
| 11 | female | 37 | daughter-in-law | 32 minutes |
| 12 | female | 49 | daughter | 57 minutes |
Overview of codes and subcodes.
We further ordered the subcodes within the description of the codes according to their frequency and selected representative quotations from the interviews.
Study participants indicated the importance of organization and coordination of palliative care services. Five subcodes were identified: day and night accessibility of professional help; coordination between the different professionals; responsibility of family caregivers for people in the informal care network; clarity about responsibilities of palliative care professionals; and continuity of professional care.
Availability of 24/7 professional help, especially for emergencies, was emphasized to strongly increase the feeling of security:
There was always someone available day and night. I was given a special number and in case of an emergency, I could call that and in a few minutes, you can say, someone was already there. And it always worked.
In 12 interviews, only one emergency hospitalization was reported; all other emergencies could be managed at home.
Interprofessional coordination of duties by IPB personnel was perceived both positively and negatively by family caregivers. Things became more unambiguous for them when they perceived good coordination:
...and it was a tremendous agreement between the institutions. I also heard that afterwards from nurse M., they often talked to each other on the phone. Home-care nurses, hospice and family doctor and—so the two of us were under close observation ... it reassured me. I felt carried.
Six negative statements (from a total of 26 statements) around this aspect showed that lack of coordination between IPB, hospital staff, and caregivers caused feelings of uncertainty and insecurity:
… the hospice didn’t know what the hospital practically prescribed. So they have to call in the night, the hospice calls the hospital, in case of medication or dosage [uncertainty]—anyway, that took almost three hours until they all went away again.
Interviews highlighted that family caregivers felt responsible for other informal caregivers and in some cases had to support them in dealing with the palliative situation. This represented an additional task for interviewed caregivers, often experienced as stressful. This subcode shows the highest relative proportion of negative comments in this study:
And my sisters just came and did their utmost. However, their best was not my best. You have to deal with that, and if the sister simply cries and—then it would be good if someone else were there to catch her. But it can’t always be me. A woman came until the end … until ten days before his death and that was one, one – a friend for over forty years. Yes, but then she cried so much herself, I had to comfort her.
In this context, it was mentioned positively when MPCT nurses not only kept an eye on the cared-for person, but also on the entire environment and, for example, specifically asked about the condition or needs of the family caregiver, or other people in the care network were also cared for in the sense of the unit of care:
But everyone has taken time, or everyone has also always cared for me, I have really had the feeling. So, just a quick three words. “How are you doing with all of this?”
As described above, various healthcare professionals were involved in all care situations. Most interviewees reported that it was clear to them whom of the involved professionals they could contact for which concerns.
“Yes, I already knew that. Everyone always said that if something happened, like with the pain pump, “Then you can call me”, or whatever else. Yes, it's actually everything—I already remembered who to call where when I needed something. That all worked out.”
In the two care situations where the MPCT had little or no involvement, and the interviewees expressed a lack of knowledge about the MPCT services that could be helpful in the particular situation, for example, for better symptom control.
In eight interviews, continuity was described as a positive aspect of achieving certain familiarity. Others expressed their wish for continuity of professional care. In the four negative comments on this topic, respondents reported frequent changes in MPCT staff.
And it's nice when it's the same people. If someone new doesn’t always come. … it would have been finer if more often the same person comes. It is there a frequent change, and until everyone has known my mom, the story was then anyway almost over.
To summarize, the organization of the IPB team was perceived as positive by respondents when professional help was accessible 24/7, well-coordinated, and the responsibilities of team members, as well as of family caregivers, were clearly defined.
Family caregivers reported receiving support from the IPB team in three fundamental dimensions: informational (in form of knowledge transfer), emotional, and practical.
Interviews highlighted knowledge transfer as a central aspect of professional support for family caregivers (47 mentions in all 12 interviews; see table 2). For example, family caregivers reported receiving “training” in nursing activities such as personal hygiene or handling the pain pump:
So, and there it's just also important that someone comes from the outside and really, that the questions also—yes, that you can also ask them three times, or whatever.
Tips, tricks, and guidance were welcome (positive mentions 39 times in all interviews), the wish for control and feedback from the IPB team was expressed by four family caregivers. Knowledge transfer helped the family caregivers to better understand the situation of the cared-for person. Additionally, it could make the care situation easier or more bearable for the family caregiver. It also prepared them for possible emergencies:
And when we’ve had questions, they’ve been there for us and—because we’ve inquired, “What about pain? What if she's hurting?” So, they’ve given us—they’ve given us a protocol of what all you can give when she's hurting, what all we can do.
Eight negative statements referred to inadequate knowledge transfer and described the associated feelings of uncertainty and stress:
I have often—it has already burdened me because I have not known how it will happen ... you already hear some things, which already burden you. And you just don’t know what's in store for you.
Two interviewees described situations where they had observed knowledge transfer between professional helpers, which is an intended effect of models of integrated care. Several family caregivers had gained a lot of knowledge and experience through years of care. For them, the transfer of knowledge became significant immediately in the terminal phase, which was then a completely new situation.
The emotional support that family caregivers received from IPB professionals was highlighted as of great importance in all interviews (39 positive mentions; see table 2). The terms security, not being alone, and reassuring were often used by interviewees:
Just for my security, for my feeling. I know I’m not alone. If I really have questions or I don’t know how to help myself, I know there's someone there.
There were numerous examples of how interviewed family caregivers received practical support from the IPB team (29 mentions in 12 interviews). The assumption of care was the main and most noticeable aspect of practical support. Further, interviewees mentioned positively the help with organizational matters, such as the procurement of care materials and medications:
... and they got the prescriptions and also the pharmacy things for me so that everything was there ... there was always something where you had to get something. And that was a great help for me when I didn’t have to do everything myself.
Thus, professional support by the IPB team met the needs of family caregivers and was perceived as a very important aspect of palliative care experience, with informational and emotional support being the most appreciated.
Concerning the quantity and quality of palliative care services, both positive and negative perceptions of the IPB services were identified.
The perception of the quantity of professional support was diverse (54 positive and 25 negative mentions in all interviews):
We have to say it's been good. We’ve gotten all the help we’ve needed.
At the same time, some family caregivers talked about care gaps that had occurred. These gaps can be attributed to too little practical support in caregiving (especially during the nights), too little support for family members, too little communication, and a lack of focus on the overall system of people involved in the care situation:
And the first and second time the woman on the phone said how I was. And then we just told her about the nights. But then she immediately sort of shrugged it off: “Yes, that's up to the family doctor now, we can hand that over to the family doctor.”
Too much support was also reported as negative: when professional helpers came too often, when relatives were deprived of care activities that they had previously taken on themselves, or, for example, when too persistent an attempt was made to talk to family caregivers about their condition:
“However, from time to time nurses came, they meant it totally well, only – only ... that was then too much for me ... they sat there and talked nicely. However, I had the feeling, I don’t like to talk anymore ... I didn’t have the calmness ... that was a very small trace too much. Too much attention.
All descriptions of the quality of the professional support can be attributed—both the positive (37 mentions) and the negative (12 mentions)—to the technical and communicative skills of the respective professionals that family caregivers observed during the contact between the cared-for person and the professionals:
And, and above all, there was one who always whispered with her [the cared-for wife] like that. There you saw, there she sometimes laughed a little bit, the wife has—yes. My husband has always hated when someone acts so pitiful with him or when he is treated like a little child. And that's what that one did. And that upset him quite insanely. ... then, as I said, a nurse came, and she had no idea. And that was terrible for me. But that was the only time when I thought to myself, that was completely wrong.
To summarize this category, an observed diversity in how respondents perceived the quantity and quality of palliative services reflects a lack of communication between the IPB team and family caregivers as well as the importance of assessing individual needs.
The incidents before, during, and after the death are a very significant aspect of care, and the narratives about them played a central role in all the interviews. Therefore, they are treated as a separate category, although there were numerous overlaps with the previously described categories. The following subcodes were identified in the interviews: assistance during death; talking about death; the certainty of impending death; preparation for the expected circumstances of the death; and bereavement support.
This subcode was mentioned 37 times in all 12 interviews:
And the nurse afterwards, and with the other nurse, they washed him and really dressed him, freshly bedded him. I probably wouldn’t have been able to do that.
Except for one negative comment, interviewees commented positively about the support received from professionals around the time of death, whether professionals were present at that time or helped with the care of the deceased.
Dealing with death as a topic was differently perceived: If death was a topic in the family to be talked about, the relationships were described as intensified and resulting in enhanced intimacy. If it was not possible to talk about death, family caregivers expressed difficulties like uncertainty and regret, which sometimes became noticeable even after the end of the care situation:
But I have to say quite honestly, I kind of just blocked it all out. I kind of—my husband was constantly repressing his illness himself.
Four interviewees mentioned that it was the IPB professionals who initiated the conversation about death and dying. In retrospect, this was seen positively, even though these conversations were remembered as difficult or even painful. In two of the 12 care situations, the cared-for persons did not die at home. The family caregivers did not know the desired place of death before professional care was provided. One interviewee described with gratitude how it was thanks to the professional helpers’ view of all involved that the question of the desired place of death could be clarified and her mother could die in the hospice, which had been her actual wish.
In retrospect, verbalization of the certainty of impending death by the IPB team was frequently mentioned as correct and important. Perception of information about approaching death varied among interviewed caregivers and was partly attributed to the communication skills of the healthcare professionals:
Yes, that's what the family doctor said, and the palliative team was also there. And they said afterwards—the family doctor said afterwards: “Yes, it won’t be long now.” That was about two or three days before.
If impending death was not verbalized by professionals, interviewees expressed the opinion that it would have been better if they had known and been aware of it:
And what I’m missing, perhaps, what I often think even today, this drawing attention to the situation, that it really is finite. I don’t know how to say. That you really look there and see: do they check that this is really coming to an end?
If family caregivers were sufficiently informed about the expected circumstances of death by professionals, they reported an increased sense of security. The high number of negative comments (seven negative mentions in 12 interviews) on this aspect can be attributed to two factors: First, family caregivers experienced it as stressful when they felt insufficiently informed about what might come their way:
But I wanted to know what to expect. Because you hear a lot of things—especially about lung cancer. So I said: “You often hear that blood comes out and things like that”. And that's what I wanted, somehow, so that I can prepare myself for it ... and how it will happen.
On the other hand, preparing for the impending death of the cared-for person evoked fears in some family caregivers:
And she then rattled it all off, what all could be and how she [note: the cared-for mother] was probably going to die. That was then rather bad because she said she was going to suffocate. That was quite bad. So, that wasn’t so good. Also kept my dad busy. For ages, for ages, it was still a topic, this conversation. Already also my sister and how bad that was.
Although not part of their official duties, the IPB team members offered informal caregivers further personal contact or contact to the Tyrolean Hospice Community for bereavement support. Neither of the two offers mentioned in eight interviews was accepted by either of them.
One interviewee who was still suffering greatly from the difficult palliative home care situation expressed a clear regret about not getting this information about the bereavement support, which she would have definitely accepted.
It was wished by three interviewees that there should be further contact with the IPB care team involved at some later points in time:
What might be—I think it would have been too early then, but what might not be bad now would be psychological support for the surviving dependants, so that—and you don’t do it yourself. I have to say quite honestly, you don’t go there now and say: “No, now I’ll look for someone.” That would have kind of—if it were to affect somebody again, that might be really fine to say upfront, “we’ll get back to you in a month.”
To sum up, the service of IPB in the terminal phase was greatly appreciated by family caregivers and was found particularly needed around the existential moment of death. Interviewees acknowledged the importance of conversations about death and its inevitability. However, palliative services in the terminal phase were focused on the medical aspects and the patients’ preparation rather than on the family caregivers’ preparation for death. The bereavement phase is not included in IPB services and, even though possibilities for bereavement support were offered to caregivers, these options were not used.
The IPB home-based palliative service in Tyrol investigated in our study was developed to meet patients’ and families’ needs when dying at home by providing individually tailored care. Our study sample reflects the typical gender division; Lang, 2018; Nagl-Cupal, 2018): 12 out of 14 interviewees were women, mainly wives and daughters.
In line with previous studies, positive feedback on the quality of palliative care predominated in all interviews, and criticism was rarely voiced (Klie, 2016; Pleschberger, 2007). All interviewees expressed a lot of gratitude for the help they were likely to receive and described that without this help they would not have been able to manage home care and dying at home would not have been possible.
The four overarching categories included the organization of IPB services; informational, practical, and emotional support by the IPB team; family caregivers’ views on general quality and quantity of home-based care model as well as the role of IPB in and after the terminal phase. These categories seem to be linked: good organized professional home-based care provided the necessary support and good collaboration with the IPB team helped family caregivers to reduce their burden.
Our study revealed both positive and negative aspects associated with the organization of home-based palliative services: Most family caregivers highlighted the 24/7 accessibility of IPB services, without which home care and, not least, dying at home would not have been manageable. The necessity of good coordination between palliative care professionals and the importance of clarity about responsibilities of various team members were often mentioned. Both of these aspects increased family caregivers’ feeling of security in this difficult situation, whereas poor coordination or lack of clarity about who is responsible for what unsettled family caregivers.
A clear deficit in family caregivers’ view was that in some cases professionals did not seem to have an overview of the care network. This manifested itself in two ways: On the one hand, family caregivers were not recognized and/or acknowledged as being part of the care team in some cases. On the other hand, we identified the inductively formed subcode “responsibility of family caregivers for other people in the care network” as the one with the highest relative proportion of negative statements in this study. Interviewees stated that not only the cared-for person but also other informal carers were part of the daily informal care network. The number of negative statements highlighted that family caregivers felt responsible also for this informal network and experienced it as an additional overwhelming task mostly unnoticed by IPB professionals. Caregivers wished for more support for this aspect. The support provided by informal sources (family and friends) and formal sources (healthcare staff in our study) can strongly reduce caregivers’ burden. Nevertheless, it can have a negative effect when it does not meet the needs of the main caregiver as revealed in our study and by others (Lessard et al., 2014; Nurullah, 2012). Professional helpers should have an overview of all the people involved in the care network and their needs in order to relieve the main family caregiver. Several previous reports have shown that, regardless of the care setting, being part of a good formal care team helped family caregivers to fulfil their tasks (Andershed, 2006; Bee et al., 2009). Perhaps including a social worker additionally in the core team of IPB to supervise or coordinate the informal and formal network activities would help to better assess caregivers’ needs.
In line with previous studies (Hudson et al., 2004), the aspect of continuity of professional care and rejection of a change of IPB staff was prominent in most interviews.
Professional helpers can help family caregivers in the home care of dying people through knowledge transfer as well as through emotional and practical support. Support needs are commonly well addressed in home-based palliative care settings (Proot et al., 2003). In our study, practical nursing support by professionals enabled caregivers to provide needed care. Emotional support by healthcare professionals and/or hospice volunteers was strongly emphasized and appreciated, as it reduced feelings of anxiety, insecurity, and loneliness.
A previous study also highlighted the lack of information exchange for family caregivers providing end-of-life care (Bee et al., 2009). Insufficient communication about practical issues when family caregivers did not know “who was coming, how often and when” was reported before (Brazil et al., 2010). It was found important to acknowledge that links between family caregivers and the palliative care team are essential for perception on how care needs are, or are not, being met. It has been reported that family caregivers felt neglected and powerless when they did not manage to establish a relationship with healthcare professionals (Linderholm & Friedrichsen, 2010). Our results confirm and extend these findings and provide a better understanding of family caregivers’ interaction with members of the home-based palliative care service team.
Our study provides numerous examples of successful and accurate support. Central to this were the skills of the professional helpers, whether they recognized what the needs of the family caregiver were and whether they responded accordingly. Previous studies in palliative care emphasized the multidisciplinary approach to the complex needs of patients and informal caregivers (Bekkema et al., 2014; Blacker & Deveau, 2010; Taels et al., 2021).
Almost all interviewees found the level of professional help to be appropriate. When too little help was reported, it was mostly related to the lack of support during the nights, which reflects a structural problem in Tyrol (Them et al., 2018). In a few cases, too much care was reported. Family caregivers reported deviations from the ideal amount of support in the interviews, but in the care situation itself, they had not discussed this with the professional helpers—they had accepted it.
In assessing the quality of support, the personal skills and abilities of the individual professional helpers reported by the family caregivers were once again important. Central again were the communication skills.
When preparing the interview guide, the aspects concerning the death of the cared-for person did not have a high priority. In the interviews, the family caregivers reported in great detail about this existential experience. This led to the formation of four additional inductive subcodes in the analysis.
Positive descriptions of support during the death of the cared-for persons were elicited from 37 out of 38 mentions of such support. A much more differentiated picture emerged for the subcodes “certainty of impending death” and “preparation for the expected circumstances of death”: The major concerns that have emerged in our study were the family caregivers’ feeling of being unprepared for urgent situations and not being sufficiently informed about the terminal phase. In the view of the interviewed family caregivers, palliative home-based care only partly addressed this concern. This underlines once again the significance of informational support through knowledge transfer. Here, good training and preparation for family caregivers is needed so that they can develop a sense of competence. Family caregivers underlined essential psychological aspects such as “talking about death with dying person” or “preparation for the expected circumstances of death”. This has been seen as a major challenge, often lacking necessary information, and causing anxiety. If the palliative team succeed in overcoming emotional barriers to discussing death, caregivers considered being better prepared and thus more confident in their care. Thus, our study revealed that deficit of the informational support was the most prominent in the terminal phase and the preparation of caregivers for the death circumstances.
Another point of concern discussed by interviewees was the support in grief after the death of the cared-for person. The existing IPB model does not officially include the period after death. The offer to contact IPB professionals in the future beyond the official IPB care was not taken into consideration by family caregivers. Nevertheless, all interviewees gave feedback after the interview that it had done them good to talk about the care situation with our researcher. Further investigations are required to identify ways to better cover family caregivers’ bereavement needs within the model of IPB. Our findings on the category of “around death and dying” suggest that the IPB model currently prioritizes clinical over holistic needs and emphasizes the importance of a holistic care approach for the dying person and family caregivers in the terminal phase as well as in the time of bereavement.
The generalizability of the results of this study is low, given the small sample of 12 interviews with 14 persons. A further limitation may result from the preselection of interview partners by the IPB organizations. The group of persons interviewed may not be representative of all cared-for persons within the framework of IPB. The interviews were conducted six to twelve months after the cared-for person's death. The data collected are based on memories, and results might have been influenced by the time that passed between the death of the cared-for person and the interview. The study participants might have been grieving, and this could have influenced the way they communicated their experiences. Moreover, the results represent the subjective experiences of interviewees as interpreted by the researchers.
The interviews on the experience of care within the framework of IPB primarily reflect great gratitude for the help received in this difficult situation, which one would not have been able to cope with alone. Critical feedback was rarely expressed directly, but various negative mentions indicated the potential for improvement. In terms of the three levels described by Bainbridge et al. (2010), they can be assigned to the “structure” and “process” levels. On the one hand, it is “the structural framework” that did not meet all needs and requirements: deficits in healthcare coordination, the lack of professional support at night, and the abrupt end of support with the death of the cared-for person are aspects where there is potential for improvement from the family caregivers’ point of view. On the other hand, critical feedback was found in the interviews concerning the interpersonal aspects of care and thus “the process”: lack of knowledge transfer, insufficient communication, missing coordination of formal and informal care networks, as well as inadequate preparation for the death of the cared-for person.
In addition to empowering family caregivers to provide direct care, their needs must also be seen. Aoun et al. (2018) see a need for action and further changes in the work of healthcare professionals—moving away from often patient-centered care for the dying person to addressing the needs of the “unit of care” (Aoun et al., 2018). Where this was successful, the interviewees of the present study commented positively that they felt perceived and supported as people with their individual needs. However, our findings call attention to the currently underrepresented holistic care approach. In this context, tools such as the CARES Framework for family caregivers (Alam et al., 2020), the Carer Support Needs Assessment Tool (CSNAT; Aoun et al., 2018), or its German version KOMMA (Kreyer & Pleschberger, 2018), are possible ways of encouraging family caregivers to reflect on their situation and to make them aware that their condition and needs are important for professional support. Discussing the resources and support needs of family caregivers in the context of a conversation lays the foundation for professional helpers to be able to individually meet the respective needs in the course of care. Since the study was conducted, there have been years in which hospice and palliative care in Tyrol has evolved. At the end of 2019, the gradual implementation of KOMMA was started within the framework of IPB. It will be interesting to see whether this addition to IPB has the desired effects on the experience of family caregivers. If we use avoidance of hospitalization at the end of life and dying in the desired place as criteria to assess the success of home-based care, we can say that the IPB model was successful in the present sample.