Being the next of kin of an older person living in a nursing home: an interview study about quality of life
The length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care.
This is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes.
The next of kin’s experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple’slife situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person’s vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin.
The findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person’s health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin.
NCT02708498, 15 March 2016.
KeywordsQuality of life Next of kin Family member Implementation Older person Nursing home Palliative care Qualitative content analysis Relatives Significant others
End of Life
End of Life Care
An acronym from Swedish: KUnskapsbaserad PAlliativ vård
Quality of Life
World Health Organization
The end of life (EoL) often involves relocation for an older person and a transition not only for the older person but also for his or her next of kin  which might be stressful and challenging for both people. One common site at the EoL is the nursing home , where the length of stay before death in Sweden decreased by more than 10 times between 2006 and 2012 . Nearly one-third of older people who move into a nursing home die within 6 weeks, and the two main causes of death among older people are circulatory diseases (42.2%) and dementia (22.7%) . Being the next of kin to an older person in a nursing home has been described as inducing a guilty conscience and feelings of insufficiency in the next of kin  as well as a dependence on staff to maintain control over the situation . Support for the next of kin in this situation is one of the cornerstones of palliative care [6, 7]. However, the principles of palliative care are not always practiced as recommended for the care of older persons  which might influence the next of kin’s quality of life (QoL).
The next of kin have been shown to continue their caregiving tasks even if formal care is available . The next of kin describe this as a balancing act, with feelings of wanting to maintain control conflicting with feelings of wanting to relinquish responsibility for the older person’s care . Being the next of kin of an older person at the EoL has been described as being closely involved in the transition from the point when the older person becomes ill until the EoL . This involvement sometimes requires the next of kin to adjust to the older person’s situation, which affects their own life situation and results in social isolation , has an impact on their health and leads to difficulties in managing their ordinary daily lives (such as work) . A Norwegian study of 15 next of kin and 20 older persons in ten nursing homes found that the next of kin had poor knowledge about the EoL . Consistent with this finding, a systematic review of the next of kin in EoL care (EoLC)  showed that being the next of kin at the EoL was a new situation for many people. This situation put them in a vulnerable position. The same study  showed that the next of kin often experienced their situation at the EoL as burdensome and as imposing increased responsibility, which could have negative consequences. Furthermore, the ratings of physical health and QoL have been shown to be lower for the next of kin in palliative care than for those in curative care . The next of kin have also reported low satisfaction with their contact with staff, their influence on care, and meaningful activities for their older relatives . Despite these deficiencies, research concerning intervention to support the QoL among the next of kin of older persons in nursing homes is sparse.
The WHO (2002) defines QoL as individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. In an interview study of Vellone, Piras, Talucci and Cohen , a good QoL for 32 informal caregivers of patients with Alzheimer’s disease involved experiences of serenity, tranquillity, psychological well-being, freedom, good health and a good financial status. Other aspects of importance for an improved QoL of the next of kin were that the patient had good health, that they felt independent from the patient and that they received more help with caregiving (17). Having to make EoL decisions for an older family member could both increase and ease the caregiver burden for the next of kin depending on the expectations of the older person, the family relationship and how much responsibility the next of kin wants to assume .
The Swedish National Board of Health and Welfare  has set the goal to provide everyone who needs it with access to palliative care based on the WHO guidelines for palliative care , regardless of diagnosis, care form, age or location in the country. The palliative care approach aims to improve QoL for persons and their next of kin who face problems associated with the EoL  which includes communication, relationships, and support for next of kin. As part of meeting this goal, the National Board of Health and Welfare (2013) developed a knowledge base for good palliative care . This knowledge base aims to support healthcare providers in developing palliative care and ensuring quality. As previous experience shows that there is a large gap between developing documents and practice, the Implementation of Knowledge-Based Palliative Care in Nursing Homes (KUPA) project was developed and initiated to implement the knowledge base in everyday care. The KUPA project aimed to implement a palliative care approach in nursing homes through educational intervention with staff [22, 23]. Thus, the aim of this study was to explore the experiences of QoL among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care.
The design consisted of an explorative qualitative interview study with the next of kin using qualitative content analysis [24, 25]. The interviews were conducted at baseline before implementation of the principles of palliative care in nursing homes through an educational intervention with staff and front-line managers in the KUPA project, the aim of which was to achieve the best possible palliative care and QoL for the next of kin (16).
Nursing homes in Sweden
Nursing homes in Sweden are tax-funded and are the responsibility of the municipal councils. Every citizen is granted equal access to health care, elder care, and social services based on each person’s need for support. The current Swedish policy for older people is “Aging in place”, which means enabling older people to continue to live in their own homes for as long as possible and providing assistance if they need health care due to illness and multi-morbidity . The needs of older people who receive home care are assessed by social workers in the municipality, and when the need for care becomes too great, they assess and grant the right to an apartment in a nursing home. This normally occurs when a person becomes too sick or frail to manage everyday life at home. In nursing homes, residents have their own apartments, and 24-h care is provided. Nursing home staff consist of assistant nurses (the largest group), registered nurses, occupational therapists, and physiotherapists.
Educational intervention and the KUPA project
A considerable hindrance to providing palliative care in nursing homes is the lack of knowledge and training among staff members regarding the principles of palliative care . The KUPA project aimed at addressing this obstacle through an educational intervention in twenty nursing homes in two counties in southern Sweden. The intervention consisted of five seminars over 6 months for staff and front-line managers in 10 nursing homes, with 10 other nursing homes acting as controls . The evaluation is conducted through a non-randomized experimental design with quantitative and qualitative methods and pre- and post-assessments [22, 28].
Sampling and participants
Characteristics of the participating next of kin (n = 40)
Relation to the older person
The frequency of visits to the older person
Four researchers, all of whom are registered nurses with experience working in nursing homes, conducted the interviews, and all the interviews were performed in a similar manner based on a semi-structured interview guide. The interview began with the following two open-ended questions: “How do you experience your situation of being a next of kin?” and “How would you describe your quality of life in the past week?” Follow-up questions were asked to increase the richness of the next of kin’s answers about their physical health, well-being/mental health, social well-being/social relationships, and satisfaction with their life situation. The number and formulation of the follow-up questions depended on how comprehensive the preliminary answers were. The follow-up questions could be expressed as “Could you tell me more about your. ….?”, “What did you think in that situation?” and “What did you do in that situation?” The interviews were conducted from April 2015 to May 2016 and lasted as long as 77 min (mean = 42 min). All of the interviews were recorded and then transcribed verbatim.
Initially, the first author (HR) listened to all of the recorded interviews, and the transcribed interviews were read through several times to obtain an overall impression of their content in respect of the experienced QoL.
During the second step, meaning units consisting of one or more sentences or paragraphs of a narrative were identified from the transcribed interview text.
In the third step, the meaning units were coded and assigned preliminary denominations, and this coding process consisted of the identification of the manifest and latent content of each meaning unit (text segment). The second and third steps were performed with NVIVO software, QSR International Pty Ltd. 651 Doncaster, Victoria, Australia.
In the fourth step, the co-author (GA) also read the meaning units several times to assign preliminary denominations. The entire body of interview text was used as the reference material. Independent manifest and latent analyses were conducted by the researcher (GA) on the basis of identified similarities and differences between the meaning units.
In the fifth step, both researchers (HR and GA) compared and discussed the analyses they performed separately in the previous steps in a series of meetings. The reviews of the similarities and differences between the codes and the preliminary denominations developed successively to themes and sub-themes.
In the final step, all of the authors reviewed the findings until a consensus was reached and the themes and sub-themes were established. A selection of representative quotations was made to illustrate the findings.
The next of kin described briefly at the beginning of the interview some general aspects of a high QoL in terms of good health and a good financial situation. They looked after their own health through exercise and a proper diet. When they were “in step with life” and were able to “handle all the pieces of the daily life puzzle”, they felt free and were pleased with their homes and their neighbors and close relationships.
Themes and sub-themes of quality of life among the next of kin of older persons who live in nursing homes (n = 40)
Orientation to the new life situation
Sense of relief
Constantly on one’s mind
Couples’ different life situations
Challenges in the relationship
Enabling good relations
Relationship marked by a guilty conscience
The significance of quality of care in the nursing home
Satisfaction and appreciation
Lack of person-centredness
Orientation to the new life situation
Sense of relief
Things were very different before. I can tell you it was hard for me, it really was. But now it’s as if I’ve been set free. I think I’ve got a very good life. It gives me a sense of security knowing that Mum’s being looked after at the nursing home. Knowing that the staff are doing all they can to make things better for her makes things better for me as well, much better. I feel calm, safe and secure. I think my life’s good. (Daughter)
I mean, it’s so lovely now to go and see Dad and just sit and talk, have a cup of coffee or go out together, without feeling that there are a lot of things that need doing. No disrespect to the home help service. (Daughter)
Constantly on one’s mind
When I’m on at point of going somewhere, this weekend, for instance, I always think: Oh, just as long as nothing happens while I’m away. (Daughter)
Even though it’s not up for consideration at the moment, I’ve got a brother at home in case anything should go wrong, but... It’s always on my mind, it’s the way I am. I go to the shops because ‘Mum needs new flowers’ or ‘there’s a summer feast tomorrow, perhaps she should have something nice to wear’. So, she’s never out of my thoughts. (Daughter)
I sit here and doze off in front of the TV, and then, I get angry because he hasn’t woken me up [laughs]. I mean, I think he’s sitting there... (Spouse)
The feeling of being alone was sometimes heightened when there was no other close relative or friend to share the responsibility with. Often, the son or daughter who lived closest to an aging parent had to bear most of the burden. Things became easier, however, after the move to the nursing home, because the next of kin was no longer responsible for the aging parent’s laundry, garden, and home. The tasks that still had to be performed were reviewing the older person’s papers and maintaining the necessary contact with the authorities.
Yes, of course, it’s maybe all right, but I mean, he can’t use the box because it has 20–30 buttons on it. So, he doesn’t get any joy out of the TV any more, and that worries me an awful lot. (Spouse)
The fact that she’s anxious means that I’m more or less assigned the role of the one who gets things done. I try hard not to always take on that role. When I’ve been working all day, after work, I’m a football and indoor bandy trainer for my children. So, in the end, I come home pretty tired. Then, there goes the phone! And it’s my sister who’s worried about something to do with Mum. It’s pretty trying having to go through it all again. So, sometimes, I just don’t answer when she rings. (Daughter)
Couples’ different life situations
You feel it. You sit there and there’s not much going on around you, and you think that now’s your chance. Yes, now’s my chance, and I put all of that out of my mind and find something that’s fun to do. We’ve gone on walks, my sister and I, and it’s great, wonderful, but then, there’s always that awareness that I must go there and see how he’s doing. (Spouse)
The next of kin who were middle-aged spoke of many situations where they felt great responsibility for both of their parents. It might be that one of the parents was in a nursing home while the other parent was dependent on the home help service. This meant that the next of kin had to be in two places, which was burdensome. Their leisure time was marked by a fixed routine with much driving back and forth. The parent who lived at home needed shopping to be done and needed company, and the parent who was in a nursing home would expect regular visits.
Challenges in the relationship
Enabling good relations
You know, it’s about being aware of even the most trivial things that distinguish a human being. It can be whatever shoes are on the person’s feet, for example — this can mean a completely different starting- point for this meeting. It’s about such a little thing as shoes or the colour of a piece of clothing. (Daughter)
Dad’s moved here, from where he grew up, and now, he’s in a nursing home. I’m glad he came here and he’s well looked after, so now I don’t have to go back and forth several times a month to help him with a whole lot of practical things. I’m glad he’s getting help with his practical needs. (Daughter)
So, it just struck me that, no, her brain’s ruined and she doesn’t know any better and that’s the way it is now, and I’ve just got to, well, be a kind daughter to my mother whose brain’s already ruined. I can tell you, I think we’re much, much, much closer to each other now. (Daughter)
Relationship marked by a guilty conscience
It touched me too closely even though I didn’t want it to. That’s the way I felt, and I’d never felt that way before. But it’s been so overwhelming, and then, of course they know anyway. There’s nothing to be ashamed of, but I’ve felt a bit ashamed anyway. I don’t know why… well, yes, because he’s become so ill. (Spouse)
What’s trying isn’t that Mum’s ageing. What’s trying is that she can’t carry on a conversation. Most of the time, when I ask her something, she says ‘Right’. That’s all she can say: ‘Right’. It can sometimes be a bit difficult to ask anything on the weekends when there are so few staff. There should be more staff. (Daughter)
Yes, that’s it. You can sometimes have a guilty conscience because you did not get enough sorted out. Sometimes it’s pretty trying going there because of course she’s old and I’ve heard her stories over and over and over again and, in some way, she’s back in the old days and talks about her dad and all that. (Daughter)
When Dad isn’t all right, I’m not all right either. He’s much better now than he was a month or so ago, so that makes things a bit calmer anyway. At that time, I went to see him every day and you didn’t really know what was going to happen [laughs a little]. (Daughter)
But Mum’s the sort that, when she’s in low spirits, she just wants to go to sleep and not wake up again, and that can be hard to cope with. She’s always been close to my sister, but now they’re not in touch any more. (Daughter)
I go and see my father on Wednesdays and Saturdays, and then, he tells me what he wants me to get for him. Now, he’s started ringing during the night because he can’t see what time it is. He gets very confused, doesn’t know whether it’s morning, noon or night. It’s been like that for 5 years, which is to say, ever since he came here. (Daughter)
Just because she’s old, she can’t behave any way she wants. I don’t think it gives her the right to have outbursts of anger towards family. (Daughter)
Feelings have come to the surface now that have been in existence for a long, long time. Yes, and then I think, well, when he’d turned 60, I say to myself: ‘I’ve got quite enough on my plate with my own children and grandchildren. I can’t use up all my energy on the older generation’. Yes, that’s a bit how it feels. (Daughter)
The significance of the quality of care in a nursing home
Satisfaction and appreciation
Yes, it gives me a sense of security. Because it’s hard enough anyway, being a mother to your own mother. (Daughter)
Lack of person-centredness
It’s so important that they’ve got nice shoes or something. It doesn’t take much to raise a person’s spirits. (Daughter)
Yes, of course, I’ve seen tendencies in the people who come here, who’ve been pretty hale and hearty but become more and more withdrawn, become silent; it’s very hushed all around. I can tell you, though, that the staff are good, so I must say it’s been better here than I’d expected. (Son)
She doesn’t have to take responsibility for anything, so she doesn’t have to take responsibility for going to bed, she doesn’t have to take responsibility for getting up, she can just exist, so to speak… Before, she had to go and cook coffee for herself, and stuff like that. (Daughter)
Well, I mean, I can’t influence everything. I mean, I’m not there. I live a long way away. (Daughter)
Well, we’ve been anxious and worried about her even though she’s been pretty self-sufficient before. Then, suddenly she’s much, much, much weaker, and of course, we’ve had a few things to say before about their not taking into proper consideration how disabled she is by having such poor sight. (Son)
I’ll be coming with her again tomorrow, of course, because she can’t fix this. I know my mum. I was allowed to take her back to the nursing home, but then she just lay there. That’s how it was, and she just got worse and worse; so yesterday, we had to go to the Emergency again. (Daughter)
I know she’s old and ill in every way, but she still has a right to receive proper care at the end. (Son)
The study explores QoL among the next of kin of older persons in nursing homes before the implementation of knowledge-based palliative care. The main finding when it comes to experienced QoL shows positive and negative feelings with regard to being the next of kin of an older person. The next of kin experienced a transition due to the new life situation caused by the older person’s health condition and care in a nursing home and the related changes for themselves. Despite the next of kin’s rich narrations concerning the care for their frail older family member, they did not use the term palliative care in their narrations, and very few of them used the words dying or death. Their QoL was also related to the previous and current relationship with the older person living in the nursing home and the quality of the care that was offered there.
Our findings illustrate several aspects of the orientation to the new life situation that could either increase or decrease the next of kin’s QoL. The next of kin experienced a feeling of relief when the older person went into a nursing home and had a sense of security in knowing that there were staff available 24 h a day. At the same time, however they found it difficult to stop thinking about their loved-one’s dependency on the staff in respect of the quality of care, which induced anxiety. The experiences and efforts to cope with the new situation observed in this study have been described before in studies on the transition into a nursing home. When the older person’s increased need for care has led to care at a nursing home, this event can be perceived as a crisis process for family members, with a turning point, a coping phase, and an outcome of the crisis process  The situation is ameliorated if the next of kin are regarded as partners in care and if regular meetings with staff are offered . A Norwegian study  found that the next of kin’s attempts to cope with this new situation often considered previous experiences and were characterized by uncertainty, expectations, and mixed feelings of relief and concerns about the quality of care. The participants also stated that they still felt responsible and continued to perform the caring tasks that they had performed when the older person lived at home. A Swedish study of the next of kin of older persons who have died at a nursing home  describes that the nursing home placement meant that the next of kin were no longer the main guardian, which resulted in security and less worry for them.
Another aspect of the adaptation to the new life situation in this study was that the next of kin felt alone, which was evident in spouses who had previously lived with the older person. The feelings of being alone were heightened when there were no other next of kin or if there were other next of kin but they did not share the responsibility. Loneliness is a common problem among older persons . In a Swedish study  of 4278 persons aged 75 years, loneliness was the most important factor that predicted a low QoL among both non-caregivers and older people in general. This fact implies that staff need to pay special attention to older next of kin who have previously resided with the older person when that person moves to a nursing home. Healthcare professionals need to understand that next of kin who experience loneliness are at a greater risk of developing both physical and psychological ill health and that it may adversely affect their QoL [30, 32, 33, 34].
The findings relevant to the theme “challenges in the relationship” in this study illustrate that the quality of the relationship in the past affected the possibility of creating a good relationship in the present. Changes in the older person’s health status could also change the prerequisites for continuing a relationship with the older person as before. The progression of a diagnosis, such as dementia, could jeopardize a relationship due to the difficulty of communicating with one another about important things such as the older person’s wellbeing, needs and wishes, as seen in our study. The next of kin attempt to continue the relationship with their nursing home resident because of its importance and for the purpose of “making it better” [31, 32]. According to Garity  other forms of interaction could be useful in these situations to maintain the relationship in some way, such as singing together. The study of Strang et al.  describes that being the only relative who is recognized by the older person as the next of kin could increase the pressure to visit the nursing home, which could affect the relationship in a negative way.
The next of kin in our study described having a guilty conscience, which is corroborated by Graneheim, Johansson and Lindgren  as feelings of guilt and shame for no longer being able to be the informal caregiver at home. The authors relate these feelings about the decisions that must be made to change the care venue of the older person to feelings regarding the change in the next of kin’s own role as informal caregiver. The consequences of the decision were described as a process for both the next of kin and the older person. Graneheim et al.  claimed that if the next of kin were involved in care and became partners with the staff, then this would have a positive effect on the next of kin’s QoL.
The next of kin encountered vulnerability in terms of the older person’s impaired health as painful and frustrating, which increased their worry and need to monitor the care because they wished for their family member to receive dignified care. The staff’s availability and good communication with the next of kin were important. The next of kin feared neglect of the resident’s needs when they left the nursing home and did not know what was expected from them as family members; thus, making decisions was not easy. In a review study by Fosse, Schaufel, Ruths and Malterud , similar experiences were described: the next of kin felt relieved when the staff recognized the older person’s needs and offered the necessary help. Grøn  indicates that an older person’s vulnerability is complex to understand. How this vulnerability is interpreted and perceived depends on the perceptions of the older person, the next of kin and the staff. One can be regarded as a vulnerable person by other people (from an outside perspective) but not feel vulnerable oneself, despite severe illness and old age. Other studies confirm that the concept of vulnerability is not well defined and understood but that staff should be given knowledge regarding how to offer more holistic care and, in this way, prevent vulnerability in care [39, 40].
In our results, it was difficult for the next of kin to deal with the older person’s declining health status. Hvalvik and Reierson  also described that the next of kin can experience difficulty accepting such changes, and it is important that these feelings are taken seriously by the staff. Feelings of uncertainty and insecurity could cause emotional stress and frustration together with feelings of an overall responsibility for care. Being ready to act could be interpreted as balancing vulnerability while simultaneously managing challenges that make the next of kin feel strong and proud . From an ethical perspective, Morberg and Jämterud  argue that care can be dignified by sharing human vulnerability through presence, responsibility and answerability.
In addition, the QoL of the next of kin was directly dependent on the quality of care that they perceived the older person was offered. Other studies have confirmed the relation between the QoL of the patient and that of the next of kin [43, 44], noting that the quality of care, with a good relationship among the staff, next of kin and the ill person, was important . In our study, it was expressed that when everything worked well, it gave the next of kin a sense of security; however, when the care was not provided as expected, it resulted in anxiety. This was evident when the care did not originate from person-centred care and the life story of the older person. Lavoie, Blondeau and Martineau  found that a changed focus from tasks that need to be performed in care to more person-centred care shifted the priority to the choices, desires and needs of the ill person. Person-centred care even affects the relationship and communication between the staff and the next of kin in a positive way. Similar to the findings in our study, the next of kin of nursing home residents in the UK  reported that “the little things” were important for the quality of care and that if they were neglected, it was a source of distress. The next of kin in our study expressed that they wanted to participate in the care, but it was difficult to find a balance where the staff did not see them as demanding. Other studies that describe the next of kin’s situation in nursing homes and in EoL care [6, 10, 46] have shown that the next of kin need to supervise the care to ensure that it is correctly performed. However, it can be difficult for the next of kin to maintain control, especially if they do not share suggestions about care because of fear that their supervision could upset staff . In our study, visiting the nursing home enabled the next of kin to monitor the care and support residents in circumstances that threatened their dignity.
The interviews with 40 next of kin who live in two separate counties (20 from each county) were conducted before the implementation of knowledge-based palliative care  and contribute to knowledge about the next of kin’s experience of the QoL at baseline. The participants in this study were chosen to explore a diversity of experiences, which increases the credibility of our results [48, 49]. Interviews were conducted with next of kin from both large and small nursing homes situated in both urban and rural areas. Therefore, the results are transferable to a broad population.
The interviews were conducted by four different researchers, which may have had a negative effect on the credibility of the findings. However, the researchers used the same interview guide and had regular meetings with the experienced project manager (GA) for one to 2 h each week to discuss different aspects of the data collection, including the interview process. Furthermore, the interviewers were all nurses with considerable experience in elder care. The two researchers who conducted the analysis did not perform the interviews, which could be seen as both a strength and a weakness of the study. They interpreted the text independently of one another and had several meetings together, i.e., investigator triangulation. After the preliminary analysis, two of the researchers who conducted the interviews confirmed the analysis. The analytical process was carefully described to enable the reader to follow the researchers’ interpretations, which strengthens the credibility of the study. Another method that increased the credibility was the use of quotations. The quotations were selected from a variety of next of kin with different relationships to the older per.
The study explores QoL among the next of kin of older persons in nursing homes before the implementation of knowledge-based palliative care. The findings show that the nursing home can be perceived as an enabling context for good relations. Commonly, the QoL experiences consisted of feelings of burden due to the quality of the relationship with the older person and concern about the older person’s deteriorating health and low quality of care. The next of kin were aware of the older person’s worsening health condition but did not use words such as palliative care or dying. These findings indicate the importance of increased knowledge of and training in palliative care in nursing homes to better satisfy the next of kin’s needs.
The authors thank the study participants who made this study possible. We also thank Anne Molina Tall and Helene Åvik Persson for their valuable contributions in conducting the interviews.
HR conducted the analysis, drafted parts of the article and contributed to the design of the study. The project leader, GA, conducted the analysis, drafted parts of the article, was the recipient (PI) of national research grants, applied for ethical permission, and contributed to the design of the study. BW and LB conducted interviews with the next of kin, validated the results of the analysis and wrote parts of the article. All of the authors read, discussed and approved the final manuscript.
This work was supported by the Swedish Research Council, grant number 2014–2759; the Vårdal Foundation, grant number 2014–0071; and the Faculty of Medicine at Lund University. The financiers were neither involved in the study design, data collection, analysis, interpretation of data, nor in writing the manuscript.
Ethics approval and consent to participate
This study is part of the KUPA project approved by the Regional Ethics Review Board in Lund, Sweden (no 2015/69), with trial registration NCT02708498. The research project is guided by the ethical principles for medical research outlined in the Declaration of Helsinki. The closest relatives were informed of the study and asked if they were interested in participating. If they wanted to participate, the names and contact details of the researchers and oral information about the study were given, and the relatives were asked again if they were willing to participate. Before the interview, additional oral and written information about the study was given, about the next of kin’s right to withdraw from the study at any time without suffering any consequences, and written informed consent was signed by each participant. The participants’ confidentiality was respected when reporting the findings, which was done at a group level.
Consent for publication
We confirm that we have obtained consent to publish from the participants through the written and oral informed consent.
The authors declare that they have no competing interests.
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