Struggling for a dignifying care: experiences of being next of kin to patients in home health care

Background: Home healthcare services are becoming more complex as a result of changing demographics in society and patients having multiple health problems requiring advanced nursing care. Next of kin often experience that they put their own life on hold, and may feel that they stand alone when life takes an unexpected turn. Aim: The aim of this study was to explore next of kin's views of dignity in home healthcare services. Methods: This study has a qualitative approach and content analysis was applied. The purposeful sample consisted of next of kin to patients who received services from home healthcare or in nursing homes (n = 11). One focus group was conducted in 2016. Results: Five themes emerged from the data analysis concerning struggling for a dignifying care in home healthcare services: Indignity implies double vulnerability, desire for respect and recognition, experiencing responsibility for a dignifying life, undignifying care due to lack of competence, and the home as a common sanctuary is gradually lost. Conclusions: This study highlights the importance of ensuring dignity in care for patients living at home. Next of kin should be seen as a partner with the need for recognition and support. Maintaining human dignity for loved ones requires competence, respect and recognition.

Keywords: dignity; ethics; home care; informal caregiver; next of kin; qualitative analysis

In Norway as well as in many Western countries, the care for the elderly is gradually shifted from hospital‐based care to home care [1]. Home healthcare services are becoming more complex as a result of changing demographics in society and patients having multiple health problems requiring advanced nursing care [2]. The idea behind implementing different municipal care reforms in Scandinavia and Europe has been to enable vulnerable people staying in their own homes as long as possible thereby preventing long stay institutionalisation [3].

Hilli ([4]: 188) asserts that the image of home can symbolically be interpreted as ethos meaning 'a human being's innermost room', 'human beings' manner of being' and with the metaphor 'my home is my castle'. A dignifying care implies responding to the patients' and the next of kins' needs and requests. Tactfulness as a dimension of dignity helps nurses to maintain distance and avoid undignified care. Relational skills are necessary to perform dignifying care and for the next of kin to have confidence in the healthcare personnel [5].

Previous studies have shown that chronic diseases and long‐term illness affect the whole family [[6]]. Organisational changes in municipal health services have placed more of the care responsibility on the patients' next of kin [[11]]. A recent government White Paper emphasises the need to protect the rights of these informal caregivers [15] as they will play an increasingly important role in the healthcare services. Next of kin should be able to use their resources and take responsibility for the patient without causing the former's health to deteriorate [6]. The next of kin may be concerned whether their loved ones receive dignifying care. Concerns arise about whether ill family members are respected and acknowledged as human beings [16]. Dignity is concerned with how people feel, think and behave in relation to the worth or value of themselves and others. To treat someone with dignity is to treat them as being worthy, in a way that is respectful of them as valued individuals [16]. To be treated with respect invokes confidence between the patient and the caregiver. Edlund [17] describes dignity as two‐dimensional – both as absolute and relative. Absolute dignity encompasses holiness, human value and duty while the source of values inherent in relative dignity is influenced by culture and these values are hierarchical. According to Gallagher et al. [18], government investment and professional will is required in order to commend and reward practices promoting dignity as these actions are central when facing undignifying elderly care and abuse of the elderly [[19]].

Next of kin often experience that they put their own life on hold, and may feel that they stand alone when life takes an unexpected turn. They also feel responsible for the patients' well‐being [21]. If existential needs are neglected or overlooked, this may be experienced as an existential pain, a physical and spiritual suffering for the next of kin [22]. According to Gallagher [23], there are two key professional values of dignity: self‐respect and respect for the dignity of others. When there is a match between circumstances and competence, dignity is the outcome. The nurses should be compassionate, listen carefully, act for improvement when necessary and respond sensitively. Compassion is an ethical foundation of high quality of care. According to Zamanzadeh et al. [24], compassionate nursing is a main priority for nurses. Next of kin often face the dilemma of needing to express their feelings to the healthcare professionals, but are afraid of rejection from those who might be tired of hearing about their problems [25]. As recognition is linked to acknowledgement and acceptance, an equal relationship can be realised by recognising the other as a subject with resources and limitations, rights and obligations [26]. Eriksson described caring ethics in terms of love and mercy, caring relationship, human dignity and respect, which accordingly affect human beings' decisions and choices in a specific manner [27]. Enabling collaborative research that encourages discussion within and between staff and resident/relative groups can maximise the sense of dignity among all participants that promotes an environment for dignified care [28]. The aim of this study was to explore next of kin's views on dignity in home healthcare services. The research question was: 'How do next of kin describe dignifying/undignifying care in home healthcare services'?

The study had a qualitative research design in order to get deeper knowledge and describe qualities of the phenomena [29]. One focus group interview was conducted with 11 (n = 11) next of kins. Focus groups are appropriate when the informants have common, but also different experiences of the phenomena under study. The group dynamics opened up for deeper insight of the concept of dignity in home healthcare [30]. Data were analysed using the interpretative content analysis based on Graneheim and Lundman [31].

This study was conducted in one municipality on the western coast of Norway with <12 000 inhabitants. The purposeful sample consisted of next of kin to patients who received services from home healthcare or in nursing homes (n = 11). Managers in the services were helpful in recruiting participants and informed potential participants about the study, and contacted a random sample by e‐mail or phone. The researchers contacted the next of kin who agreed to join the study, and sent them further information including an information letter and a consent form. To be included in the study, the next of kin had to be involved with patients who had received services for more than three months, to better understand how it is experienced to receive home healthcare for a longer period. The mean age of the next of kin was 64, 4 years (range 54–80 years old). Of the participants, nine were women and two were men. One of the participants chose to withdraw from the study (See Table ).

Description of the next of kin, age and gender and placement of the patients in the study

An interview guide was developed based on the authors' clinical experience and from previous research on next of kin in municipal healthcare [[6]]. The interview questions were based on the central aim of the study. The focus group interview was conducted in September 2016 in a meeting room at the University in order to ensure the integrity and safety of the next of kins. The first author acted as the moderator during the session, and the co‐moderators ensured that the phenomena under study were described from different perspectives. Information letters about the study, including an invitation to participate, were sent by post to next of kin that met the inclusion criteria. The overall themes of the interview were adequate and competent care in home health care, the main challenges for next of kin in relation to home health care and information flow and cooperation in home health care. The overall structure of the interview made it possible to ask additional, more specific questions and to seek more nuanced answers. The questions were designed with the intent to enable the participants to freely express their experiences [[29]]. Due to the participant‐defined nature of group interaction, the focus group setting is less controlled than individual interviews. Focus group discussions can mobilise associations and the group dynamics help to create stories [[31]]. Creating a trusting atmosphere was important when interviewing the next of kin. Researchers led the interview and took care not to influence the answers, thus, the participants could speak freely from their own perspective [32]. The duration of the interview was about 90–100 minutes.

Four researchers examined the data and inductively identified codes, categories and overall themes. The research question and each researcher's prior understanding guided this analysis procedure. Qualitative content analysis outlined by Graneheim and Lundman [31] and supplemented by Malterud [33] Elo and Kyngäs [34] was applied. The purpose of the analysis was to describe the phenomena under study. The unit of analysis was the interview text about the experiences of dignity among next of kin to patients in home healthcare. The interview was tape‐recorded, and the moderator transcribed the interview verbatim. The analysis began already in the transcription phase [[29], [33]]. The analysis was then implemented in the following phases: (1) the interviews were first reviewed several times to obtain a sense of the whole in relation to the research question. (2) After this, the text was divided into meaning units based on the manifest content of the descriptions of the phenomenon; words, sentences or paragraphs with a specific content related to the purpose of the study. (3) These meaning units were condensed as a process to shorten the text while still preserving the core; (4) the condensed meaning units were then abstracted and labelled with a code. When condensing and labelling meaning units with codes, considering the context as a whole was a vital component in the process; (5) the text was reviewed again and the codes were compared to find differences and similarities and sorted into categories [[29], [33]]. All the researchers met on multiple occasions and critically reflected on the different interpretations but also on the analysis process as a whole. The researchers presented the preliminary findings in a seminar arranged by the municipality for next of kin to patients receiving home healthcare services. Prior to this, the preliminary findings were presented in a common seminar to the participants in the study as well as to the managers in the municipality.

The next of kins were informed that participation in the study was voluntary, and that they would be able to withdraw at any time from the interview or refuse to participate. Furthermore, the participants were guaranteed that the information provided would be confidential in each phase of the study process and that their anonymity would be guaranteed. All the participants gave written informed consent as research on vulnerable topics might evoke strong emotions among next of kin. The participants were aware of the fact that it was possible to contact the researchers afterwards concerning issues that they might wish to discuss further. One of the participants contacted the researchers and wanted to further deepen one of the issues that arose during the interview. The Norwegian Centre for Research Data approved the study (Ref. 47191). Storage of data and completion of the study were done in accordance with ethical guidelines and according to the Helsinki Declaration [35].

The results are based on the experiences described by the next of kin. Five themes emerged from the data analysis concerning struggling for a dignifying care in home healthcare services: (1) Indignity implies double vulnerability, (2) desire for respect and recognition, (3) experiencing responsibility for a dignifying life, (4) undignifying care due to lack of competence, and (5) the home as a common sanctuary is gradually lost.

The next of kin described different dimensions of dignity and the stories were told in different ways emphasising particular care situations. The patients with comprehensive and complex needs were offered fixed short‐term stays at an institution. Some of the next of kin expressed that the personnel at the institutions were unaware of the needs and desires of their loved ones. The next of kin to patients with large and complex needs had often experienced the most challenging situations. In these cases, a stay at an institution made matters even worse.Can you imagine a young girl sitting with a 90‐year old woman? ‐ My wife became asocial. (Husband).

If the patient has no ability to change his/her clothes or is not served food served in an edible way, this is experienced as undignifying care and implies a double burden for the next of kin. They feel guilty because they cannot help their loved ones, and they feel disappointed and hurt when healthcare professionals do not express any empathy or assistance. Some next of kin may visit their loved ones on a daily basis to ensure that they receive the care they need. Although the next of kin understand that the staff is occupied, they feel sad when the caregivers always complain about lack of time. Mentioning the lack of time also leads to a sense of concern, and the next of kin rarely raise the question of undignifying care with the staff.I lost my husband many years ago, so I'm done with that process, but at the same time I have to make sure he has a decent life (Wife).

The findings show that next of kin play an important role in ensuring that these patients receive dignifying care.

It is of great importance for the next of kin that patients are recognised as individuals, despite their illness and disability. The patients' life is changed as they might need permanent care and the next of kin may experience the loss of an equal partner. The next of kin are willing to contribute to help with practical tasks and care for their loved ones, but they do not want to be taken for granted. Some of the participants felt they were expected to train staff who lacked experience.When there are people who haven't put their foot inside our door before, then I don't feel like training them, so I rather do the job myself (Wife).

The next of kin want to be understood and taken seriously. Particularly the next of kin who still are professionally active revealed that they many times feel exhausted and may lose their patience, for example when healthcare professionals didn't hang the used towel back in the bathroom. Afterwards the next of kin felt guilty and worried whether the staff had spoken negatively about her behaviour finding her demanding and difficult to cooperate with.When the ball starts rolling, you can lash out at the wrong person, then you come to terms with your frustration and grief. I miss someone I can turn to, as a relative you are very sensitive (Wife).

The next of kin want to gain recognition for their efforts for their loved ones, and they have a desire to be understood. Nevertheless, they find that there is no room for discussion, and they do not discuss their feelings and desires with the healthcare professionals.

The next of kin found that they had great responsibility for the patient's life. Due to illness or injury, the patient had lost the overview of different medicines, medical examinations and physio appointments, as well as the overall capacity to handle their life. The patient relied on the help and support of others, and felt safe when next of kin helped them in their daily life. On the other hand, the next of kin want healthcare professionals to take greater responsibility for the care.They owe it to my wife – to try to understand her situation. If it's complex, use the time it takes! (Husband).

Healthcare professionals are experienced as more or less responsible, and some tend to run away from the responsibility.My wife had strong phantom pain, she was shouting. I asked the nurse for painkillers. Then the nurse said ‐ but now its lunchtime (...). She (the nurse) did not seem to care (Husband).

Varying degrees of commitment from healthcare professionals causes lack of trust in the home healthcare services, especially when different services are interacting such as the physiotherapy, transportation and the home healthcare. If the next of kin is not at home, the patient has to wait sitting outside in a wheelchair waiting for the door to be opened. Such undignifying situations are experienced as an existential pain for the next of kin. To ensure that this does not happen, next of kin try to take responsibility and control, even of parts of these services are expected to be seamless.One of the daily problems is that I must either control it myself, or be 100% sure that the logistics work (Wife).

Next of kin were often dissatisfied with the continuity in the services, and wished it would be better organised. The lack of necessary competence to care for the patient causes insecurity, and not knowing who is on duty or what competence they have, causes a great insecurity for the next of kin especially during holidays. A daughter emphasised that she was shocked when her mother had been given sleep medication in the afternoon. She was so tired and exhausted at the time that she had no strength to go further with this.There were several episodes when home nursing was involved. Especially during holidays and Christmas, there was not a single employee who was competent to administer medication to my mother in‐law. We often had to vacate the planned holiday (Daughter in‐law).

The next of kin to patients with fewer diagnoses and healthcare problems seemed to be more satisfied with the care. They feel both safe and are satisfied with the services and claiming that they are fortunate, compared to the relatives of other patients with more demanding and complex needs. Next of kin require competent and committed healthcare professionals to rely on them. This kind of healthcare professionals, who do their outmost and the little extra, and who know the small things that are important for the patients' well‐being, are highly appreciated. On the other hand, when they meet healthcare professionals who are less committed and less competent, the next of kin are not sure if their loved ones receive sufficient care. Furthermore, not knowing who is on duty on the next shift, forces the next of kin to stay home after working hours to make sure their loved ones receive sufficient and dignified care."To leave a patient with swallowing problems for 20 minutes alone with his lunch. He might be dead after 20 minutes" (Wife).

Nevertheless, there are positive experiences that indicate confidence and security with the services. Next of kin state that there are many competent nurses who make them feel safe. The main issues are a lack of continuity and a lack of a minimum standard of competence. Although these issues are emphasised and discussed by the next of kin they are not taken seriously by the staff. There may be different reasons to this; next of kin may not know who is responsible or whom to contact. One wife wanted to report a mistake that was made with her husband's medication. She first called the nurse who was responsible for dosing the medicines that day, and was referred to the manager for home healthcare. When she called the manager, she was referred to the nurse responsible for the medicines. This continued and finally she got the impression like nobody was responsible for her husband's medication.So, you went another round, and no one was responsible for this particular thing. I′ll never forget it, it was so frustrating (Wife).

Based on such experiences, the next of kin describe responsibility in the home nursing as diffuse and find it difficult to report undignifying care.

Next of kin also expressed gratitude for the help they received at home. However, the numerous healthcare professionals are described like an invasion of the patients' home and their privacy. Next of kin are surprised when healthcare professionals walk into their living room without ringing the doorbell. They perceived this as showing a lack of respect, but accepted it because they know that living at home is valuable for their loved ones.It is his home. However, at the same time it is my home, so the bathroom is mine. Then I have to plan my day, what time do I take a shower? Do I have time to go in the shower now? (Wife).It is stressful to have people in the house all the time, but I accept it because I know she is happy at home (Husband).

Others find it challenging when the children come home for holidays.I have a small problem when our children come home. They do not want home health care personnel inside the house. Occasionally there will be very heavy periods in summer and so on. It is because they (the children) want to relax at home, and they want to go down for breakfast in the morning in their underwear (Wife).

The children want their home to be a private area and therefore some of the participants in this study took full responsibility caring for the patients during the holidays in order to protect their privacy.

The aim of this study was to describe next of kin's experiences of dignity in home healthcare services. Next of kin to patients of public healthcare services can feel both sad and vulnerable when they perceive that the circumstances of the patient, as well as their own circumstances, are not understood. They want to contribute with their resources, but need support from competent healthcare personnel who can take the professional responsibility. Official guidelines for next of kin [15] state explicitly that healthcare personnel are also required to actively engage with, and be attentive to the needs of the next of kin. Dignifying care for next of kin requires competent healthcare professionals with relational skills. According to Gallagher [23], the nurses should be compassionate, listen carefully, act for improvement when necessary and respond sensitively. Next of kin want their loved ones to be seen as vulnerable human beings. Situations that indicate patients' helplessness were experienced as loss of dignity. These are, e.g., sitting with one's food in front of one without being able to eat it, and show that healthcare personnel do not respond sensitively to the situation [23] and were experienced as humiliating and unworthy. It is also a reminder to the patients of their helplessness and vulnerability. When the next of kins learn about the undignified care situations, they feel their own grief and helplessness, in addition to the patient's grief. If the patient is put in an unworthy situation, next of kins are disappointed because healthcare professionals do not show understanding and compassion for the patient. Rehnsfeldt [22] describes this as an existential pain. In addition, next of kin feel guilty because they are unable to care for the patient themselves. This is a double burden for the next of kin. Troubled by this double burden, many next of kin go too far to ensure that the patient is given a worthy life. Our study finds that next of kin takes a great deal of responsibility for the patient, but they will not take responsibility for the care. This is in line with Sims‐Gould and Martin‐Matthews [36] and Carlsen [37]; next of kin don't like the idea of sharing the care if they experience that they are working to offset deficiencies within the system. Dignity means being treated with respect and as a valuable individual [[16]]. Undignified care is particularly evident in situations where healthcare personnel do not have sufficient competence. Holmgren et al. [38] maintain that patients are disappointed when they receive less help than agreed on, or when healthcare professionals do not have the necessary competence. Our study shows that the next of kin takes over the tasks that healthcare professionals have not performed sufficiently well. These are tasks that the next of kin choose to perform, without discussing it with the healthcare professionals. This extra work results in fatigue and even if they wish to be recognised for the work they do and not taken for granted, they do not address the issues with the staff [[24]]. This is not expressed until they have stretched themselves too far and are both tired and frustrated as they perceive that the healthcare professionals do not fulfil their part of the agreement. In such situations, the next of kin may lose their temper and express anger and frustration to the caregiver who is present and may not be responsible for the situation the patient and relatives find themselves in. Afterwards, the next of kin may suffer from a guilty conscience and is concerned that this expressed dissatisfaction may affect the care given to the patient [25]. This is in line with Carlsen and Lundberg [37], who concluded in their study that the relatives experienced their role both as a duty and as a strain. In addition to the tiring work the next of kin perform and the anxiety they experience, they also miss their home being a haven [4]. Even if they need leisure and time to relax and to gather strength, they feel that they must stay close to the patient and be ready to receive healthcare professionals who come to help. When unfamiliar caregivers are supposed to come, the next of kin are concerned about whether the caregiver arrived at the right time and if it the caregiver was sufficiently competent [14]. Then the next of kin then are at risk of losing their sense of safety, independence and freedom to have their own routines [1].

Hilli [4] indicates that a person's home can be seen as their innermost space, as a haven where one can be oneself. This can explain why the next of kin, to patients with large and complex needs, claim that they cannot manage without regular carers breaks. Only when the patient is away and the next of kin are free of the daily visits of healthcare professionals, does their home become their sanctuary again. When the next of kin then experience that the respite care does not meet their expectations and the patient is anxious about it, the leisure break is not optimal either. Official guidelines for the next of kin [15] emphasise that next of kin are entitled to carers breaks but there is no requirement for the contents of this type of respite care. Our findings indicate that there are no great changes needed to enable this. First, the next of kins must be given the possibility to express their wishes and needs. Second, healthcare professionals must learn what is important to the individual and take this seriously. Third, the role and expectations of the next of kin must also be clarified. As the shift from hospital‐based care to home‐based care leads to vulnerable patients living in their own home for as long as possible, this requires effort and good cooperation between all the parties concerned; the healthcare personnel, the patient and the next of kin. Next of kin experience that their loved ones do not receive dignified care, respect and recognition as human beings [15]. This requires healthcare professionals to be sensitive in meeting the next of kins. It is crucial that healthcare professionals know what alleviates the burden for the next of kin and what adds to it, and then act accordingly for a dignified life situation.

Trustworthiness is important throughout the entire research process, and it means asking how valid the knowledge is and whether it offers new knowledge about the phenomenon under study. The limited number of participants (n = 11) representing a small community in Western Norway might have limited the range of experiences described in this article. All the researchers were involved in analysing the material. Discussion and reflection in the research group is important in increasing the trustworthiness of the study. Data collection and analysis were conducted during a 5‐month period. By knowing the care environment, the researchers could better understand the participants and describe their experiences. In order to ensure the themes, the focus group interviews responded to the research question and the aim of the study. The researchers presented the preliminary findings in a seminar arranged by the municipality for next of kin to patients receiving home healthcare services. Prior to this, the preliminary findings were presented in a common seminar to the participants in the study as well as to the managers in the municipality. Additionally, one of the members of the research group was working in the municipality and was able to critically discuss and examine the main results.

Next of kins experience their situation as complex and charged with a great deal of responsibility. According to the next of kin, the competence of the healthcare professionals varies substantially, and they feel heavily dependent on the more qualified healthcare professionals. Many find the patients' needs neglected and perceive the care as undignified. Further studies are important in order to develop and implement a caring model that encompasses person‐centred care in order to enhance dignity in home healthcare. Here, the next of kins are a valuable resource and should be involved in an earlier stage.

The authors want to thank all the next of kins for their valuable contributions as well as the nursing home administrators who welcomed us to conduct the study at their institution.

The authors declare that there is no conflict of interest.

Bente Egge Søvde, Gro Hovland and Maj‐Britt Råholm performed the study design; Bente Egge Søvde, Gro Hovland and Berit Ullebust performed the data collection; Bente Egge Søvde, Gro Hovland, Maj‐Britt Råholm and Berit Ullebust analysed the data; Bente Egge Søvde, Gro Hovland and Maj‐BrittRåholm drafted the manuscript.All authors have approved the final version and accepted the submission.

The Norwegian Centre for Research Data approved the study (Ref. 47191).

This research was funded by the Western Norway University of Applied Sciences.