Next of kin’s quality of life before and after implementation of a knowledge-based palliative care intervention in nursing homes

The palliative care approach emphasises person- and family-centred care and focuses on the person and his/her family, not just the disease [1]. A main outcome for palliative care is to promote quality of life (QoL), not merely for those persons suffering from life-threatening conditions but also for their next of kin [2]. To promote QoL at the end-of-life, palliative care has a holistic approach consisting of physical, psychosocial and spiritual dimensions [1]. Palliative care should include all persons with life-threatening illnesses, irrespective of age, diagnosis and context of care. Although it is the frailest and oldest persons who live in nursing homes, older persons in nursing homes and their next of kin have received far less palliative care than younger people [1‐3].

The next of kin have unique knowledge of the older person, and it is therefore important for staff to actively communicate with next of kin and incorporate them into the care for the proper planning of the person’s remaining life [2, 4]. There is a prerequisite for staff to be able to adapt information and support for the family based on changing needs during the older persons’ disease trajectory [2]. Wallerstedt et al. [5] found that next of kin expect staffs to recognise not only the next of kins’ importance for the older person’s well-being but also their needs for information and guidance. However, previous results have found that end-of-life discussions are rarely performed with the next of kin [6] and that next of kin are initially included in the care in the very late phase [7]. When the palliative approach is lacking, the next of kin are excluded from information and decision making concerning their relatives’ care, which could increase frustration, anxiety and worrying [5] and thereby have a negative impact of their QoL.

Next of kin to an older person in a nursing home can experience conflicting or mixed feelings, such as guilt, relief and remorse, between their own needs and their sense of responsibility for the older person’s well-being and care [8, 9]. Another dilemma could be balancing between taking part in the care, while at the same time, leaving the responsibility of the care to the staff [5]. Such feelings and distress could decrease the QoL in next of kin, and these feelings and distress need to be considered and reduced by the staff.

For staff to be able to support and promote QoL in the next of kin to older persons in nursing homes, the staff need to adapt palliative care efforts to the specific and complex needs of the families [1]. However, it seems that staff in nursing homes do not have sufficient knowledge, skills and training in managing symptoms and other aspects of palliative care [10, 11] and that staff in nursing homes have requested more education and knowledge in palliative care [12, 13] as well as training in how to meet the emotional and existential needs of the next of kin [7]. Therefore, the KUPA project (an acronym for the Swedish title: KUnskapsbaserad PAlliativ vård, which in English is “Knowledge-based Palliative Care”] implemented an educational palliative care intervention directed to staff and managers in 20 nursing homes in Sweden. One of the main outcomes was to evaluate whether the intervention had any influence on QoL in next of kin for older persons in nursing homes [14].

The purpose of this study was to evaluate whether an educational palliative care intervention improved the quality of life of next of kin to older persons in nursing homes.

There was a statistically significant increase in the mean score (+ 0.26) on the subscale Physical health in the implementation group, but not in the control group, when the data after the intervention period were compared with the baseline data within the respective groups. In contrast, General health declined (mean score changes of − 0.15) in the control group but not in the implementation group (Table 2).

In addition, statistically significant changes were found at the item level. First, in the intervention group, an increase (mean score changes of + 0.25) in the item able to perform activities of daily living in the Physical health subscale was found. Second, in the control group, the score of the item energy and fatigue decreased (mean score changes of − 0.13) in the Physical health subscale. This decrease was not found in the intervention group (Table 2).

This study found very small statistical changes regarding next of kins’ QoL on two subscales related to health after an attempt to implement a palliative care intervention in nursing home settings in Sweden. In addition, at the item level, a small significant increase in the item able to perform activities of daily living was obtained in the intervention group, and a decrease in general health as well as on the item energy and fatigue was obtained in the control group. Pessimism towards negative results or non-significant results is seldom discussed among researchers, and negative results remain a low priority for publication, as the current scientific culture clearly favours positive results. However, including and reporting non-significant and/or negative results may improve scientific thinking, improve future studies and be necessary for a more complete scientific understanding [24].

This study is one of few published evaluations that presents the effects of implementing palliative care in a nursing home setting. A review of the literature [25] found only three studies, and only one study reported outcomes regarding the next of kin. That study [26], performed in the USA, concluded that implementation of palliative care had the potential to increase next of kins’ perceptions of the quality of care. This is in line with our assumption when designing this study, which was that it is reasonable to believe that the implementation of a palliative care approach, emphasising person- and family-centred care, would affect not only the staff and the resident but also the next of kin. Palliative care aims at involving and supporting the next of kin in the care process [1], and the fact that next of kin of residents at nursing homes want to be involved in the end-of-life care at the nursing home had been shown in several studies [27‐29]. However, conversations and guidance from the staff are often lacking [28, 29]. The modest result of this study thus provokes questions about the effectiveness of the implementation as well as methodological issues, which is discussed below.

The effect of the implementation is dependent on several factors, such as (1) the effectiveness of the implementation strategies, (2) the characteristics of the implementation object, (3) the characteristics of the implementers, (4) the target population and (5) the context of the implementation [30, 31]. The effectiveness of the implementation strategy (factor 1) in terms of an educational intervention with only one meeting about next of kin is in need of consideration. That meeting aimed to increase knowledge and understanding of the situation and role of the next of kin and to consider how their need for support can be better met. The task after the meeting was to talk to one next of kin about their preferences for involvement and support. This meeting that lasted for 1.5 h, along with the knowledge that a palliative care approach in itself means family-centred care [1], was evidently not enough. One proposal for the future is to include next of kin in the intervention group as participants at the meeting about next of kin. Another suggestion is to include more meetings about the theme next of kin. Both approaches would bring a stronger focus on the family-centred care aspect of the intervention into the education component, which this study indicates the need for.

The characteristics of the implementation object (factor 2) are important, and in this project the implementation object is the evidence-based framework of palliative care described in two national documents produced by the National Board of Health and Welfare [21] and the Regional Co-operative Cancer Centre [20]. An ethnographic study halfway into the KUPA project indicated that the knowledge-based palliative care was perceived as new knowledge by the nurse assistants [32], who have a short, often half a year, pre-university education. They appreciated the knowledge and tools they received, but at the same time, this finding meant that there were barriers, such as limited time and emotional stress, to having conversations about death. The complexities experienced by nurse assistants may have negatively influenced the degree of implementation of the object, i.e. palliative care.

The effect of the implementation is also dependent on the characteristics of the implementers (factor 3), which in this study were the staff and the managers of the organisations. According to the Organizational Readiness to Chance theory (ORC) [33], there are several barriers to and facilitators of implementation. For instance, by interviewing managers, Nilsen et al. [34] found four barriers to implementing palliative care at nursing homes: the staff’s beliefs in their capability to face dying among older persons, the staff’s attitudes to changes at the nursing home and the resources and time required. The barrier regarding the capacity to face dying among older persons has also been shown among nurses’ aides at nursing homes [32].

The target populations for the intervention (factor 4) were the staff and managers at the nursing homes, which meant that next of kin and the older persons were the secondary groups who were expected to receive benefits of the intervention. Our assumption in choosing QoL among next of kin as one outcome measurement was that by implementing palliative care in nursing homes, the next of kin would be affected by receiving support from staff in accordance with a palliative care approach. However, the intervention was given to one group (approximately 8–12 persons) at each nursing home. Depending on the number of staffs at each nursing home (ranging from 23 to 90), the percentage of the staff who received the intervention was between 13 and 50%. This means not only that the results probably differed between the nursing homes but also that the exposure was very low. A potential modification might be to intensify the magnitude of the interventions, for instance, by letting all the staff at the nursing homes receive the intervention. In our study, five meetings over a period of 6 months were implemented. The intervention was designed so that it could be shared with the other staff in the form of tasks to implement between each seminar, but this approach might not have been enough. Other interventions have used the so-called “booster sessions”, i.e. additional sessions conducted periodically to reinforce the knowledge given in the seminars to enhance the intervention effect [35, 36], which is another possible modification of the intervention.

Finally, the context of the implementation (factor 5) refers to the characteristics of the context, i.e. the social environment in which the implementation takes place. In this study, we aimed to investigate the characteristics of the included nursing homes that differed greatly. However, the social environment that impacts the implementation process is often beyond the control of the implementers.

We used the WHOQOL-BREF instrument [23] to access the next of kin’s self-reported QoL. The instrument is recommended for use in a variety of cultural settings, however, as far as we know, it has never been tested specifically with next of kin of older persons in the context of a nursing home. In a recent psychometric study using baseline data from the KUPA project (Rosén et al. unpublished), the WHOQOL-BREF was found to have acceptable psychometric properties when used to access QoL among next of kin of older persons at nursing homes. However, to our knowledge, the instrument has never been tested to assess responsiveness to change, which is a major methodological weakness in relation to the present study. In the same article, a ceiling effect was suggested to restrict the WHOQOL-BREF’s ability to detect true positive changes in QOL over time (Rosén et al. unpublished). This could have had an impact on the ability to measure increased QoL in our sample.

Some of the next of kin in our study were uncomfortable and surprised that we were interested in their QoL because the focus for them seemed to be the older person and their QoL. This fact revealed that next of kin do not consider themselves as targets of intervention, which might have been different if they were more involved in the intervention. We learned this as we had taken additional quality control steps by including an open question to validate the answers and read the comments of the next of kin.

To verify that the intervention was delivered as designed, and as a part of the evaluation of the KUPA project, the research team plans to conduct a fidelity study using extensive data collected. Examples of data collected are the staff and managers’ verbal and written evaluations after each of the seminars, with the possibility to describe what was good and what needs to be improved. Furthermore, six focus group interviews, about readiness to change their work, with 40 staff and 20 managers, as well as individual interviews with 22 managers were conducted before and after the implementation of the intervention. The results of the fidelity study will show the extent to which the intervention has been implemented as intended.

Since very few published evaluations have presented the effect of implementing palliative care in a nursing home setting, this study contributes valuable knowledge for the proper planning of an effective implementation model for palliative care. This study evaluated the QoL of next of kin to older persons in nursing homes after implementation of an educational palliative care intervention. The results indicated small statistical changes regarding next of kin’s QoL in favour of the intervention. The lessons learned from the study are to include next of kin in the intervention, in particular, as participants at meetings about next of kin. Another suggestion is to include more meetings about the theme next of kin. Both approaches would bring a stronger focus on the family-centred care into the education component, which this study indicates the need for.