Discussion
To the best of our knowledge, this is the first study to explore the thematic content of patient expressed worries in home care visits, and how the nursing staff respond to different thematic content. The findings show that the thematic content to a large extent focus on “Ageing and bodily impairment”, that is the older persons’ personal struggle to cope with an aging body, reduced physical health and pain, and to accept that life is near the end [
18]. Nursing staff response differ according with thematic content of the older persons’ worries, especially for older persons’ worries about “Relationships with others” and “Aging and bodily impairment”.
“Ageing and bodily impairment” represent existential challenges because the addressed circumstance or event challenges the individual person’s identity, experience of autonomy, self-worth and/or dignity [
58]. Reduced function and chronic pain may leave the person unable to engage in valued activities and force the person in to a state of enduring pain, which hampers the prospect of living a good life. This is shown as a strong trigger for existential challenges which can lead to death anxiety [
59], reflecting the importance of supportive nursing staff responses to such worries [
60,
61].
Moreover, bodily impairment may influence the older person’s ability to communicate properly, and act as a barrier for communication, and nursing staff may experience the older person’s bodily impairment as an obstruction to communication, and a barrier to respond effectively to expressions of existential loneliness among older persons [
62]. The nursing staff’s lack of confidence in own ability to correctly interpret the older persons’ care needs in these situations hamper their ability to provide effective care [
62]. An international task force of experts have emphasised the importance of implementation strategies to prevent functional decline in older persons living in nursing homes to ensure quality and efficient care for older persons living in the community [
63]. Loss of mobility and social support, cognitive decline, iatrogenic events, and progression of disease are described by the task force as driving factors of functional decline among older persons. These are all issues expressed as causing worry by the older persons in this study. This highlights the importance of ensuring that these issues are taken into consideration when the nursing staff evaluate home care needs of older persons. Moreover, a clinical practice that includes the older person’s perspective and worries about functional decline and bodily impairment is likely efficient in ensuring the older person’s ability to continue to live a good life in their own home and has potential to reduce or postpone the need for transferal to a nursing home. There is some evidence indicating that investments in home care services may influence the need for nursing homes, although the evidence is weak and has methodological challenges [
64].
In this study, the older person’s effort to cope with functional decline also raises existential issues for the person and is captured by the main theme “Ageing and bodily impairment”. Because of the high frequency of worries about existential issues in home care, there is a need for communication training of nursing staff to ensure sensitivity to these worries, and to provide nursing staff with adequate strategies to provide support. What type of responses older persons prefer and perceive as supportive in different situations are yet to be explored. However, increased communication skills may have the potential to enhance the experienced quality of care [
7,
8], prevent unnecessary suffering [
65] and increase the nursing staff’s perception of being competent when facing challenging communication in home care [
26,
27,
62].
In general, the older persons in our study spontaneously expressed a greater number of worries compared to patients in other care situations in previous studies [
35,
36,
38]. This was especially prominent for the theme “Ageing and bodily impairment”, which had equal distribution of nursing staff- and patient-elicited cues/concerns.
The fact that nursing staff were more prone to elicit cues/concerns for other themes of worries than “Ageing and bodily impairment” may be linked to features relating to the older person, the nursing staff, or the theme itself. One interpretation could be that older persons are more inclined to share worries about “Ageing and bodily impairment”. Another interpretation could be that nursing staff focus less on issues relating to ageing and bodily impairment, leading older persons to initiate such worries by including the topics into the conversation. Finally, this could be related to nursing staff finding it difficult to be supportive and helpful when facing such worries, because they tap into existential issues and need for spiritual support, an area where nursing staff lack competence [
26,
66,
67]. Consequently, nursing staff may feel uneasy and wait for the older person to include these topics into the conversation rather than introducing them.
When exploring responses used by nursing staff in relation to worries about “Ageing and bodily impairment”, our findings revealed that existential challenges were responded to with an emotional focus and thereby inviting the older person to talk more about the topic, whereas expressions about pain were more likely to be ignored. Hence, the nursing staff in our study seem to be attentive when the expressions include a reference to existential challenges, but avoiding potentially challenging situations [
26] by ignoring the patient's expressions of pain. This may indicate that nursing staff do recognise the older person’s need to share his/her worries about existential issues and respond in a way that allows the older person to talk more about the topic. This supports other research that emphasises that nursing staff need strategies for dealing with existential issues in a more profound way than simply allowing the person to express him/herself [
62,
66].
When the nursing staff ignore the spontaneous expressions of pain, this may not be a conscious response strategy, but rather an indication of the nursing staff becoming less responsive or even disinterested over time, with regard to patients known to be expressive about their pain [
50,
68]. In this way, they may not reflect on whether this could be the older person’s way of hinting to how the pain is emotionally challenging or overwhelming, but rather interpret this as “normal” for the situation at hand. Addressing psychosocial aspects of living with chronic pain have been emphasised as salient and often neglected by care providers [
69].
Inadequate pain management may lead to adverse physical and psychological patient outcomes, like reduced wound healing, reduced immune system response, negative effects on vital bodily functions and reduced patient mobility [
70]. Nursing staff sensitivity towards the patient’s experience of pain and efficient pain management may consequently prevent or reduce functional decline from poor pain management. This has been emphasised as essential for practicing efficient geriatric medicine and care in the setting of nursing homes [
63], and is likely equally important in home care for older persons.
Given the assumption that a person’s experience of pain can challenge a person’s emotional well-being, the nursing staff’s evaluation of and attention to expressed worries during home care delivery will likely influence their ability to tailor the care in accordance to person-centred principles, like practicing holistic care and eliciting the patient perspective [
11]. Ensuring high quality pain management as part of home care services includes tailored care for the emotional aspects of living and coping with pain, and the influence of daily life of the older person. Evidence support that home care nursing staff and their patients develop a relationship that allow home care nursing staff detailed insight into the personal life of the patient, and therefore a more comprehensive picture of the person’s life story than in a hospital setting [
30]. This highlights a need for collaboration between nursing staff, who provide the daily care and observe how pain and bodily impairment impact the older person’s life, and the general practitioners and other healthcare services, to provide a holistic approach at all levels of care delivery. This is promoted as essential to provide person-centred care for older persons [
15].
Both existential challenges and pain management capture worries that involve older persons’ perceived self-determination, functional status, and effort to maintain health [
18]. These elements are highlighted as essential to ensure the ability of older persons to continue a good life living at home, and are important care outcomes for home care services [
71‐
75]. Our study supports recommendations made by other studies [
26,
76], that existential challenges and pain management should be emphasized in communication skills training for students and nursing staff working in home health care. Moreover, our study indicates that addressing how to cope with chronic pain and reduced functional ability caused by pain, may be important to include in communication training of nursing staff together with existential issues like the influence of an aging body on a person’s identity. How to remain sensitive and responsive may be particularly important in relation to these issues, including the nursing staff’s ability to listen [
68] and to respond in a supportive way [
41], which both are essential components in person-centred quality care [
6,
12].
“Relationships with others”, and “Life narratives and value issues”, which address psychosocial aspects [
18], were the least frequently expressed worries in our study. The findings were somewhat surprising to the authors. Both themes are assumed to be relevant for the experience of isolation and loneliness [
18], thereby potentially influencing health and well-being of older persons [
77,
78], and seen as important challenges to manage in care of older persons [
17]. Therefore, we expected these themes to be frequently observed. One reason for our findings could be that the care setting is characterised by task focused communication [
27] that places the care tasks and related issues in focus. Therefore, the patients may by nature experience the company of the nursing staff as supportive and thereby drawn the attention away from potentially worrying relational issues or important life events.
This study also found that older persons’ worries about “Relationships with others” were responded to differently depending on the sub-theme. The sub-theme “Being a burden” received a higher proportion of content-focused responses, while the sub-theme “Losing social ties” received more emotion-focused responses. This may indicate that nursing staff perceives responding to the emotion as the best approach to worries about losing significant others, allowing the older persons to explore their feelings using their own words and following their own train of thoughts. The experience of being a burden may be seen as best addressed by directing the older person’s attention the factual aspects of the situation. Both type of responses indicate that the act of whole-heartedly listening to the patient is essential because it facilitates the person’s perspective and fosters the care relationship [
68].
Responding to content when addressing issues relating to being a burden to others, may represent how nursing staff perceive best practice as providing information, reasoning or solutions, by presenting facts or understandings, helping the older person to gain perspective on the situation or circumstance triggering the unpleasant emotion. This has been argued as a more effective approach in clinical communication when trying to help patients to regulate worry as compared to focusing on the affective component of the patient’s expression [
79]. However, the type of responses focusing on thematic content is perceived as only moderately supportive and most effective when combined with statements that also acknowledge the affective component of the person’s worry [
65]. Given the unresolved issues relating to when and if an affective focus is preferred by patients and when emotion-focused responses may contribute to more effective care delivery, further research need to explore cause and effect on outcomes relating to patient preferences, patient health, and the care relationship.
For “Life narratives and value issues”, expressions of worries facilitated by nursing staff was particularly prominent. This theme was also dominated by responses that allowed the patient to talk more about their worries. Evidence supports the importance of nursing staff engaging in older persons storytelling to allow shared understanding about their life-story, and to foster rapport and deepen the care relationship [
80]. This emphasises that nursing staff working in home care should continue to be sensitive to the older person’s need to share narratives and important experiences from their own life.
Only two expressions were related to worries about “Losing self-government”. Moreover, a relatively small proportion of expressions concerned “Health-care-related issues”. Therefore, it appears that older persons rarely express worries regarding help being experienced as invading or insensitive to their preferences. Other studies have described the importance of detecting and disclosing such feelings in order to provide efficient care and to succeed in helping older persons to live a good life in their own homes [
81,
82]. One reason for this finding may be that older persons may have difficulty in expressing dissatisfaction with the care provided and how the help is organized by the nursing staff. In turn, such reluctance may hamper the nursing staff’s ability to provide person-centred care, because the individual preferences, experiences, and ideas about what care needs are not shared by the patient [
83]. Another explanation could be that nursing staff is already responsive and sensitive, and therefore care provision is rarely an issue causing worry. Based on these findings, it is important to examine further how older persons are included in care management and decisions on a daily basis, how to best involve them, and nursing staff strategies for doing so.
Emotion-focused responses, allowing the older person to elaborate on worries may serve to build the relationship through sharing of experiences. The nursing staff show respect for the older person by actively listening and allowing a shared understanding of events that may influence how the older person understands and sees him/herself at the present time. From this perspective, emotion-focused responses may be a way of practising person-centred communication [
82,
84]. However, this depends on whether or not the nursing staff actively use the information to tailor the care in accordance with the perspectives raised by the older person. Limiting the engagement with the older person’s worries to allowing him/her to talk about these issues, deny the important function of offering new perspectives that can help the older person to cope better with the situation and regulate the experience of worries [
85]. A person’s subjective experience of important circumstances or conditions in life, such as relational issues or threats to personal health and well-being, may all cause worries and distressful thoughts leading to the need to share, discuss, and seek comfort and advice in others [
85]. Evidence suggests that older persons’ perceived well-being and life satisfaction are positively correlated with perceived good health, absence of worry and self-esteem [
86]. This suggests that supportive responses—providing explicitly relevant information to aid understanding, offering a solution to a problem, providing comfort or emotional support, or helping the older person to explore what is experienced as worrying [
65,
85] may be important to facilitate a general and sustained feeling of well-being.
Although there are uncertainties about the effects of engaging with patients’ emotional cues [
87], responsiveness to emotional expressions is emphasised as important to manage communication challenges and to prevent unnecessary suffering for the patient [
26,
35,
76]. Recognising and responding to emotions tap into preferences and values of the individual patient [
82,
88], and potentially strengthen the care relationship [
84,
89].