A phenomenological–hermeneutic study exploring caring responsibility for a chronically ill, older parent with frailty

Abstract Aim To provide lifeworld insights into experiences of adult children with caring responsibility for an 80+‐year‐old chronically ill parent with frailty. Background Informal care is common in Nordic welfare countries; however, little is known about adult children's experience of caring responsibility in this setting. Design A phenomenological–hermeneutic study based on Reflective Lifeworld Research. Methods Diaries and semi‐structured interviews with 12 adult children. Results Caring responsibility is identified as “a condition of life, filled with uncertainty.” Three constituents contribute to this phenomenon: (a) balancing love, duty and reciprocity; (b) being the parent's advocate and manager; and (c) experiencing concerns and bodily strain. Conclusion Adult children work hard to provide care and enhance the well‐being of their parent. Heidegger's concept ‘Fürsorge’ may help us understand how by showing how caring responsibility means balancing different roles vis‐à‐vis the parent, one's own life and the health and social systems. Caring responsibility changes the relationship between parent and child.

In Denmark, health and social services are financed by general taxes and therefore free of charge (Danish Ministry of Health, 2017). Home care and home nursing are provided by the municipalities according to individual need to allow people to stay in their own homes as long as possible. Even so, relatives undertake much informal caregiving (Lewinter, 1999;2003;DanAge Association, 2017b) like in other countries. Approximately 1/3 of the populations in 20 European countries are informal caregivers (family and friends) (Verbakel, Tamlagsrønning, Winstone, Fjaer, & Eikemo, 2017), and informal caregiving is more common in Nordic countries than in Central, Eastern and Southern Europe (Verbakel et al., 2017).
Demands on relatives like adult children are thus high and expected to increase because of current structural changes to reduce healthcare costs. However, adult children are typically at a stage in their own lives where they face competing demands and must balance work, parenting, spousal relationships, early retirement and other life demands, while simultaneously facing caring responsibility for their older parent(s) (O'Sullivan, 2014).
Caregivers have been conceptualized as "conductors" responsible for maintaining the "rhythm" necessary for an older person's well-being, whether at home or while hospitalized (Lowson et al., 2013). In a study of how relatives experienced hospitalization of older persons and collaboration with nurses in an acute ward, Lindhardt, Bolmsjö, and Hallberg (2006) found that some relatives entrusted the older person's care into the hands of health professionals and therefore had some respite from caregiving activities; others did not and adopted controlling behaviours, closely monitoring care and treatment.
However, adult children become primary caregivers if the parent lives alone and they have a history different from that of a spousal relationship. They would have relied on their parent for support and nurturing, but now they must provide support and assistance to their parent. Bastawrous, Gignac, Kapral, and Cameron (2015) investigated factors contributing to adult children caregivers' well-being, for example duration and type of caregiving (i.e. instrumental or emotional), parent's condition and impairment type (cognitive impairment was associated with greater depression and higher burden than physical impairments) and parent-child relationship quality.
Adult children's motivation for providing informal care has been discussed in terms of pure altruism, reciprocity or family norms (Klimaviciute, Perelman, Pestieau, & Schoenmaeckers, 2017).
However, what does it mean to have a caring responsibility in a Nordic welfare context? As healthcare professionals, we must gain a deeper understanding of this group of relatives who offers support across healthcare levels (Bridges et al., 2010;Lowson et al., 2013;Rustad et al., 2017) and are a vital albeit often underestimated resource in the care and well-being for older people.

| AIM
To provide lifeworld insights into the experiences of adult children with caring responsibility for an 80+-year-old chronically ill parent with frailty.

| Design
To explore the lived experience of the phenomenon of caring responsibility from adult children's perspectives, we conducted a qualitative study based on Reflective Lifeworld Research (RLR) (Dahlberg & Dahlberg, 2019;Dahlberg, Dahlberg, & Nyström, 2008). RLR works across phenomenological and hermeneutic philosophies and is focused on the lifeworld; the taken-for granted-world of experience (Dahlberg & Dahlberg, 2019). RLR aims to illuminate the essential meaning of a phenomenon which requires openness, flexibility and a reflective attitude towards it throughout the entire process. In RLR, this attitude is called "bridling"; it includes awareness of the impact of our pre-understandings (Dahlberg et al., 2008), for example scientific theories, being healthcare professionals and having (had) older parents ourselves. Thus, the authors continuously reflected on and discussed the evolving process of understanding, patiently waiting for the essential meaning of the phenomenon to show itself during the analysis.

| Participants
Participants were 12 adult children (five sons, seven daughters) aged 38-73 years (mean 58 years) whose parents were 81-98 years old (mean 88 years), chronically ill, living alone with frailty and therefore receiving home care support with activities of daily living (ADL), for example personal hygiene, toileting or eating and with instrumental activities of daily living (IADL), for example cleaning and cooking. Their parents also received home nursing mainly focusing on medication. We used the standard frailty definition: "A medical syndrome with multiple causes and contributors that is characterized by diminished strength, diminished endurance and reduced physiologic function that increases vulnerability for developing increased dependency and/or death" (Morley et al., 2013). Parents diagnosed with dementia were excluded.
In collaboration with staff at a geriatric department, the first author selected participants using a purposeful sampling strategy (Holloway & Galvin, 2017) to ensure selection of those currently experiencing the phenomenon of caring responsibility. Participants were included if they were primary caregivers having contact with a parent daily/several times a week; and if they could read, write and speak Danish. Variation regarding sex, age, occupation and the parent's medical condition and care setting appeared during the selection process and thus allowed diverse perspectives to be addressed (Table 1). After consent from the parent, the first author contacted the participant. Preliminary analysis showed that the 12 participants' lifeworld experiences adequately represented the general structure of the phenomenon of caring responsibility.

| Data collection
Data were generated from January-September 2018 using diaries and interviews. The adult children completed a 2-week diary from the time of their study inclusion. They could choose between different formats and received an envelope with an audio-recorder, a notebook and written guidance with open questions like: "Could you please tell about your experiences during your father's/mother's hospital stay? During the discharge process? During home care assistance?" The diary allowed participants to report their experiences shortly after they occurred and undisturbed by the researcher (Clayton & Thorne, 2000). Eight participants completed the diary: two using the audio-recorder and six using a handwritten format.
The diary length varied with most being a couple of pages long (range 1-20 pages). Four participants did not complete the diary due to distress and a lack of time.
The diary was followed up with an in-depth interview (Dahlberg et al., 2008) by the first author who used an interview guide and diary notes as starting points to further explore the adult children's experiences with caring responsibility. The guide comprised questions expanding on their experiences with caring responsibility, for example: "What is it like to help and support your mother/father?

Can you give examples of the caring responsibility you experience?
What does helping you parent mean to you?" The time and location of the 12 interviews were determined at the participants' convenience: two face-to-face interviews were conducted in the participants' homes and 10 telephone interviews were conducted in the evenings. Interviews lasted 40-75 min and were recorded. The first author transcribed verbatim the audio-recorded/handwritten diaries and interviews for textual analysis.

| Ethical considerations
Assuming that both the parent and the adult child were in stressful and vulnerable situations, we gave high priority to ethical considerations during the entire process. Oral and written information about the study was given, including an option to withdraw from further participation at any time. Parent and child had time to discuss participation before providing written consent. Confidentiality and anonymity were assured (Nordic Nurses' Federation, 2003). The study was approved by the Danish Data Protection Agency (reference number 2015-57-0066).

| Data analysis
All data were analysed and discussed with an open, reflective and bridled attitude following the methodological principles of RLR (Dahlberg et al., 2008). Analysis encompassed empirical data from diaries and interviews as a whole, focusing on differences and similarities in descriptions of meanings across data. This approach was cyclic; data were read thoroughly several times to gain an understanding of the overall picture. Thereafter, significant texts, called meaning units, were marked with notes of initial understanding.
Related meaning units from diaries and interviews were then gathered in temporary clusters helping the researchers determine the essential structure of meanings. The clusters were then related to each other to find a pattern that described the essential meanings of the phenomenon of caring responsibility followed by descriptions of meanings further constituting the phenomenon. An example of the analysis process is presented in Table 2.

| FINDING S
The essential structure of the meanings is that the phenomenon of caring responsibility is "a condition of life, filled with uncertainty." Three closely intertwined constituents contribute to the phenomenon: (a) balancing love, duty and reciprocity; (b) being the parent's advocate and manager; and (c) experiencing concern and bodily strain.

| A condition of life, filled with uncertainty
Adult children experience caring responsibility as a condition of life, filled with uncertainty. This state is always present and closely intertwined with affection and obligation and a feeling of giving back some of the help received from the parent earlier in life. It is a condition to be concerned with one's parent's well-being: However, uncertainty also relates to concerns about how to balance caring responsibility and the caregiver role in different healthcare contexts and one's own life. The health and social services do not always deliver the expected care, which increases uncertainty about the parent's situation staying in his/her own home; and this sparks concerns regarding growing old and dependent oneself.

| Balancing love, duty and reciprocity
Adult children's feeling of caring responsibility comes from love and gratitude towards their older parents, most of whom have been there for their children and helped them in earlier years; now the children want to reciprocate. However, not all children/siblings seem to assume caring responsibility, which increases the load on those who do. Often one (or two) of the children, living nearby and having a closer relationship with the parent, becomes primary caregiver.
The feeling of duty and reciprocity depends on the relationship with the parent and the family's history: It is meaningful to provide informal care related to IADL, for example shopping; cleaning; taking the parent to the dentist or hospital; and administer the parent's finances. However, assisting with intimate ADL like personal hygiene or toileting is not perceived as natural. This is experienced as being inordinate for both child and parent; thus, an unspoken agreement exists that such ADL are primarily handled by home care.

| Being the parent's advocate and manager
For some children, having caring responsibility means supervising and taking on the role of being the parent's advocate and manager, which involves mediating the best care and treatment irrespective of setting. The health and social systems are appreciated as they relieve the children from some of their worries about their parent's basic needs.
However, relief is not necessarily associated with being satisfied with the care and treatment provided. Uncertainty is still there, and sometimes, the children have to argue with doctors to arrange hospital admittance for their older parents and remind nurses of basic care needs: Therefore, I feel more like his business manager.

My father was placed in a chair for 11 hours in the emer
Caring responsibility enhances being proactive on the parent's behalf. However, uncertainty is experienced when balancing between standing firm and simultaneously not being viewed by healthcare professionals as being troublesome when questioning decisions. The children know that the health and social systems are under pressure but prefer more proactive systems and suggest that "a contact person who is affiliated with the patient would be helpful."

| Experiencing concern and bodily strain
Although assuming caring responsibility is a condition of life, it is stressful watching an old parent become ill, frail and dependent and this situation is accompanied by constant concern and uncertainty about the parent's well-being, including a touch of guilt.

| COMPREHENS IVE UNDER S TANDING AND D ISCUSS I ON
The phenomenon of caring responsibility for an old parent with frailty and illness is experienced as "a condition of life, filled with uncertainty". Our findings highlight adult children's deeply rooted will to show caring responsibility for their parent. Even in a Nordic welfare state like Denmark, caring responsibility is experienced as a condition of life. The children could leave all care to the formal health and social systems, but they do not. They want to reciprocate; expressed as wanting to give back some of the help they received from their parent(s). In line with other studies (Lindhardt et al., 2006;Lowson et al., 2013), they act as advocates and managers to protect and ensure their parents' well-being. Our findings confirm those of Johansson and Sundström (2006), who showed that solidarity between generations, expressed as willingness to help older persons in need, is not superseded by extensive public care. On the contrary, it has gained new ground in the face of public service curtailments. This may be explained by looking closer at the concept of caring.
Caring means to be concerned about and can be understood as the basis for all human relations (Delmar, 2013(Delmar, , 2018Martinsen, 1993). According to the German philosopher Heidegger (1962, p. 227), caring or "Sorge" in German is a fundamental basis of our being-in-the-world. Heidegger distinguishes between "Besorgen," meaning our engagement with things, and "Fürsorge," meaning our engagement with other people. "Fürsorge" is commonly translated as "solicitude," suggesting care like in "taking care of children" (Heidegger, 1962, p. 157). Life is one's own self-being, as well as being at the same time with others, for which caring is constitutive.
Therefore, a close connection between care, self-care and solicitude exists that is inherent in adult children's descriptions of caring responsibility as a condition of life. "Fürsorge" may explain motives of love, duty and reciprocity, which are at play between adult children and their parent in the present study. With "Fürsorge," care manifests in our everyday life in two ways. The first kind of "Fürsorge" is substitutive; the caregiver is putting him or herself in the other person's place for as long as it takes; the caregiver "leaps in" (einspringen) to take over responsibility for a current situation. In the second kind of "Fürsorge," the caregiver "leaps ahead" (vorausspringen) of the care recipient to show the way towards future possibilities and potentials. Adult children seem to assume and balance "Fürsorge" in both ways in various combinations: when they take over responsibility and become advocates and managers mediating between their older parent, the health and social services and the rest of the family; and when they balance feelings of love, duty and reciprocity enforced by the fact that the parent lives alone and needs support with IADL. "Fürsorge" is an ongoing condition of life. However, in the situation with an old, ill parent, the practical part of "Fürsorge" seems to background togetherness because the child is busy with the new roles as, for example housekeeper, chauffeur, advocate and manager, thus disrupting balanced reciprocity in the relationship. The child must navigate in this new asymmetrical relationship while still being the son/daughter, trying to maintain the parent's autonomy and dignity.
Regarding dignity, it is noteworthy that an unspoken agreement seems to exist between parent and child that intimate ADL should be handled by home care. This is different from studies from other parts of the world, where adult children may do whatever necessary including providing financial support (Abalos, Yasuhiko Saito, Cruz, & G.T. & Booth, H., 2018;Aires et al., 2017;Mendez-Luck, Kennedy, & Wallace, 2008). However, this mutual agreement is consistent with findings of prior studies by Haberkern and Szydlik (2010) and Suanet, Groenou, and Tilburg (2012) if not yet retired, is a challenge. A study by Eldh and Carlsson (2010) confirms how middle-aged adult children expressed that they seemed to work all the time, either as employees or as an informal caregiver, some even decided to retire earlier than planned (Carlsen & Lundberg, 2018).
Uncertainty is constantly present as an existential concern about what lies ahead regarding the parent's illness, frailty and dependency. Uncertainty is sometimes enforced by the perception of the health and social systems' failure to deliver the expected care and treatment; and some children experience uncertainty when mediating between their parent and healthcare professionals. They try to leap ahead and balance obtaining the best care and treatment for their parent with the risk of being viewed as too demanding. In line with previous research (Bridges et al., 2010), adult children would prefer the healthcare professionals to be more proactive and sensitive, which would prevent some uncertainty. Adult children's experiences with caring responsibility for an older parent raise concerns about growing old and becoming dependent, even in a welfare state like Denmark. These concerns should be considered when planning future care and policies for older people and relatives like adult children.

| Study limitations
Using the diary method to allow descriptions of experiences shortly after they occurred was a challenge since the amount of data was minimal due to participants' distress and lack of time. The diary method should, therefore, be considered in combination with other methods and was here complemented by in-depth interviews allowing rich lifeworld descriptions. Furthermore, telephone interviews are often depicted as a less attractive alternative to face-to-face interviews because of the absence of visual cues (Holloway & Galvin, 2017). However, in the present study telephone interviews allowed participants to feel relaxed and able to disclose sensitive information (Norvick, 2007) and describe the phenomenon of caring responsibility in terms of feelings of sadness, anger and love.

| CON CLUS IONS
Despite support from the Danish health and social systems with ADL, IADL and home nursing, adult children in this study worked hard to ensure the right care and treatment for their older parent. The phenomenon of caring responsibility is a condition of life; however, it is accompanied by substantial uncertainty due to the parent's illness and frailty and is enforced by the fact that the par-

| Implications
Nuanced lifeworld descriptions and comprehensive understanding of the complex phenomenon of caring responsibility from the perspectives of adult children caring for an old, frail, chronically ill parent who lives alone have several implications: • These insider views can enhance empathic understanding and allow a deeper level of care focusing on patient and family.
• Adult children play a vital role in their parent's care and treatment; thus, it should be considered how such a role can be more actively acknowledged and how adult children can be more actively involved in planning arrangements.
• Supporting relatives like adult children in their caregiver role in a more proactive way, it would be beneficial if a contact person be affiliated with the older parent whether he or she was hospitalized or living at home.
• At a policy level, the contributions and responsibilities assumed by adult children should be recognized since they play a crucial role in the policy of ageing in place. Furthermore, their concerns regarding future elderly care should be considered.

ACK N OWLED G EM ENT
We would like to kindly thank the participants for sharing their experiences of caring responsibility and the staff at the geriatric department at Odense University Hospital for helping with recruitment.

CO N FLI C T O F I NTE R E S T
The authors declare no conflict of interest.

AUTH O R CO NTR I B UTI O N S
All authors: substantial contribution to and agreement on the final version of the manuscript.