Journal of Gerontological Nursing

Feature Article 

Female Family Caregivers' Experiences During Nursing Home Admission: A Phenomenological Qualitative Study

Domingo Palacios-Ceña, PhD, RN; Enrique León-Pérez, RN; Rosa María Martínez-Piedrola, PhD, OT; Jose Miguel Cachón-Pérez, PhD, RN; Paula Parás-Bravo, PhD, RN; Juan Francisco Velarde-García, PhD, RN

Abstract

The experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis. Three themes emerged: The Value of Experience: Deciding on Admission and Defending One's Criteria; Living on Two Sides of the Same Coin; and Maintaining Contact. Results provide insight into female caregivers' experiences of NH admission, which may improve relationships established between female family caregivers and NH staff and help inform the decision-making process. [Journal of Gerontological Nursing, 45(6), 33–43.]

Abstract

The experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis. Three themes emerged: The Value of Experience: Deciding on Admission and Defending One's Criteria; Living on Two Sides of the Same Coin; and Maintaining Contact. Results provide insight into female caregivers' experiences of NH admission, which may improve relationships established between female family caregivers and NH staff and help inform the decision-making process. [Journal of Gerontological Nursing, 45(6), 33–43.]

Gradual aging of the population currently poses new challenges, such as disability and chronicity (O'Shea, Weathers, & McCarthy, 2014). However, dependency and loss of autonomy in older adults make nursing homes (NHs) a necessary care resource (Aldana-González & García-Gómez, 2011). In Europe, 95 million individuals are 65 and older, representing 18.5% of the total population. Of these individuals, approximately 45% have a disability, and between 20% and 33% require care or support. More than one quarter of the total older adult population is 80 and older, and approximately one half of all long-term care users are 80 and older (European Network of National Human Rights Institutions, 2017). In 2008, approximately 20% of the population age 65 and older with functional limitations living in European countries received long-term care in a NH (Giannakouris, 2008). A more recent report by the Statistical Office of the European Union (2017) reported 2.69 million individuals age 65 and older live in institutional settings. Over the next 4 decades, the European population with dependency is expected to increase to 28.1% by 2060 (Giannakouris, 2008); moreover, between 2005 and 2015, 60% of the aged population was found to have perceived limitations in daily activities and long-term care needs (Gianino et al., 2017).

Traditionally, in Spain, care of dependent older adults has relied on the family (Casanova, Lamura, & Principi, 2017). This method of care based on the contribution of the family, known as “familialism” or “family-based” care, has made it possible for older adults to remain at home with certain levels of disability; however, due to social and economic changes, this traditional model is disappearing (Casanova et al., 2017; Galiana-Gómez de Cádiz, de la Cuesta-Benjumea, & Donet-Montagut, 2008). As an alternative, immigrant caregivers are being hired more frequently and institutionalization is increasing (Galiana-Gómez et al., 2008).

In Spain, NHs are one of the main social care resources available for older adults. Admissions are usually related to a need for long-term care, caregiver burnout, and/or the limitation or absence of financial resources (Fernández Muñoz, 2015). NHs aim to provide care, enhance residents' capabilities, prevent disability and loneliness, and promote an environment where residents are able to live a life with respect, dignity, and autonomy. Typical NH staff include physicians, nurses, nursing assistants, psychologists, occupational therapists, physiotherapists, social workers, nurse managers, and kitchen, laundry, and cleaning services (Casado-Marín, 2006). NH stays can be permanent or temporary, with temporary stays generally lasting 3 months, of which the latter months are for post-hospitalization recovery or family respite (Casado-Marín, 2006).

NH residents have high care needs. In Canada, Tanuseputro et al. (2017) reported how a cohort of 64,105 incident NH admissions showed that two thirds of residents had great difficulty performing activities of daily living (ADLs) (65%) and had mild to severe cognitive impairment (66%); more than 90% had great difficulty with instrumental ADLs. In addition, approximately 50% of new admissions were residents with high care needs, whereas only 4.5% (2,880 residents) had low care needs. In the United States, Han, Trinkoff, Storr, Lerner, and Yang (2017) studied 2,301 assisted living facilities and reported that more than one half of facilities admitted residents with considerable health care needs and served populations that required nursing care (e.g., assistance with transfers, medications, and eating or dressing). In Spain, according to a 2016 report by the Ministry of Health, Social Services, and Equality, 372,306 NH spaces were available, distributed among 5,387 centers, of which 297,220 were occupied by older adults with moderate to high dependency (Vidal Domínguez et al., 2017). Due to illness progression, functional decline, limited ability of the family to provide care, and lack of appropriate family infrastructure, NH admission may be permanent (Abellán García, Aceituno Nieto, & Ramiro Fariñas, 2018).

NH admission is often a difficult experience for all involved individuals to accept (Dorell et al., 2016). After admission, there is a feeling of relief among all concerned as well as an improvement in quality of life due to lessened burden of care (Dorell & Sundin, 2016). However, negative feelings may also appear, such as sadness, anger, and guilt, due to lack of control over the admission process and lack of active participation in the older adult's care on a continuous basis (Brea, Albar, & Casado-Mejia, 2016). Jacobson, Gomersall, Campbell, and Hughes (2015) reported how caregivers experience mixed feelings (including guilt, loss of control, failure, and relief) when the individual they have been caring for moves permanently into a NH. Furthermore, they seek validation for their decision, often displaying a need for support before, during, and after the move to a NH.

The participation of relatives makes the admission process easier, especially when selecting the NH (Ryan & McKenna, 2015; O'Shea et al., 2014). Relatives take into account and value certain aspects when considering NH admission, such as location, the quality of care provided, the overall environment, and the existing collaboration among nursing staff, families, and residents (Dillman, Yeatts, & Cready, 2013). Planning and developing familiarity with the NH prior to the move may help family caregivers minimize the experience of loss of control that is common when the individual being cared for moves permanently into a NH (Carter et al., 2018; Hainstock, Cloutier, & Penning, 2017; Jacobson et al., 2015).

In addition, many families want to have an active role in the care of their relative after admission (Jacobson et al., 2015; Stephan, Möhler, Renom-Guiteras, & Meyer, 2015) and maintain contact as much as possible to prevent feelings of sadness and loneliness in the older adult (Bollig, Gjengedal, & Rosland, 2016; Koplow et al., 2015), as well as facilitate the adaptation process of the resident to the NH (Jacobson et al., 2015). Although adaptation is difficult for individuals with advanced cognitive disorder or severe illness (O'Shea et al., 2014), the collaboration of relatives in the care of residents improves the relationships between nursing staff and family, as well as the quality of life and autonomy of older adults (Dorell et al., 2016; van Hoof et al., 2016). In the European 7th framework research project RightTimePlaceCare, Stephan et al. (2015) showed that successful collaboration in dementia care among health care professionals and informal caregivers in Germany is based on permanent contact with the person/institution and well-trained, empathetic professionals who can establish trustful and collaborative relationships.

After admission, the family depends on professionals who they do not know, and they experience separation from the resident in time (i.e., there is no continuous contact) and space (i.e., being in unfamiliar surroundings) (Ford, 2008; Jacobson et al., 2015; Stephan et al., 2015). Moreover, Ford (2008) explored the meanings that older rural Australian caregivers gave their day-to-day lives after their relatives had entered a NH and reported that caregivers want to reconstruct their social roles, caregiver roles, and health. Ford (2008) also described how after NH admission, there are gender differences in the way individuals reconnect with their lives and continue their role as caregiver.

Most often, the responsibility of care falls on women (Navaie-Waliser, Spriggs, & Feldman, 2002); as such, this is a global phenomenon (Berg & Woods, 2009) that is independent of culture, beliefs, and geography (Casado-Mejía, Ruiz-Arias, & Solano-Parés, 2012; Cook & Dong, 2011; Mendez-Luck, Applewhite, Lara, & Toyokawa, 2016; Mendez-Luck, Kennedy, & Wallace, 2009; Weiss, Shor, & Hadas-Lidor, 2013). In Spain, a 2018 report on active aging showed that 48.4% of individuals who provide care are women younger than age 65, and that 18.4% are women older than 65 (Abellán García, Ayala García, Pérez Díaz, & Pujol Rodríguez, 2018). Likewise, family relations (e.g., wife, sister, daughter, daughter-in-law) are indifferent for assuming the responsibility of care—the main criterion for supporting the burden of care is being a woman in the family (Abellán García, Ayala García, et al., 2018; Kim, 2001; Mendez-Luck et al., 2009). The responsibility of care translates into the fact that women are responsible for the care of the older adult, along with other activities, such as maintaining a job, managing finances, performing household work, managing provider appointments (i.e., for the care recipient), and caring for children (Juratovac & Zauszniewski, 2014; Navaie-Waliser et al., 2002). These responsibilities affect caregivers' mental and physical health, leading to stress and risk of depression (Juratovac & Zauszniewski, 2014; Navaie-Waliser et al., 2002).

Previous studies have shown that gender continues to play a vital role in the institutionalization process (Brea et al., 2016). Women are still responsible for care during the admission process (Holmgren, Emami, Eriksson, & Eriksson, 2014; Mendez-Luck, Amorim, Anthony, & Neal, 2017). The role of caregiver, based on gender, is accepted by women as a moral obligation, more important in some cases than their own personal care (Berg & Woods, 2009). Culture, religion, and the meaning assigned to the family and the woman's role in the family are key elements that influence a woman's acceptance of assuming the role of caregiver (Cook & Dong, 2011; Mendez-Luck et al., 2016; Mendez-Luck et al., 2009; Weiss et al., 2013).

Regarding admission to a NH, Mendez-Luck et al. (2017) described that Mexican-origin female caregivers who lived in Mexico City and East Los Angeles had the same negative attitude toward NH admission, with most reporting a preference for family care. In addition, despite the negative views concerning NH admission, some caregivers expressed a willingness to seek NH care for themselves so as to avoid burdening their children in the future.

Upon NH admission of their relative, women must construct and find a new role within the NH, where they are not the main providers of care (Davies & Nolan, 2006), such as becoming involved in improving residents' self-care (Chang & Yu, 2013) and the timely detection of changes in residents' health conditions (Powell et al., 2018).

To the best of the authors' knowledge, no previous studies have explored the experience of female family caregivers regarding NH admission of their care recipient. The research question that guided the current study was: What is the lived experience of female family caregivers after admission of their family member to a NH? The aim of the study was to describe the life experience of female family caregivers after long-stay NH admission of their relative.

Method

Design

A qualitative phenomenological descriptive design following Husserl's framework (Dowling, 2007) was applied. Qualitative phenomenological research is designed to explore the meaning of a phenomenon through the specific human experience via rich descriptions (Creswell & Poth, 2018). In qualitative studies, phenomenology attempts to identify the essence of participants' lived experiences (Giorgi, 2005), which are subjective reflections of events occurring in a specific space and time (Giorgi, 2000; Norlyk & Harder, 2010). For Husserl, the aim of phenomenology is the study of aspects to reach an essential understanding of human experience (Dowling, 2007). When considering subjective experiences, researchers must assume a certain attitude of attentive openness and readiness to obtain a proper understanding of the unique meaning of participants' lived experiences (Carpenter & Suto, 2008). This experience always has meaning for participants (Giorgi, 2000, 2005); thus, phenomenological research uses first-person narratives as a data source (Dowling, 2007). The use of bracketing allows critical examination of the phenomena without influencing the researcher's own beliefs (Dowling, 2007; Gearing, 2004). Two bracketing conditions were therefore established in the current study: (a) unstructured interviews without predetermined questions; and (b) description of the researchers' role (Gearing, 2004).

Researchers' Role

All researchers in the current study had clinical experience in geriatrics, and four had specifically worked in NHs (D.P.-C., E.L.-P., R.M.M.-P., P.P.-B.). From the researchers' point of view, NHs are perceived as part of care and can have an impact on residents' relatives. Furthermore, NHs provide scenarios where the relationships between relatives and residents may face certain obstacles (Koplow et al., 2015).

Setting and Participants

Researchers contacted 22 NHs in the municipalities of Madrid, offering them the opportunity to take part in the study. Of these, only two NHs accepted the offer. Purposeful sampling was conducted to gather information from residents' relatives (Carpenter & Suto, 2008). This strategy deliberately selects individuals based on their capacity for providing relevant information according to the research question, as opposed to randomization. Sampling was pursued until information redundancy was achieved, at which point no new information emerged from the data analysis.

Inclusion criteria were first-degree female family caregivers (i.e., daughters, mothers, wives, daughters-inlaw) and second-degree female family caregivers (i.e., sisters, granddaughters, sisters-in-law) between ages 18 and 60, and admissions that had taken place between 2015 and 2016. The degrees of kinship were established following the Spanish civil code (Spanish Government, 2016). Exclusion criteria were other types of relationships with residents, legal tutors without family ties, and hired non-family carers. All residents of family caregivers in the current study were granted a permanent stay in the NH.

The nurse manager of each NH facilitated contact between researchers and relatives. During the face-to-face contact, researchers explained the purpose of the study. In addition, individuals who wished to participate in the study were asked to provide informed consent and permission to record the interviews.

Data Collection

Data were collected over 18 months between 2015 and 2016. Data collection comprised unstructured interviews and material written by participants, such as personal letters and diaries. Unstructured interviews, performed between 1 and 4 weeks postadmission, used the following opening question: “What has been your experience regarding the NH admission of your family member?” Thereafter, researchers listened carefully, noted key words and topics identified in participants' responses, and used their answers to ask for additional information and clarify the content. Researchers also used prompts or probes to: (a) encourage participants to provide more detail (e.g., “Can you tell me a bit more about that?”); (b) encourage participants to keep talking (e.g., “Have you experienced the same thing since…?”); (c) resolve confusion (e.g., paraphrasing something the participant stated); and (d) show researchers' full attention (e.g., “That's really interesting. Please tell me more.”).

Participants were asked to write personal letters or diaries, which were part of the analyzed data. Solicited diaries and letters were used to obtain information from participants in a non-obstructive manner and to capture ordinary events and observations that might be neglected by single-recording methods because participants view these as insignificant, take them for granted, or forget them (Morrell-Scott, 2018; Wildemuth, 2009). From the time of admission, a 2-week period was granted for participants to respond to the same question used in the interviews (Wildemuth, 2009) (i.e., What has been your experience regarding the NH admission of your family member?). This procedure was implemented to avoid affecting how participants conceptualized their responses and perceived events. Participants were asked to write about the lived experience and narrate the most relevant aspects from their perspective. No limits were set regarding length or content of the accounts (Morrell-Scott, 2018; Wildemuth, 2009). The time at which participants were to write was not specified; however, it was recommended they write at least once per day. The accepted format for handing in their written accounts varied according to participant preference (i.e., on paper or electronically) (Wildemuth, 2009).

Interviews were tape recorded and transcribed verbatim. Ten participants were interviewed twice. Repeat interviews were necessary for two participants because of interruptions by other family members. For the remaining eight participants, the first interview exceeded 120 minutes, and was therefore continued in a second interview. Ultimately, a total of 30 interviews were conducted for a total of 41.58 hours of recordings. Thirteen personal letters and two diary entries were collected from participants along with researchers' field notes.

Data Analysis

A full transcription of interviews, researcher field notes, and documents from participants were gathered. Texts were collated to enable qualitative phenomenological analysis (Carpenter & Suto, 2008). Three researchers with experience in qualitative studies (D.P.-C., J.M.C.-P., J.F.V.-G.) analyzed the interview data. Systematic text condensation (STC) is an elaboration of Giorgi's principles (Phillips-Pula, Strunk, & Pickler, 2011), which includes four comparable steps of analysis and implies analytic reduction with decontextualization and recontextualization of data (Malterud, 2012). The four steps include: (a) overall impression of data; (b) identification and sorting of meaning units and codes; (c) condensation of meaning units within each code; and (d) synthesizing contents of condensates to develop descriptions and concepts (Malterud, 2012). Interviews were analyzed separately, with each researcher identifying themes and confluent and diverging issues. In the case of different opinions, theme identification was decided by consensus. No qualitative software was used.

Rigor

Guidelines established by the Consolidated Criteria for Reporting Qualitative Research were followed (Tong, Sainsbury, & Craig, 2007). The data verification method comprised: (a) cross-triangulation involving planning sessions where the qualitative data analyzed by each team member were presented with the objective of reaching a consensus; (b) auditing of materials obtained from 10 randomly selected participants by an external independent researcher; and (c) post-interview and verification by participants (Creswell & Poth, 2018). The participant verification process consisted of providing participants with the analysis of their interviews to gather feedback and comments regarding the meaning of their lived experiences, which was then included in the analysis.

Ethics

This research was conducted according to accepted international standards of the Declaration of Helsinki. This study was approved by the local ethical research committee of the Rey Juan Carlos University. Informed consent was obtained from family members prior to their participation in the study. Participant privacy was maintained at all times.

Results

A total of 20 female family caregivers, with a mean age of 55.35 years (SD = 17.06 years), were included. Seventeen were married, and three were single. No participant withdrew from the study. Participants' sociodemographic data are shown in Table 1.

Sociodemographic Data of Participants

Table 1:

Sociodemographic Data of Participants

Three themes representing female family caregivers' experience of NH admission were identified from the interview questions and letters and diaries: (a) The Value of Experience: Deciding on Admission and Defending One's Criteria; (b) Living on Two Sides of the Same Coin; and (c) Maintaining Contact.

The Value of Experience: Deciding on Admission and Defending One's Criteria

This theme refers to how caregivers, based on their experience of caring, begin realizing the need for NH admission. This decision means having to defend their criteria against opinions voiced by other family members. Thus, caregivers describe how admission is planned, not because of worsening health, but because of lack of capability and knowledge in caring for older adults:

…we didn't have enough time to be with him and take good care of him. This made me reflect on how I was caring for him, and I trusted my experience and my instinct. The time had come to give him the best possible care, via other people who were better prepared.

Most caregivers made the decision to send their family member to a NH because they were aware of the need for more professional care. However, they faced obstacles in the form of other family members' opinions. Caregivers described their surprise at encountering obstacles and difficul-ties at the time of admission, with others questioning their decision, underestimating them, and not considering their experience or the time they dedicated to caring for the older adult:

I didn't understand anything, to care for him I was the only person in charge, and everything depended on me, my decisions, and now, what's happened? Everything I say is questioned, my experience, my care, my opinion was no longer valid…what's it to be?

One caregiver described how family members questioned her decision, whether it was in support of or against admission to the NH, by using a “voting system” as a way to make decisions, without considering her experience:

It didn't matter what I thought, it didn't matter that I had been caring for him for 10 years, the decision was taken cold-heartedly, among everyone, now everyone wanted to voice their opinions, they wanted to avoid conflicts among siblings, it didn't matter what was best for him.

Another caregiver described a contradictory situation, in which the family took a vote and she disagreed with the outcome:

Nothing made sense, my recommendations or advice didn't matter, whatever was decided, I had to continue either caring for the person or managing the admission process and continuing the follow-up. Although I didn't like it or I had voted against everything, as I was the partner, that's what I had to deal with.

Living on Two Sides of the Same Coin

Caregivers described how they experienced conflicting perspectives of the same phenomenon regarding the admission process, like two sides of the same coin, in three situations: (a) feelings and emotions experienced during admission, (b) their relationship with the family and the responsibility of care before and after admission, and (c) establishing new relationships with nurses at the NH.

Caregivers described feelings of guilt, sadness, and pain, as well as freedom, tranquility, relief, peace, and success at the time of admission. They described how some feelings are partly based on knowing that their relative is going to receive better care, but at the same time, they feel they are abandoning their family member:

…when she was first admitted, I couldn't accept it, but then I felt relief and a sense of peace, I knew she would be well taken care of and I could finally rest. I don't regret it…but on the other hand, you can't avoid feeling that you are abandoning her, as if you ask yourself if you could have done more….

In addition, most participants realized their relatives were going to be well provided for, although they had doubts about the new living environment:

On one hand, I know that he's well taken care of, with nurses 24 hours a day, and in contact with people his own age, but I don't know…other residents are mad, it's like a psychiatric hospital, and in the end they all seem to be in a wheel chair or using walking sticks.

Caregivers described feeling certain they have done what is correct, of knowing their own limits, and that once a certain point is reached, it is better to not force care to avoid hurting their family member.

Caregivers also described how the experience of living on both sides of the same coin applies to their relationship with the rest of the family as well. They know their family needs them to take care of the older adult, whether he/she is in a NH; therefore, whatever the caregiver decides, and whether she accepts the decision made by everyone, the result is the same—she has to keep being responsible for everything:

It doesn't matter how you look at it, from one point of view or the other, it is always going to be up to you. You are the carer and that's all. Nobody remembers that you have a life, aspirations, or needs. It's up to you and that's that.

Many women acknowledged that although being in charge of their relatives' care makes them feel needed and important, it also makes them feel cheated and used, as if they are only important for caring and not making decisions. They feel they are the hands and heart of care, but are not allowed to be anything else.

Caregivers described how, although they accept that there are professionals in charge of caring for their resident family member, they also perceive that they are still responsible for some aspects of care. This responsibility is the reason why caregivers wanted to get to know the professionals who were taking care of their family member and establish new relationships and contacts to participate and continue with care. Most participants described their relationships with nurses and other nursing staff as close and affectionate. Families value nurses who provide affection and kindness as well as care:

…when they give him a cuddle, they give him something that can't be seen, but that's very important to him, they give him affection and assurance, it's a way of telling him that they're with him.

Caregivers believe it is key for them to have a role within the NH, as this helps incorporate and integrate the care of the older adult within the NH. They described how their participation may help during interventions with professionals, as well as improve working conditions via their complaints or suggestions to the NH director:

They are always in a hurry, there are very few nurses, not enough for everybody. It's not possible to work like that and we had to speak to the manager. If they're well, my father will be well.

Maintaining Contact

This theme refers to caregivers' need to continue to be in touch with their family member who has been admitted to the NH. It was important for them to be present daily and on important dates (e.g., birthdays, parties), as well as be part of any health follow up, medical consultations, and administrative tasks. Many caregivers described that they cannot avoid this involvement, as after so many years it is integrated in their daily routine:

I have tried, but it is impossible. I get up at night and in the early morning, thinking about what medical appointment he may have or what paperwork needs to be done with his insurance, or whether this or that… then I have to stop to think and remember that he is in the nursing home and that there are probably people taking care of these things, but now, this habit is difficult to change from one day to the other.

Participants described how they try to maintain contact through all available channels: visits, telephone calls, mobile applications, and organized outings. When participants cannot maintain contact and have to decrease the frequency of their visits, they feel uncomfortable and that they are not fulfilling their responsibility: “I like to visit her every afternoon. If I can't, I feel bad, uncomfortable, as if I'm failing her, as if I'm not pulling my weight” (R18).

Many participants described how the “time invested” with their family member who is in the NH is a sign of quality and sincerity between the person who cares and the one who receives the care. They related that “accompaniment” is a necessary element of care. If they are not accompanying their relative, they do not care. “Being in touch” is perceived as a differentiating element of good care:

There are people who say that they care [about my parents] but they don't even show up at the nursing home, and then here I am, who is willing to sacrifice my time in the home. That is what it is all about, sacrificing a part of [your time] to be with the person you love.

Being in touch may explain why one half of participants evaluated their own care and involvement in terms of the amount of time spent and number of visits made:

I can't help it, I feel better if I go three or four times a week. It's as if I'm doing my duty as a daughter, although they're here and not at home with me.

On occasion, conflicts arise among family members due to the fact that contact with the resident is perceived by relatives as an “indicator of interest,” and a competition is established between family members to see who spends the most time at the NH:

Whenever I fail to visit my parents, my sister and brother-in-law take the opportunity to rub it in my face. Please! They don't turn up for months at a time. I love my parents and I don't have to spend all day with them.

This “competition” or type of visit generates negative feelings in the caregiver, as she considers the time spent to be insincere accompaniment. This insincerity is especially true regarding outings with the entire family. Participants described how, on occasion, family meetings can be counterproductive for residents, as conflicts may arise among family members (e.g., fighting about who spends the most time with the resident) or the resident because his/her decisions are not being respected:

On occasion, we go out with my brother and, at the end, we continue doing the same thing, all the family makes decision for him, nobody listens to him. In the end it is a family moment, but not for my brother. It is as if he were a trophy and they are taking him out to be shown around, but truthfully, they don't think about him. That's why I don't like them taking him out. If they want to see him, they should come to the home.

Some participants described how they are “possessive” regarding care and that they must allow themselves to “let go” to share the resident and spend time on their own lives:

My father tells me that I am very tiresome and possessive, that I should stop coming, that it's okay for him to be alone sometimes, that I must do my own thing, and my thing doesn't mean always being at the nursing home.

Discussion

The current study results show how caregivers, based on their experience, seek NH admission for their relatives because they are no longer able to provide the care that is needed and how they must justify and defend this decision to the entire family. Previous studies (Hainstock et al., 2017; Mendez-Luck et al., 2017) have shown how caregivers identify states of pre-fragility, decline, and worsening in their relative, which forces them to begin to manage a move to a NH (Hainstock et al., 2017). Caregivers do not believe the care given in NHs can substitute the quality of care provided by family, but in certain situations, it is necessary to accept the limitations of the care that they are able to provide, even though this may cause conflict within the family (Mendez-Luck et al., 2017). This conflict can be explained by the fact that family members expect female caregivers to provide all necessary care in any given circumstance, despite not having professional training in caring.

During the transition from home to NH, participants described different and contradictory experiences. These findings are in line with previous studies, which reported family reactions of guilt, sadness, anger, remorse, abandonment, and frustration (Dorell & Sundin, 2016; Jacobson et al., 2015) and feelings of loss of control (Jacobson et al., 2015). These reactions can be explained by the family's sense of “social duty” toward the older adult (Koplow et al., 2015), as NH admission is sometimes considered abandonment of this duty (Dorell et al., 2016). The current findings indicate that certain feelings of guilt or regret may be related to the quality and quantity of care given to the older adult before admission, although no previous studies have been found to support this finding. This social duty may be explained by “familism,” which is present in Spanish, Italian, (Casanova et al., 2017), and Mexican cultures (Mendez-Luck et al., 2017; Mendez-Luck et al., 2009). Familism is defined as a multidimensional construct made up of core values such as strong family identification, mutual support, attachment, family obligation, and familial interconnectedness (Mendez-Luck et al., 2016). Familism is considered a key factor in explaining family roles and obligations, such as child rearing, godparenting, surrogate grandparenting, and caregiving for older adults. In a woman's case, it means being responsible for the care of the family and safeguarding and protecting all members (Mendez-Luck et al., 2016; Mendez-Luck et al., 2009).

The current findings show clear differences based on gender regarding the responsibility of taking care of older adults, even after NH admission has occurred. Previous studies have shown that this responsibility falls on women who are socially assigned the role of caregiver (Holmgren et al., 2014; Navaie-Waliser et al., 2002), regardless of their wishes and/or capacity (del Río-Lozano, García-Calvente, Marcos-Marcos, Entrena-Durán, & Maroto-Navarro, 2013), with a direct impact on their health and opportunities for personal development (Juratovac & Zauszniewski, 2014). This responsibility is also based on stereotypes and beliefs regarding the social obligations and duties of women (Berg & Woods, 2009; Brea et al., 2016; Palm, 2013), which may explain why NH admission often involves a sense of relief (i.e., liberation, tranquility, and peace) in family caregivers. The authors of the current study believe these results must be interpreted as a response to female caregivers' process of adaptation and acceptance of NH admission of the family member. Hainstock et al. (2017) described how caregivers go through three distinct phases: (a) precursors to transition; (b) preparing to transition into NH care; and (c) post-transition. In each phase, caregivers show different responses to NH admission.

The current findings reflect a positive evaluation of the relationships established between relatives and nursing staff and highlight the affection and companionship toward residents. Previous studies (Dorell et al., 2016; Ryan & McKenna, 2015) showed that close contact helps meet family expectations. Nurses are professionals who establish relationships with residents based on close and continuous contact, and for caregivers in the current study, this proximity equated to accompaniment, which they believed to be essential for good care. Previous studies (Mendez-Luck et al., 2016; Mendez-Luck et al., 2009) have described how accompaniment is an important element of care provided by informal caregivers.

Previous studies (Bauer & Nay, 2011; Bollig et al., 2016) also indicated that family involvement in the care of residents improves relationships with nurses, promotes good communication, and eases the adaptation process of older adults. Furthermore, reducing the uncertainty regarding roles and responsibilities of relatives after admission prevents conflicts with nurses (Ryan & McKenna, 2015). Caregivers need to know and establish limits in terms of caring for the resident (i.e., knowing what they can do without interrupting or affecting the care provided by nurses). Thus, previous studies (Davies & Nolan, 2006; Hainstock et al., 2017) have shown that caregivers experience a caregiver journey, where female caregivers adjust and adapt to new caregiving responsibilities and a new caregiving role within NHs. In contrast, other studies (Dorell et al., 2016; Dorell & Sundin, 2016) reported that families avoid engaging with nurses or communicating complaints regarding the care received due to the repercussions these may have on residents.

The current results support previous studies (Davies & Nolan, 2006; Jacobson et al., 2015; Powell et al., 2018; Stephan et al., 2015) that highlight the need for caregivers to keep in touch with the resident and continue to accompany him/her in the NH, collaborating with nurses and monitoring the care received within the NH. Furthermore, caregivers continue to manage many of the resident's needs, such as financial paperwork, medical appointments, payment of bills, and the purchase of clothing and shoes (Hainstock et al., 2017). The presence and continuity of the caregiver within the NH is a way of helping the resident adjust (by avoiding feelings of loneliness and facilitating the interaction with other residents and professionals), as well as helping the caregiver him/herself by accepting his/her role in the NH and reducing feelings of lack of control (Jacobson et al., 2015).

The current findings coincide with previous findings (Dorell et al., 2016) in that families continue to maintain ties with older adults, although certain factors such as the physical condition of residents (O'Shea et al., 2014), work duties, and conflicts between family members can affect the quantity and length of visits (Fjaer & Vabø, 2013). Fjaer and Vabø (2013) explained how nurses manage conflicts between family members via the development of stress management and coping strategies that help relatives overcome and adapt to the new situation. The current researchers believe that conflicts within the family can be explained by the presence of different meanings or expectations regarding their role and the responsibilities of each family member, before and after NH admission. In this sense, there may be family members who were never involved and delegated to the caregiver, but after NH admission hope to assume a new role and responsibility. On the other hand, caregivers who were responsible for all care needs prior to NH admission, and continue to bear this role and responsibility, may develop conflicts because of a clash of expectations.

Limitations

The current study has some limitations. The reasons for NH admission (e.g., care needs, caregiver respite, absence of resources) can influence caregivers' experiences. However, participants did not view the reasons for admission as relevant, as this aspect was not important to the study purpose. Nonetheless, it will be necessary for future research to explore the experiences of caregivers according to reason for NH admission.

Clinical Nursing Implications

The current results serve to improve the relationships among female family caregivers and all parties involved in the decision-making process for NH admission of an older adult. To integrate the perspectives of female family caregivers, family members, nurses, and managers, NHs should consider implementing an admission process that includes a comprehensive plan for family caregivers, considering the broad range of aspects (e.g., type of NH, culture, values) involved in this process.

Conclusion

Caregivers' experience of NH admission is perceived with a certain duality, akin to two sides of the same coin, in terms of their emotions, relationships with other family members, and the need to delegate care to NH staff. Ultimately, caregivers continue to be close to the resident, providing physical accompaniment and performing certain tasks and care duties.

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Sociodemographic Data of Participants

Participant IDAge (Years)Marital StatusFamily RelationshipReason for Seeking Nursing Home AdmissionTime Since Admission (Weeks)
R157MarriedDaughterLong-term care4
R253MarriedDaughter-in-lawLong-term care4
R342SingleDaughterCaregiver burnout1
R436MarriedDaughterCaregiver burnout4
R575MarriedWifeLimitation or absence of financial resources2
R643MarriedDaughterLong-term care3
R762MarriedWifeLong-term care3
R855MarriedDaughter-in-lawLong-term care4
R935MarriedDaughterCaregiver burnout1
R1048MarriedDaughterLong-term care2
R1142SingleDaughterCaregiver burnout2
R1274MarriedSisterLong-term care2
R1380MarriedWifeLong-term care2
R1425SingleGranddaughterLimitation or absence of financial resources4
R1552MarriedDaughter-in-lawLong-term care2
R1683MarriedWifeLong-term care3
R1776MarriedSisterLimitation or absence of financial resources3
R1877MarriedWifeLong-term care4
R1943MarriedDaughterLimitation or absence of financial resources3
R2049MarriedDaughterLong-term care4
Authors

Dr. Palacios-Ceña is Professor, Older Adult Nursing Specialist, and Director, Research Group of Humanities and Qualitative Research in Health Science, and Dr. Martínez-Piedrola is Professor and Occupational Therapist, Department of Physical Therapy, Occupational Therapy, Rehabilitation and Physical Medicine, Universidad Rey Juan Carlos, Alcorcón, Madrid; Mr. León-Pérez is Registered Nurse, Department of Nursing, Fuenlabrada University Hospital, Madrid; Dr. Cachón-Pérez is Professor, Department of Nursing, Universidad Europea de Madrid, Madrid; Dr. Parás-Bravo is Professor, Faculty of Nursing, University of Cantabria, Santander; and Dr. Velarde-García is Professor, Department of Nursing, Red Cross College, Universidad Autónoma de Madrid, Madrid, Spain.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

The authors thank the relatives of the nursing home residents who participated in this study, and Iris Melanie Lucio-Villegas Spillard for translation and revision of the manuscript.

Address correspondence to Domingo Palacios-Ceña, PhD, RN, Professor, Older Adult Nursing Specialist, Director, Research Group of Humanities and Qualitative Research in Health Science, Department of Physical Therapy, Occupational Therapy, Rehabilitation and Physical Medicine, Universidad Rey Juan Carlos, Office 1056, Avenida de Atenas s/n, Alcorcón, Madrid 28922, Spain; e-mail: domingo.palacios@urjc.es.

Received: August 16, 2018
Accepted: April 02, 2019

10.3928/00989134-20190430-01

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