Nurses’ Encounters With Older Adults Engaged in Self-Neglectful Behaviors in the Community: A Qualitative Study

Abstract

Objective: Alongside clinical tasks and decision making, there is a growing awareness of the emotions that arise during nurses’ interaction with clients and its significance in relation to meeting the demands of one’s role. This study aims to delve deeper into the experience of community care nurses’ encounters with older adults engaged in self-neglectful behaviors. Method: In-depth, semistructured interviews were conducted with 22 experienced nurses in Israel, who worked with older adults engaged in self-neglectful behaviors in the community. Results: Three main themes emerged: “Everything is amplified in old age”: An age-related decline in functioning produces situations of self-neglect, Self-neglect as an experience imprinted on the nurse’s work: The struggle for treatment, and “What is our role here?”—Nurses’ obligations in cases of self-neglect. Conclusion: The complexity of older adults engaged in self-neglectful behaviors results in feelings of confusion and ambiguity regarding the nurses’ role.

Keywords

nursing community health self-neglect old age qualitative research

Nurses encounter medical, social, and mental health phenomena in their work, including older adults’ self-neglect. The encounter with self-neglect emphasizes vulnerability in old age: living with poor health and hygiene, and potentially life-threatening personal and residential conditions. The prevalence of this phenomenon is continually growing with the increase in life expectancy, thus presenting nursing staff with greater coping challenges (Dong, Simon, Mosqueda, & Evans, 2012). Nurses, among other help professionals, are on the front line when it comes to detecting, intervening with, and preventing the phenomenon (Day, 2015). Within the nursing context, alongside the carrying out of clinical tasks and decision making, there is a growing awareness about the range of emotions nurses experience while interacting with these clients, as part of their role (Hayward & Tuckey, 2011). Moreover, when the encounter involves violence, abuse, and neglectful behaviors, it might also influence nurses’ everyday interventions (Goldblatt, 2009). These emotional, cognitive, and behavioral influences take a significant toll on community care nurses’ encounters with adults engage in self-neglectful behavior. Therefore, it is important to study their related experience and perspectives and better understand how these influence the nurses’ performance regarding this particular phenomenon. The purpose of this article is to explore the experiences of community care nurses who encounter older adults engaged in self-neglectful behaviors, and the implications this phenomenon has on the nurses’ personal and professional lives.

Self-Neglect Among Older Adults

Self-neglect as a phenomenon has been received a large attention during the last decade (O’Brien, Thibault, Turner, & Laird-Fick, 2000). In their comprehensive review, Pavlou and Lachs (2006) described over 10 different definitions that were adopted over the years in research studies and/or articles. Common to all the definitions were behavioral manifestations of squalor, neglect of the home, and lack of concern for personal hygiene alongside the refusal to receive assistance or support. Other researchers (Clark, Mankikar, & Gray, 1975) attempted to describe and characterize the phenomenon and coined the term Diogenes syndrome. Other studies were focused less on medical-psychiatric models and more on social-functional models pertaining to loss of functioning, and their researchers adopted the term social breakdown syndrome (SBS). This describes elder self-neglect in social terms, manifest in such behaviors as hygienic neglect, squalid living conditions, and general refusal to receive help (Gruenberg, Brandon, & Kasius, 1966). Other terms that appeared at the literature included indirect self-destructive behavior and passive suicide (O’Brien et al., 2000).

The common definition of self-neglect is the unwillingness to receive basic medical treatment, lack of concern for one’s basic life needs or a lifestyle choice that includes a neglected external appearance, poor health and nutrition, and squalid living conditions (which might include hoarding) to the degree of becoming an environmental nuisance (Day & Leahy-Warren, 2008). Self-neglect was found to be prevalent among older adults, especially among those with poorer health status, a low socioeconomic level, and low levels of physical and cognitive functioning, such as Alzheimer’s disease and other forms of dementia (Caspi, 2014). For example, recent studies estimated that 17% of older adults in the Chicago Health and Aging Project (Dong et al., 2012), and 2 million cases in the United States, generally in 2003 (Dong et al., 2011), involved self-neglect. It is, however, still difficult to estimate the exact incidence of the phenomenon because the above figures most likely represent only the “tip of the iceberg” (Dong et al., 2012; Iris, Conrad, & Ridings, 2014).

Several theoretical explanations for understanding the phenomenon have been introduced throughout the years. One focuses on the psychology of the individual and deals with analyzing personality patterns. This medical-psychological approach claims that self-neglect is derived from mental, physical, and social disturbances (Abrams et al., 2002; MacMillan & Shaw, 1966; Meehl, 1962; Ungvari & Hantz, 1991). According to this approach, latent personality disorders are manifested as self-neglect, due to the losses and stressors that accompany old age. In recent years, psychiatric explanations such as these have received support from empirical studies that have found significant associations between depression, reduced cognitive capability, episodic memory, perceptual speed, and self-neglect (Abrams, Lachs, McAvay, Keohane, & Bruce, 2002; Dong et al., 2010; Dong et al., 2011; Roepke-Buehler, Simon, & Dong, 2015).

The second approach focuses on the social contexts. From a social-cultural perspective, Lauder, Anderson, and Barclay (2005) claimed that the social context of self-neglect reflects the society’s values about domestic and personal cleanliness and hygiene. Researchers, such as Wringley and Cooney (1992) and Whitehead (1975) and Clark et al. (1975), adopted the life course perspective the disengagement theory and continuity theory, focusing on life prior to the emergence of self-neglect in old age. A qualitative study by Bozinovski (2000) supports this theoretical approach to some extent. These studies found that self-neglect is a result of giving meaning to this way of life through continuity and protection of self-identity (Band-Winterstein, Doron, & Naim, 2012; Bozinovski, 2000; Shibusawa & Padgett, 2009). A more recent study has suggested a conceptual model that combines physical, psycho-social, and environmental aspects of older adults’ self-neglect (Iris, Ridings, & Conrad, 2010).

While the phenomenon of self-neglect among older adults is known in Israel (Band-Winterstein et al., 2012; Doron, Band-Winterstein, & Naim, 2013), the national survey that addressed elder abuse and neglect in older adults (Lowenstein, Eisikovits, Winterstein, & Enosh, 2009) did not include self-neglect; therefore, there is no estimated prevalence or evidence-based practice studies.

The consequences of self-neglect for older adults might be as severe as (if not more severe than) the consequences of abuse (Choi, Kim, & Asseff, 2009). This phenomenon is linked to higher morbidity and mortality rates (Dong et al., 2009). Nevertheless, until recently, the phenomenon was the subject of limited research and theoretical conceptualization (Burnett et al., 2014; Day, Leahy-Warren, & McCarthy, 2013; Lauder, Roxburgh, Harris, & Law, 2009). Up until now, theories relating to self-neglect have usually dealt with medical–psychological aspects or social–cultural aspects.

Helping Professionals’ Encounter With Older Adults Engaged in Self-Neglectful Behavior

The encounter with the phenomenon of self-neglect concerns two dimensions that might influence the helping professional. First, self-neglectful behavior might challenge the professionals’ attitudes and feelings and raise questions about their own behavior in their personal lives, as well as in their everyday professional encounter (Band-Winterstein, Goldblatt, & Alon, 2014; Häggblom & Möller, 2006). The second dimension relates to old age and issues connected to deterioration and end of life. This dimension might promote ageist perceptions of older adults as disabled, mentally impaired, and senile (Rees, King, & Schmitz, 2009), evoking emotions such as fear of loneliness and death, helplessness, and rejection toward the client. Alternatively, they might increase professionals’ emotional involvement and compassion (E. B. Palmore, 1999). Research on nurses’ encounter with elder self-neglect has been scarce (Johnson, 2015), although some prior studies have explored the related subject of elder abuse and neglect (e.g., Band-Winterstein, 2012).

Professionals’ difficulties in coping with older adults engaged in self-neglectful behavior may stem from either the older adults or the professionals themselves. Some older adults live alone and lack social and family support systems. Moreover, the phenomenon of older adults engaged in self-neglectful behavior includes their refusal to receive professional treatment; these older adults sometimes even become a health–environmental nuisance. This may turn the encounter into a serviceable problem, on the one hand, and a challenge, on the other hand (Band-Winterstein, Doron, & Naim, 2014).

Professionals, however, are not always sufficiently aware of the characteristics and etiology of older adults’ self-neglect and the relevant interventions (Lauder et al., 2005). Another potential difficulty is how the professionals define the phenomenon. While welfare professionals focus on self-neglect’s social and ecological aspects (Band-Winterstein et al., 2012; Doron, Band-Winterstein, & Naim, 2013), medical professionals refer to cognitive and psychiatric aspects (Dyer et al., 2006). For many years, nurses used the medical model of older adults’ self-neglect and self-care theories in nursing (Orem, 2001) as a basis for understanding older adults’ self-neglect. They attributed high levels of psychiatric, psychological, or medical disorders to older adults who engage in self-neglectful behaviors (Lauder, 1999).

Emotion regulation and ethical decision making

Interpersonal interactions in everyday life are accompanied with a variety of emotions, and particularly critical in social behavior (van’t Wout, Chang, & Sanfey, 2010). It has been claimed that emotions is intrinsic and not antithetical to a rational ethical decision process, thus it should not be ignored or avoided (Gaudine & Thorne, 2001). The recent literature on emotion regulation emphasized on humans efforts to control emotion experiences (Gross, 2002). It seems that decision effects attributed to acute emotions may be mediated by emotional regulations strategies; furthermore, it is possible that different regulation strategies could have different decision implications (Heilman, Crişan, Houser, Miclea, & Miu, 2010). A systematic understanding of the role of emotion in the decision process preceding the arousal encounter suggested by Gaudine and Thorne (2001) relates to “cognitive-affective” model. This model emphasized on two dimensions of emotions (affect and arousal), integrated with Rest’s (1994) four components cognitive developmental model of ethical decision making.

Treating older adults’ self-neglect is perceived as emotional labor, defined as “the management of feeling to create a publicly observable facial and bodily display” (Hayward & Tuckey, 2011; Hochschild, 1983). Whereas studies and clinical reports focus on the physical aspect of nurses’ work, the emotional aspect is either taken for granted or poorly addressed (de Castro, 2004). Moreover, nurses are generally expected to perform emotion regulation (Grandey, Fisk, & Steiner, 2005), specifically regarding settings of self-neglect, which involve difficult and complex emotions and sensorial experiences, due to the appearance of the phenomenon and the refusal of the older adult to receive treatment (Prouty, Thomas, Johnson, & Long, 2001). The encounter with older adults engaged in self-neglectful behaviors might evoke professionals’ personal sensitivity related to their personal experience (Band-Winterstein et al., 2014; Goldblatt, 2009). Therefore, management of emotions (e.g., emotion regulation, reflecting a lack of authenticity and dissonance and adaptive functions of emotions) is of crucial importance in the multilayered caring roles of nurses’ everyday work (Hayward & Tuckey, 2011). Intervention in this field calls for professionals to be aware of their attitudes and emotions in general, as well as their different reactions to the encounter with older adults engaged in self-neglectful behavior in particular (Mattison, 2000).

Thus, emotional regulation and behavior play an active role in decision making of professionals when encountering different lifestyle choice. Emotional regulation strategies that health care providers use in everyday routine effects both the clients’ and the providers’ wellness. This study focused on community care nurses’ experience and their emotional regulation in their encounter with the phenomenon of older adults’ self-neglect. The complexity of the phenomenon has its implications on the nurses’ personal and professional worlds. The research questions were as follows: How do nurses experience older adults engaged in self-neglectful behaviors? How do they perceive the phenomenon? How are nurses’ perceptions of self-neglect manifest in their professional and personal lives? How does the nurses’ experience influence their work practices and intervention with this population?

Method

A qualitative study inspired by the phenomenological tradition was conducted. The descriptive power of this approach enables an in-depth understanding of this complex phenomenon (Sokolowsky, 2000). This approach is useful for studying sensitive topics, which involve self-disclosure by the participants (Dickson-Swift, James, Kippen, & Liamputtong, 2007). In the present context, the sensitive topic was the impact of the encounter with older adults engaged in self-neglectful behaviors on nursing staff and private life domains.

Participants

The study used a purposive sample of “information-rich” informants (Patton, 2002). Participants were experienced professional nurses, involved with older adults engaged in self-neglectful behaviors in the community, both with and without cognitive impairments. Older adults’ self-neglect was presented as a phenomenon that community care nurses deal with on a daily basis. This broad presentation helped portray the interpretive perceptions of the participants.

The sampling criterion was professional nurses who had at least 2 years of experience in the area of geriatrics. The actual sample included 22 Israeli registered nurses aged 24 to 67 years (average: 39.9 years), a total of 20 women and two men with work experience ranging from 1 to 30 years (average: 14.9 years; see Table 1), recruited from community agencies, such as local public clinics (health management organization [HMO]). The initial inquiry was to the clinics, which provided the nurses’ contact details. Thirteen participants had BA degrees and nine had MA degrees.

Table 1.

Socio-demographic characteristics of participants.

No.	Name	Gender	Ethnicity	Age	Tenure	Workplace
1	T	F	Jewish	45	25	HMO
2	M	F	Jewish	30	10	HMO
3	N	F	Jewish	47	26	HMO
4	A	F	Arabic	24	1	HMO
5	B	F	Jewish (Russian)	29	2	HMO
6	G	M	Arabic	29	7	HMO + hospital
7	L	F	Arabic	31	9	HMO
8	Hh	F	Jewish	37	6	HMO + nursing home
9	Mp	F	Jewish	35	6	HMO
10	Ah	M	Arabic	45	20	HMO
11	Hs	F	Arabic	47	24	HMO + hospital
12	Z	F	Jewish	67	30	HMO
13	E	F	Jewish	28	5	HMO
14	Nn	F	Jewish	42	20	HMO
15	S	F	Jewish	54	30	HMO
16	HG	F	Jewish	32	7	HMO
17	Ap	F	Jewish	45	13	HMO
18	La	F	Jewish	44	25	HMO
19	Bz	F	Jewish	54	27	HMO
20	Ag	F	Jewish	42	14	HMO
21	Ml	F	Jewish	31	6	HMO
22	Sa	F	Jewish	39	15	HMO

Note. HMO = health management organization.

In Israel, the role of nurses in the community includes preventative and intervention treatment (e.g., examinations, treatments, guidance, follow-up and home visits, and health promotion). This requires the nurses to have general medical knowledge. The clients and their families need to be proactive, call for the nurse to visit, and are responsible for routine treatments, such as taking one’s medication. The agency—and the nurse as its representative—provides reasonable resources such as follow-up, home visits, taking blood pressure and doing blood tests.

Data Collection

Initial approval by the agencies enabled the researchers to interview the participants based on a letter of intent, together with a brief description of the study. The University of Haifa’s institutional review board approved the study. The participants first received a brief explanation of the general research aims, after which they voluntarily agreed to participate and have the interview audio-taped; they also signed an informed consent form. They were then interviewed individually. The interviews were conducted by nurses studying to complete their BA degree. Prior to this, these students underwent a training and reflection process (Finlay & Gough, 2003) to gain insights about their personal background, attitudes toward and opinions about old age, and about how they identify themselves in relation to the participants. As a result of this process, the interviewers gained self-awareness, which enabled them to focus on the participants’ experiences (Finlay & Gough, 2003). First, the participants completed a demographic questionnaire and participated in an in-depth, semistructured interview that lasted approximately an hour and a half. Each interview was tape-recorded and later transcribed by the interviewers. In the findings report that follows, participants’ names were changed. Because the study had no funding source, the participants were asked to volunteer their time. They agreed to stay in their workplace after finishing their work shift for the purpose of conducting interviews. Because the topic was of great interest to them, the number of refusals was minimal (two people).

The final number of interviews (22) was determined by theoretical saturation (Clandinin & Connelly, 2000). Saturation was achieved by the recurrence of identified themes. As suggested by Morse (2000), the interviews were conducted until no new themes or subthemes emerged from the data during the initial coding process (open coding), which was undertaken simultaneously with the data collection process. In this case, after 22 interviews, the obtained data were rich enough and deep enough to achieve saturation (Morse, 2000). Although phenomenological research studies usually need fewer participants, this is based on conducting several interviews with each participant (Morse, 2000). Because professional nurses are very dedicated to their work and short on time, only one interview was conducted with each participant, which explains the relatively high number of participants required for theoretical saturation.

The semistructured interview guide covered four domains: professional encounter with the phenomenon, nursing staff interaction with the older adults engaged in self-neglectful behaviors, personal aspects of the nurses’ lives regarding their encounter with self-neglect, and possible future interventions.

Data Analysis and Trustworthiness

Data analysis was performed manually, according to the phenomenological method. First, for bracketing (Gearing, 2004) purposes, I reflected on my personal experiences, biases, and prejudices regarding this phenomenon, as qualitative research is a shared product of the researcher−participant relationship, as well as the meanings attributed by both sides to the phenomenon under study (Finlay, 2011; King & Horrocks, 2010). This reflection is one way to achieve trustworthiness (Band-Winterstein et al., 2012; Finlay, 2011).

Second, I read each interview to become familiar with the text. In the next reading, the process of horizontalization began by finding statements about the participants’ experiences with the phenomenon. Horizontalization refers to making elements in a situation equal and then distancing the situation, in order to view it objectively (Bentz & Rehorick, 2008), for example, identifying perceptions about aging and self-neglect. The third step involved grouping the statements into units of meaning, including quotes to describe participants’ experiences and perceptions. The fourth step involved identifying emerging themes by shifting from descriptive to interpretive levels of analysis (King & Horrocks, 2010). Adherence to this procedure enhanced the study’s credibility (Lincoln & Guba, 1985).

The interviewers (nurses studying to complete their BA degree) performed initial coding. Data (unit of analyses and the themes) were organized based on themes identified in participants’ narratives together with the interviewers (King & Horrocks, 2010). As the primary researcher, I kept my interpretive notes separate from the descriptive narratives. Thus, it was assumed that the core themes that emerged were derived from the participants’ experiences, rather than from my own a priori perceptions. In addition, I shared the data with a colleague, a practitioner holding a PhD, who manages nongovernmental organization programs for the prevention of elder abuse and neglect. She also simultaneously analyzed all of the data. Disparities in interpretations were discussed, and agreement regarding theme content and interpretation of meaning was sought. Adherence to this procedure enhanced the study’s credibility (Lincoln & Guba, 1985). For validation purposes, interviewers shared the findings with three participants who showed interest. They agreed with the findings, expressed deep empathy, and stated that the findings helped them to better reflect on the phenomenon of elder self-neglect and prioritize it as an important item on their professional agenda. For the purpose of this article, the materials were translated by a professional translator who is acquainted with this topic

Findings

Three major themes emerged from the data analysis: (a) “Everything is amplified in old age”: An age-related decline in functioning produces situations of self-neglect, (b) Self-neglect as an experience imprinted on the nurses’ work: The struggle for treatment, and (c) “What is our role here?”—Nurses’ obligations in cases of self-neglect.

“Everything Is Amplified in Old Age”: An Age-Related Decline in Functioning Produces Situations of Self-Neglect

All of the nurses in this study perceived a strong link between old age and self-neglect. They believed that old age influences both body and mind. This perception was described in different manners such as: old age leads to despair, depression, cognitive impairment, giving up on oneself, reduced self-esteem, and a lack of meaning in life, which expresses ageist perceptions. Lisa (4 years’ experience) said,

Everything is amplified in old age; there’s this exhaustion. Old people have a weak spot. They are less healthy, which can lead to despair and it’s hard for them to take care of themselves. They are retired, and so have less employment, and fewer goals and ambitions . . . they are often alone . . . they don’t have anything to live for . . . If there is no supporting environment, the older person often feels despair and [a sense of] abandonment, and then you see a situation in which he probably says to himself: “If others don’t care, then neither do I.”

This nurse compares old age to other stages in life. She observes that as old age brings changes related to health, family, social status, and occupational status, older adults are perceived as desperate, unemployed, and unmotivated. This perception of old age enables accounts and explanations for older adults’ self-neglectful behaviors.

The next quote illustrates giving up on oneself in the context of reduced functioning:

People who were once highly functioning, and whose functioning was important to them . . . when they see a decrease in functioning, even a small one, it’s really frustrating for them. This then leads to deeper thoughts of: “If I can’t do this, then I won’t take my medicine and all the things that reduce the side effects of aging” . . . In this manner, they slowly give up on who they once were. (Aline, 22 years’ experience)

Aline emphasizes the decrease in functioning among older adults without cognitive deterioration, which occurs during the aging process as a central influence on the older adult’s mind and identity. According to her, this means the aging process has such dramatic consequences that the person is no longer the same. The person they were in the past has no place in their present existence, which paves the road to self-neglect.

The strongest expression of self-neglect is reflected in “having had enough” of life and wishing to end it:

I remember an old lady (without cognitive deterioration) who was fed up with living, fed up of being taken care of; she refused every treatment. Every time I visited her, she told me straight out that she wanted to die, that God had forgotten her . . . she barely wanted to eat and drink, didn’t want to wash or take her medicine . . . Self-neglect is the first step towards suicide, they simply destroy their body . . . simply begin to commit suicide. (Eve, 5 years’ experience)

This nurse describes the link she perceives between self-neglect and the desire to end one’s life. According to her, for these older adults, self-neglect is a way to leave the world once they become weary of life. The phrase “God had forgotten her” emphasizes the individual’s willingness to end her life. Stopping to take one’s medicine, avoiding washing, eating just a little or nothing at all, all serve to disrupt the physiological systems and are perceived as an extreme form of self-neglect. The nurse perceives this as a way to commit suicide. Whereas healthy older adults might choose this course of action, others may neglect themselves because of health and cognitive disabilities. Heidi (6 years’ experience) and Tina (10 years’ experience) described this as follows:

Disease might be a cause for self-neglect. In the progressive stages, his state deteriorates . . . There also are mental illnesses, such as dementia and depression . . .

Dementia . . . appears in many people and starts out as a form depression. In depression, there is always dementia; I don’t know why, but they always come together.

The nurses mentioned the deterioration of health, including cognitive decline and depression, as a source of self-neglect. They described a scenario that leads to self-neglect as part of the illnesses related to old age.

Self-Neglect as an Experience Imprinted on the Nurses’ Work: The Struggle for Treatment

The encounter between nurses and older adults engaged in self-neglectful behaviors is associated with extremely difficult and incomprehensible experiences and situations, which evoke a wide range of emotions. These emotions affect and challenge the nurses’ professional and personal lives:

You smell the house even before you’re inside. I can’t tell if it’s mold, bad food or the person himself. I felt like I was in another world, the house was a big mess; I just wanted to run away, but I tried to keep myself together. I worked with a mask and two pairs of gloves. You can’t forget that . . . When I started taking off the bandages, I saw a huge pressure ulcer that gave off a strong odor . . . I thought I was going to pass out or vomit. I went outside. (Goldie, 7 years’ experience)

This powerful encounter with self-neglect immediately stimulates the senses. The nurse describes the mixture of unpleasant smells she encountered during a home visit. The older woman was identified as having a mild cognitive decline. She was overwhelmed by the odor, the untidiness and filth, and the older adult’s physical condition. She was unable to perform her professional duty and had to step outside.

The next participant describes the encounter as a complex experience:

I will never forget her fingernails; they had started to curve. She was difficult to deal with; the only thing she would accept was insulin . . . I remember the nausea I felt when extracting the maggots from her wounds. I will never forget her screams; it was heartbreaking. She was in terrible pain when I touched her wounds, but there was no choice . . . I had to explain and convince her to receive treatment every time . . . I also felt sorry for her; I think she felt rejected, even ashamed. I will never forget her tears when I removed the maggots; she was as red as a tomato. (Alice, 6 years’ experience)

The nurse’s experience is multisensory and consists of feelings of repulsion because of the woman’s appearance and her physical state, and simultaneous feelings of pity. The experience was imprinted on the nurse’s consciousness and memory. Unlike the previous nurse, Alice struggled to treat the older woman, even “begging” her to allow her to do so.

The next quote illustrates another nurse’s struggle:

You experience mixed feelings. I feel compassion and empathy and try to talk to him. When there’s no response, I feel angry. I sometimes feel as though I’m going to choke, in the metaphorical sense; [I feel it] in my throat, the tears in my eyes, like a weight on my heart . . . I sometimes leave with a sense of having missed something, the sight of neglect hurts me; I often feel frustrated, as if I’m fighting against the wind . . . the stronger the feelings, the stronger is my will to help him and treat him the best I can. (Margaret, 6 years’ experience)

The phenomenon of self-neglect among older adults produces a strong emotional reaction in this nurse. Moreover, it arouses a range of positive and negative feelings. Margaret’s struggle to provide the proper care, in the face of the older person’s refusal, brings not only frustration but also a feeling of “choking.” This metaphor expresses the essence of the situation: the condition of the older person, the refusal of treatment, and the nurse’s pain from the humanitarian perspective. Another metaphor, “fighting against the wind,” highlights the effort needed in her struggle to change the situation of the older adult engaged in self-neglectful behaviors.

Not giving in to the client and insisting on treatment are also illustrated in the next quote:

I deal with the situation gradually, never lightly or impulsively. First, I digest and internalize the situation and understand the processes that led the person/client to be like this, and then I plan out courses of action . . . Actually, in the end, when I see the results of my intervention, it makes me very happy that I succeeded in changing something. So, it starts with pity and ends with happiness. (Jane, 7 years’ experience)

This moving quote describes the struggle to provide treatment as affecting both personal and professional domains. Jane utilizes/employs emotional and professional resources to solve the problem. She tries to understand the big picture regarding the client’s condition. At this point, she adopts actions that seem appropriate and successful. The effort bears fruit, and her happiness is both personal and professional.

The struggle to treat the client also penetrates the nurses’ private domain:

After treating an older adult who engages in self-neglectful behaviors, I often bring my anger and frustration home with me. I come back physically and mentally exhausted. Supporting a person/client who won’t help himself demands a lot of mental energy. The anger and pity involved in every case of neglect . . . I start thinking of my family. . . . I think of my future. . . . Is self-neglect a result of dependent or independent factors? (Debbie, 2 years’ experience)

The difficult sights and the experience do not leave the nurse and continue to resound in her personal life. She describes the personal and mental resources involved in the treatment, which lead to a sense of compassion, fatigue, and emotional burden. Moreover, the professional encounter raises questions about the essence of the phenomenon, uncertainty, and worries about her own future and that of her family as older adults, and the possibility of living in self-neglect.

“What Is Our Role Here?”—Nurses’ Obligations in Cases of Self-Neglect

The encounter with older adults engaged in self-neglectful behaviors and having to cope with the refusal of treatment pose ethical and moral dilemmas related to the nursing role. The central dilemma relates to the older adults’ right to choose how to live their lives versus the nurse’s wish to “help” by choosing what they think is best for the older adults, and the nurses’ obligation to perform their professional duties. The starting point is to first detect the older adults’ competency level and their ability to care for themselves, as described by Anna (22 years’ experience):

As health professionals, we have the responsibility to make sure the older person receives adequate care. If the person is independent, we check his competence level. If he is not competent, we arrange for someone to take care of his needs.

The nurse emphasizes her primary duty: to assess and treat the older adult who self-neglects and resists treatment. The following quote illustrates a critical approach to the professional’s intervention and interference:

Self-neglect is no less important than other types [of abuse], but I think it arouses less empathy because [in this case] it’s not that the older adult is powerless against the abuser and needs rescuing by society. Here, the situation, and thus our role, is more complex; they have autonomy over their body and we have no right to interfere. The older adult is both the abuser and the abused, so what is our actual role here? (Agnes, 14 years’ experience)

In the case of victim and abuser, the power relations are straightforward and the nurse identifies with the victim. In the case of self-neglect, however, the older person is simultaneously perceived as both the abuser and the abused. In this complex situation, the need to preserve human dignity and freedom raises questions about proper care. The older adult’s wishes must be considered, on the one hand, and measures must be taken to ensure adequate and dignified living conditions, on the other. This leads the nurse to contemplate his or her role. The next quote illustrates this perception:

I understand that these people are mostly independent and have experienced a thing or two in life, and have consciously chosen neglect . . . this is their way of coping with this stage of life. I’m here to serve them and respect their wishes, even if they seem irrational and outrageous [to me]. So yes, because I serve the system and it’s important to notice things like a lack of medical treatment or self-neglect that can be fatal, I try to combine the real and honest wishes of the older adult, as long as they are competent. I want to help them maintain a certain standard of living for themselves and, [at the same time], prevent them from committing a crime against themselves. (Bella, 27 years’ experience)

Bella is aware of the dilemma of choosing a way of life versus risking life. She respects the older adults and their rich life experience and the fact that they have made a conscious choice about how to live, ignoring the fact that some of older adults engaged in self-neglectful behavior may suffer from cognitive decline. Thus, she minimizes her role and her influence on their decisions, even if it is “irrational and outrageous.” Nonetheless, she understands that part of her role is to limit and draw a line, in terms of intervention: she will intervene when she perceives the older adult’s life to be at risk. In her view, the point at which they are “committing a crime against themselves” is the boundary between the older adult’s choice of a way of life and a “suicidal” act.

On the other end of the continuum are the professionals who consider intervention as an obligatory part of their role:

The psalm that always gives me the shivers is: “Do not cast me away when I am old; do not forsake me when my strength is gone.” The way I see it, if the older adult gives up on himself, we mustn’t let go of him; so, I continue to pay house calls. The worst thing is seeing nurses who distance themselves from their clients. (Agnes, 14 years’ experience)

According to Agnes, the value of human dignity is expressed in the phrase: “Do not cast me away when I am old,” emphasizing the human obligation not to ignore or neglect older adults’ conditions/situations and to care for their basic needs, even when they are perceived as weak and dependent. Moreover, self-neglect is unacceptable. Therefore, as a professional, this set of values guides, encourages, and motivates her to continue caring for the older adult engaging in self-neglectful behaviors, even if he has “given up on himself.” She criticizes professionals who choose to avoid treating these older adults and adds another value of equality and nondiscrimination in care, which strengthens the previous value.

Discussion

The findings show that, in the context of self-neglect, nurses interviewed for the study mainly perceive old age in negative terms. Old age is labeled as a series of losses: deterioration in health and functioning, the loss of significant others, a retreat from society, and marginalization. The nurses perceive the lives of older adults dichotomously: before and after aging. This dichotomy contradicts developmental theories of human development (Erikson, 1997), which describe old age as a new phase in life in which some life processes continue and others change (Atchley, 1989), and not necessarily as a turning point. Studies define self-neglect as a way of life that accompanies the elderly in old age, increasing the manifestation of neglect (Band-Winterstein et al., 2012; Bozinovski, 2000). However, regarding the nurses interviewed for this study, this phenomenon is a part of old age and is described as a general, passive phase of deterioration. This is consistent with the 1960s’ definition of elder self-neglect as “senile breakdown syndrome” (MacMillan & Shaw, 1966)—an ageist-pathological definition. Ageist attitudes are part of the social constructions in Western societies, including Israel (E. Palmore, 2015), and it seems that some nurses have also internalized these attitudes (Doron & Topaz, 2013). This finding should be addressed with more balanced and accurate evidence-based knowledge about older adults in general.

The linkage between old age, as a source of suffering and self-neglect (Scocco & De Leo, 2002), leads to an optional/additional conceptualization of the phenomenon of refusing to receive care as an expression of being weary of life. A person’s sense of being a burden to others, hopelessness, and a loss of self may contribute to older adults’ wish to end their lives (Kjølseth, Ekeberg, & Steihaug, 2010). The nurses’ perception of older adults engaging in self-neglect as a refusal to receive care, linked to the wish to end one’s life, should be taken into consideration. This concept must be further explored in order to better understand how and why nurses interpret it in this way. This finding offers a different and exceptional look at self-neglect, not previously mentioned in the literature.

Interestingly, the participants in this study focused on the issues of choice and the conscious refusal to receive treatment. However, as the literature shows, many older adults who self-neglect have cognitive impairments, such as individuals in the mid-to-late stages of dementia, who are less able to choose whether or not to neglect themselves (Abrams et al., 2002; Dong et al., 2011; Roepke-Buehler et al., 2015). As the findings show, it seems that for nurses in the community, situations of purposeful self-neglect have a stronger influence on them in their encounter with the phenomenon. This raises the question of how nurses perceive the encounter with older adults who self-neglect and have cognitive impairments—and thus, no awareness or choice regarding their behavior. From a professional ethics perspective, it is important to always assume capacity rather than to assume incapacity because of the chance someone could be cognitively impaired. This issue is directly related to the very definition of self-neglect. Is self-neglect simply a matter of not taking care of oneself, regardless of whether it is a conscious or unconscious decision?

The nurses in the study sample reported a range of feelings and resonances in the personal life domain, stemming from their professional encounter with self-neglect. Findings of previous studies also show that nurses and social workers experience a wide range of emotions in reaction to violence-related content such as anger, helplessness, confusion, and ambivalence (Band-Winterstein, 2012; Band-Winterstein et al., 2014; Doron, Band-Winterstein, & Naim, 2012). The findings demonstrate that nurses do not always maintain a balance between their personal and professional lives because of the emotional burden created by working with self-neglect. The encounter with old age serves as a magnifying glass, whose primary focus is on the nurses’ personal future—their concern about future scenarios containing possible components of self-neglect (Band-Winterstein, 2012; Band-Winterstein et al., 2014).

Despite the nurses’ emotional efforts in their encounter with older adults engaged in self-neglectful behaviors, hardly any research has been conducted and almost no clinical references have been made to the demanding tasks of nurses. The findings show that community care nurses, who are in direct contact with older adults engaged in self-neglectful behavior, describe the emotional and clinical skills and resources they use to handle the phenomenon, and the struggle they undergo in their attempts to provide these older adults with the proper care. They are supposed to conceal the range of negative feelings caused by the encounter, which might lead to emotional labor (de Castro, 2004). To cope with emotional labor, nurses require a high level of emotional intelligence, expressed by self-awareness, self-control, motivation, empathy, and social skills (McQueen, 2004). In the context of self-neglect, nurses should be aware of their feelings and learn to regulate them, to offer the older adults support (McQueen, 2004), and to cope with ethical decision making regarding the various ways of refusing treatment (Gaudine & Thorne, 2001; Heilman et al., 2010; van’t Wout et al., 2010). It is imperative that nurses and other helping professionals reflect on their reactions to situations of self-neglect in old age; otherwise, their emotional baggage might cause them to be less empathic to the older adults. This, in turn, could lead to purely technical care, devoid of emotion, thereby compromising their professional duties and requirements: to see the person behind the mask of aging (Kitwood, 1997).

The consequences of the nurses’ encounter with older adults engaged in self-neglectful behaviors reveal persistence, on the one hand, and accumulated fatigue, on the other. Other studies about elder abuse have suggested the same findings (Band-Winterstein et al., 2014). The emotional burden involved in working with older adults engaged in self-neglectful behavior is described in the literature as compassion fatigue (Austin, Goble, Leier, & Byrne, 2009). The nurses in this study also depict signs of compassion fatigue, such as exhaustion and a sense of helplessness. Nevertheless, these tendencies are balanced out by the nurses’ motivation, and the fact that they find meaning in their role. The metaphor “fighting against the wind” (compared with the social workers’ “Don Quixote” metaphor: Band-Winterstein et al., 2014) shows how deeply the nurses’ professional and ethical values are rooted in their everyday work, despite the difficulties.

Being aware of one’s vulnerability is challenging to nurses confronting these kinds of situations (Goldblatt, 2009). Nurses are expected to care for clients, regardless of their personal feelings and moral judgments. However, an encounter with the phenomenon of self-neglect raises questions regarding both one’s role and required performance: Does caring for older adults include being proactive and initiating detection and assessment or is it limited to “doing”—physically caring for specific conditions (Mcilfatrick, Sullivan, & Mckenna, 2006)? It seems that such insights are significant to the science of nursing and other help disciplines, such as social workers, especially in the context of self-neglect.

The complexity of older adults engaged in self-neglectful behaviors, in the sense that the abuser and the abused are the same person, raises confusion and ambiguity regarding the nurses’ role. Moreover, it demands emotion regulation and ethical decision making (Gaudine & Thorne, 2001). The central dilemma is whether to enforce treatment or let go; both options are motivated by the value of human dignity. The legal and ethical responsibility is unclear in situations where nurses need to simultaneously preserve the older adults’ right to refuse treatment and maintain their dignity (Ballard, 2010; Mattison, 2000; Mauk, 2011). The dilemma whether to save the older patient’s life or respect his wishes is further heightened when the nurse perceives the patient’s self-neglect as a form of suicidal behavior. This dilemma also relates to the detection and prevention of self-neglect against the client’s will, which undermines his autonomy (Lauder et al., 2009). In this context, we should distinguish between honoring the wishes of a capable person and honoring the wishes of a person lacking this capacity, which can be perceived as a form of neglect or abandonment (Naik, Lai, Kunik, & Dyer, 2008). This distinction, insofar as it can be reliably made, is critical.

Practical Implications

Nurses’ encounter with the phenomenon of self-neglect among older adults is challenging, draws on personal resources, and evokes a wide range of emotions. Health organizations should encourage health care professionals to explore their emotional responses as they may confront ethical dilemmas in their workplace (Gaudine & Thorne, 2001). This should be tackled in the personal, professional, and institutional domains (Kitwood, 1997). In the personal domain, reflective processes that enable nurses to more fully understand this phenomenon are highly important for intervention with older adults who engage in self-neglectful behaviors. Reflection enables the nurses to become more aware of their personal and professional involvement with the phenomenon—including prejudices, attitudes, stereotypes, and pathologizing related to older adults who self-neglect. These issues may then be addressed by the bracketing process, which is a method used to mitigate the potential unwarranted effects of unacknowledged preconceptions related to the issue. The first task, then, is to “bracket out” the beliefs so that the professionals can enter the lived experience and attend genuinely and actively to the client’s view (Fischer & Wertz, 1979). In the process of bracketing, the professional doubts the given knowledge and approaches relating to the phenomenon by suspending her or his expectations and preconceptions, experience, and knowledge about the phenomenon (Finlay, 2011; Moustakas, 1994; Tufford & Newman, 2012). This process includes three phases: (a) abstract formulation—refers to the personal orientation standpoint, (b) research/professional praxis, and (c) the reintegration phase: the ability to address and reprocess the above phases (Gearing, 2004). In this context of encountering older adults’ self-neglectful behavior, bracketing is important to reintegrate nurses’ awareness about the dynamics between older adults’ unwillingness or inability to provide for themselves, their (the nurses’) personal orientation, and obligation to care for their clients, as a core element in nursing studies. In the professional domain, nurses should set aside their assumptions and be open and receptive to the client’s situation, needs, and desires. They should not abuse their power in any way or force their preferred course of treatment on the client.

In the institutional domain, there is a need to develop a proper professional climate (staff meetings, debriefings, counseling), which enables the nurses to openly discuss their range of feelings regarding the phenomenon. Staff meetings should include dealing with issues, such as how to approach an older person who engages in self-neglectful behaviors, bridge the contrasting emotions that the phenomenon raises, build the client’s trust so as to create change, determine the proper care for an older adult engaged in self-neglecting behaviors, and separate the professional and personal worlds. It is also important to give meaning to community work with older adults who engage in self-neglectful behaviors. In other words, nurses’ reflection on their everyday interaction in the context of local public clinics may help bridge the gap between the older adults’ needs and the ways in which the nurses can provide services to this unique population.

Footnotes

Declaration of Conflicting Interests

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author received no financial support for the research, authorship, and/or publication of this article.

Author Biography

Tova Band-Winterstein is a senior lecturer at the University of Haifa’s Department of Gerontology. She specializes in elder abuse and neglect, as well as in other topics, and is an experienced qualitative researcher.

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