What do family members really want or need when older adults transition to a nursing home? Although research over the past few decades has examined this transition, exploration has mainly included the reasons for placement, emotions experienced by older adults and their family members, as well as the process of adjustment to nursing homes. Supports needed/wanted by family members during this transition are not adequately examined.
Broadly speaking, the transition into a nursing home, as well as up to the first year of placement in a nursing home, is stressful and fraught with emotions for older adults and their family members. Older adults may experience sadness, anger, loneliness, betrayal, and fear (Brandburg, 2007; Heliker & Scholler-Jaquish, 2006; Wiersma, 2010). Family members have expressed experiencing strong yet ambivalent emotions, including sadness, grief, guilt, anxiety, and relief (Kao, Travis, & Acton, 2004; Reuss, Dupuis, & Whitfield, 2005).
Despite emphasis on factors leading to the decision to place older adults in a nursing home, the emotions experienced by older adults and family members, and phases of adjustment, little information exists about what types of supports family members want when helping older adults transition and adjust to nursing home placement. Although reports exist of formal programs that aim to assist family members in the initial time after placement, such as one that offers counseling to decrease depression in caregivers of newly admitted older adults (Gaugler, Roth, Haley, & Mittelman, 2008), research examining the supports that family members need in this transition is sparse.
To address this gap, the current study was conducted to examine the types of supports family members want/need in the transitional period of admission up to 6 months after entry.
In analyzing the data, four themes emerged: (a) importance of talking about the newly admitted family member, (b) recognition of the psycho/social/spiritual aspects of personhood, (c) honoring the unique physical care needs of each individual, and (d) attention to the environment to support older adults' personhood.
Importance of Talking About the Newly Admitted Family Member
When asked about supports received when their family members entered a nursing home, participants replied “none” or mentioned having talked briefly/occasionally with a nurse, social worker, or welcome coordinator. When asked what type of supports participants would have liked to receive, they consistently mentioned conversations or meetings with staff. All participants noted the importance of having a one-on-one meeting with a professional in the facility, or a care conference with the interprofessional staff, shortly after admission to the facility rather than waiting 6 weeks. It was also suggested that care conferences be repeated every 3 months, even if the number of professionals in attendance was fewer than the initial conference. These discussions or meetings were desired to describe their family members and needs, and make suggestions for how staff could facilitate the transition. The support wanted by family members was the knowledge and evidence that the older adult was and would be treated with respect and receive care that was individualized according to his/her needs. One participant explained:
I would have liked an initial meeting to say, “This is what this looks like, this is where he's going, this is how it runs here…. What sort of supports do you think he will need in order to have a smooth transition?”
Beyond initial information about the goings-on in the facility, the participant wanted the initial meeting to describe what supports would help her family member rather than what supports she would personally need. Another participant spoke appreciatively of one professional who answered many of her questions in the first 3 weeks. She then proceeded to comment how this professional helped her understand that nursing homes generally do not recognize the individual. Although this participant appreciated the staff member's help, she was upset that the uniqueness of her mother was not recognized in the care received. Another participant was distressed by the lack of attention given to her father. She had provided the staff with “his whole life story of what is important to him, and…sent it to them.” She wanted staff to understand the type of man her father had been—one who had been competent and in control, and now was seemingly unacknowledged, his personhood unrecognized.
Recognition of the Psycho/Social/Spiritual Aspects of Personhood
The importance of recognizing and valuing the psycho/social/spiritual aspects of the older adult was mentioned frequently. This recognition and value included using the older adult's name, rather than pejorative terms such as “mama,”and involved honoring the individual's intelligence even if he/she was cognitively impaired. One resident's daughter commented:
They'll talk to me, but they won't even look at Mom. It's like she's nothing. And I know she has dementia…and maybe [the staff are] jaded now, maybe they're overworked and understaffed, but, it's just like, it's just so basic…basic human respect. If one person would [just] say, “Hi, Gertrude.”
The significance of supporting the spiritual aspects of the older adult was also mentioned. Spirituality included church attendance or involved the creative expressions of personhood, such as art or reading. The daughter who lamented that older adults are not treated as individuals spoke about her frustration that “these places (nursing homes) are forgetting the soul and the spirituality possibilities for people with physical and mental challenges.” She linked spirituality to a part of personhood and as an expression of that personhood, explaining:
So, my personal values are “you're an individual first, no matter who you are or what you are…” and so…Mary paints…. She's a watercolor artist, even though she's blind…and right now it's horrible…. They did give me a place to put her painting table. It's outside the room, and the other residents tend to mess it all up….
Although the daughter expressed concern about her mother's painting table being “messed up” by other residents in the facility, she was grateful that her mother could continue this talent and expression of her personhood despite blindness and living in a nursing home.
Honoring the Unique Physical Care Needs of Each Individual
How physical care was delivered was tied to the personhood of admitted family members. Physical care and the need to honor individuals' personhood was linked to recognizing individual differences among residents, as well as the negative influence of LTC routines/protocols on their well-being. Regarding honoring individual differences in care, participants spoke about the physical differences of residents, as well as the need to vary approaches to provide care to those with dementia. For example, one participant spoke about her husband's deficits related to a stroke:
…and John has left-sided neglect. I don't know how many of them have figured that out. So his perception is really off. So he comes in his wheelchair and tries to turn and sit, but the left side does not exist, so he probably starts turning here, so this guy gets really annoyed because he thinks he is taking his space and I just…I don't think it is up to me to explain to Bill, [to] explain left-sided neglect, but I don't think anyone else knows.
Several participants spoke about the challenges faced by older adults with dementia when receiving care, which at times resulted in them resisting care, such as when showering or an incontinence product needed changing. Providing such care resulted in multiple staff members needing to manage the older adult, with the family member feeling exasperated and frustrated, as one participant explained:
Well, one day they had to change him [the older adult] because he's incontinent, and he had a bowel movement, and two of them are in the bathroom with him, and I stayed out by the bed, you know, and out of the way. I mean, I have changed him like that myself, too, many times. And…all of a sudden, she comes out and she [asked], “Can you come in here?” And I [asked], “Okay, what do you do when I'm not here?” I said, “I cannot be here all the time!”
One staff member responded, “It takes five of us to do this.” The participant added, “But I've watched them, depending on who it is, talking to him, holding his hands, like, it does take two of them, all right, I admit that.” The participant observed that if an effective approach of individual staff members was used, less staff were necessary because the older adult was less agitated. Presumably, the approach used by some staff members allowed the older adult to feel safer, and thus, his sense of personhood was protected.
Institutional routines/protocols were viewed by all participants as antithetical to valuing personhood. Protocols for showers and bedtime were problematic for older adults. More importantly, staff enforcement of these protocols resulted in older adults responding with anger and fear, as noted by one participant: “You know, it had to be, if 9:00 was there, they had to have that shower. You know what I'm saying? They were too regimented, and especially for them and other people, too.”
According to participants, strict adherence to routines/protocols, as well as timeframes for these protocols, negatively impacted older adults' autonomy.
Attention to the Environment to Support Older Adults' Personhood
The LTC facility environment was important to participants, and included the physical environment and staffing issues. Space, or lack thereof, was viewed as dehumanizing. One participant mentioned the environment resulted in the “depersonalization” of residents. Several participants also referred to the lack of space in residents' rooms, with one saying, “You know, it just doesn't seem fair…that you have expectation to basic level of privacy, which is not to put your head down on a pillow 12 inches from a stranger.”
The participant was not specifically referring to a lack of room space for her mother, but rather how privacy is violated by a lack of personal space, which also resulted in older adults not being able to personalize their new home. One participant explained:
He's in a room much smaller than this room [the interview room], with another person sharing. No room for a computer, which is one of the activities he enjoys. He does have his television, [but] there are problems in his room…[including] his roommate [who] has urinary incontinence—the room smells so bad the grandkids won't come.
The participant, who was also a nurse and understood the challenges in institutional environments, further remarked, “This is his home for the rest…well, until something else comes up. It makes me so sad to think that that's what he has been given.”
Participants frequently raised concerns about the lack of consistency in care providers. This lack of consistency was difficult for older adults and problematic for family members. One participant stated:
And they change the staff every week. It's so hard; he's a routine person. That would make his settling in so much easier if he could get some consistency. It just astounds me just how often there are strangers, so you can't get any groundwork. But every time the staff changes, he has to go through this whole thing again, until they kind of know, “Oh, this is what he likes.” And I thought there would be more of that here because the patients stay here a long time, so I thought that the staff would get to know him well…but it seems like that it's been, almost, they've [gotten] to know him less.
Beyond exposing the frequent staff turnover in nursing homes, it also demonstrated the need for family members to remain vigilant in terms of orienting and re-orienting staff to the admitted older adult.
Discussion and Implications for Gerontological Nurses
The current findings underscore the importance of acknowledging the personhood of newly admitted older adults during the transitional period, as well as for their family members. Although participants did not speak about the importance of person-centered care (PCC) (Kitwood, 1997), their continual references for the need of their admitted family members to be treated as individuals indicates the importance of PCC. The beginning weeks and months after admission often “set the stage” for the ensuing years in a facility. In examining the data, implications emerged for the individual and family, staff and management, and the environment.
Individual and Family
Acknowledging the individual and family includes addressing residents by name rather than pet names (Hirst, Lane, & Reed, 2013). In addition to individualizing care, acknowledgment involves recognizing and honoring individuals' strengths, preferences, and interests. Acknowledgment is crucial because personhood and meaning in life are connected to expressions of self (Lane & Reed, 2017). Facilitating interests, such as hobbies and other expressions of self, are fundamental in supporting the personhood of older adults.
Without support of personhood, the losses of the individual and his/her family compound; there can be chronic sorrow (Weingarten, 2012). When an individual's condition—health-wise and in his/her ability to perform meaningful activities—is diminishing, his/her sense of self can decrease. It may not be possible to arrest deteriorating health (and resulting fears), but if the resident can continue to be meaningfully involved with others and in engaging activities, the potential for overwhelming chronic sorrow may be able to be contained (Haugan, 2014).
It is crucial for family members to have meaningful contact with staff and management early in the transition. Providing a care conference within the first 2 weeks of placement, or a smaller team meeting where family members can offer information about the older adult, is vital. Time is needed to discuss more than medical needs—to include elements of the older adult's person, including psychological needs, interests, and goals. Meetings should occur every several months (Norheim & Vinsnes, 2012).
Staff and Management
Although staff in nursing homes may believe that they provide PCC (Mueller, Misiorski, & Ortigara, 2016), older adults do not necessarily perceive that their care is person-centered (Donnelly & MacIntee, 2016). In part, the regimented routines/protocols of LTC facilities can hinder staff's ability to provide care that honors residents' preferences (Viau-Guay et al., 2013), such as when to shower. Facilities must be adequately staffed and ensure a quality work environment so that staff can genuinely know patients.
Management support has been shown to be effective in promoting PCC among front-line staff (Rokstad, Vatne, Engedal, & Selbaek, 2015; Rosemond, Hansen, Ennett, Schenck, & Weiner, 2012) and results in greater staff well-being (Willemse, De Jonge, et al., 2015). Management support includes promoting meaningful relationships between staff and older adults, which results in greater well-being in older adults (Willemse, Downs, et al., 2015).
Staff and management must facilitate the ability of older adults to engage in meaningful activities. Engagement in meaningful activities does more than pass time—it fosters personhood and greater quality of life (Edvardsson, Petersson, Sjogren, Lindkvist, & Sandman, 2014; Hunter, Hadjistavropolous, Thorpe, Lix, & Malloy, 2016).
Nursing homes must construct greater space in shared rooms, as well as accommodate personal furniture and possessions. Objects such as furniture or televisions are expressions of personhood and facilitate the transition into LTC (Marshall & Mackenzie, 2008). Nursing homes should provide space for older adults to engage in their hobbies or expressions of self (e.g., painting).