Participation needs of older adults having disabilities and receiving home care: met needs mainly concern daily activities, while unmet needs mostly involve social activities

Older adults [A] included five women and six men aged 66 to 88 years old, where five
had physical disabilities, five had mild cognitive impairments and one had psychological
difficulties (Table 3). The majority were retired, had 11 or less years of schooling, had two or more health
problems and perceived their health as good to fair. According to their SMAF, they
had most frequently difficulties in their instrumental activities of daily living
(Table 3). The caregivers [C] were nine women and two men aged 55 to 90 years old, including
six spouses, were mostly retired and had a good to excellent self-perceived health.
Healthcare providers [H] were mostly women, with 15 to 16 years of schooling and 4
to 32 years of clinical experience with older adults (Table 3). In addition to having been or currently being followed by a home or a mental healthcare
provider, four older adults received help with bathing, three attended to a day centre
and two benefited from a voucher program (direct allocation for personal assistance
services or long-term domestic help at home).

Table 3. Characteristics of participants (n?=?33)

Perceived needs

Almost every older adult had participation needs identified for at least one daily
and social activities (Table 4). Regarding daily activities, five to eleven older adults had at least one specific
perceived need in each domain. Among the eleven triads, a median of ten and eleven
participants reported needs respectively in nutrition or fitness, and personal care,
housing or mobility (Table 4). One participant who lived with Parkinson disease, talking about his wife preparing
his meals, mentioned: “I limit myself a lot. […] I could do more but she’s always
there ahead of me so I don’t do it” [A10]. Many older adults had a hard time sleeping,
as illustrated by this healthcare professional: “The times he said he didn’t sleep
well were because he was a bit more worried” [H04]. Fitness, particularly physical
exercises, was an issue for the many of participants, as recognized by this man who
had chronic obstructive pulmonary disease: “I should do more because I notice that
when I don’t, I go downhill. I’m really disheartened about it” [A04]. Also, cognitive
fitness stimulation was often required, as acknowledged by this healthcare professional:
“She would benefit from the day centre, the stimulation of being with people; we know
all the advantages of being with other people” [H03]. Regarding personal care, including
body hygiene, dressing and taking medication, all older adults had perceived needs,
sometimes because of environmental barriers or personal issues: “She can’t get into
the bath by herself because of her knee. She has fallen in the past and now she’s
afraid” [C05]. The majority of older adults had difficulties in expressing their needs,
as illustrated by this daughter who had to read in her mother’s mind: “My mother never
complains, we have to guess” [C03]. Choosing a home where to live in the event older
participants lost their caregiver or home care support generated worries. For example,
this older woman questioned herself about her future home without her husband: “He’s
with me all the time. If he passes away—he’s 90 years old—what will I do? I shouldn’t
think about that. I’m 90 years old. I’d have to go into a home. And I haven’t chosen
one yet” [A01]. Losing his driver’s license made transportation a major issue for
this older man: “[…] losing my freedom. Before I could go out anytime and do anything
I wanted: go to a show, visit a museum, whatever. […] I can’t do that anymore” [A08].

Table 4. Participation needs and their fulfillment identified by any one of the following participants:
older adult, caregiver or healthcare provider (n?=?11)

Concerning social activities, nine to eleven participants of the triads perceived
needs in each domain principally in community life (11), leisure (10) and responsibilities
(10) (Table 3). Most of the time personal and financial responsibilities required an intervention.
This clinical file excerpt described this older woman’s difficulties with managing
her money, compensated by her daughter: “She’s able to write a cheque but needs help
with her banking. Her daughter has a bank power of attorney and goes to the bank to
get money for her” [File 05]. According to this daughter, supporting her mother in
having relationships with friends was important: “It’s clear that having a friend
[…] would help” [C03]. The need to take part in group activities was frequently mentioned
by participants, including from this health professional: “Maybe she [the older adult]
would need more activities inside her residence. Something realistic, that would interest
her… improve her general well-being and get her out of her apartment. Social contacts,
also, would be interesting” [H11]. As reported in this man’s clinical file, despite
having a limited physical endurance, older adults still wanted to be engaged in sports
activities: “He would like to go fishing in a few weeks” [File 04]. Specifically,
older adults needed stimulation to stay involved in leisure, as this nurse specified:
“She is apathetic, she needs to be stimulated to do activities. We need to find out
what her main interests are and check with her if there are any interesting activities
in the residence. Or even outside, going out with paratransit” [H09].

Met needs

Fulfilled needs were mainly about personal care, nutrition, housing, some responsibilities
and fewer community life activities (Table 4). Even though needs were identified in both daily and social activities, most fulfilled
ones concerned daily and less frequently social activities. Specifically for daily
activities, personal care was the most fulfilled domain with a median of eight older
adults having met needs over eleven triads, followed by nutrition and housing. Needs
in meal preparation were mostly responded by external human resources as noticed here:
“The couple hires a cook to prepare their meals and the husband reheats them. The
caregiver prepares side dishes. She [wife] says she is satisfied with her meals” [File
01]. As he had difficulties with his mobility, this older man’s needs regarding doing
the groceries were compensated by his caregiver: “I used to go with my wife to do
the grocery shopping. I helped her. But now she does it all because I don’t take any
chances. […] in case I fall and hit my head” [A07]. Needs related to personal care,
such as hygiene or dressing, as well as housekeeping were the main focus of healthcare
professionals. According to this case manager, optimizing the older person’s participation
in activities involved to pay more attention to basic activities of daily living rather
than instrumental activities: “I don’t see why we would ask him to expend more energy
on housekeeping, at the risk of being exhausted, so that he doesn’t have any energy
or physical capacities to take care of himself. Activities of daily living are what
we must focus on for autonomy and participation” [H08]. To compensate difficulties
and meet needs in housekeeping, services were mainly allocated by caregivers, community
resources or HSSC, as reported in the clinical file of an older man with visual impairments:
“He receives 2.5 h of direct allocation per week to help with household chores. His
wife does the dusting” [File 02]. However, this social worker mentioned the risk of
overcompensation in such context: “He is in a residence where everything is paid for
and anticipated by the person in charge, which is not bad in itself but it doesn’t
help people maintain their capacities or autonomy” [H06]. For this caregiver, who
lived with her husband, the needs for transport were generally satisfied: “For my
groceries, I have my employee who has her own car. If we need to go to the doctor
or go shopping for something, we use paratransit” [C02].

Moreover, needs for social activities were rarely fulfilled, especially for activities
of community life and interpersonal relationships domains of participation (Table 4). Nevertheless, a median of five participants had fulfilled needs in the responsibilities
domain. Hence, most needs related to personal and financial responsibilities were
fulfilled by caregivers as mentioned by this woman who assumed her husband’s personal
choices: “We don’t share [decisions] like we used to. I make all the decisions, I
take charge of everything” [C08]. In that other case, the older man’s needs to go
shopping were compensated through respite periods, which allowed his wife to realize
this important activity in community: “If I don’t have time to get groceries and run
errands during the week, I do it those days. And I take a couple of hours to go shopping
for him” [C07]. Finally, this older man described having relaxing activities, which
he did mostly by himself at home: “I love to read and watch television. I also have
my flowers, which I water. I have a green thumb” [A05]. However, needs to participate
in leisure were generally more rarely satisfied.

Unmet needs

Older adults’ unmet needs mainly involved leisure, fitness, community life, interpersonal
relationships and mobility (Table 4). First, for participation in daily activities, fitness and mobility needs were mostly
unmet, respectively for a median of nine and seven older adults. Specific support
was needed to help older adults have a healthier diet, as reported by this caregiver:
“We would have liked to have somebody to prescribe—to make her, even though you cannot
make someone—prescribe something to help her eat less” [C09]. The HSSCs often do not
have nutritionist personnel. Therefore, needs related to healthy eating were mainly
unmet, as this nurse explained: “Patients are not all seen by dietitians; we see some
with problems swallowing and some who are undernourished, who eat very little and
lose a lot of weight” [H09]. This other older woman expressed an important unmet need
about going to the restaurant, due to limited accessibility of the environment: “What
I would ask for would be to have more [help] to go eat at the restaurant once or twice
a week” [A01].Sleeping problems were generally identified, as this caregiver acknowledged
in regards to her husband’s complex breathing problems: “He always had trouble sleeping.
But now he sleeps during the day. He wakes up often in the night. He has sleep apnea.
He went to see someone. They tried a device at night but he wasn’t able [to breathe].
So he doesn’t have anything” [C10]. Needs to perform physical exercises in order to
keep as fit as possible were generally unsatisfied. For example, this older man, interested
in cycling, expressed needs for some adaptations considering his visual impairment:
“I’d like to go bike riding in the summer. At my own speed… Maybe I could get a three-wheeled
bike” [A02]. Cognitive stimulation, important for the older adults and their caregivers,
remained unmet, as mentioned by this caregiver whose mother had memory problems: “Sometimes
she can call me five or six times about the following week, until it’s over. It’s
harassing, sometimes. I know she’s a bit bored and I can see that it bothers her”
[C05]. Another caregiver identified unmet needs related to the older woman’s difficulty
expressing her needs: “If she were more stimulated in communication. But for the moment
I can’t think of any service that offers that” [C11]. This older man explained how
going outside was a challenge mostly because of his physical conditions: “I’m unable
to walk backyards anymore with the operations I had. I’d take regular walks, but I
won’t walk unnecessarily unless I get lost. I plan where I want to go so I walk as
little as possible” [A02].

Then, many of the unmet needs were about social activities (Table 4), particularly regarding leisure and community life that concerned, respectively,
a median of ten and nine older adults. Needs about family relationships and friendships
were most of the time unfulfilled. As recognized by this caregiver, family relationships
were often limited: “We live to be too old [laughter]. So both of us are mostly alone,
the family is not big” [C02]. This other older adult described the difficulty to have
opportunities for and to be involved in his community: “I’d love to go but no one
[that I know] wants to organize anything. We are too old to do it” [A04]. This son
explained that having more social contacts and doing group activities could help his
mother, but such needs were rarely fulfilled: “Perhaps being in more contact with
other people would help her want to get better or feel better. More contacts, something
to get her out of the house […], something that makes her want to live rather than
suffering from aging and boredom” [C11]. Others, such as this older man, described
the challenge of having unmet needs in sports activities: “I feel… I feel stuck. […]
A prisoner. Because, before, we used to go swimming and all that, but now neither
of us can do anything” [A11]. Interestingly, the mental healthcare provider gave specific
attention to unmet needs about leisure activities: “What dissatisfies him the most
is that there aren’t any activities at the residence. There are no social, fun or
recreational activities” [H06].