Background
Aging of populations and increasing prevalence of chronic diseases are two major public health concerns of developed countries [
1]. By 2031, 25 % of Québec’s population in Canada will be aged 65 years or over [
2], the most significant demographic change ever seen in this province. While getting older, 42 % of adults will experience disabilities [
3] that could restrict their participation in daily and social activities [
4]. Aging can also be associated with occurrence of chronic diseases, such as heart diseases, cancer or stroke [
5] and lower quality of life. Furthermore, chronic diseases are the leading causes of death [
6] and of activity limitation [
5] and tend to increase [
7]. In consequence, aging and disabilities are two important challenges that will rise health expenditure and diminish accessibility to healthcare systems [
1]. To face these modern challenges, health policies should enable healthy aging by shifting from a “curative” to a “preventive” paradigm [
5]. Such a preventive approach is fully embodied in successful aging models, which encompass avoiding disease and disability, high physical and cognitive function, and active engagement with life [
8]. Focusing on more positive sides of aging, successful aging goes beyond potential, and involves activity in a multidimensional manner.
To meet the growing needs of older adults having disabilities, social and healthcare systems require innovative and efficient interventions aimed at optimizing their participation in the community, an important modifiable determinant of health and successful aging [
9]. Although there is no consensus regarding its definition, the concept of participation is included in two well-known models: the Human Development Model-Disability Creation Process (HDM-DCP) [
10] and the International Classification of Functioning, Disability and Health (ICF) [
11]. According to the HDM-DCP, participation refers to the accomplishment of daily and social activities valued by a person or his/her sociocultural context. In that model, daily activities include nutrition, fitness, personal care, communication, housing and mobility; while social activities refer to responsibilities, interpersonal relationships, community life, employment, education and leisure (Table
1). Even though this model was not specifically developed in the context of healthy and successful aging, the HDM-DCP provides a clear conceptualization of a person’s life habits and their interactions with other determinants of health and well-being. Moreover, based on a conceptual comparison with the ICF [
12], and as the input of people having disabilities was considered throughout its development, the HDM-DCP was found to encapsulate the concept of participation and especially social participation more accurately. Through a bi-directional interaction between an individual’s characteristics (personal factors) and his/her life context (environmental factors), many links can be made between participation and health promotion models. Accordingly, creating supportive environments, building community participation and developing personal skills are some of the core concepts of the Ottawa Charter for Health Promotion [
13]. More specifically, social activities correspond to the involvement of a person in activities providing interactions with others [
14], consistent with a person’s life expectations [
15], and contribute to an increased perception of health [
16] and delayed functional decline [
17]. Furthermore, being involved in social activities, such as leisure, community life and interpersonal relationships, was shown to be more associated with quality of life than pursuing daily activities [
18]. To improve health and well-being, interventions should target an optimal participation by increasing physical, cognitive or psychological abilities, adapting the activities to enable their accomplishment, or modifying the environment to be safe and supportive [
19]. As such, participation is a central component of an individual’s rehabilitation towards active engagement with life [
11], often targeted by health interventions [
20].
Table 1
Dimensions and definitions of participation in the Human Development Model-Disability Creation Process (Fougeyrollas, 2010)
Daily activities |
1. Nutrition | Habits related to food consumption (choosing foods, food preparation, preparing meals, etc.) |
2. Fitness | Habits related to fitness of body and mind (sleep, naps, physical and mental fitness, etc.) |
3. Personal care | Habits related to physical well-being (hygiene, excretory hygiene, dressing, health care) |
4. Communication | Habits that enable a person to exchange messages with others (oral, sign, and written communication, telecommunication) |
5. Housing | Habits related to individual’s place of residence (lodging, home maintenance, use of furnishing and other household appliances) |
6. Mobility | Habits related to mobility over short and long distances with or without means of transportation (using means of transportation, generally within the immediate environment, such as walking and using a car.) |
Social activities |
7. Responsibilities | Habits related to taking up responsibilities (financial, civil and family responsibilities, such as preparing and respecting a budget, respect for others, civic responsibility and the care of a person, such as children and spouses.) |
8. Interpersonal relationships | Habits concerning relationships with others (sexual activity, affective relationships) |
9. Community life | Habits related to activities within the community (participating in social organizations, such as citizen and social clubs, and in spiritual life and religious practice) |
10. Education | Habits related to individual psychomotor, intellectual, social and cultural development (participating in a training program, etc.) |
11. Employment | Habits related to the principal occupation of the adult individual; usually a paid occupation, but also volunteering |
12. Leisure | Habits related to recreational activities or others practiced during an individual’s free time and within a pleasurable context (sports and games, arts and culture, and socio-recreational activities) |
To foster older adults’ participation, healthcare providers must assess their needs and deliver associated services. By addressing gaps between current and desired conditions [
21], participation needs assessment refers to the identification of restricted accomplishment of daily and social activities [
10]. In Québec (Canada), social and healthcare systems have the legal obligation to realize such an assessment in order to meet the needs of the whole population in their territory (Act Respecting Health Services and Social Services [LSSSS], art. 1). Currently, in each of the 94 local territories of the province of Québec, Health and Social Services Centres (HSSCs) are the authorities responsible for offering accessible, integrated, and continuous high-quality services through health promotion and prevention, rehabilitation and social integration [
20]. Each HSSC operates a local community services centre, a residential and long-term care facility and, where applicable, a general or specialized acute care hospital. As with other long-term and primary healthcare settings in various developed countries [
22,
23], to meet the growing needs of their population, HSSCs must establish partnerships with other resources, including informal caregivers, private enterprises, community organizations and social enterprises [
24]. To properly inform and coordinate their interventions, healthcare professionals must assess the needs of older adults considering the whole range of participation opportunities, including daily as well as social activities. To do so, needs assessment should not only be client-centred, but also include the client’s personal and environmental aspects, organizational factors as well as those related to the service providers [
25].
Although important, little is known about the participation needs of older adults having disabilities and receiving home care. A study conducted among users of a HSSC home care program (
n = 8 434) revealed that only 8 % of reported needs in daily activities were satisfied [
26]. Moreover, in another study involving older adults who had a stroke and their caregivers, psychological needs, such as coping with health conditions and receiving emotional support, were reported to be a priority, but remained mainly unmet [
27]. A qualitative study that aimed to explore perceptions regarding health issues and that was conducted in various Australian health settings showed that persons with chronic illness, as well as their caregivers and health professionals agreed about the complexity of managing multiple health conditions and their impacts on their daily life [
28]. In that study, when patients and caregivers were mainly concerned about their personal experiences and challenges, healthcare professionals mainly focused on their own resources to explain the patients’ reality. Another Sweden qualitative study about the experiences in relation to the participation of older adults living at home and caregivers found that older adults’ goals included performing meaningful activities and routines accomplished independently from other people [
29]. However, these studies mainly addressed daily activities and did not provide an in-depth exploration of the met and unmet needs of participation in daily and social activities. The present study thus aimed to explore participation needs among older adults having disabilities as perceived by older adults themselves, their caregivers and the HSSC healthcare providers.
Discussion
The main purpose of this study was to explore needs related to participation in daily and social activities of older adults having disabilities and receiving home care services from the perspective of the older adults, their caregivers and healthcare providers. The results of this study add new insights to other studies done with older adults with functional decline and living at home, which mainly focused on unmet needs in daily activities [
26,
29] and did not necessarily address social activities. Findings indicated that the perceived needs were identified in all domains of participation, including in basic daily but also more complex social activities. Since successful aging in place involves multiple actors with diverse perspectives [
40], these findings highlight the complexity of older adults’ participation needs and the challenge of properly allocating associated resources [
41]. Results are similar to those of one study conducted among healthy older adults which found that nearly all domains of participation were increasingly restricted with age [
4]. Those mostly restricted were personal care, housing, mobility, as well as community life and leisure activities. In our study, most perceived needs were also related to these latter domains. Other domains such as fitness, nutrition, responsibilities and interpersonal relationships were somewhat not found to diminish with normal aging [
4], while in our study, they were a specific challenge for most of the older adults having disabilities. Therefore, perceived needs that have been identified could be partially explained by aging, but also by the presence of disability. Moreover, a study carried out with people who had a stroke found that participation in daily and social activities, except for the interpersonal relationship domain, was significantly more reduced when compared to normal aging [
42]. In addition, restrictions in participation were found generally greater in social activities of older adults with visual impairments compared to those without such problems [
43]. This further restriction in social activities compared to daily activities was also observed with people having mental illness [
44], mild cognitive problems [
45] and other physical disabilities [
18]. Since older adults aspire to remain socially active throughout aging, despite having disabilities, social and healthcare systems must find innovative ways to reduce social and environmental barriers to their participation.
Many needs revealed in our study involved activities ‘outside’ the house, such as going to the restaurant, walking outside, or being involved in the community. Considering that these more complex activities involve mainly environmental barriers, population health initiatives are being implemented that focus on such factors. For example, the World Health Organization [
46] developed the Global Network of Age-friendly Cities, an important initiative that promotes the importance of maintaining and improving older adults’ participation, no matter their level of capacities. Concretely, this initiative is engaged in informing about activities and existing services, and also integrating new activities adapted to people with disabilities. By encouraging accessible community environments that promote safety, mobility, and flexible and affordable means of transportation, the Age-friendly Cities initiative promotes collaboration and partnership between multiple sectors of local communities. Therefore, as the perceived participation needs of the older adults in our study were explained not just by disabilities but also by aging, such innovations might be particularly interesting.
To promote and improve participation of older adults having disabilities, individual and personalized interventions might be needed to complement such population health initiatives. One example of these initiatives, the Personalized Attendant for Community Integration (
Accompagnement Personnalisé d’Intégration Communautaire; APIC), consists of a community follow-up conducted by a trained citizen [
47]. The attendant is trained to meet with the older adult three hours per week for a year to offer assistance in accomplishing the person’s projects and provide education to adapt activities he/she finds meaningful [
48]. This intervention aims to support the social integration and participation of adults living with disabilities, and is currently being adapted for older adults having disabilities. Among other examples, the Lifestyle Redesign
® intervention [
49,
50] was developed to enhance the health and well-being of community-dwelling older adults through the design of health-promoting and balanced daily routines, as well as participation in meaningful activities. This group and individual intervention stimulates social integration and addresses different themes relevant to older adults (occupations; aging, health and occupation; transportation; safety; social relationships; cultural awareness; and finances). As this intervention is currently being translated into French and adapted for Québec, more research is needed before putting these innovative interventions into practice.
Among the domains of participation, the needs in daily activities, such as personal care, nutrition and housing, were mainly fulfilled, but social activities were more rarely. Such discrepancies question the capacity of HSSCs to identify and fulfill the whole range of the participation needs of older adults having disabilities, including for social activities, leisure and community life. Currently mainly based on the SMAF [
31], home healthcare providers’ assessment of clients’ needs focus principally on daily activities [
51]. Our data pinpoints that the needs the most completely fulfilled include meal preparation, groceries, taking medication and home maintenance. Such focus on basic and urgent in-home activities might bring to an emergency practice context [
52] and oppose to long-term care principles [
53]. These principles involve adopting a community approach within the living environments and are especially relevant with people having chronic health problems and disabilities [
54]. Moreover, it has been shown that priorities established by healthcare providers mainly emphasize the technical management of diseases, while patients’ priorities concern comprehensive care, including self-care support, participation in clinical decisions, and partnership with community organizations [
55]
. The qualitative findings in this study combined the older adults’ perspectives with those of the caregivers and healthcare providers and sought to not underestimate unmet needs, which might be less specific to the fulfilled ones. Given that 90 % of needs are fulfilled by informal caregivers [
56], who are especially important for older adults’ participation in social activities [
29], it is essential to involve them in needs assessment [
53]. The findings of our study regarding the most fulfilled participation needs reveal the importance of assessing needs more broadly and in further details and of paying specific attention to unmet ones.
Resources currently offered to older adults having disabilities might not optimally target activities that are most associated with health and well-being [
18,
57]. Although identified equally in both daily and social activities, needs were mainly unmet in social activities, mostly leisure, interpersonal relationships and community life, and fewer daily activities such as mobility and fitness. These results are consistent with those of two previous studies conducted among stroke survivors which found that most unmet needs are those related to psychological and social aspects, such as community life and leisure [
27,
58]. Both daily and social activities need to be realized in a person’s routine to contribute to health and well-being [
59]. For example, having a good sleep is closely related to the level of energy available for participation [
57] and, in turn, active leisure, group activities or physical exercises can improve quality of sleep [
60]. Given the well-demonstrated benefits of fitness and participation in social activities [
57], the older adult’s unmet needs in these domains are worrisome. Possible benefits of such active lifestyles also include reduced mortality [
61,
62], slower cognitive decline [
62], decreased drug use, reduced use of health services [
63], and reduced depressive symptoms [
64]. As older adults in our study had difficulties in expressing their needs, considering meaning, level of interest and importance of activities could allow a better identification of unmet needs and improving quality of life [
65]. Activities such as leisure or fitness are mostly realized for the person’s own sake and cannot be delegated or compensated without losing the benefit from them [
61]; they allow older adults to not only add years to their lives, but also life to their years. Previous studies also uncovered the importance of meaningful activities and well-being for older adults living at home [
29]. Finally, by improving clients’ empowerment [
66,
67], providing client-centred needs assessment [
51,
65], and developing partnerships with community organizations, older adults’ social needs could be better met.
Implications for practice, research and policy
Considering HSSCs’ legal obligation with their local partners to promote population health and well-being, including helping older adults having disabilities to participate in the community [
20], it is important to assess and meet needs of the persons among their territory, even those who do not actively ask for services. Acknowledging the importance of fully assessing needs for participation in daily and social activities could help HSSCs and healthcare providers to better integrate health-promoting practices and adopt a preventive approach. To do so, preventive home visits [
68] and group interventions [
50] might be particularly helpful in meeting the needs of older adults having disabilities and ultimately enhancing population health and well-being. In addition, older adults’ unmet needs and expectations regarding their optimal participation in society [
15,
54] have to be targeted by the community resources, including the HSSC healthcare providers, community organizations and private enterprises. Accordingly, several interventions are known to be innovative and efficacious in increasing older adults and caregivers’ empowerment in taking care of them independently [
66,
67]. Exploring meaning, interests and importance of activities should be undertaken by healthcare providers through their assessment. Participatory action research could be an interesting option to accompany such a change in practice [
69].
Strengths and limitations
To our knowledge, this study is the first to provide an in-depth qualitative exploration of older adults’ participation needs from their perspective and to merge these perceptions with those of their caregivers and healthcare providers. Rigour was ensured through extensive data collection, constant monitoring of analysis and interpretations, as well as validation of findings with participants following the interviews [
37]. As with other qualitative studies, results are time- and context-sensitive and influenced by the researchers, which were limited by in-depth description of participants’ characteristics and contexts. Triangulated sources (semi-structured interviews, sociodemographic questionnaires, reviews of clinical record) and sample diversification were used to offset further limitation [
34]. Among its limitations, this study included only one HSSC, although typical of such health organizations in Québec, and a limited number of older adults, which all had a caregiver and were known by a healthcare provider. Although employment and education are essential basic rights of people having disabilities, these domains were not considered for the current analysis, since they were not mentioned by the study participants; however, they should be addressed in future studies. Finally, reassuring participants that there were no right or wrong answers minimized social desirability, a potential bias [
34].
Conclusions
This paper provides insights about needs for participation in daily and social activities of older adults having disabilities and living at home, as perceived by themselves, their caregivers and their healthcare providers. Our findings show that perceived needs related to all domains of participation. Daily activities, such as personal care, nutrition and housing, and some social activities, such as managing a budget and going shopping, were generally fulfilled. Unmet needs mainly concerned activities most associated with health and well-being, including leisure, community life, fitness, interpersonal relationships and mobility. To help older adults age in place and be actively engaged with life, healthcare providers must acknowledge the complexity of participation needs and consider people’s unique experiences related to being at home and to their participation in the community. Involving caregivers and clients as partners for needs assessment is essential to produce a more complete needs assessment and reveal comprehensive met and unmet needs. Moreover, considering meaning, interest and importance of activities through a client-centred assessment and developing partnerships with community organizations could help resources to optimally target activities that are most associated with health and well-being. To better integrate resources and meet older adults’ needs, recognizing the contribution of each type of service provider, including community organizations as well as private resources, would also be helpful. Further research is needed to analyze needs related to employment and education and to examine in more depth discrepancies between different actors’ perceptions about older adults’ participation needs.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
PLT was responsible for the study concept and design, analysis and interpretation of data, and drafting the manuscript. ML and NL contributed extensively to the study concept and design, the acquisition of data, the analysis and interpretation of data, and the drafting of the manuscript. AC contributed to the study concept and design, and the drafting of the manuscript. All authors thoroughly revised the manuscript. Supervision was done by ML and AC. All authors read and approved the final manuscript.