Introduction
It is reasonable to hypothesize that older adults living at home with support from home care services (HCS) have a better quality of life (QoL) if their own expressed needs regarding care and service are met. A definition of QoL by the WHO is individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns [
1]. Studies from other areas, for example those living with type 2 diabetes [
2] and pain relief [
3], reinforce that having self-determination regarding decisions about one’s care contributes to QoL. A Finnish qualitative study showed that two thirds (approx. 943 older adults) of a sample of 1405 older adults expressed a desire to pass on before reaching 100 years of age, with 24% stating due to being afraid of losing health, and 10% stating because of fears of losing self-determination [
4]. Based on this, it seems reasonable to hypothesise that increased self-determination among older adults who receive HCS makes up an important part of their QoL.
Self-determination in relation to QoL in HCS has not been widely studied in the nursing literature. Thus, it seems important to expand the knowledge base regarding factors concerning self-determination and self-determination in relation to QoL for older adults. Increased knowledge in this area can help care managers and researchers to develop new interventions that facilitate QoL. This paper extends the available knowledge with regard to self-determination among older people living at home with daily home care and explores whether groups with more as opposed to less self-determination differ in terms of QoL.
Background
Autonomy is often used as a synonym for self-determination but is more closely linked to the idea of individuals taking their own decisions without being influenced by others. This might make it problematic to use the concept of autonomy in connection with a person dependent on help and with decisions taken together with others [
5]. Autonomy defined in another way describes self-determination as a central aspect of autonomy, as the capacity to act and decide in accordance with one’s own free wishes [
6]. Self-determination has also been defined as a process in which a person has control and ethical/ legal rights [
7], and as the capacity to make personal choices, irrespective of the person’s ability to accomplish those choices [
8]. In this paper we assess self-determination, using the Impact of Participation and Autonomy of Older People (IPA-O) (see method section) where the concept of self-determination is used synonymously with decisional autonomy, [
9] meaning the ability to make decisions and to execute choices without external restraint [
8].
Practising self-determination has been shown to have an impact on older adults receiving HCS in several ways and a variety of experiences have been described. Feeling safe, having an opportunity to influence and be involved in decisions [
10], being free to choose and in control of everyday life and having ones’ needs met [
11] are examples of impacts experienced. In contrast, people with little self-determination have described a sense of lack of control, being careful about taking risks, a need to retreat into an isolated world [
12], and insecurity [
13]. Thus, it is reasonable to believe that promoting self-determination will increase overall QoL.
To promote self-determination among older adults, both the policy and organisation of HCS need to confirm their wishes and needs [
5]. For example, suggestions to be incorporated into future care models include having a culture of care that focuses on respect for the older adult [
14], where leaders maintain continuity and work to improve nurses’ attitudes [
15]. To further promote self-determination and a sense of being respected among older adults, staff need to be flexible in their provision of daily care whenever a problem arises [
11], and strive to establish meaningful relationships between the older person, colleagues and leaders within the organisation [
5,
14,
16‐
18]. A trusting and positive relationship is described as meaningful in enabling involvement in daily care and it’s planning [
11,
16,
19], and a positive relationship might motivate the older person to share information about personal issues and wishes [
11,
20]. In contrast, one review [
5] found that organisations which allocated time and care from the perspective of the organisation rather than the older person’s wishes and needs had a negative influence on the self-determination of older adults. In addition, the functional capacities of older adults can impede self-determination [
5]. A Swedish study reported that self-determination among people living at home with HCS support, who were dependent in both P-ADL and I-ADL, showed significantly less self-determination (p⩽ 0.05) than people who were independent [
21].
Both international [
11,
15,
22] and Swedish studies [
23,
24] report limited possibilities for older adults to practice self-determination concerning the content of care in HCS. The international studies [
11,
15,
22] describe older adult’s self-determination as being influenced by, for example, the healthcare staff’s individual working methods and the multifaceted, hierarchical and unpredictable healthcare structure. The Swedish studies [
23,
24] report that the possibilities for older adults to be involved in decisions and to have any real influence over the content of care are limited. This is surprising, because, in the literature, older adults whose expressed home care needs are met have reported significantly higher levels of life satisfaction, lower levels of loneliness and perceived life stress than elderly people whose needs are not met [
25].
There are studies which describe the importance of self-determined decisions for improving QoL regarding care in other areas, such as diabetes type 2 [
2,
26] and, pain relief [
3]. However, to our knowledge, there is no study that explores self-determination in relation to QoL among older adults living at home with support from HCS.
QoL is a broad concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment [
26]. Studies show that QoL among people aged 75 years and older with care needs is not affected by the type of helper [
27] but that social isolation [
28,
29] and the extent of the help influenced it negatively. Among adults aged 75 years and older living at home without home care, it has been found that 85–94% rated their QoL as being good or very good compared to only 64–74% of those living at home and receiving home care [
29]. There is a need of more knowledge regarding self-determination in relation to health-related QoL among older adults receiving HCS [
11].
Rationale
It is acknowledged that preservation of self-determination is very important for older adults to experience good QoL, but to what degree and in what areas people receiving help from HCS experience self-determination is unknown. Searches in databases relevant to the topic of nursing, show that it is essential to practice self-determination and it is reasonable to believe that a greater degree of self-determination influences QoL positively. Few studies have actually explored self-determination as a factor which might influence QoL among older adults living at home with help from HCS. Since the main goal of HCS is to ensure that older adults live a worthwhile life with a sense of wellbeing [
30] and in order to improve QoL among older adults who receive HCS [
31] it is essential to explore any possible relationship between self-determination and QoL. Such knowledge will make an important contribution to understanding how quality aged care can be created. Thus, the aim of this study was to explore perceptions of self-determination among older adults living at home with the support of home care services, and to test whether those older adults who perceive a higher degree of self-determination also have a higher health-related QoL.
Results
Reported background characteristics (Table
1) show that 63% of the older adults receiving support from HCS were female. Participants had a mean age of 83 years (range 65–100, SD 7.9); 69% had received help from HCS for 1–10 years; 59% had one or more visits each day; 81% lived in an apartment; 48% had completed elementary school; 86% were born in Sweden; 93% spoke Swedish as their mother tongue; finally 95% were dependent in I-ADL to any extent and 83% were dependent in P-ADL to any extent. Background characteristics were similar in the two groups with higher and lower self-determination, except for type of housing. More adults who lived in a house with a garden reported higher self-determination (
p = .034) than those who lived in an apartment (Table
1).
Overall, older adult’s self-reported self-determination varied between the dimensions (Table
2). A large proportion (72%) of the participants experienced self-determination in relation to the dimension use of time, followed by the dimensions self-care, mobility, social relationships, possibility to live as one wants, and activities. Finally, few people (15%) experienced self-determination in relation to the dimension help and support of others.
Table 2
Percentage of older adults (n = 136) who fully experienced self-determination
In relation to: |
Use of time (1 item) | 72 |
Self-care (5 items) | 70 |
Mobility (4 items) | 51 |
Social relationships (5 items) | 34 |
I live as I want (1 item) | 34 |
Activities in and around the house (4 items) | 33 |
Providing help and support for others (1 item) | 15 |
Results show significant differences in QoL between the two groups of higher and lower experienced self-determination (Table
3). Older adults who reported a greater degree of self-determination reported a significantly higher experienced QoL on the EQ-5D-5 L total, the EQ-VAS and the NHP total score in comparison with those who reported a lower degree of self-determination. However, effect size measures show that the size of the differences can be considered low to intermediate. In sub-scales, older adults who reported a higher degree of self-determination also reported a higher degree on five out of six NHP sub-scales (
p = 0.001–0.033) compared to adults who reported a lower degree of self-determination. In the sub-scale sleep, we could not find any differences (
p = 0.395) between the groups.
Table 3
Differences between older adults who reported higher degree vs lower degree of self-determination on QoL
EQ-5D-5 L totala | 0.8 (0.6; 0.9) | 0.6 (0.3; 0.7) | 0.2 | 0.39 | < 0.001 |
EQ-VASa | 65 (50; 80) | 50 (40; 65) | 15 | 0.30 | < 0.001 |
NHP totalb | 24 (8; 40) | 40 (26; 53) | 16 | 0.30 | < 0.001 |
Discussion
This study explores the experienced self-determination among older adults and whether there are differences between groups with higher vs lower self-determination, and QoL. Our main finding shows that the majority of older adults with support from HCSs experienced self-determination in the dimensions use of time, and self-care. However, we found a large variation in self-reported self-determination between all dimensions. The results showed that the group with higher self-determination also reported a higher QoL as measured through the EQ-5D-5 L, EQ-VAS and NHP compared to those lower self-determination.
Findings where the majority of older adults experienced self-determination in the dimensions how to use their time as they wanted, and self-care, are comparable with another Swedish study which used the same questionnaire to measure self-determination [
21]. Findings in the Swedish study found that over 90% of older adults experienced self-determination in the dimensions financial situation, use of time, and self-care. However, a larger proportion of their participants reported self-determination concerning all dimensions compared to our results. The same study also show that self-determination decreases when care needs increase. Their study included older adult with and without HCS and fewer people who were dependent in P-ADL and I-ADL [
21], which might explain the differences between the two sets of results.
Our interpretation of many older adults reported self-determination in use of time and self-care is that those dimensions include things that are usually carried out within the home (deciding when to get washed, dressed, go to bed or the toilet etc.) where it might be easier to exercise control over them. In contrast, the findings where few people reported self-determination - mobility, social relationships, to live as I want, activities in and around the house, and having the possibility to help and support other people includes several domains where one is more dependent on other people and external factors. Dimensions that are carried out around the home and factors that must be planned for in collaborations with others might make older adults more dependent. Our interpretation is in line with [
11,
40]. Their results show that perceived control over one’s life can be influenced by external factors (factors influenced by the outside world, others and systems).
The low frequency of older adults who experienced self-determination in the dimension social relationships is particularly worrying. One review [
14] concludes that good relationships among the older person, staff, and healthcare providers are crucial for older adults to be in control and independent [
14]. Further, social relationships are important for retaining mental and physical functions and QoL among older adults [
20]. It has been found that professionals and older adults had different focuses at care planning meetings which might influence the social relationship between the older adult and healthcare providers [
23]. Topics such as social situations and activities in daily life were mostly initiated by the professionals while questions about psychological and existential issues, such as death, meaningfulness and loneliness, were mostly initiated by the older adult or their family members.
Social relationships is closely related to relatedness which is one of three (autonomy, relatedness and competence) basic psychological needs highlighted in the self-determination theory [
41]. Nursing homes accept that it is important to support these three basic psychological needs, in order to increase subjective wellbeing among frail residents. The three needs play a central role in nursing home interventions [
42]. It is reasonable to interpret that the same applies to older adults receiving support from HCS.
Methodological discussion and limitations
This cross-sectional study is a part of a larger project conducted in one municipality in northern Sweden, and contains the well-known limitations of cross-sectional studies regarding inability to detect important issues such as causality, trends and changes over time. However, in terms of generating hypotheses and detecting relationships for further study, cross-sectional studies can make a contribution [
43], hopefully in this study as well. The local selection of data and the moderate response rate (50%) might increase the risk that the results are non-representative for others. As the survey included several questionnaires, older adults might have found it a burden to complete the survey which in turn might have influenced the response rate negatively. The IPA-O questionnaire included one question with low reliability “My chances to decide to go on the sort of trips and holidays I want to are good”, but was kept in the questionnaire because of the target group’s opinions in the face validity test and because the question is a part of the dimension mobility [
9]. A majority of the participants in this study showed a dependency in I-ADL and with a relatively high number of missing data for the P-ADL. Considering these factors, it remains being difficult to draw much conclusions about associations between self-determination and dependency based on our data. It seems likely that these are complex associations that would be worthy of further evaluation in other contexts and samples.
Acknowledgements
The authors would like to thank the Swedish Research Council for Health 2014-02715, Working Life and Welfare (FORTE) 2014-04016 for funding. We would also like to thank the management staff for supporting the data collection for our study, and the older adult who answered the questionnaires.