3.1. Analysis of caregivers’ burden and support expectations
Using data from surveys and databases, the analysis included 51 elder-caregiver dyads (see Table 4).
Overview of elders and family caregivers
The database of elderly assisted in the area included 51 individuals (mean age 82.27±8.81, range 65–99), most of whom were female (N = 37, 73%), with an average 5.74±1.84 years of education (primary school: N = 37, 73%; high school: N = 1, 2%). Of these, 53.1% were widowed, and 40% lived alone. Almost 40% earned less than €10,000 per annum and lived alone. In terms of health status, almost 92% were registered invalids, and 60% had at least one chronic disease, including neurological (37.3%), cardiological (27.5%), and other chronic conditions (35.3%). In terms of service demand, 31 (60.8%) were assisted by ATSP, and 20 (39.2%) used nursing home services. Overall, these elders received an average 214.52±140.12 hours of assistance each year; those assisted by ATSP received a significantly higher number of hours of assistance (254.17) than those assisted by nursing homes (148.44 hours) (p = 0.027). The greatest demand was for hygiene and mobility support; almost 90% requested two or more services, and about 55% requested more than three services. About 70% were supported by their sons, and 12% were supported by their husband or wife.
We also analysed the data of 51 caregivers. Of these, 78% were women; 66% were younger than 65 years (mean age 59.14±9.73, range 34–79), with an average 9.63±3.11 years of education (elementary school: N = 7, 13.7%; middle school: N = 24, 47.1%; high school: N = 19, 37.3%; degree: N = 1, 2%). Additionally, 31% were unemployed, and only 10% had a full-time job; about 84% were married, 37% were retired, and 29% had a full- or part-time occupation. In relation to caregivers’ wellbeing, almost 60% of the sample reported a moderate or severe level of burden. Regarding their expectations of the social welfare system, caregivers’ main concern was the need for information about local services. Finally, in terms of organizational and economic effort, 40% dedicated more than 70 hours per week to caring for their elders, (averaging 75.22±54.14 hours per week), and monthly out-of-pocket expenditure for elder support averaged €557. Satisfaction with current home care services and nursing homes was high (82%). Older and unemployed caregivers spent significantly more time caring for their relatives than younger caregivers (p = 0.002) or those who were employed (p < 0.001).
Table 4. Information about elders and their caregivers from ATSP and nursing home databases and survey results
Caregivers
|
Elders
|
n
|
%
|
n
|
%
|
Demographic
|
Demographic and personal
|
Gender
|
F
|
40
|
78%
|
Gender
|
F
|
37
|
73%
|
M
|
11
|
22%
|
M
|
14
|
27%
|
Age
|
<55
|
17
|
33%
|
Age
|
<70
|
6
|
12%
|
55–64
|
17
|
33%
|
70–79
|
11
|
22%
|
>=65
|
15
|
29%
|
80–89
|
21
|
41%
|
No answer
|
2
|
4%
|
>=90
|
13
|
25%
|
Education
|
Primary School
|
31
|
61%
|
Education
|
Primary School
|
37
|
73%
|
High School
|
19
|
37%
|
High School
|
1
|
2%
|
Higher
|
1
|
2%
|
No response
|
13
|
25%
|
Marital status
|
Married
|
43
|
84%
|
Yearly Income
|
Low
|
20
|
39%
|
Unmarried
|
1
|
2%
|
Medium
|
9
|
18%
|
Divorced/Separated
|
4
|
8%
|
High
|
0
|
0%
|
Widower
|
3
|
6%
|
No response
|
22
|
43%
|
Working condition
|
Employed
|
15
|
29%
|
Number of people living with elder
|
Alone
|
21
|
41%
|
Unemployed
|
16
|
31%
|
One person
|
24
|
47%
|
Retired
|
19
|
37%
|
More than two people
|
6
|
12%
|
No response
|
1
|
2%
|
No response
|
1
|
2%
|
Supporting caregivers
|
Husband/wife
|
6
|
12%
|
Son(s)
|
35
|
69%
|
Brother/sisters
|
4
|
8%
|
n
|
avg.
|
%
|
Other
|
6
|
12%
|
Psychosocial measures
|
Service providers
|
ATSP
|
31
|
61%
|
Caregiving Health Engagement Scale (CHE-s)
|
51
|
2.66
|
67%
|
Nursing home
|
20
|
39%
|
No answer
|
3
|
-
|
Clinical condition
|
Caregiver Burden Scale
|
Time-Dependence Burden
|
48
|
16.51
|
83%
|
Main pathologies
|
Cerebrovascular disease
|
4
|
8%
|
Developmental Burden
|
48
|
12.96
|
65%
|
Arterial hypertension
|
8
|
16%
|
Physical Burden
|
48
|
10.33
|
52%
|
Dementia or Alzheimer
|
14
|
27%
|
Social Burden
|
48
|
5.92
|
30%
|
Diabetes type II
|
8
|
16%
|
Emotional Burden
|
48
|
3.22
|
16%
|
Heart failure
|
6
|
12%
|
No response
|
3
|
-
|
Myocardiopathy
|
7
|
14%
|
Caregiver Self-efficiency Scale
|
Obtaining Respite
|
47
|
5.93
|
59%
|
Other
|
4
|
8%
|
Responding to Disruptive Patient Behaviours
|
47
|
7.16
|
72%
|
Civil invalidity
|
Yes
|
47
|
92%
|
Controlling Upsetting Thoughts
|
47
|
6.81
|
68%
|
No
|
4
|
8%
|
No response
|
4
|
-
|
Presence of chronic diseases
|
Yes
|
30
|
59%
|
Health literacy scale
|
48
|
1.23
|
41%
|
No
|
21
|
41%
|
No response
|
3
|
-
|
Service usage characteristics
|
Caregiver Need Assessment Scale
|
47
|
28.23
|
55%
|
Number of other services activated
|
Yes
|
9
|
18%
|
No response
|
4
|
-
|
No
|
40
|
78%
|
Organizational measures
|
No response
|
2
|
4%
|
Satisfaction
|
ATSP
|
29
|
5.77
|
82%
|
Number of care activities activated
|
One service
|
5
|
10%
|
Rest houses
|
18
|
5.71
|
82%
|
Two services
|
22
|
43%
|
No response
|
4
|
-
|
More than two services
|
24
|
47%
|
Economic measures
|
Number of care service hours per month
|
< 15 hours per month
|
33
|
65%
|
Out-of-pocket expenditure
|
51
|
567 €
|
/month
|
≥ 15 hours per month
|
17
|
33%
|
Hours of informal caregiving
|
51
|
326 h
|
/month
|
No response
|
1
|
2%
|
Unpaid time costs
|
51
|
€2,296
|
/month
|
Caregiver burden Based on our survey data, we analysed the association between demographic factors and caregiver burden (see Table 5). Overall, the level of burden was found to increase with caregiver age. Younger caregivers (> 53 years, quartile I) reported significantly less physical burden than those aged 54–59 years (quartile II, p = .009), those aged 60–65 years (quartile III, p = .017) and those aged ≥ 65 years (IV quartile, p = 0.016). In addition, younger caregivers reported a significantly lower social burden than older counterparts (60–65 years, p = 0.016; ≥ 65 years, p = 0.016). Social burden also decreased significantly with increased caregiver education (Spearman's Rho = -.323, p = 0.021); two-by-two comparisons showed that caregivers with a primary school education reported significantly higher social burden than those with a high school education (p = 0.009). Caregivers with primary school education also reported higher levels of physical burden (M = 15.36±2.36) than those with a high school education (p = 0.028). Unemployed caregivers reported significantly higher social burden than those who were employed (p = 0.005). Caregivers whose elders had activated an ATSP home care service reported higher levels of physical, social, and emotional burden than those assisted by nursing homes (p = 0.013, p = 0.002, and p = 0.032, respectively).
Table 5. Correlation between Caregiver Burden and Age and Education*
Physical Burden
|
Social Burden
|
Physical Burden
|
Social Burden
|
Social Burden
|
Physical Burden
|
Social Burden
|
Emotional Burden
|
<53 vs 54-59 years
|
<53 vs 60-65 years
|
<53 vs >65 years
|
<53 vs 60-65 years
|
<53 vs >65 years
|
Primary vs High School
|
Primary vs High School
|
Employed vs Unemployed
|
Rest house vs ATSP
|
Rest house vs ATSP
|
Rest house vs ATSP
|
Mann-Whitney U
|
30
|
31
|
30.5
|
31
|
31
|
30.5
|
23
|
130
|
182
|
146.5
|
200.5
|
Wilcoxon W
|
108
|
109
|
108.5
|
109
|
109
|
240.5
|
233
|
250
|
392
|
356.5
|
410
|
Z
|
-2.627
|
-2.38
|
-2.416
|
-2.403
|
-2.402
|
-2.2
|
-2.618
|
-2.822
|
-2.479
|
-3.173
|
-2.55
|
Sig. Asint.(2 code)
|
.009*
|
.017*
|
.016*
|
.016*
|
.016*
|
.028*
|
.009*
|
.005*
|
.013*
|
.002*
|
.032*
|
*Only significant and innovative correlations are reported here. As hours dedicated to caring increased, both time-dependence burden (Spearman's Rho = 0.434, p = 0.001) and developmental burden increased significantly (Spearman's Rho = 0.362, p = 0.009). Caregiver burden did not differ significantly by gender, family role, or elder's age, pathology, or living arrangement (see Table 6)..
Table 6. Correlation between Caregiver Burden and monthly hours of informal caregiving*
Time-Dependence Burden
|
Developmental Burden
|
Physical Burden
|
Social Burden
|
Emotional Burden
|
N. hours of informal caregiving
|
Correlation Coeff.
|
.434
|
.362
|
0.197
|
0.146
|
0.223
|
Sig. (2-code)
|
.001*
|
.009*
|
0.166
|
0.307
|
0.115
|
N
|
51
|
51
|
51
|
51
|
51
|
*Only significant and innovative correlations are reported here. Caregiver needs Our results show that the spiritual needs of caregivers increase significantly with increasing age (Spearman's Rho = .455, p = 0.002) among those aged 54–59 (p = 0.005), 60–65 (p = 0.008), and ≥ 65 (p = 0.006) (see Table 7). Caregiver schooling also influences the extent of expressed needs, with an observed decrease in total (Spearman's Rho = -.325, p = .026), cognitive (Spearman's Rho = -.303, p = .039), relational (Spearman's Rho = -.352, p = .015) and spiritual needs (Spearman's Rho = -.291, p = .047) as years of schooling increase. Unemployed caregivers reported significantly greater needs than those who were employed (total: p = 0.031; cognitive: p = 0.037; relational: p = 0.045; social-organizational: p = 0.046; and spiritual: p = 0.05). Caregiver gender, marital status, family role, and hours dedicated to elders did not affect expressed needs, but elders’ living arrangements did. Caregivers reported higher overall needs when elders lived alone than if they lived with their partner (p < 0.001) or with children or grandchildren (p = 0.03). Caregivers’ relational needs were also greater when elders lived alone rather than with a partner (p = 0.001) or with children or grandchildren (p = 0.033). Finally, compared to the caregivers of those who lived alone, caregivers of elders living with their partner showed lower cognitive-behavioural needs (p = 0.002) and social-organizational needs (p = 0.005). Caregivers of elders who used ATSP services had greater needs than those caring for elders assisted by nursing homes, both overall (p = 0.014) and on the subscales of emotional (p = 0.026), cognitive-behavioural (p = 0.012), and relational needs (p = 0.016).
Table 7. Correlations between Caregiver Needs and Caregiver Age and the living condition and type of services of their elders*
Spiritual needs
|
Relational needs
|
Spiritual needs
|
Total Caregivers needs
|
Total Caregiver needs
|
Total Caregiver needs
|
<53 vs 54-59 years
|
<53 vs 60-65 years
|
<53 vs >65 years
|
Primary vs Secondary Schools
|
Primary vs Secondary Schools
|
Employed vs Unemployed
|
Live alone vs with partner
|
Live alone vs with son /daughter
|
ATSP vs rest house services
|
Mann-Whitney U
|
27.5
|
33
|
27.5
|
124.5
|
27.5
|
118
|
19
|
41.5
|
152.5
|
Wilcoxon W
|
93.5
|
99
|
93.5
|
334.5
|
237.5
|
196
|
74
|
86.5
|
342.5
|
Z
|
-2.806
|
-2.641
|
-2.775
|
-2.238
|
-2.278
|
-2.153
|
-3.492
|
-2.166
|
-2.463
|
Sig. Asint.(2 code)
|
0.005*
|
0.008*
|
0.006*
|
0.025*
|
0.023*
|
0.031*
|
0*
|
0.03*
|
0.014*
|
*Only significant and novel correlations are reported here. In general, the greater the expressed needs, the lower is perceived self-efficacy (p = 0.005). Furthermore, the lower the self-efficacy in managing patients’ destructive behaviours, the greater are total (Spearman's Rho = -.356, p = 0.016), emotional (Spearman's Rho = -.603, p < .001), social (Spearman's Rho = -.354, p = 0.017) and relational needs (Spearman's Rho = -.311, p = 0.038). Additionally, difficulty in reading and interpreting medical information as measured by the Health Literacy Scale increases as total expressed needs increase (p = 0.027). Increased cognitive-behavioural and relational needs are associated with greater caregiver difficulty (Spearman's Rho = .354, p = 0.018, and Spearman's Rho =.353, p = 0.019, respectively). Analysis of the association between caregiver burden and needs revealed that higher levels of social burden were associated with a significant increase in needs (Caregiver Need Assessment: total score, Spearman's Rho =.528, p < 0.001; emotional needs, Spearman's Rho = .501, p < 0.001; physical-functional needs, Spearman's Rho = .363, p = 0.012; cognitive-behavioural needs, Spearman's Rho = .300, p = 0.041; relational needs, Spearman's Rho = .507, p < 0.001; social needs, Spearman's Rho = .427, p = 0 .003; spiritual needs, Spearman's Rho = .297, p = 0.043). As physical burden increases, total (p = 0.002), physical-functional (p = 0.01), cognitive-behavioural (p = 0.045), relational (p = 0.032), social (p < 0.001) and spiritual (p = 0.027) needs increase (see Table 8).
Table 8. Correlation between Caregiver Total Needs and Self-efficacy, Burden and Health Literacy*
Responding to Disruptive Patient Behaviours
|
Physical burden
|
Social burden
|
Health literacy
|
Total Caregiver needs
|
Correlation Coeff.
|
-.356
|
.445
|
.528
|
.332
|
Sig. (2-code)
|
0.016*
|
0.002*
|
0*
|
0.027*
|
N
|
45
|
47
|
47
|
44
|
*Only significant and novel correlations are reported here.Caregiver engagementNo significant differences were found in engagement as assessed by the Caregiving Health Engagement Scale by age, gender, education (both caregiver and elder), caregiver employment status, or hours of assistance required. Higher levels of engagement were associated with less physical (Spearman’s Rho = -.333, p = 0.019) and emotional burden (Spearman’s Rho = -.469, p = 0.001) (see Table 9). Caregiver engagement correlated positively with caregivers’ perceived self-efficacy in managing disruptive patient behaviours (Self-Efficacy Scale, Spearman’s Rho = .568, p < 0.001) and negatively with needs as assessed by the Caregiver Need Assessment. In particular, higher engagement was associated with lower total (Spearman’s Rho = -.339, p = 0.021), emotional (Spearman’s Rho = -.398, p = 0.006) and spiritual needs (Spearman’s Rho = -.305, p = 0.04).
Table 9. Correlation between Caregiver Health Engagement and Caregiver Burden, Self-efficacy and Caregiver Needs*
Physical Burden
|
Emotional Burden
|
Responding to Disruptive Patient Behaviours
|
Emotional needs
|
Spiritual needs
|
Total Caregiver Needs
|
Total Caregiver Health Engagement
|
Correlation Coeff.
|
-.333
|
-.469
|
.568
|
-.398
|
-.305
|
-.339
|
Sig. (2-code)
|
0.019*
|
0.001
|
0*
|
0.006*
|
0.04*
|
0.021*
|
N
|
49
|
49
|
48
|
46
|
46
|
46
|
*Only significant and novel correlations are reported here.
3.2 In-depth analysis of caregivers’ unmet support needs and expectations for a new service
In total, 26 of the caregivers who participated in Phase 1 and seven stakeholders participated in the following part of the project (see Table 10). As expected, the great majority were females in their sixties, mainly retired from work, with a low level of education.
Table 10. Sample characteristics
%
|
Gender
|
Female
|
72
|
Male
|
28
|
Age
|
40–49
|
16
|
50–59
|
20
|
60–69
|
52
|
≥ 70
|
12
|
Marital status
|
Unmarried
|
8
|
Cohabiting
|
4
|
Married
|
80
|
Divorced
|
8
|
Level of school attainment
|
Low
|
56
|
Middle
|
40
|
High
|
4
|
Employment status
|
Unemployed
|
20
|
Retired
|
48
|
Housewife
|
12
|
Full time job
|
12
|
Part-time job
|
8
|
(n = 25)
|
Need for information
According to the focus group data, caregivers report great difficulties in accessing information about services, benefits, initiatives, and bureaucratic procedures. They attribute this lack of information to a lack of clear sources of reference for medical information in this area (e.g. lack of general practitioners) and to the extreme effort (in terms of energy and time) needed to collect and organize the relevant information. Interviewees noted the need for a single user friendly and constantly updated source of information about medical, social, legal and practical aspects of caring for older people. They also highlighted the need for a clear map that would enable them to locate dispersed services in the territory. ‘The problem here in the valley is access to information; we do not know how to find information about procedures or facilities’ (Caregiver 5, female). ‘It would be useful to have a job description detailing what the doctor does and where he does it, and also a person dedicated to helping caregivers who may not be comfortable with online services’ (Caregiver 1, female). Reference was also made to the need for a website and telephone line with trained volunteers to address questions and doubts: ‘Especially when looking after someone with Alzheimer’s, we need a help desk with a dedicated phone number and someone that can help us emotionally as well as with information’ (Caregiver 8, female). This information system should be shared with general practitioners and social workers, as ‘they are extremely helpful and careful, but they too have great difficulties in finding all the necessary information’ (Caregiver 12, male).
Best practices for sharing needs
A second need identified by caregivers was to learn best practices for supporting their loved ones. Even those who gained such expertise during what is often an extended period of caregiving noted many difficulties in this regard. The general feeling was that, rather than proceeding by ‘trial and error’, they would welcome advice, counselling, and guidelines to improve their caring capabilities and to save time. Caregivers reported several examples of situations where they felt unprepared. ‘My mother has Alzheimer’s, and I don’t know what to do. For example, sometimes she asks me where her mum is, who died years ago. What am I to do? Should I indulge her? What are the risks of doing that?’ (Caregiver 4, Female). ‘The problem is that we are not prepared to face the illness. We find ourselves in a difficult position because we do not know how to act when a person has Alzheimer’s; we recognize the illness, but what is and is not appropriate? When you encounter the situation directly, that’s another story’ (Caregiver 16, male).
For the interviewed caregivers, the experience of feeling inadequate and lacking in solid expertise is a major factor in the potential emotional burden, and they reported a need ‘to have a proper training, not only to deal with the illness but also to learn about practical issues and how to help our loved ones in their everyday life’ (Caregiver 19, male).
Emotional needs
The emotional burden of caregiving was referred to repeatedly during the workshops, along with the need for spaces and occasions where these feelings can be expressed, with some form of empathetic listening and support. ‘To be honest, I feel like I’m in prison since I began to look after my mother. We are at risk; I realise that I can become angry and very nervous’ (Caregiver 20, male). ‘I think we should organize as a group to share our experiences; WhatsApp is ok, but a proper physical encounter is more important’ (Caregiver 9, female). All participants agreed about the need to express and share their emotional burden with peers. ‘A group where I can share how I feel, not feel abandoned, and share our experiences and moments together’ (Caregiver 2, female). Finally, thanks to the previous positive experiences of some caregivers, the importance of psychological counselling for emotional support also emerged. ‘I found great comfort in a previous group at the hospital, where a psychologist helped us to find emotional support and relief. I think that is also important for reducing our burden’ (Caregiver 2, female).
3.4 SOS caregivers: Service design and first implementation
Service design
The researchers and ATSP personnel discussed the service ideas proposed by family caregivers in the co-design workshops (Tables 11 and 12) and attempted to put them into practice.
Table 11. Service ideas proposed by family caregivers in the co-design workshops
Service ideas
|
Economic feasibility
|
Organizational feasibility
|
Major constraints
|
Implementation
|
Help desk
|
low
|
low
|
Insufficient project budget and resources
|
not implemented
|
Dedicated website informing caregivers and elders
|
medium
|
high
|
implemented
|
Information brochure
|
high
|
high
|
implemented
|
Green line dedicated to support caregivers
|
low
|
low
|
Insufficient project budget and resources
|
not implemented
|
Information about available services
|
high
|
high
|
implemented
|
Online group for sharing concerns
|
high
|
medium
|
implemented
|
Additional support hours for caring activities
|
low
|
low
|
Insufficient project budget and resources
|
not implemented
|
Additional professional support hours/days for elders
|
low
|
low
|
Insufficient project budget and resources
|
not implemented
|
Training and general practitioner involvement
|
high
|
low
|
Bureaucratic issues blocked course delivery for general practitioners
|
not implemented
|
Training courses
|
high
|
medium
|
implemented
|
Caregivers time bank
|
high
|
low
|
High caregiver burden and caring time demands prevented implementation. However, a self-help group time bank was incentivized.
|
partially implemented
|
Psychological support
|
low
|
medium
|
As one-to-one psychological support was too costly, the psychologist got involved in the self-help group.
|
partially implemented
|
Self-help groups
|
high
|
high
|
implemented
|
TV commercial
|
low
|
high
|
The project budget was too limited to fund a TV commercial. However, the project team delivered three interviews on local media
|
partially implemented
|
Busto transport elders to local hospitals and ambulatories
|
low
|
low
|
Insufficient project budget and resources
|
not implemented
|
Activities that were considered feasible in economic and organizational terms were included in the new service pilot, which was called SOS Caregivers. The service was built on four pillars: a citizens’ management board, training courses, peer-to-peer meetings, and project and service information. While the last three of these were based on caregivers’ explicit suggestions, the citizens’ management board was proposed on the basis of caregivers’ willingness to play an active part in service design, delivery, and assessment. During the design phase, participants enjoyed collaborating and requested further opportunities to be involved in developing the project and ensuring its effectiveness. ‘We have left our email and phone contacts here, and [we will wait for your email or phone call in the coming months]’(Caregiver 6, woman). ‘Are you [service providers and researchers] going to contact us in the months ahead?’(Caregiver 9, woman). ‘But do we have to implement all these ideas by ourselves in the coming months?’ (Caregiver 4, man). ‘[..] Or must we wait for you?’ (Caregiver3, woman).’
Table 12. Structure of SOS Caregivers service
SOS Caregivers
|
Organizational structure
|
Citizens’ management board
|
Service activities
|
Training programme
|
Peer-to-peer meetings
|
Project and service information
|
The citizens’ management board included ATSP representatives, researchers, and family caregivers (representing the great majority of board members). The board was open to any family caregivers who were interested in joining. The board had two purposes: to support and advise ATSP in implementing service activities, and to give family caregivers a voice and responsibility. The members met every four months to discuss service issues and possible improvements. All members had an equal say in final service decisions; in fact, the number of family caregivers at board meetings was always (at least) double the number of researchers and ATSP representatives. The direct contributions of family caregivers to the management and evaluation of service activities helped ATSP personnel and the researchers to understand caregivers’ needs and preferences (32). The involvement of family caregivers also helped to build strong relationships (33) with ATSP and a shared sense of community (34).
The training programme provided a set of practical courses for family caregivers to help them to care for their elders. Enhancing caregivers’ skills and capabilities has a positive impact on the quality of elder care and the well-being of elders and caregivers alike. Courses were organized on a monthly basis and were delivered by professionals including psychologists, social workers, educators, speech therapists, and physiotherapists. Course content reflected the needs and difficulties highlighted by family caregivers during the co-design workshops. Five courses were face-to-face (helping elders to swallow, handling elders during routine activities, dealing with stressful situations, preventing elders’ falls, and managing elders’ drugs), and two were delivered online (sanitary best practices in elder care, dealing with elders during the Covid-19 pandemic). At the end of each course, the professionals’ material was shared with participants.
Peer-to-peer meetings were attended by family caregivers and coordinated by one psychologist. At the beginning of each group meeting, the psychologist suggested a theme related to the caregivers’ daily life and encouraged participants to express their opinions and experiences in this regard. The aim was to create a self-help network of caregivers, enhancing their sense of well-being and belonging to a community by sharing ideas. During these group meetings, the psychologist sought to promote equal and fair participation, and caregivers were asked to support the psychologist in co-delivering the service activity. While the psychologist acted as moderator, caregivers were responsible for developing the group discussion. The self-help meetings during the service pilot (five face-to-face and two online) encouraged serious reflection as well as more general discussion about the role of caregivers, managing one’s private life, cultural and culinary habits in Vallecamonica, memories related to family life, and the difficulties of living in remote and rural areas.
Project and service information provided caregivers with the information they needed in three ways (see Table 13). First, with the support of the four local rest houses, the project team produced a report summarizing the bureaucratic procedures, admission constraints, costs, and activities associated with services in Vallecamonica for elderly people living at home. Second, caregivers were informed about the new service activities during the pilot. Finally, one psychologist launched a WhatsApp group to facilitate direct communication with caregivers who had expressed their interest. These three formal and informal sources were complementary; while the report provided information about available activities for elderly people, the service activities kept people informed about opportunities for supporting caregivers, and the WhatsApp group collected caregivers’ other informal requests for support.
To reach as many recipients as possible, the report and service activities were disseminated through a new project website (https://www.place4carers.it/), a project Facebook page (https://www.facebook.com/place4carers), brochures, and alerts in the news section of the ASTP website and newsletter.
Service activities
Overall, the SOS Caregivers service reached more than 150 family caregivers. However, at least two external constraints limited attendance. First, caregivers’ initial mistrust meant that few participants were willing to participate in the first training session and group meeting, forcing the project team to postpone those activities. Second, caregivers’ low digital literacy contributed to the low number of participants in the first online training sessions and group meetings (n = 0 online, n = 3 offline). Despite these setbacks, overall satisfaction with service activities was very high, confirming their positive effect on caregivers’ well-being.
Table 13. Service activities and achievements
SOS Caregivers
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Organizational structure
|
Citizens’ management board
Number of activities: 3 meetings
Average number of participants per meeting: 7 caregivers, 2 ATSP representatives, 2 researchers
|
Service activities
|
Training programme
|
Peer-to-peer meetings
|
Project and service information
|
Number of activities between
April 2019 - February 2020 :
|
5 training sessions (+ 1 postponed):
1. Helping elders with swallowing
2. Handling elders in routine activities
3. Dealing with stressful situations
4. Preventing falls and managing drugs
5. Implementing sanitary best practices
|
5 group meetings (+ 1 postponed):
1. The role of caregivers
2. Managing caregivers’ private life
3. Cultural and culinary habits of Vallecamonica
4. Memories related to family life
5. Difficulties of living in remote and rural areas
|
· Project website and Facebook page
· Brochures about the service
· ATSP website – news section
· WhatsApp group coordinated by ATSP
· Report summarizing service information for elders in Vallecamonica
|
Number of online activities between
October - November 2020
|
2 online training sessions
1. Helping elders with swallowing
2. Dealing with elders during the Covid-19 pandemic
|
2 online group meetings:
1. The effects of Covid-19 in daily life
2. How to deal with more complex and stressful situations
|
· Two online recordings of training sessions;
|
Average number of participants per session/meeting
|
7 caregivers
1 formal teacher
1 ATSP representative
|
6 caregivers
1 psychologist
|
83 Facebook page followers
> 130 visitors to the project website
|
Average satisfaction
|
98%
|
86%
|
--
|
For more information about the qualitative and quantitative analyses of the service pilot, see (31).
Supporting activities
The service was implemented along with supporting activities that ensured its success (Figure 1). At the launch and again at the end of the pilot, an account of the service was presented to the local health agency (ATS della Montagna) and a government committee, and a brief overview was disseminated through local newspapers and broadcast media. During the pilot, ATSP and the project team raised awareness of the service through presentations to local service providers, including the local hospital, rest houses, cooperatives, and social workers, and an official communication was released on local broadcast media. Additionally, the project team organized seven collective meetings and several internal operational meetings to manage and oversee project progress.
3.5 SOS Caregivers: Analysis of transferability
The research team reflected on internal/external achievements and issues arising throughout the service pilot in Vallecamonica. More precisely, the following issues were addressed.
- Direct achievements: factors that impacted directly on family caregivers or service providers (e.g. increased levels of trust between caregivers and service providers)
- Indirect achievements: actual or potential indirect impacts on one or more actors in the service ecosystem (e.g. increased motivation of service providers following direct collaboration in co-producing a new service)
- Internal issues: service requirements that negatively affected (or threatened to affect) family caregivers or service providers (e.g. time and effort invested in managing and delivering the service)
- External issues: external factors that affected (or threatened to affect) one or more actors in the service ecosystem (e.g. participation difficulties when caregivers were unable to move their loved ones and/or leave them alone at home).
(For more details of achievement and issues, see Appendix).
The research team then sought to determine whether the identified achievements and issues might transfer to the new service setting (Valtellina). To that end, we interviewed the heads of three social and welfare service providers who had made themselves available. All three felt the Place4carers project was useful and interesting for their district because it would improve caregivers’ wellbeing and the effectiveness of elder support. They also welcomed the active involvement of family caregivers in the service life cycle as a means of enhancing trustful relationships between caregivers and service providers, establishing a peer-to-peer community, and disseminating existing health and social care services. All three felt that equal collaboration would have no negative effects on caregivers or service providers—that is, caregivers would not feel useless, and professionals would not lose their authority or control. All three believed that caregivers would be interested in participating in the SOS Caregivers service, and that local stakeholders in Valtellina (e.g. rest houses) would support this new service. However, two of the three interviewees expressed concern that project implementation might demand undue effort and resources, and only two felt that the project would increase the motivation of professionals and caregivers in relation to caring activities.
To integrate and deepen these preliminary results, researchers organized workshops involving the three heads of social and welfare service providers and their key actors, including local social workers, cooperatives, and political parties working with the social care services. During the discussion, at least two limiting factors emerged that would require service providers to modify the Place4Carers project prior to implementation in Valtellina. First, despite its relevance, participants believed that it was premature to invest in services for family caregivers, and that new services should target both caregivers and elders. Most elderly people living in Valtellina do not receive appropriate health and social care support because the limited economic and human resources dedicated to caring activities cannot meet service demand in time. For these reasons, workshop participants argued that family caregivers should not be the only target for new services; in their view, elders’ needs are the root cause of caregivers’ discomfort, and that strain can therefore be relieved by supporting services for elders.
Secondly, participants reflected on the difficulty of integrating and coordinating service activities in Valtellina. In the area managed by the three social and welfare service providers, the list of stakeholders supporting elderly people is long (21 rest houses, five cooperatives, and three volunteering organizations), and the service network is complex to manage. For that reason, participants believed that Valtellina’s existing home care service network should be reinforced by increasing cohesion among stakeholders before launching Place4Carers project, which requires different stakeholders to collaborate.