Participant characteristics
A total of 81 professionals or volunteers involved in ICDs support completed the background questionnaire. The filter question excluded 6 participants who reported not assessing the needs of ICDs. Based on respondents’ description of their needs’ assessment practices, we excluded 7 additional participants as they focused predominantly on the PwD without assessing the needs of the ICD[1] (n=6) or the assessment of the needs of ICDs had been conducted exclusively in the context of an academic dissertation (n=1). Thirteen other participants did not complete the survey, so the final sample comprised 55 persons.
Participants’ characteristics are presented in Table 1. Most of them were French-speaking (87.3%) and were women (78.2%), with a median age of 47 years. On average, these professionals or volunteers had been in contact with ICDs for 8 years, meeting around 10 of them per year. Eleven professions were represented in the sample, with a majority of nursing staff (i.e. nurses and care assistants) and social workers. Most participants were active in healthcare and/or social institutions (61.8%), as well as in large associations (23.6%), while 5 participants were self-employed.
Table 1. Participant background characteristics (N=55)
|
n
|
%
|
Range
|
Median (Q1, Q3)
|
Language
|
|
|
|
|
French
|
48
|
87.3%
|
|
|
German
|
7
|
12.7%
|
|
|
Gender
|
|
|
|
|
Female
|
43
|
78.2%
|
|
|
Male
|
11
|
20.0%
|
|
|
non-binary
|
1
|
1.8%
|
|
|
Age (year)
|
|
|
23-74
|
47 (35, 57)
|
|
|
|
|
|
how many (per year)
|
|
|
1-110
|
10 (4.5, 25)
|
missing
|
2
|
|
|
|
how long (years)
|
|
|
2-35
|
8 (5, 20)
|
in which position
|
|
|
|
|
Nursing staff (i.e. nurses and care assistants)
|
26
|
47.3%
|
|
|
Social worker
|
16
|
29.1%
|
|
|
Neuropsychologist
|
3
|
5.5%
|
|
|
Volunteer
|
2
|
3.6%
|
|
|
General practitioner
|
2
|
3.6%
|
|
|
Occupational therapist
|
1
|
1.8%
|
|
|
Geriatrician
|
1
|
1.8%
|
|
|
Pharmacist
|
1
|
1.8%
|
|
|
Psychiatrist
|
1
|
1.8%
|
|
|
Psychologist
|
1
|
1.8%
|
|
|
Spiritual care worker
|
1
|
1.8%
|
|
|
through which organisation
|
|
|
|
|
Health-social institution
|
|
|
|
|
Homecare service (incl. health-social network coordination centre)
|
19
|
34.5%
|
|
|
Hospital service (incl. mental health network)
|
8
|
14.5%
|
|
|
Social information centre
|
2
|
3.6%
|
|
|
Day-care home
|
3
|
5.5%
|
|
|
Health pastoral care
|
1
|
1.8%
|
|
|
Pharmacy
|
1
|
1.8%
|
|
|
Association
|
|
|
|
|
Pro Senectute Fribourg
|
8
|
14.5%
|
|
|
Alzheimer Fribourg
|
4
|
7.3%
|
|
|
Red Cross Fribourg
|
1
|
1.8%
|
|
|
Other
|
|
|
|
|
School of Health Sciences
|
2
|
3.6%
|
|
|
Social welfare service
|
1
|
1.8%
|
|
|
Self-employed
|
5
|
9.1%
|
|
|
Current practices to assess the needs of ICDs
Description of current assessment practices
Descriptions of current assessment practices were provided in response to question 1, with additional information sometimes given in response to question 2. This led us to code this material jointly into three exclusive categories based on the most systematic component described[2].
The first assessment practice, which was the most widely used (61.8%, n=34), was non-systematic. Participants reported discussing with ICDs, observing them and/or asking them questions, as illustrated by the following quote: I ask questions to check that there is no overload. If there is an overload, I will try to find solutions (day care, administrative support, etc.) to relieve the person. I also take the time to talk. ID 24
The second assessment practice used a systematic procedure to evaluate the functional limitations of the PwD while concurrently investigating some needs of the ICDs with a non-systematic procedure. Such a practice was described by 6 participants (10.9%), which assessed the level of dependency of the PwD with three types of questionnaires: an Activities of Daily Living (ADL) or an Instrumental Activities of Daily Living (IADL) questionnaire[3] (n=3), and/or the Home-Care Resident Assessment Instrument Minimum Data Set (RAI-HC/MDS) evaluation[4] (n=2) and/or an application form for the request of some kind of financial support (n=2)[5]. The following quote provides an example of this assessment practice: I therefore use the standard "disability allowance questionnaire” as a 'tool' to carry out prevention and health promotion with the informal caregiver. […] This tool assesses the need for support of the disabled person, support which is provided by the informal caregiver. […] The assistance needs to be in the area of personal care such as dressing, toileting, mobilisation, feeding, elimination management, emotional support, communication, autonomy, memory... ID 22
The third assessment practice was reported by one-quarter of the participants (27.3%, n= 15) who declared that they used systematic tools to evaluate the needs. Nine respondents used self-developed tools, for which only one provided additional information: [I assess the needs] by asking questions about the various activities that the caregiver does on a daily basis. I use a personal rating (from 1 to 10 like the VAS [Visual Analogue Scale] for pain): on a score of 1 to 10 how exhausted are you to help Mr. or Mrs. in this task. From 4 onwards, I try to understand the reason for the exhaustion and look for a solution with the caregiver. ID 139 The six other participants used the Zarit Burden Interview[6] (n=4) and/or ELADEB[7] scale (n=2) and/or Virginia Henderson Questionnaire[8] (n=1). Although these tools focus on the informal caregiver, the most used of them do not address needs, and none of them provides a specific assessment of the needs of ICDs.
Use of a systematic procedure
When asked if they used a systematic procedure to assess the needs of ICDs, 69.1% of the participants said “no”. However, we observed a discrepancy between these answers and the descriptions given by the participants (see Table 2): While the majority of those answering “no” described using a non-systematic procedure (56.4% of all participants, n=31), seven (12.7%) explained that they systematically used some kind of assessment tool. Conversely, among those answering “yes”, only 8 (14.5% of all participants) actually described a systematic procedure.
Table 2. Use of systematic procedure: participant responses versus identified procedures in the descriptions (N=55)
|
Use of systematic procedure
|
|
|
|
No
|
yes
|
total
|
|
n
|
%
|
n
|
%
|
n
|
%
|
non-systematic procedure
|
29
|
52.7%
|
5
|
9.1%
|
34
|
61.8%
|
systematic assessment focused
on PwD but non-systematic for ICD
|
2
|
3.6%
|
4
|
7.3%
|
6
|
10.9%
|
systematic procedure
|
7
|
12.7%
|
8
|
14.5%
|
15
|
27.3%
|
total
|
38
|
69.1%
|
17
|
30.9%
|
|
|
Consistency of practices within the organisation
More than half of the participants (58.2%, n=32) reported homogenous needs assessment practices within their organisation, yet a large proportion of respondents (41.8%, n=23) considered that their colleagues assessed the needs of ICDs in heterogenous ways. Among them, 73.9% (n=17) described that each person assessed these needs differently, while 17.4% (n=4) reported differences between departments or professions. Differences were explained by the highly individualized nature of the procedure (n=7), the lack of a common tool to assess needs (n=7), or a different use of common tools (n=3). One person did not answer this question.
We do not have a specific tool or procedure for assessing the needs of informal caregivers in our organisation. So, each social worker assesses the needs differently. ID 21
Training in needs assessment
Nearly half of the respondents (n=26, 47.3%) claimed to be trained to assess needs. Among these, 10 cited a specialised continuing education programme (e.g. in psychogeriatrics), 7 mentioned training related to the use of a specific tool or method (e.g. RAI or ELADEB), 3 cited their primary professional training (e.g. as a psychologist or a nurse), 3 referred to a short course provided by associations as a preparation for volunteer work with PwD, and one mentioned internal training by colleagues. Two descriptions could not be classified in the above categories as they were too vague.
Average duration of a needs’ assessment
The amount of time invested to assess the needs of ICDs ranged from 5 minutes to 2 hours, with a median of 45 min (Q1=17.5, Q3=75, n=49). A quarter of all respondents (24.5%, n=12) used 15 minutes or less.
Frequency of reassessment
Eighty percent (n=44) of the participants claimed to reassess the needs of ICDs. Regular reassessment was the most common (61.4%, n=37), although the frequency was highly variable (range from “weekly or more if needed” to “once a year”) or not quantifiable (e.g. “at each visit” or “after two sessions”). One quarter reported irregular reassessment (22.7%, n=10), as exemplified in this answer: at each appointment, the frequency of the appointments depends on the patient's situation ID 31. The others (15.9%, n=7) mentioned reassessing non-systematically or only when they had follow-up contacts with the ICDs, as expressed here: I only reassess if I have contact with the person again. So, there is no usual time after which a needs assessment is carried out. This is because we have mostly one-off requests from our clients ID 21.
Feedback given to ICDs about their needs
The vast majority of participants (86.5%, n=45) answered that they gave feedback to the ICDs after assessing their needs, while only 13.5% (n=7) provided no feedback (missing n=3). Descriptions of the content of each feedback (n=28) showed that 78.6% (n=22) gave advice or offered help, 50% (n=14) reformulated or acknowledged the needs, and 21.4% (n=6) referred the person to other support services. Additional details provided by some participants suggested that feedback was mainly provided orally (n=22 out of 30; written n=6, oral and written n=2) and at the moment (n=11 out of 14; a posteriori n=3). The following example is a feedback with advice and validation, as well as referral to the appropriate services: During the interview, I give them hints depending on their specific needs. I refer them to competent services when this is beyond my skills. I do not give them formal feedback. […]. The feedback consists mainly of intervention tips and also of listening and recognizing their investment, the resulting fatigue, the importance of not forgetting themselves in order to be able to continue caring. ID 26
Transmission of the collected information
Two thirds of the respondents said that they passed on the information collected about the needs of ICDs to other professionals (64.2%, n=34; no transmission 35.8%, n=19; missing n=2). Over half (55.9%, n=19) mentioned active internal transmission, often to inform colleagues involved in care, as in this example: In part, to the healthcare assistants who work in our respite care service: this mainly concerns the situation and information about the patient they are going to take care of. For the needs of the relatives, mainly to our home counselling volunteers. ID 29
A significant majority explained that they transmitted information to other partners or institutions involved in care (55.9%, n=19), predominantly general practitioners or home care services:
If necessary, this information is shared (verbally or in writing) with our network partners when implementing the support service. ID 72 Among these responses, 7 said they did both types of transmission, as in this example: We do transmissions to our nursing colleagues and also to the physicians, the liaison service if necessary, and we also work with [the palliative home care team] to find out how it is going at home. ID 174
Several responses mentioned transmission to family members, without specifying whether the information concerned the needs of the ICD or of the PwD (20.6%, n=7). Among the responses which specified the mode of transmission (n=20), written transmission was the most common (n=10; oral and written n=5; oral n=5).
Storage of the collected information
Almost all respondents said that the information collected about the needs of ICDs was stored (90.9%, n=50; not stored anywhere n=5). Storage was predominantly done in some form of patient or client file (68%, n=34), and sometimes in a file linked to an assessment tool (12%, n=6). The collected data were often stored in the PwD's file (57.9%, n=22 out of 38; ICD’s file n=8; unclear n=8). Other storage practices included unspecified reports or computer programs (14%, n=7) and personal notes (10%, n=5). Among the responses which specified the storage support (n=29), a vast majority indicated computer storage (89.7%, n=26, out of which 3 with paper backup; paper only n=3).
Access to the stored information
Among participants reporting that they shared their stored data (n=40, missing n=5), 82.5% (n=33) said that these could be accessed by all their colleagues, i.e. their whole team, department or institution; six also explicitly mentioned here their hierarchy. Six participants (15%) responded that access was limited to specific stakeholders, half of them mentioning that these stakeholders need to be involved in care: My colleagues who may be asked to replace me in case of emergency or absence ID 72. One person described that the data was only accessible by the organisation's management team (2.5%).
[1] Examples of responses:
The close family has given me several suggestions for care, and observation of the person [with dementia] and their living environment helps me to make the right choices. […] ID 47
In my situation, the person suffering from Alzheimer's lives alone, and the informal caregivers mainly come forward by telephone […]. I observe 'taboo', minimization, and unfortunately even indifference on the part of some family members. ID 87
[2] For example, descriptions of using a questionnaire and also discussing with the ICD were coded as “using systematic tools to evaluate the needs of ICDs”.
[3] Activities of daily living (ADL) is a questionnaire to assess the level of dependence for essential activities such as feeding, bathing or moving around, while Instrumental activities of daily living (IADL) is a questionnaire to assess the level of dependence for functional activities like shopping, cooking or housekeeping [29].
[4] Resident Assessment Instrument – Home-Care (RAI-HC) / Minimum Data Set (MDS) is a standardized tool for clinical analysis and targeted intervention plans. It covers 19 domains such as cognitive status, nutritional status and hydration, as well as social function and support from family and friends [30]. The latter is limited to three questions asking about the existence of caregivers, whether they can continue to help, and some information about the help given.
[5] Short questionnaire based on ADL/IADL to assess the level of dependence of the PwD.
[6] The Zarit Burden Interview assesses the subjective burden of informal caregiver focusing on the impressions and feelings most frequently experienced by the ICD such as feelings associated with the PwD’s care, health, sense of responsibility, relationships with other family members [31].
[7] The Lausanne ELADEB scales allow assessment of psychiatric patients' difficulties and needs in 18 domains covering pragmatic aspects of daily life (e.g. finances, free time, household maintenance), relational life and social network (e.g. family or sentimental relationships) and the health sphere (e.g. nutrition, personal hygiene or psychological state) [32].
[8] The Virginia Henderson Questionnaire defines 14 components required for effective nursing care, based on human needs (e.g. sleep and rest, avoiding dangers, or acting on beliefs and values) [33].