Informal care,employment and quality of life: Barriers and facilitators to combining informal care and work participation for healthcare professionals

Abstract

BACKGROUND:

In The Netherlands, one out of six Dutch employees has informal care tasks; in the hospital and healthcare sector, this ratio is one out of four workers. Informal carers experience problems with the combination of work and informal care. In particular, they have problems with the burden of responsibility, a lack of independence and their health. These problems can reveal themselves in a variety of mental and physical symptoms that can result in absenteeism, reduction or loss of (work) participation, reduction of income, and even social isolation.

OBJECTIVE:

The aim of the study was to describe the factors that informal carers who are employed in healthcare organizations identify as affecting their quality of life, labour participation and health.

METHODS:

We conducted an exploratory study in 2013-2014 that included desk research and a qualitative study. Sixteen semi-structured interviews were conducted with healthcare employees who combine work and informal care. Data were analyzed with Atlas-TI.

RESULTS:

We identified five themes: 1. Fear and responsibility; 2. Sense that one’s own needs are not being met; 3. Work as an escape from home; 4. Health: a lack of balance; and 5. The role of colleagues and managers: giving support and understanding.

CONCLUSIONS:

Respondents combine work and informal care because they have no other solution. The top three reasons for working are: income, escape from home and satisfaction. The biggest problems informal carers experience are a lack of time and energy. They are all tired and are often or always exhausted at the end of the day. They give up activities for themselves, their social networks become smaller and they have less interest in social activities. Their managers are usually aware of the situation, but informal care is not a topic of informal conversation or in performance appraisals. Respondents solve their problems with colleagues and expect little from the organization.

Keywords

Women’s health combination work feeling trapped call on responsibility

1 Background

The Dutch government defines informal care as “care for someone who needs care, that is not given as a part of professional care, but by one or moremembers of his/her immediate environment as a direct result of the social relationship” [1]. There is a difference between informal care and usual care. Usual care is the normal daily care of family members and household members for each other; caring for the household or for a child for example[2, 3].

In 2014, there were 4 million people in The Netherlands (18 years and older) providing informal care for their relatives [4]. More than 1.4 million people were providing intensive informal care for more than 8 hours per week, and 2.3 million people were providing long-term informal care for more than three months.

More than half a million people in The Netherlands provide both intensive and long-term informal care. Of this group, one out of seven feels overloaded [4].

Seventy-one percent of the informal Dutch carers under the age of 65 (2.8 million people [5]) also have a paid job [6]. This means that one out of six Dutch employees also has informal care responsibilities [7]. In the hospital and healthcare sector, this ratio is one out of four workers [8]. Most healthcare professionals are women, 90% of the nurses are female [8, 9].

Informal carers often want to continue working for reasons such as escaping some of the caregiving-related stress at home, maintaining social contacts or guaranteeing an income [10].

Many informal carers experience problems related to combining paid work and informal care [11 –13]. They find that the informal care is too great a responsibility, and that it affects their independence and their health, leading to conflicts at work or at home [14, 15]. This overload can manifest itself in symptoms such as musculoskeletal disorders, chronic pain and fatigue, burnout, and depression [3 , 14].

Several studies have highlighted stress as primary concern for informal carers. They feel stressed in terms of emotional health and to which level the stress is felt they manage their work-life balance [16]. The combination of care and work can have negative results like absence from work, reduced work participation, lower income, and even social isolation [17]. Nurses (registered nurses, enrolled nurses, licensed vocational or practical nurses and nurse care helpers) who work in shiftwork show problems with respect to health, social and domesticproblems [5].

Fifty-five percent of working carers negotiate with colleagues or management at work about their informal care tasks [4 , 13]. These negotiations involve schedules, absence from work for informal care tasks, and compensation for absent hours.

In 2014, between 50,000 and 100,000 working carers chose to work fewer hours, or temporarily or permanently stopped working, because the combination of work and informal care created too great a strain and resulted in serious health problems [4 , 19]. In the group of working carers with intensive care tasks (>4 hours per day), 17% reduced their working hours and 75% stopped working because of health problems [6].

The combination of informal care and paid employment also has positive aspects for the carers. These include being able to get out of the home situation, having contact with colleagues, maintaining income, and feeling valued by colleagues, management, and clients for doing one’s job [11].

The Dutch government has expressed concern about the effects of some societal changes: increasingly smaller living units due to an increasing number of single people and more divorces, the emancipation of women, and the increasing mobility of the Dutch population, which leads family members to live larger distances from each other [20].

The increased demand on informal care within social care networks is partly a result of cuts made to subsidized care to reduce the costs of care in The Netherlands [20]. All these changes will still be relevant in the future and will have a negative impact on informal care [21]. Healthcare budget cuts and the aging population will create increasing pressure on people to provide informal care.

Publications from the Council for Social Development [4 , 22] about arrangements for sick leave, from the Social and Cultural Planning Bureau [19] about working time adjustments and from the Vilans Centre of Expertise for Long-Term Care [23] raise the issue of whether the future supply of informal care can keep up with the demand [4 , 23–25]. The aging of the population is expected to create another rise in the demand for informal care, especially because the Participation Act will encourage (or force) people with chronic health problems (in terms of illness and disability) to live at home longer [22, 26].

1.1 Combining care and work in healthcare

Healthcare organizations are paying more and more attention to the sustainable employability of their employees, especially to their informal caregiving employees [13, 27]. Because of the nature of their profession and their knowledge of healthcare, healthcare professionals often become the central carers for loved ones [5]. Combining informal care and work is risky, especially for healthcare professionals who want to care for others and often do not ask for care or attention themselves [28, 29].

In The Netherlands and throughout the world, healthcare is a sector where the workload is very high [30 , 31–34]. Six out of ten people working in healthcare worry about whether they will still be able to work as they grow older and whether they will be able to keep their jobs. Twenty-eight percent think that working in a care profession after a certain age is almost impossible, because it is too physically or mentally taxing [25 , 35].

Many employers are hardly aware that the employee of the future will be a working informal carer [36]. In healthcare, management pays little attention to or has little awareness of their own employees who, in addition to their jobs, also provide informal care [20]. It is important to know what work means to these informal caregiving employees in healthcare. Do they experience work as a burden or as an escape from the home situation? Does it matter if you are caring for parents, children or a partner? What are barriers and facilitators to combining work and informal care? This research aims to understand the situation of caregiving healthprofessionals.

1.2 Research question

The aim of this study is to get more insight in the relationship between informal care and paid work, especially for informal carers who work in healthcare. The research question is: Which environmental and personal factors can be identified (in the literature and by informal carers themselves) that have a positive or negative impact on the quality of life, labour participation, and health of informal carers employed in healthcare organizations?

2 Methodology

2.1 Design of the study as a whole

An exploratory study performed in 2013-2014 consisted of desk research (a scoping literature review using Arksey and O’Malley’s [37] method) and a qualitative study. The results of the literature review were used to formulate questions for an interview guide used in the qualitative study. We conducted semi-structured interviews with employees in healthcare who combine work and informal care.

2.2 Literature search

The literature search aimed to find factors that affect the positive or negative quality of life of professionals who combine work in healthcare with informal caregiving. The review started with a search in PubMed using the following terms: ‘informal care AND occupation’, ‘informal care AND paid employment’, and ‘informal care AND work and family care AND labour’. The results were sometimes related to very specific groups of patients who receive informal care (certain diseases, palliative care, war veterans) or very specific carers (professionals such as doctors and diabetes nurses). After discussion with the research group, it was decided that those very specific results were not useful for this research.

Because searching in PubMed yielded no useful references, we used the ‘snowball method’ [38] to find more general information about combining informal care and (paid) work. We searched ‘grey literature’ like descriptions of theses published in The Netherlands and publications from various ministries, academic institutions, and other organizations. We began with key documents and publications from the Social and Cultural Planning Bureau, the Ministry of Health, Welfare and Sports, and the websites of Movisie, Mezzo and Informal Care and Work (Dutch organizations directed at home care and informal carers). This ‘snowballing’ resulted in a list of authors who were repeatedly mentioned in publications in our field of interest.

Further investigation of these authors’ publications found that some of them have done a lot of research into informal care and, in some cases, the combination of work and informal care. We used the references in these reports and articles to find relevant publications from other authors.

2.3 Recruitment of interviewees

Three homes for elderly care were included in this study. The researchers asked two of them to participate in the study; the third contacted the research team because they wanted to start researching combining work in a health profession and caregiving tasks at home.

All three homes provide housing for elderly people, care, and home care in combination with other services:

Home 1: welfare, rehabilitation, and services supporting living at home.

Home 2: recovery hotel (recovery, rehabilitation, interim care, temporary stay), domotics (home automation to support independent living), and an expertise centre for elderly people and neuro-rehabilitation.

Home 3: community care, home care shop, and remote care (telecare: the patient stays home and a professional can watch this person with a webcam and decide which care is needed).

In all three homes, respondents were recruited in different ways. These included a conversation (personal or by telephone) with the manager to explain the research, sending information to the department heads, posting a message on the intranet of home 3 and the internal newsletter, and –in case of insufficient response – having the supervisor personally approach possible respondents. The managers of the three homes identified eligible candidates and ensured that they received the study information via e-mail.

When candidates were willing to participate in an interview, the first author (EH) phoned each respondent to give additional information and make an appointment. The employee’s eligibility was also checked during this phone call based on the inclusion criteria (Table 1).

Table 1
Inclusion criteria for the respondents

Characteristic Criteria

Number of respondents As many as needed to reach saturation

Sex Women (because the vast majority of healthcare employees are female)

Age 20–65 years

Work with healthcare organization At least 20 hours per week

Provide informal care At least 8 hours per week over the last 3 months (preferably as the central carer)

Awareness of role Aware that she is an informal carer

Characteristic	Criteria
Number of respondents	As many as needed to reach saturation
Sex	Women (because the vast majority of healthcare employees are female)
Age	20–65 years
Work with healthcare organization	At least 20 hours per week
Provide informal care	At least 8 hours per week over the last 3 months (preferably as the central carer)
Awareness of role	Aware that she is an informal carer

2.4 Development of the interview guide

Based on the results found in the publications, we created a list of domains related to the quality of life of health professionals who combine work and informal care (Table 2). This list of domains was used as an aid in developing the interview guide [4 , 38].

Based on the results (as presented in Table 2) and after discussion with the research group, a total of 17 questions were included in the interview guide. These included open, closed, and multiple-choice questions (Box 1).

Table 2
Domains and aspects for the interview guide

Domain General aspects Specific aspects

1 Positive aspects: aspects of informal care that may have a positive impact on quality of life –maintaining roles and identity

–work participation

–control over one’s own life

–income

–satisfaction with work

–social contacts and colleagues

–being away from ‘home’ for a while or having something else to do

2 Negative aspects: aspects of informal care that may have a negative impact on quality of life –worries about the future, feeling responsible for care

–combination of work and informal care increases the risk of overload

3 Perceived health by the health professional who is also a carer –physical complaints

–difficulty relaxing

–fatigue/exhaustion

–finding energy for one’s own pursuits

–having difficulty concentrating and sleeping

–mood symptoms

4 Arrangements –arrangements in law and regulations that are relevant to employees

–ability of managers to create arrangements for employees that support informal carers (e.g. only day shifts, no weekend shifts, flexible working hours)

Box 1.

2.5 Interviews

The first author conducted all the interviews. These were held in locations chosen by the respondent: their home, their workplace or the interviewer’s office. Each interview lasted between one and one-and-a-half hours.

Each interview began with some informal talk about the setting. The interviewer asked whether the interviewee understood the purpose of the interview and whether the interviewee had any questions that needed to be answered.

The interviewer also asked whether the interviewee understood the reason for audiotaping the interview and the goal of writing an article. The interviewer requested permission to audiotape the interview, with the assurance that everything would be treated confidentially and anonymously.

A pilot interview was conducted to discover whether the interview guide was adequate for achieving the goals of the research. After this interview, it was decided that the topics met the aim of the study, the sequence of questions was logical, and the duration of the interview was within the estimated feasible interview time.

2.6 Data analysis

The interviews were transcribed and uploaded into ATLAS.ti^© (version 7.5.9), a program for qualitative data analysis. The following steps were taken:

Reading the transcripts multiple times to understand the respondents’ experiences

Assigning codes to the transcripts related to the interview topics and research questions

Assigning codes to the transcripts by a fellow researcher from the same research group for three transcripts; these codes were discussed for consensus and to be sure that no codes were overlooked

Clustering codes into meaningful units

Categorising meaningful units into themes

Discussing the themes and relationships between themes and subthemes with the second and third authors.

3 Results

3.1 Respondents

Seventeen respondents were recruited; one could not be interviewed due to illness. The other 16 were interviewed at locations selected by the respondents: ten in their workplaces, three at their homes and three at the interviewer’s office at HAN University of Applied Sciences.

The respondents were all Caucasian women who resided in The Netherlands and were aged 39 to 62 years. They had been providing informal care for an average of 16.3 years (range: 2 to 45 years). All of them were employed in healthcare with roles such as carer, nurturing IG-level 3, nurse, receptionist, hostess, front desk employee, volunteer coordinator, activities coordinator, operations supervisor or manager (see Table 3).

Table 3
Demographic profile of respondents who are informal carers and healthcare professionals

Respondent number Age Marital/household status Informal carer for Caring duration and hours Position/work

1 62 Divorced, cohabiting with her mother Mother (age 100) arthrosis 23 years, last 15 years cohabiting, caring while at home Home carer

Son (age 38) after surgery Temporarily, 2 hours per week

2 44 Married Daughter (age 12) autism spectrum disorder PD-NOS 12 years, caring while at home Home nurse

Father and aunt, died both 2 years ago 10 years

3 50 Divorced Mother (age 84) neurological problems 45 years, 8 hours per week Home carer

Father (age 86) Prostate and bone cancer 7 years, 8 hours per week

Son (age 15) autism spectrum disorder 15 years, caring while at home

4 54 Married Son (age 22) Mentally retarded 22 years, caring while at home Home carer

5 49 Married Son (age 16) Severely mentally retarded 16 years, caring while at home Manager

6 49 Married Father (died 2 years ago) stroke 10 years, 8 hours per week Hostess

Daughter (age 16) cardiac and psychological problems 16 years, caring while at home

Son (age 18) autism spectrum disorder 18 years, caring while at home

7 50 Cohabiting Daughter (age 15) mentally and physically handicapped 15 years, caring while at home Front desk employee

8 49 Married Mother (age 85) dementia 2 years, 20 hours per week Carer in a nursing home

9 48 Married Husband (age 50) incapacitated autism 21 years, caring while at home Caring on a ward

Son (age 21) autism 21 years, caring while at home

Son (age 15), ADD 15 years, caring while at home

10 39 Cohabiting 2 sons of partner (age 13 and 15) (former relationship) behaviour problems and violent 2 years, stopped Day care employee

Father (died last year) multiple sclerosis 26 years, 8–40 hours per week

11 55 Married Mother (age 87) bone marrow cancer and autoimmune disease 15 years, 8–30 hours per week Home nurse

Father (age 93) prostate cancer 10 years, 8–30 hours per week

12 49 Married Father (age 84) vascular dementia 10 years, entered a nursing home in July 2013, 8–22 hours per week Home nurse

Mother (age 81) burnout 1 year, 8–22 hours per week

13 41 Single Brother (age 46) cancer 2 years, 3–6 hours per week Front desk employee

14 46 Divorced Mother (died September 2013) cancer 2 years, 35 hours per week Home care

15 59 Widow Husband (died in 2012) cancer 12 years, caring while at home Front desk employee, volunteer coordinator

Father (died in 2001) cancer 11 years, 18–32 hours per week

Mother (age 89), CVA 12 years, 18–32 hours per week

16 48 Married 2 sons (age 15 and 20) Fragile X-syndrome 20 years, caring while at home Home carer

Respondent number	Age	Marital/household status	Informal carer for	Caring duration and hours	Position/work
1	62	Divorced, cohabiting with her mother	Mother (age 100) arthrosis	23 years, last 15 years cohabiting, caring while at home	Home carer
			Son (age 38) after surgery	Temporarily, 2 hours per week
2	44	Married	Daughter (age 12) autism spectrum disorder PD-NOS	12 years, caring while at home	Home nurse
			Father and aunt, died both 2 years ago	10 years
3	50	Divorced	Mother (age 84) neurological problems	45 years, 8 hours per week	Home carer
			Father (age 86) Prostate and bone cancer	7 years, 8 hours per week
			Son (age 15) autism spectrum disorder	15 years, caring while at home
4	54	Married	Son (age 22) Mentally retarded	22 years, caring while at home	Home carer
5	49	Married	Son (age 16) Severely mentally retarded	16 years, caring while at home	Manager
6	49	Married	Father (died 2 years ago) stroke	10 years, 8 hours per week	Hostess
			Daughter (age 16) cardiac and psychological problems	16 years, caring while at home
			Son (age 18) autism spectrum disorder	18 years, caring while at home
7	50	Cohabiting	Daughter (age 15) mentally and physically handicapped	15 years, caring while at home	Front desk employee
8	49	Married	Mother (age 85) dementia	2 years, 20 hours per week	Carer in a nursing home
9	48	Married	Husband (age 50) incapacitated autism	21 years, caring while at home	Caring on a ward
			Son (age 21) autism	21 years, caring while at home
			Son (age 15), ADD	15 years, caring while at home
10	39	Cohabiting	2 sons of partner (age 13 and 15) (former relationship) behaviour problems and violent	2 years, stopped	Day care employee
			Father (died last year) multiple sclerosis	26 years, 8–40 hours per week
11	55	Married	Mother (age 87) bone marrow cancer and autoimmune disease	15 years, 8–30 hours per week	Home nurse
			Father (age 93) prostate cancer	10 years, 8–30 hours per week
12	49	Married	Father (age 84) vascular dementia	10 years, entered a nursing home in July 2013, 8–22 hours per week	Home nurse
			Mother (age 81) burnout	1 year, 8–22 hours per week
13	41	Single	Brother (age 46) cancer	2 years, 3–6 hours per week	Front desk employee
14	46	Divorced	Mother (died September 2013) cancer	2 years, 35 hours per week	Home care
15	59	Widow	Husband (died in 2012) cancer	12 years, caring while at home	Front desk employee, volunteer coordinator
			Father (died in 2001) cancer	11 years, 18–32 hours per week
			Mother (age 89), CVA	12 years, 18–32 hours per week
16	48	Married	2 sons (age 15 and 20) Fragile X-syndrome	20 years, caring while at home	Home carer

3.2 Care provided

The respondents provided all kinds of care: domestic care, laundry, grocery shopping, administration and taxes, making appointments, providing transport (nursing homes, general practitioner, hospital, family, mental institute, places to stay), visiting in the hospital or nursing home, guidance during doctors’ visits, preparing meals (cooking), sorting medication and monitoring intake, gardening, providing structure and guidance, companionship, and mental support. In addition to the informal care, professional care was also available in some families: this included home nursing for washing and dressing, a personal budget (guesthouse for the weekend, leisure activities, accompaniment), and taxi transport for going to school.

3.3 Codes and themes

The codes that emerged from the 16 interviews were grouped together into themes. Based on the analysis, we formulated five themes (see Table 4 for the themes and included codes).

Table 4
Codes and themes

Codes Themes

–Unable to let go of responsibility for the care 1. Fear and responsibility

–Being convinced that she is the only one who can provide correct care

–No substitution

–Double standards: Wants to do both her work and informal care properly, but does not have enough time and energy

–Insecure future for the carer

–Isolation 2. Sense that one’s own needs are not being met

–People in her social environment do not understand how hard it is

–No more participation in social activities

–Always busy with caring for someone else

–No activities or hobbies

–Work is me-time 3. Work as an escape from home

–Letting go of home, other responsibilities

–Feeling pleasure, satisfaction, appreciated

–Contact with colleagues

–Making money as breadwinner or for extras

–Acquired rights

–Always keep going 4. Health: A lack of balance

–Sleep deprivation and fatigue

–Physical and mental complaints

–Constant burnout

–No limits, everything must be done

–Recognition 5. The role of colleagues and managers: Giving support and understanding

Thoughtful

Caregiving is subject of conversation

No explanation about arrangements

Fear of reorganization

Codes	Themes
–Unable to let go of responsibility for the care	1. Fear and responsibility
–Being convinced that she is the only one who can provide correct care
–No substitution
–Double standards: Wants to do both her work and informal care properly, but does not have enough time and energy
–Insecure future for the carer
–Isolation	2. Sense that one’s own needs are not being met
–People in her social environment do not understand how hard it is
–No more participation in social activities
–Always busy with caring for someone else
–No activities or hobbies
–Work is me-time	3. Work as an escape from home
–Letting go of home, other responsibilities
–Feeling pleasure, satisfaction, appreciated
–Contact with colleagues
–Making money as breadwinner or for extras
–Acquired rights
–Always keep going	4. Health: A lack of balance
–Sleep deprivation and fatigue
–Physical and mental complaints
–Constant burnout
–No limits, everything must be done
–Recognition	5. The role of colleagues and managers: Giving support and understanding
Thoughtful
Caregiving is subject of conversation
No explanation about arrangements
Fear of reorganization

Theme 1 Fear and responsibility

All the respondents combine work and informal care because they have no other solution. Respondents with children who need additional care have built a routine over the years and a structure in which the family can function optimally. They spend many hours on informal care (see Table 3).

For many of the respondents the amount of care increased slowly; it began with some help and imperceptibly grew into more care. They continue caring because they are convinced that they are the only ones who can do it correctly. Their greatest fear is that something will happen in their (health) situation which would force them to let professionals take care for their relatives. They fear their relatives will not receive the sort of care they provide, which they consider to be better than professionalcare.

Respondents are central carers because they are familiar with caring, they know how organizations work, and they know how healthcare is organized. The respondents with children are sometimes more realistic and think about outplacement. Some of these respondents are involved in new initiatives for housing forms with parental participation.

Respondent 4

“Also in your holiday, you really cannot let go of that care. You’re going to do more and more for your mother. Yes. Due to this informal care, you actually never have a break.”

Respondent 8

“Yes, they are all aware of the situation and what I do at home, and then they say: ’What you do at home is the same as you’re doing here’. I’ll continue to do it for as long as I can. If there is no support or no possible regulations, I don’t ask for help from my colleagues. I usually plan it in such a way that I can do it myself.”

Respondent 9

“And the care and pressure will continue with my middle sons. With the sheltered home we have parental participation, so control, regulation, and supervision will continue.”

Respondent 15

“She (my mother) didn’t want to go to a nursing home and my sister and I both have experience with care. We said: ‘If we can do it ourselves, we prefer not to let her go to the nursing home !”’

Theme 2 Sense that one’s own needs are not being met

The biggest problems mentioned were lack oftime and energy. Respondents mentioned fatigue and a lack of rest that restricts their activities. Respondents make certain choices such as spending little (or no) time on hobbies, sports and meeting friends. Other time-saving strategies include having a hairdresser come to their home, making fewer appointments, consciously choosing activities, carefully planning activities when children are not at home, and scheduling no activities outside the house in the evening.

As a consequence, these people have smaller networks and fewer friends, feel lonely, have no hobbies, and have seen their physical condition deteriorate. Their worlds get smaller and smaller, and they run the risk of social isolation. That is why work is so important for all of them.

Respondent 9

“It is a crowded, super busy life, but the rest will come when they are all out of the house and have found their places. Maybe then I’ll have time to do my own things.”

Respondent 11

“I used to make handmade postcards. Well, that kind of hobby … I don’t have time for that kind of thing anymore. Social contacts, meeting friends and so; there’s hardly time for that.”

Respondent 12

“I think at some point you don’t experience— even though this is not always true— you no longerexperience that you have time for yourself. Because I have Mondays and Thursdays free from work and that was always dominated by caring for my parents. That’s when I went to my parents.”

Respondent 16

Table 5

Main reasons for working

First reason	Second reason	Third reason
1. income	1. social contacts	1. social contacts
2. satisfaction / challenge	2. satisfaction / pleasure at work	2. pleasure at work
3. pleasure at work / social contacts	3. income	3. satisfaction / appreciation

“Actually, it is true that if our son is not at school, we take care of him and I can’t leave. I can’t even leave to post a letter from a quarter to four until a quarter to ten. Then helping with showering takes another hour. He is tired and needs help showering; he doesn’t want to do it. Brushing teeth is very bad when he does it himself, you should go back again, and he is not potty-trained so he needs a diaper. If you do well, it’s about eleven o’clock by the time he lies in bed and asks nothing more.”

Respondent 16

“And I must say that you are often so tired that you get in a sad mood and that is also a big disadvantage: you know this will continue year in and year out. It does not stop and it is killing you sometimes. I do it with love, but it does not stop and that means you may have a very small world. When he’s out, you can do what you want, but you’re so tired. And you don’t want to do anything, you’re so tired.”

Theme 3 Work as an escape from home

Income

Respondents were asked about their mainreasons for performing paid work. They were asked to create a top three from an overview consisting of positive and negative reasons for working. All the respondents chose (mostly) positive reasons(see Table 5: Main reasons for working). The first reason is income. Seven respondents are breadwinners and depend on their work for income. Theother respondents just like having extra income.Some of the respondents called this ‘the icingon the cake’, extra money to compensate for thethings that are not possible. For example, a respondent might allow herself to buy a new handbagor a book, or go on an expensive outing to a themepark.

Respondent 8

“If only my husband earned money, it would be a very vulnerable situation. And if you have nothing to spend all day, it becomes annoying. It is true that if I see a nice bag … I love handbags, so I just buy it. And if you can’t spend anything, and you count and count the whole day, then you feel like you have nothing left.”

Escape from home

Table 6

The impact of the combination of work and informal care on perceived health (n = 16)

Perceived problems	Never	Sometimes	Often	Always
Physical complaints (tiredness, headaches, stomach ache)		2	2	12
Respondents mentioned: fibromyalgia, thyroid problems, pneumothorax, back pain, decreased appetite and weight loss, shoulder pain due to lifting, bladder prolapse surgery, less resistance, deafness, Meniere’s disease, high blood pressure, inflammation of the legs, upset stomach
Difficulties relaxing at the end of the day	6	6	2	2
Feeling exhausted at the end of the day		3	6	7
Having energy for one’s own pursuits	6	8	2
Suffering from concentration and sleep problems	3	3	5	5
Mood disorders/lack of resilience (irritable, lethargic, sad)	3	5	4	4

The respondents spend many hours on informal care and many of them see work as an escape from their private situations. Work gives them pleasure, another role, and contacts with colleagues about ‘normal’ things.

Respondent 2

“There was a time when I had to go home and I was crying in the car. I wished I could stay longer at my job.”

Respondent 3

“I can n ot stay at home. I like my job; it’s a lot of fun.”

Satisfaction

Positive reasons for working include social contacts at work, satisfaction, challenge, pleasure at work, appreciation, and being away from home. An additional reason, which was not specifically asked for, is that 15 respondents really love their work; one said that she would do it voluntarily if she did not need the money.

Respondent 2

“I get a lot of satisfaction. I find it to be a wonderful job and I love to make people enthusiastic about the profession.”

Respondent 3

“And someone said to me this morning: ‘You think that’s nice, huh?’ I said: ‘Yes, the crazier, the better’. This morning was just another crazy man and everyone had trouble with him, but I never bother with that. I think I love it, dealing with people like that. To mean something for thosepeople.”

Respondent 8

“If I had to choose a profession, I would choose this profession with no hesitation again, yes. I get a lot of satisfaction. I think, yes, I really enjoy it too.”

Theme 4 Health: a lack of balance

Perceived health

The respondents who had provided informal care over a long period (see Table 1) were asked how they perceive their own health.

As can be seen in Table 6, they all have physical problems and many are tired: six are often and four are always exhausted at the end of the day.

Some respondents have found ways to relax at the end of the day, such as playing (computer) games, doing crafts, teaching (as a volunteer), walking, watching TV, biking, smoking, talking to their husband, doing yoga, gardening, and reading. Many respondents reported having sleep problems (to varying extents) and mood disorders such as irritability.

Respondent 1

“I notice it physically: I’m just exhausted in the evening and if I have the chance to go somewhere, I’m just too tired.”

Respondent 2

“Sad, hopeless: for this we will not find a solution. Quickly irritated; I just really overreact to small things. I feel very guilty afterwards.”

Respondent 3

“I sometimes just need my rest. I think I rattle on in my head, I was swept away from it all, you no longer know what you’re doing. You’re doing everything wrong, then you also do not pay attention to your patients, so it’s not a good option if you are going to work.”

Respondent 4

“Yes, at that time I did a lot of crying and had a very hard time. And here at work it did not go well; yes, a lot of fatigue and poor sleep.”

Respondent 5

“I’ m a do-woman and you have to do it all. Then I think about the things I should also do for work that are not my favourite tasks. I’m so tired that those extra tasks and additional things come over me and then I think, I’m so tired, I can burst intotears.”

Theme 5 The role of colleagues and managers: giving support and understanding

Colleagues are very important to the respondents. They know their private situations, show understanding, and are willing to exchange services whenever necessary. Respondents expect little of their organizations when it comes to arrangements and support; instead, they solve their problems with colleagues. Colleagues are increasingly important when it comes to goodwill. Some employees, especially in home care, have ‘acquired organizational rights’. For example, they only have night shifts, only work on the weekend, or work day shifts until 3 pm. This is very important to their ability to continue combining informal care and work.

Reorganizations can interfere with these rights, for example by requiring all employees to work all shifts (day shift, night shift, night and weekend shift). This can jeopardize the arrangements made by respondents with children with a disability, such as working at regular times to make it possible for a trusted person to care for the child when they are at work or working when the children are atschool.

Respondent 9

“If it is something that happens suddenly, I can exchange a day or a shift, but I also exchange right back again, then I work such a day for you. So far that has been easy to arrange.”

Respondent 6

“A lot of listening and they asked how it was. They see that I am very tired, and I say that I’ve overslept because I slept very poorly for a few nights. Then they catch on.”

Role of management

The manager is usually aware that the employee is combining work and informal care, but the informal care is not a topic of formal or informal conversation. Managers generally do not ask how the employees are doing.

Respondents indicated that they would appreciate it if their manager would ask how they are doing or would show interest in the situation at home on their own initiative.

The respondents’ personal situations and work-life balance are not discussed during their annual performance reviews. Their capacity to continue working (sustainable employability) is also not on theagenda.

The vast majority of the respondents were not familiar with their organization’s leave arrangements, although some of them need this information. They expect their managers to inform them about it. Respondents said that they would only go to theirmanagers if they could no longer cope with their situation, fail to manage their situation, or feel their health is in danger (e.g. at risk of a burnout). Fifteen respondents have never reported sick from work due to care tasks. One has reported sick from work five times, in consultation with and with the approval of her manager.

Respondent 2

“Here in the community care I still work 24 hours, mostly day shifts. We now have teams of 12 people and we should solve all client care together, so it means that I will probably have to run more evening shifts. Yes, all these developments also worry me again because my husband also works irregular work schedules, evenings and weekends. That must match. If not, then yes, I will have to find another job. Just day shifts, basically on fixed days (Monday, Tuesday and Thursday) have given me so much space that I have caught my breath and that is what I want to continue.”

Respondent 14

“If it is psychological, or you can no longer care for your mother or it’s too much, that’s no excuse to call in sick.”

Respondent 12

“I work three days a week. Last year my colleagues and I did a pilot project to do the work in the same number of hours over fewer days and that went so well. Before that, I worked four days a week.”

Arrangements

Different organizations provide information about arrangements for leave options in different ways. In one organization, the manager gives active information about arrangements and attention is paid to the employees’ needs. In another organization, no information is given at all. If a respondent wants to know more about a possible arrangement, they do not know where to get that information and the manager does not give the information spontaneously. Another organization forbids employees from making arrangements; instead, they have to take a day off.

Respondent 10

“Then she [the manager] said: ‘If you have trouble again, then we can discuss that together. Then we are going to put in for official care leave. Because I’m concerned every time I get the message that you are sick while I know it is a result of everything going on around you.”’

Respondent 5

“Long -term care leave; I don’t know what it is. I can already lie awake because my mother needs more care. My father died when I was ten. I would like to be much more present for my mother. If she’s sick, I would prefer to put the bed in her kitchen and take care of her myself, but I already know that’s impossible. Actually, she needs care, and I can’t offer it to her. I know she accepts it, but it is not good.”

Respondent 14

“When she [her mother] had to have an emergency admission to hospital and they said she was seriously ill, I just could not work, I was completely broken. I did not take an official leave; I just recorded holidays. I could not call in sick, so I had to take holiday leave.”

4 Discussion

4.1 Quality of life

In line with the scoping review, we found that all the respondents are tired to some extent; the majority are often or always exhausted at the end of the day. They have to give up a lot of activities since they have little or no time for hobbies or sports. Their social networks are becoming smaller; they see friends less often than desired. Due to fatigue, they have less and less interest in social activities, partly because their personal lives are very affected by the informal care they provide. This seems to be in line with the results of other research [12 , 24], which indicate that fatigue is a prominent factor in the perception of health and the experienced condition.

Meaningful others (friends, colleagues, hobby buddies) who are not informal carers cannotunderstand the impact caregiving has on their daily lives. Respondents do not complain and do not want to repeat the same story, making it harder for other people to understand their situation. A number of respondents feel lonely and misunderstood.

They also feel vulnerable: if they are no longer capable of giving the care, they have no idea how their relative will be cared for and they think that no one can do it as well as they do. They have fears about institutionalization, unhappy relatives, and lower-quality care. They go on caring because they are convinced that they are the only ones who can do it correctly. Only one of the respondents said their job performance suffers because of informal caregiving, and only one of them has taken sick leave because of her informal care tasks.

4.2 Job insecurity in times of crisis and cuts in healthcare

At the time of the study, there was an economic crisis in The Netherlands. Many people had lost their jobs and there was rising unemployment. It is especially difficult for older employees to get another paid job.

Budget cuts and the transition of national government finances to municipal finance caused shifts in the supply of healthcare, especially in care for elderly people. Due to the then planned ‘Participation Act’ of 2015, there was a drastic reduction of funding for in-home care, which has, in many cases, led homecare employees to be dismissed. At the time of this study, many care professionals have felt insecure about their job. The number of places in homes for elderly people have also been reduced, which caused a decrease in paid jobs. When people are concerned about losing their jobs, they do not discuss the amount of informal care they deliver or their health problems. They continue their daily work despite fatigue and other problems.

4.3 Self-directed teams

Another way to cut costs in home care is to reduce management by forming self-directed teams. Six respondents had been working for six months in a self-directed team for home care. These teams are self-supporting: they plan their own pursuits, schedule team members (including all shifts, disciplines per patient, holidays and days off), do their own administration, and are responsible for dividing the workload. If a team member is ill, his or her colleagues do the work [39, 40]. From our literature review, it is clear that team members on self-directed teams find it difficult to call in sick, because they feel guilty when a colleague has to do their job in addition to her own. In a self-directed team, team members share all responsibility for the necessary work, so if one person cannot do her work, a colleague must do it in addition to her own. That is a barrier to being absent for anyreason [41].

4.4 Informal care and organizations

The research shows that managers and professionals do not discuss informal care; organizations do not address the impact of the combination of care and work on the employee or what is necessary for employees to stay healthy at work.

Managers do not often offer information about laws and regulations for informal carers and possibilities for leave; instead, employees must actively seek opportunities. In one organization, employees were obliged to take holiday leave to perform informal care tasks.

The increased heterogeneity of carers (working until the age of 68 means there will be more older employees with more informal care tasks) leads to more demand and pressure on caregiving. The complexity and multitude of informal care provision means that a “one size fits all” approach fails to adequately support carers [42].

Limitations of the study

We found few scientific articles, so it was necessary to go ‘snowballing’ and to use ‘grey’ literature. We found no research about health professionals who are also informal carers; the only information we found is that one out of four of this group is an informal carer and that person is usually the central informal carer [43].

4.5 Finding respondents and saturation

Due to their busy schedules, it was difficult to find sufficient respondents. However, we succeeded in including 16 respondents from three organizations that provide elderly care. No new information emerged in the last three interviews, which gives an indication of saturation. There might be a bias, since we cannot rule out the possibility that only more vital and less exhausted healthcare professionals participated in this study. The participants came from three different and varied organizations but this might not be a limitation. Because the three organizations, in terms of size and type of delivered care, are representative of the Dutch elderly care. We suppose that the participants are representative for the informal care giving health professional in the Dutch elderly care. This could be a question for further exploration. Although the 16 respondents held a variety of positions, saturation occurred withrespondent 13.

4.6 Healthy worker effect

It is possible that the ‘healthy worker effect’ occurred in our respondent selection process. That would mean that the respondents were healthier and fitter than the average informal carer [44]. Working health care professionals who also are informal carers may work less or even stop working because the combination is too taxing [1 , 21]. In addition, the respondents might be the healthiest and fittest respondents of the whole group who continue working. Only those respondents may have felt capable of being interviewed, although they were tired or exhausted and had health problems. This could mean that the other informal carers in healthcare are less healthy and experience even more health problems than the respondents. In other words, this respondent group is not fully representative, in the sense that they are probably fitter than the average health professional who is also an informal carer.

4.7 Diversity in positions

Respondents worked in a wide variety of positions. It makes a difference whether you work as a hostess in a department where you always have colleagues who can help you in an emergency, or if you spend your working hours alone, driving from one client to another to provide care at the clients’ homes. Respondents said that when there is no one else available during an emergency, they work longer, sometimes beyond their limits.

4.8 Task delegation

Despite the differences in control options, all the respondents felt equally responsible for doing their jobs properly and they all found it difficult to ask a colleague to take over their work. Because informal care is not a topic of conversation with managers, all the respondents tried to resolve their schedules with direct colleagues in their teams. We gained no insight about whether there are other options or solutions for solving scheduling problems across theorganizations.

Most of the respondents were not aware of laws, regulations, and arrangements and did not use them.

Employers did not seem to have customized solutions for individual employees.

5 Conclusions and recommendations

5.1 Determinants for an ‘informal care friendly’ organization

Informal care friendly policies, as part of human resource management (HRM), contribute to a culture in which employees can combine paid work with often intense informal caring responsibilities. Within an informal care friendly organization, informal caregiving is a known and negotiable theme. Employees appreciate it when managers pay attention to and are aware of their situations. It is important that leave arrangements be understood by both managers and employees, and that they can be actively used. Since leave arrangements are often very general, it is necessary that managers and employees be capable of finding customized solutions together. Therefore, it is important that HRM departments pay attention to informal care.

Experience from Sheffield University [28] shows that it is relatively inexpensive for an organization to focus attention on work and informal care. This attention can also result in productivity increases, improve the perception of quality of work, and commit people to the organization, which ensures the maintenance of organizational knowledge and experience. This results in sustainable workforces and less turnover, which reduces recruitment costs and absenteeism. It provides a good work-life balance for employees and promotes the image of the organization as an attractive employer.

5.2 Preliminary recommendations for organizations

Based on the results of this study, we offer some preliminary recommendations to healthcare organizations that want to be more supportive of their employees who are informal carers.

Recognition: Respondents found it very important that managers be aware, show interest on their own initiative, and offer recognition. This feels like appreciation and makes it easier to discuss problems when they arise.

Solutions: Employers should offer customized solutions so that informal carers can continue to work with or without some modifications. In the present situation, the number of managers in home care has been reduced because people work in self-directed teams. Within these teams, the rule is often that everyone must work every shift. This situation creates a sense of responsibility for the employees’ own decisions, but managers need to legitimize the ability to deviate from the rules. A customized solution (e.g. for informal carers) must be legitimized by the managers.

Laws, regulations, and arrangements: Managers must be familiar with the laws and educate their employees; they should discuss possible arrangements preventively and on their own initiative, before there is any failure or overload. It is important that employees be aware of the existence of these arrangements and be able to consider using one or more of them whennecessary.

Consultation: Managers must discuss informal care and their employees’ private situations during informal and formal consultations.

Vision on sustainable employability: Organizations must develop a vision for how their employees can keep a healthy work-life balance and determine which interventions they can initiate to support their employees who give informal care.

5.3 Preliminary recommendations for informal carers

Based on the statements from respondents, it is also important that employees share information about their informal care tasks and the impact on their work with colleagues and management. This provides opportunities for understanding and support. If employees have special arrangements (e.g. working special hours or specific days, needing to be home at a specific time), these must be discussed with management, especially if they work in self-directed teams. This may prevent an employee from choosing to work fewer hours or even quitting her job because her work schedule conflicts with her informal care schedule.

It is very important for informal carers to realize that they are vulnerable. They are often afraid of being forced to give the care over to someone else, like a professional. To prevent this, it is essential that informal carers take good care of themselves and pay attention to their own needs, including the need to have activities of their own.

Conflict of interest

The authors declare that they have no competing interests.

Footnotes

Acknowledgments

My thanks go to the informal carers who gave me their time for the interviews, despite the arduous task of balancing work and caregiving; their time is already scarce and precious. Special thanks also go to Mirjam Steenstra, my fellow teacher and investigator from the Research Group Occupation and Health, for assigning and discussing codes for a number of transcripts.

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Domain	General aspects	Specific aspects
1	Positive aspects: aspects of informal care that may have a positive impact on quality of life	–maintaining roles and identity
		–work participation
		–control over one’s own life
		–income
		–satisfaction with work
		–social contacts and colleagues
		–being away from ‘home’ for a while or having something else to do
2	Negative aspects: aspects of informal care that may have a negative impact on quality of life	–worries about the future, feeling responsible for care
		–combination of work and informal care increases the risk of overload
3	Perceived health by the health professional who is also a carer	–physical complaints
		–difficulty relaxing
		–fatigue/exhaustion
		–finding energy for one’s own pursuits
		–having difficulty concentrating and sleeping
		–mood symptoms
4	Arrangements	–arrangements in law and regulations that are relevant to employees
		–ability of managers to create arrangements for employees that support informal carers (e.g. only day shifts, no weekend shifts, flexible working hours)