Table 3 Description of the categories and associated sample quotations

Stressors – primary factors (care-related)

Limited communication with the cared-for person

Lack of or severely limited natural speech often makes communication in the care process difficult and time-consuming. Parents emphasise especially the inability to communicate needs and wishes as a heavy burden.

And then, this lack of communication that’s also a … the biggest, enormous strain because the child cannot communicate. So, it really isn’t easy. (B7, mother, 6)

Problems in cooperation with stakeholders

One aspect of care is providing the cared-for person with necessary assistive devices (depending on the disability); several stakeholders, e.g., health insurance companies, are involved in applying for and financing these devices. Collaboration and communication with these stakeholders was often portrayed in a highly negative way and as being full of barriers.

And that the health insurance is always extremely stubborn, too. So, you really have to fight for everything. For everything. So, there’s nothing you don’t have to fight for. That’s it, and that just hinders the daily routine. It’s frustrating. And it always sets the child back a little. (B7, mother, 8)

Daily care-related responsibilities

Disability-specific limitations—in the language of the ICF, primarily at the functional level—require the support of caregivers in various everyday tasks (e.g., nutrition and personal hygiene). Depending on the extent of these tasks, they are perceived as a burden.

And of course, there are other difficulties, too, because he can’t stand independently. Or walk independently. […] But personal hygiene, I think, it’s clear now, things like that, we have to take care of them completely. (AT1B#2, father, 346)

Lack of knowledge on dealing with certain symptoms

Caregivers often do not know how to effectively deal with challenging behaviour of the cared-for person, such as (auto)aggression, crying, or refusal to eat. This leads to feelings of helplessness and being overwhelmed and is a burden factor.

And there was this difficult phase, where [daughter’s name] didn’t want anything to do with me. Didn’t eat, she scratched me and she scratched, it was such a drama. And I didn’t know why, for what reason, and so on. (BT1B#1, mother, 449)

Stressors – secondary factors (psychosocial)

Financial difficulties

In many cases, the amount of care that must be provided on a daily basis causes caregivers to reduce or fully give up their employment and face financial losses.

So, the strains are enormous. Financially, but also in terms of time. So, right now, you can’t work, after all, so in my case, my child is often home. She’s not fit for school, then, because she’s at the hospital, when she’s sick, etc. In other words, you had to stop working. (B7, mother, 6)

Loss of social contacts

If the scope of care is so extensive that there is little or no time left for maintaining friendships, caregivers report a reduction in social contacts. Reported feelings include loneliness, isolation, and also not being understood by people who do not have comparable responsibilities in their lives.

So, that has… of course, friends help. Unfortunately, their number has decreased sharply, but then I thought, okay, you’re better off without them, then. (AT1B#1, father, 503)

Concerns about care / living situation in adulthood

The perspective of lifelong care provision and responsibility for the well-being of the cared-for person even in adulthood represents a burden factor for many interviewees. The transition from childhood or adolescence to adulthood seems to be accompanied by many pragmatic challenges (e.g., choice of a residential facility) as well as psychological challenges (e.g., separation anxiety, guilt) in families with children with disabilities.

Well, and then the time will come when parents are no longer alive; for children with disabilities, there are very few attachment figures. So, if nothing develops in terms of friends from the supported living apartments or at some point maybe even real friends, then they are alone at that point. And I have many sleepless nights already even now, although it’s far in the future. (AT1B#1, father, 485)

Social stigma / lack of social acknowledgement

People with disabilities and their caregivers often experience social stigma in everyday life. This stigma can manifest itself, for example, as inappropriate attention from strangers or their direct addressing of the disability. The extent of stigma can vary according to the type of disability and aspects such as visibility of the disability, occurrence of conspicuous behaviour, but is often perceived as a stress factor in the care context.

Well, I don’t put a sign around her neck saying “I’m disabled”. She looks normal. Quite pretty. People just expect more from her because she doesn’t look like she has a disability. But on the other hand, I'm kind of glad, because my cousin thinks it would be better if she looked stupid, then everyone would know. (AT1B#1, father, 483)

Family constellation (e.g., single parenthood)

Special family constellations such as being a single parent, caring for a grandchild due to the mother's intellectual disability, or living far away from the rest of the family, which is located in another country, were mentioned as additional burdening factors.

[…] [son’s name]’s father, back then, he just had difficulties with [son’s name]’ special needs, and he decided then that he can’t deal with it, which is okay for us. I believe it’s better to leave than … before you’re can’t cope with a child like that. And that’s why I’m a single parent. (B4, mother, 24)

Resources – internal resources

Strong emotional bond with the cared-for person

Many of the interviewed caregivers of people with disabilities report a particularly intense emotional connection between them and the person they care for. The special life situation is often perceived as challenging, but at the same time as especially close and familiar and therefore perceived as a resource.

And of course, it’s a strain. Well, I love life with [son’s name], and I wouldn’t trade places, and I don’t want to see him leave, although I have looked at a hundred residential homes for disabled persons. (BT1B#1, mother, 436)

Resources – environmental resources

Support from family and friends

Caregivers often receive unpaid support from family members and friends. In these cases, caregiving tasks are taken over for them for a few hours or days, creating free time windows for their own recreation or for completing important everyday tasks such as shopping or working.

[…] I’m married again now, and my husband, he takes very, very good care of [daughter’s name] as well. So, he also does a lot of things alone with her; he goes swimming with her sometimes and things like that. And he actually lightens my load quite well, after all. So, right? The husband and the grandparents. Yes. (B2, mother, 40)

Coping strategies – emotion-focused strategies

Social comparison / relativising own situation

The everyday challenges caused by caregiving are often put into perspective by interviewees by comparing them with other families (with children). Particularly with regard to aspects such as lack of time for oneself, shortage of time alone with the partner and time spent on care, it is emphasised that families with children without disabilities face similar problems / challenges.

And yes, we do as much as we can with her, too, right? We go out to eat with her, we go swimming with her; sure, we can’t do everything with her, but I think, with others, with healthy kids, you can’t do everything either, like go to the movies with your husband or something like that. Or just go out. (B1, mother, 32)

Positive attitude / acceptance of the disability

An important resource for many interviewees is an overall positive and optimistic attitude to life. Acceptance of the person's disability as a part of everyday life that cannot be changed plays an essential role. Attention is drawn to positive aspects of the daily routine rather than being focused on problems and obstacles.

What helps us, is, we are… well, we have a positive attitude toward life and try to always optimise everything and always go forward. Never look back. And that works. That’s our life. (AT1B#2, mother, 354)

Coping strategies – problem-focused strategies

Detailed organisation of the daily routine

In many cases, the everyday life of the interviewees is characterised by precise planning of daily routines. Several areas of life, such as work life and one's own leisure time, are adapted to the needs of the care recipient. These fixed (time) structures are emphasised as a resource.

[…] in the past four years, I just had shift work, where I was on night shift every two weeks, which was actually like a very late evening shift, from 6 pm to 0:30am. Which [went] very, very well … You can still get enough sleep by the next morning to get the kids ready together and then just manage the day together, and after daycare, take care of the kids together. (B9, father, 22)

Leisure activities with the cared-for person or alone

According to the interview partners, organising leisure activities alone or with the person being cared for leads, on the one hand, to relaxation and, on the other hand, to higher quality of the time spent together, so that this time is described as a resource in both cases (whether spent alone or together).

We take time for ourselves, I go exercise regularly. To yoga class, whatever. So that I … that I can always recharge because I think, you can’t get through things otherwise, if you want to always be able to give 100 percent. (AT1B#2, mother, 354)

Utilisation of external professional support services

Depending on their needs, interviewed caregivers make use of various professional support services. These services can be free / governmental or paid (e.g., paid care by private persons) and include afternoon care at school, various therapy services, exchange with other parents of children with disabilities, psychological support, etc.

Well, it’s really true, by now, you’re offered good assistance, which you can get. And I have to say, school is really well equipped with offers of assistance. (B4, mother, 30)

Intervention’s effect on burden

Interviewees reported various effects of the intervention on everyday life and, as a consequence, on the care-related burden. The improved ability of the cared-for person to communicate was highlighted as a central aspect. This improvement often leads to positive changes in the behaviour of the cared-for person as well as improved interaction and thus to a reduction in burden.

But frustration tolerance, I really have to say, has become higher in [son’s name]. It’s still there, of course, I don’t want to deny it, it’s there. And, but, it’s gotten much better […]. In part due to the collaboration with the AAC centre in [city]. (B4, mother, 78)