A total of 18 participants were interviewed (Table 1), 9 parents (2 men) and 9 employees (1 man). Of these 9 parents were interviewed, 7 participated in 3 group interviews and 2 in individual interviews. Of these 9 employees were interviewed, all participated in a group interview (5 in one group and 4 in one group). All interviews were conducted in a meeting room in a public building, except one individual, in a private workplace. One group interview with employees took place by video, due to the Covid-19 pandemic.
The results are presented under two separate headings due to their informants’ different perspectives. One heading represents results from parents and one results from employees.
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Insert Table 2 here:
Results from Parents
The findings from the parents were categorised into three themes: 1) an unsustainable burden of care; 2) a too large variety in ages and needs of those living in group house; and 3) lack of confidence with the services.
An unsustainable burden of care
The informants experienced an unsustainable burden of care during the waiting period after applying for housing for the child, especially after they passed 18. The community`s guideline stated that families with an ID child had to apply for an apartment when the child turned 16. All applications were organised in a ‘housing waiting list‘, and most parents expected that their child should move to an apartment at 18. As there was a lack of apartments that fitted the needs of their children, they described frustration and exhaustion with the family home situation. The informants told about missing information about where the child should move to or how long they had to stay on a waiting list for an apartment.
‘I don’t think they (staff in the municipality) understand - and see signs of an exhausted body - they understand it’s tough, but no one realises how tough it really is - I have parents who have helped for many years - but they are also starting to get old – I had to call them one night when I couldn’t do it anymore - there was a crisis - then they came. It hits a whole family.
I do not understand the priority of the waiting list - it is so closed - it is problematic to deal with - the process is not transparent - you do not know anything – I wish they knew what it feels when we are so tired after so many years.’
Several informants told about insufficient information about services for their child in the family home and an absence of respite care for the parents. Furthermore, several informants said they were not able to work, due to their unsustainable burden of taking care of their child in the family home.
‘Yes, it is insufficient services from the municipality, even when the children get sick - you must use vacation days or stay home without salary. I must use sickness self-declaration for my own when my daughter is sick.’
The informants said they were offered an apartment for their child after a family crisis, such as exhausted parents or unexpected illness among them.
‘We were lucky to receive an apartment in the area close to where we live, as it was unplanned that one of the apartments should be vacant when a family crisis arose.’
Even after the child has moved into their independent apartment in a group home, most informants experienced an increased burden of care, as they were dissatisfied with the level of services. They felt the need to frequently visit the child to follow up on practical and leisure activities. One informant said that he worried about the transfer of his child, but in contrast to the others, it was perceived as positive, because the child might receive other stimuli from the staff and other residents, compared to what the exhausted parents could give.
‘It is expected that adults should take care of their children to learn new skills, but when the child turns 18, much is left to them, even though the child still functions on a level as a ‘baby‘. I don’t think it’s okay - they lose their dignity the day they turn 18.’
‘We are definitely worried about relocation, but then he benefits from receiving input from others than exhausted parents after 22 years of care. There is no energy left.’
Too large variety in age and needs living in group house
Most informants experienced too much variation in the age, interests and functional level among residents living in a group house with in-house staff 24/7. It was not planned where they would live, and often they had to accept the allocated apartment, if not, they could be removed from the waiting list. They stated that the most important thing for the child was to acquire relationships with residents who shared common interests. Furthermore, informants highlighted residents with equal age levels, as one informant experienced that her child at 18 was assigned an apartment among elderly residents. In contrast, an informant expressed satisfaction with the cooperation with the staff in the municipality, as they were connected to well-known children at an equal age level. All had been assigned apartments in a common new building for 10 adults (>18) some months before the building was erected.
‘I don’t think the municipality is so conscious at allocating apartments based on gender and age. Although large age differences do not mean that they fit together, having common interests are crucial when living together with residents with PID.’
‘There was a vacancy apartment in new group house - we knew the others who should move in, as my child had grown up with several of them. We could follow the transition process all time and the apartment was adapted to my child’s needs. The group home is superb!’
Lack of confidence with the services
Most informants expressed a lack of confidence with the municipality, due to the lack of individual plans for the time of moving out of the parents’ home and the opportunities to choose an area in the municipality to move.
‘We have been offered apartments in a completely different area, including apartments without in-house staff. I do not understand why we get such offers, when she is completely dependent on in-house staff.’
Despite municipality guidelines regarding applying for an apartment when the child was 16, almost all informants acquired an apartment, due to a family crisis. They said that the municipality should rather connect families together, so they could plan housing by themselves.
‘We want the municipality, through the Health and Welfare service, to take responsibility to connect [us] with other parents that have children with similar challenges. Then we can join and make an agreement with a property developer to plan a suitable group house with in-house staff. The in-house staff must help to create relationships between the residents.’
The informants stated that they were concerned about the abrupt reduced service level for their children when the child is 18 years old. When the child lived in a child group house with in-house staff 24/7 until they were 18, they expressed satisfying with the services; it was always one provider to one child. After moving to group housing for adults (18+), they told about lack of confidence with the municipality, as the services were reduced by half. They said it was impossible to understand this kind of difference in service level. The functioning level did not improve over the night after entering the age of 18, and the child still was a functional ‘baby’.
‘He is not 18 years old - he is a baby. He uses pacifier at night because he is not supposed to eat his own clothes. He has toys in his room and likes to be in the sandpit - shouldn’t he be allowed to do so because he’s 18? And that’s not expected? Who needs to decide who he is?’
They said that employees did not call them to give information about the child’s well-being, nor when they visited their child in the apartment, the employees did not share information.
‘No, no one from the group house has called me and asked a single question about my son. It is me who must be there and go through his wishes and needs with the staff.’
Results from Employees
The findings from the informants were categorised into three themes: 1) lacks housing but offers varied respite care, 2) family crisis elicits acute transition, and 3) open and explicit information.
Lacks housing but offers various respite care
The employees told that there were challenges to meet the parents` wishes and choices for their PID child’s independent housing, as there were too few group homes. Furthermore, the informants experienced that most parents want to rent apartments and that there must be fellowship with other residents, due to parents being anxious for their children that are placed in an apartment in solitude.
‘Many parents are afraid that fellowship and social support will disappear if they choose to buy an independent apartment.’
The employees said they have a good connection and cooperation with the parents during the waiting transition period to independent housing. They stated they offered various respite care to the parents, due to reduce their burden of care.
‘We try to provide the best possible offer while they wait - what often happens is that they get extended 24/7 residential respite care in weekends, services in the family home, due the great burden of care for the parents.’
Family crisis elicit acute transition
The employees described the waiting period as very exhausting to many parents, after being recommended to apply for an independent apartment when their child was 16, and then being kept uninformed until they suddenly had an apartment offered.
The employees pointed on common challenges in the meetings with families with a PID child; expectations of time to move independently, on whom to live with, where to move and what level of services will be offered, fears and thinking of what is best for their child. The informants said they try to provide the best possible offer while they wait. What often happens is that parents get extended respite care, due their unsustainable burden of care.
‘I think many people get tired of standing in that queue and become willing to accept any alternative after a while. They lower their expectations while waiting. It also happens that one of the parents becomes ill and that the care situation becomes exacerbated. The crises often create emergency placement in respite care 24/7 services in group house. Some people stay there temporarily for a long time, which is not good either.’
Open and explicit information
The informants said they had a good experience of participating in a patient care team (PCT) when the PID child turned 16, as the PCT shared information and is responsible for organising the services that best fit the family. The informants said they were aware that the child’s need for help had been mapped throughout his life and that they were based on this survey when they consider the children’s need for housing and services at the age of 18. Despite, informants telling of young people who had developed skills, mastery and degrees of independence after completing upper secondary education, and later completed a residency at Folk High School (no grades, no rigid curriculum and no exams).
‘Some of these young people go to Folk High School and have a year away from home. Along the way, we find that the level and need for care is quite different and that they need to manage oneself governs a part.’
The informants expressed a need for explicit and directly information both through common and individual meetings with parents and children about the children’s development, which opportunities the municipality has to offer of housing solutions, services and school education.
‘Expectations must be clarified much more. We have been in close dialogue with parents and the youths themselves. What do you see for yourself and what do you think about moving? At the same time, we know that the period from 16 to 20, there is some leap in development regardless of disability or not. A 16-year-old does not intend to sleep for himself, but a 20-year-old may not think of anything else.’
The informants say that parents are encouraged to apply to the municipality for housing when the child is 16, so that the municipality can prepare a transition from family home when the PID child turns 18. The informants said that despite several years standing on the ‘housing waiting list’, it is always families with high risk of crisis that is prioritized when assigned housing.
‘I can understand that the parents consider the process as unclear. Where is the information? We might send out information every six months on how it is on the waiting list.’
The informants experienced that some parents want to build private shared housing and ask the informants to connect with other parents with PID children. The informants say that they do not organise such contacts, due to confidentiality.
‘We are not very good at just that due to handling confidentiality. We sometimes get questions from parents who want to buy or build apartments, so they wonder if we know someone who may be relevant. Unfortunately, we have never got on with it properly.’
Figure 1 shows a thematic map of six themes (oval) and 12 subthemes (rectangular). Each subtheme is accompanied by an example quotation from the informants. The map illustrates the contrary main themes and subthemes emerging from by parents and employees. These contrary perspectives by parents and employees should be further discussed in a planning transition process.
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