Mothers' experiences of their work as healthcare ...

Scandinavian Journal of Occupational Therapy

ISSN: 1103-8128 (Print) 1651-2014 (Online) Journal homepage: http://www.tandfonline.com/loi/iocc20

Mothers’ experiences of their work as healthcare assistants for their chronic disabled child Louise Ranehov & Carita Håkansson To cite this article: Louise Ranehov & Carita Håkansson (2018): Mothers’ experiences of their work as healthcare assistants for their chronic disabled child, Scandinavian Journal of Occupational Therapy, DOI: 10.1080/11038128.2018.1483427 To link to this article: https://doi.org/10.1080/11038128.2018.1483427

© 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. Published online: 08 Jul 2018.

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SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY https://doi.org/10.1080/11038128.2018.1483427

RESEARCH ARTICLE

Mothers’ experiences of their work as healthcare assistants for their chronic disabled child Louise Ranehova and Carita Håkanssonb a Division of Habilitation Services Region Skåne, Malmoe, Sweden; bDivision of Occupational and Environmental Medicine, Lund University, Sweden

ABSTRACT

ARTICLE HISTORY

Background: To the best of our knowledge, no research of the work situation of full-time, paid, parental HC assistants has been done. Aim: To examine how parents experienced their work as HC assistants for their chronic disabled child. Methods: Semi-structured interviews based on the Work Environment Impact Scale (WEIS-S) were done with nine mothers who had a child aged 8-17 years old with a cognitive or/and physical chronic disability. Content analysis was used with the Model Of Human Occupation as a framework. Results: The studied mothers always needed to be stand-by for their child, and they highlighted physical and psychological health problems caused by their work situation. There were several difficulties working in different environments because of the child’s need of technical devices. Further they described the support from their employers as important and in general the participants perceived a lack of understanding about their work situation in the society. Conclusion: The mothers in the present study had unclear job descriptions, they often worked more than full-time, and had low occupational balance. Significance: Occupational therapists could improve the HC assistants’ work place focusing on the physical and psycho-social work environment as well as on their occupational balance.

Received 28 July 2017 Revised 20 May 2018 Accepted 28 May 2018

Introduction Caregiving is a natural and fundamental part of parenthood; but if the child, however, has a chronic disability, the parents may need to help the child twenty-four hours a day with basic tasks such as feeding, hygiene, dressing, play, and communication. Parenthood will also be lifelong because the child may be dependent on the parents’ help throughout his/her life [1–3]. Traditionally, children with chronic disabilities have been taken care of by their parents. When the parents, in addition to taking care of their child, need to manage a regular job, the situation can become precarious. It is, therefore, common to find stress-related disorders in this group [4–11]. To improve the situation for parents caring for a chronically disabled child in Sweden, the Act regarding Support and Service (LSS) [12] made it possible for them to be employed as Health Care assistants (HC assistants) for their own child [13]. If the child gets granted attendance allowance, it is important to CONTACT Carita Håkansson

[email protected]

KEYWORDS

Care givers; home care agencies; home care services; occupational imbalance; work environment

explore the situation for parents who are employed as HC assistants for their own child. In general mothers are the unpaid parental caregivers and provide the care of their chronically disabled children. These mothers often feel powerless and have feelings of guilt because they cannot do enough to meet the needs of the children [7,10,14]. It can be difficult for them to train their children and engage in the children’s other activities and keep in touch with healthcare professionals at the same time as they must handle paid work. To be able to handle the day to day situation, these mothers valued formal support from professionals. Formal support could for instance be scheduled hours of respite service, or family-centred services such as support groups for parents, networking opportunities, or professional guidance to develop problem-solving and coping skills in caregiving situations. For many parents caring for a child with a chronic disability, this formal support, especially respite service and family-centred services,

Division of Occupational and Environmental Medicine, Lund University, Sweden

ß 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/bync-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.

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L. RANEHOV AND C. HÅKANSSON

seemed to be important for the parents’ health and well-being [11,14,15]. In addition these mothers had to face the attitudes and norms of other family members and friends, and in the society at large, i.e. norms around parental responsibilities and attitudes to disabled people. For example, those who had a child with Autism Spectrum Disorder (ASD) felt that friends did not want to visit them because of the child’s extroverted and impulsive behavior [11]. The mothers also felt anger and anxiety over the lack of understanding of their vast caregiving situation from others in society, like friends, employers, healthcare professionals, or decision makers of respite service [7,8]. On the positive side, these mothers were trying to get their children accepted by others, and ensure that they were treated with respect and dignity by society. Their main responsibility was to ensure that their child could engage in different activities in society despite their lack of sufficient physical or/and cognitive skills. For instance if the child had physical problems it meant that physical barriers as uneven terrain, stairs and slopes could prevent the child to engage in some activities. Then they had to make sure the child got the adequate technical devices and help to be able to move around in the society. It was also hard for the mothers to deal with how other people perceived the child, especially when the child had a challenging behavior or non ability to talk without technical devices for communication, which strongly affected the relation and communication to others [10]. In addition to advocating the needs of their children, the mothers received a sense of pride when they helped their children to live a life as good as possible, despite their chronic disabilities [15,16]. In the Act regarding Support and Service, one of the key points about granted attendance allowance is that individuals with extensive and lasting chronical disability should have good living conditions and have the opportunity to live their lives like others. Further, that the whole family should have the opportunity to live an active life, despite the fact that one of the family members has special needs [12]. It meant that individuals with extensive and lasting chronical disability have the right to get the support and service they need in their daily lives, and that they get granted attendance allowance. Individuals in Sweden who have been granted assistance allowance can decide whether to become employer or transfer the responsibility to the municipality or a private assistance organizer [17]. In Sweden there are almost 60,000 HC assistants and about 25%

are employed directly under the individuals who need HC assistance, and about 39% are employed by a private assistance organizer [4]. The HC assistant could be a relative or an external HC assistant, employed by the same employer. Depending on how many hours of assistance allowance the individual has been granted, the individual could have more than one HC assistant at the same time [18,19]. No formal competence is required to work as an HC assistant in Sweden. HC assistants’ workplaces are wherever the individuals in need of assistance are. Mainly in their homes, but also outside the home such as in public spaces depending on which activities the individual is engaged in [4,17,18]. In general, HC assistants’ work is demanding physically, mentally and socially, for example moving the individual at home and outdoors without or with very little adequate technical devices, irregular working hours, lack of coworkers and lack of a manager at the workplace [17–19]. Typical work tasks for a HC assistant are: feeding, dressing, taking care of personal hygiene, and to move the person from one position to another. It can also include performing advanced health- and medical care. Many HC assistants also have to deal with unclear job descriptions: What are the tasks? How should they be performed? From whom can they get support if the workload gets unmanageable? [14]. Furthermore communication problems with assistance recipients and their families are common. In particular, being left alone without regular contact with coworkers was described as a large problem [19]. According to the Social Insurance Agency there are 3261 children under 20 years of age who have been granted attendance allowance in Sweden [20]. How many hours assistance that are given by relatives is unknown as well as the number of persons who give care to their relatives on an unpaid basis. Previous research [1–3,5–11,15–16] has brought the situation of unpaid parental caregivers to light. To the best of our knowledge, no research on the work situation of full-time, paid, parental HC assistants has been done.

Aim This study aims to describe how mothers experience their situation as employed healthcare assistants for their chronically disabled children.

Material and methods A qualitative approach was chosen. Data were collected through interviews, the analysis was performed

SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY

using direct content analysis [21], and categorization was done with predetermined categories from the Model Of Human Occupation (MOHO) [22]. Participants Nine assistants participated in the present study. Four assistants from two different private companies, two recruited through the habilitation service, and three, who had seen the advertisement, contacted the first author. The participants were given both verbal and written information, they were informed about the purpose of the study, that participation was voluntary, and that they could withdraw whenever they wanted without any consequences for their child. They gave their written informed consent to take part in the present study. All nine participants were mothers. All were married or cohabiting and between 41 and 50 years old (mean age 44.4). They all lived in houses with a garden, were employed at a private assistance company, and worked at least 40 hours a week. They had each worked between 1 and 10 years (mean 4.7 years). Their children were between 8 and 17 years old (mean age 11). Five of the children had a cognitive disability, and four had both a physical and a cognitive disability. All of the children had extensive care needs, such as requiring total help with hygiene, feeding, dressing and communication. Procedure and data collection The first author (LR) informed managers at eight private assistance companies, which have employed parental HC assistants, and managers at the habilitation services in southern Sweden about the study. To recruit participants, an advertisement with information about the study was also placed on a relevant organisation’s website. A convenient sampling method was used; the inclusion criteria for participants were that they live in Scania Region, work at least 30 hours a week, have worked at least one year as a HC assistant, and understand and speak Swedish. They have a child aged 0–20 years with a physical or cognitive disability, or both. The parents who were interested in taking part in the study contacted the first author. Data were collected with interviews, mainly at participants’ homes, but one took place outside in a public space. It was up to the participants to decide where they wanted the interview to be conducted. The interviews lasted from one to three hours. New interviews were made as long as they provided new information, and when they did not anymore, the

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assessment was made that saturation was achieved [23]. The interviews were recorded and transcribed verbatim. The work environment impact scale (WEIS-S) The questions in the Work Environment Impact Scale-Swedish version (WEIS-S) [24] were used as interview questions. The theoretical framework of WEIS is MOHO [22]. WEIS identifies how people perceive their working environment based on social and physical factors and how it affects the person’s sense of satisfaction and well-being in carrying out work. The WEIS contains 17 items. The construct validity, and internal validity, in WEIS-S have been tested, and the result shows good psychometric properties of the Swedish version of a heterogeneous group [25]. The items are normally rated on a four-point rating scale after completing the interview, but in the present study a directed content analysis [21] with pre-determined categories was done instead. Data analysis The theoretical framework in the present study was MOHO [22], which claims that the interaction between the person and the environment influences occupational performance. The interaction between the person and the environment is dependent upon the social, physical, cultural, economical and political characteristics of the environment and on each person’s values, interests, personal causation, habits, roles and performance capacities. These concepts in MOHO were used as predetermined categories in the present study (for definitions see below). The transcripts were read repeatedly until the authors received an overall understanding of the content. The next step was to code the meaning units. Meaning units with the same code were grouped together and condensed. These units formed categories and subcategories, in accordance with the concepts in MOHO [22]. Quotations were provided. The participants are described in the findings as p1–p9, and their children have been given pseudonyms. The concepts of MOHO [22] used as predetermined categories Volition: the person’s motivation and interest to do things. Interests: what the person find interesting and stimulating to do.

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Values: sense of what the person finds meaningful, right and important to do Personal causation: the person’s view about his/her own capacity and effectiveness. People usually choose to do things that they feel capable of, and avoid doing things that could fail. Habituation: the person’s habits are carried out from a time-related aspect within a physical and social aspect. Habits: Daily routines that constitute activity patterns. Procedures are governed of the extraneous social context that the person lives in, for example as student, parent or employee. Roles: identification with a certain social position or identity. A person can have several roles. Performance capacity: an individual’s ability to do things from two perspectives (subjective and objective). Subjective performance capacity is physical (neurological and musculoskeletal), mental and cognitive abilities (remembering and planning). Those abilities are needed to be able to participate in the world but also the person’s subjective experience of performing something. Objective performance capacity: A professional examines and tries to understand loss and disruption of objective bodily systems like physical, mental or cognitive abilities. Environment: The physical environment like places but also the objects that are used where an activity takes place. Physical context: the spaces in which a person act and the objects one is interacting with. The spaces can be both natural and built spaces; at work, at home or in public areas. Social context: groups where relationships take place in a family, with friends or with co-workers. Cultural context: consists of norms, values, perceptions and beliefs that are shared in a group for instance at work, in a family or a society. Habits and behaviors shared in a family that are inherited from one generation to another. Financial and political context: The financial resources given to disabled individuals due to the present political welfare system. The definition also includes one’s freedom to make choices in life and having the opportunity to work.

Trustworthiness Trustworthiness was guided by Henderson and Rheault [26] qualitative evidence based decision rules. Credibility i.e. the authors discussed the analysis until consensus about the interpretation was achieved, dependability i.e. detailed descriptions of the research methods and a code-recode procedure, confirmability through external audit, and transferability i.e. the participants’ background is well described, were used. Based on these the present study was determined to be level I evidence, and a grade A recommendation for the qualitative evidence based on the decision rules by Henderson and Rheault [26]. Researcher stance The first author parents who are disability because tion service, and group.

(LR) has a pre-understanding of caring for a child with a chronic she was employed at the habilitahad worked some years with this

Results The findings are what emerged in the analysis under each category in MOHO: ‘Volition’, ‘Habituation’, ‘Performance Capacity’ and ‘Environment’ [22]. These categories describe how mothers experienced their situation as employed health care assistants for their chronic disabled children. The categories are illustrated with quotations. Volition The mothers in the present study had negative experiences of working a regular job. Due to their children’s needs, they often had to leave work during the work day. Finally the employers got tired of the situation, and the mothers felt uncomfortable and resigned or were fired. That was one of the reasons why the mothers were motivated to apply to become a HC assistant for their own child. They had been in contact with private assistance companies to discuss their role, which meant to take care of a child with extensive needs. It was obvious that their children needed someone all day, which other children of the same age did not. Other children also become more independent as the years go by, which means that the parents could devote themselves to their own activities, and not only taking care of their children as these parents must. When the mothers applied for attendance allowance, they hoped they could become


HC assistants and take care of their children, and at the same time also getting financial compensation. One mother’s experience of working as an HC assistant: ‘It feels important to take care of my child and also getting an economic relief. I got fired from the last job because I was home a lot to take care of Isak … and when I applied for new jobs and told them about my child with special needs the employer thought it was a private problem and did not want to hire me’ (p 9).

On the other hand the mothers felt comfortable taking care of their child and thought it was hard if they had to leave the total responsibility to an external HC assistant. Especially when the child needed advanced care, for example administration of medication, or was dependent on percutaneous endoscopic gastro stomy (PEG) for feeding, the mothers felt that they were the most capable persons to do those things. They did not always think that external HC assistants were capable of giving advanced care. This was a strong motivating factor for them to become a HC assistant. Another motivating factor was that the mothers thought it was hard to have an unknown person (external HC assistant) in their home, taking care of their child, because they found it stressful on family life. One mother’s motivation: ‘HC assistance is very important if you have a child with special needs, but it is never easy being surrounded by external HC assistants in your own home. You can never be by yourself, because there is always someone else there. That is why I work as a HC assistant myself, because we need privacy sometimes’ (p 1).

Values The mothers appreciated and valued the opportunity to take care of their child, but they also saw the disadvantages of being a HC assistant. Many of them wished that they could have another job where they could establish a career. All of the mothers felt that they had no choice but to take care of the child. They thought it was important, and a parental responsibility. They wanted to do their best for the child by being supportive, and advocates for their child’s rights. Their work was important to them. The children had so many difficulties, and their lives would not have been bearable without their mothers’ help. Despite this, the mothers expressed a desire not to have this work, and that their child had no chronic disability.

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One mother said: ‘I quit my job to be with my child. I wanted to give Hugo a normal life, and I think it feels safe for him that I take care of him’ (p 8).

Several of them had met negative attitudes about being a HC assistant for their own child. They experienced that people in general thought it was a luxury to be at home. The mothers thought that others did not really understand how much work it was being a HC assistant. It made them sad that others did not value their job as much as they did. They thought that the profession had low status among people in general. Some of the mothers thought that the external HC assistants had disparaging attitudes, and were not taking their job seriously. For instance, they did not care about reporting sick leave to the private assistance company, which would turn the entire planning for the family upside down when they didn’t show up. The mothers did not believe that external HC assistants thought their job was important and valuable. Finding a good external HC assistant was not easy for some of the mothers. One mother pointed: ‘It is not easy to find serious HC assistants, the status of the job is really low.’ (p 8)

Personal causation. The mothers had a strong belief that they could take care of their child. They often thought that they were the only one who had the ability to take the overall responsibility for their child’s medical needs, even when they had external HC assistants. Sometimes, the external HC assistant did not know how to give medication or prepare special diets, and the mothers needed to step in when the situation required it. The mothers saw themselves as capable HC assistants, being able to give their child a good life. One mother’s thoughts about her own capacity: ‘I have attended many courses … so I really am a HC assistant. Today I see myself as an HC assistant, I have quit my other job to work only on this’ (p 2).

Habituation Habits The mothers’ daily routine was mainly structured by the child’s basic needs, such as food, hygiene, and sleep. The time when the child was at school or doing activities outside the home with external HC assistants, became the mothers’ personal time. When they

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had some hours for themselves, they devoted it to household activities such as cooking, cleaning and washing, which they also thought they had the main responsibility for. Furthermore, they ordered diapers and medicine, or arranged meetings with professionals from school and Habilitation services which they could not do when the child was at home. The mothers stated that it was impossible to do these HC assistant duties while they took care of the child, because they needed to be prepared to help the child at any moment. One mother’s perception about how her daily habits are affected by her work as an HC assistant ‘As an HC assistant you don’t have breaks and vacation, for example: you eat when the child eats, you can’t clock out whenever you want to’ (p 5).

The mothers described that they started to work from the moment the child woke up in the morning. Then they helped the child with all the basics needs such as: hygiene, getting dressed, preparing food and medication. Then they drove the child to school or made sure he/she got off by taxi. When the child came back from school they had to pay full attention to the child’s needs again. In those families where there was more than one child it could be difficult to meet the needs of the sibling/siblings. The mothers not only expected to supply the basic needs of the child with chronic disability but also to give the necessary stimulation for the child to develop physical, mental and social skills. It meant that the mothers had to take the child to different activities after school. The mothers spent their time with their child until bedtime, it could take several hours to get the child to go to sleep, and all of them needed to get up during the night to take care of the child. Many of them said that they had not slept a whole night since their child was born. Usually when the child grows older, the child sleeps at night and does not need any help at that time. For these mothers interrupted sleep never ceases. The mothers also felt it was hard to have the energy to take care of the rest of the family and friends because of their hectic schedule. They also had very little time left to take care of themselves and their own health and well-being. Another mother says: ‘There are huge problems in the night, he really need two HC assistants, but no one understand that, we work several hours for free because we have no choice’ (p 1).

Some of the mothers, after some years as HC assistants, realized that the days were so full of activities involving their child that they had to take care of

themselves during their time without the child. They needed to exercise, walk and just relax. Stress-related problems were common among the mothers, one of them said: ‘After many years I have started to prioritize myself. Before I felt responsible to clean the house and do stuff like that, now I have to breathe … .and do my own exercise’ (p 3).

The mothers stated that it was unique having a child with special needs that constantly needed attention. It meant that they were very limited in their ability to do other things. For example the mothers experienced that weekends and holidays meant more work, when the child was at home the whole day instead of being in school for some hours. One solution that some of them chose was to leave the child for a day, or a weekend, at a nursing home, which gave the mothers a little respite to take care of themselves and the whole family. One mother who had thought about her habits said: ‘Other parents who have children at this age come home from work at four o’clock in the afternoon and they have six hours when they can go exercising, helping their child with homework, and so on. I cannot do such things, she had to go to bed at nine o’clock, that is also six hours, and I have to be with her all that time. So when she is at school, I will make sure the clothes are washed, the house is cleaned, and everything else and I do a lot of work to get noticed on my website too. I have to have my own time just like everyone else so I can go exercising, biking, and stuff like that, but when am I supposed to do that?’ (p 6)

Roles All of the mothers found it difficult to separate their role as a parent from their role as a HC assistant. The tasks that were to be performed as a parent corresponded to the tasks to be performed as HC assistant. The mothers experienced it as if they were always a parent. It did not matter if there were any working hours left in the end of the day, their child still needed their help. It appeared that the mothers put more effort on training their child to achieve a specific skill when they were working. As a parent, they did not focus on training their child, instead they allowed themselves just to hang out and cuddle with the child. They also considered it was easier to have patience with their child at work. When the mothers were working, they were more receptive to letting their child try to do something, just because they could learn from it. They thought that both the


parental role and the HC assistant role were important for helping the child become as independent as possible. One mother’s opinion about the role of being a HC assistant: ‘Practicing communication is more fun when you’re an assistant. In the beginning, I had not accepted that I had to keep up with this, but when I became an assistant, I took it more seriously, and I realised that I had to learn sign language to be able to teach Bosse’ (p 2).

Some of the mothers experienced that it was easier to feel more like HC assistants when they were alone with their child. In this situation there was full focus on doing activities with the child. When they were together the whole family, they also had to manage the roles wife and parent to other children. In those cases where the families had external HC assistants, the mothers felt that they became informal supervisors for them. Several of the mothers found it difficult to be employee and informal supervisor at the same time. There was no one who demanded them to take that role but they felt they were forced to do so to coordinate the work with the external HC assistants. The mothers needed to shoulder several roles depending on the context in which they were. Furthermore it resulted in role conflicts to manage both informal and formal roles. Informal roles were for example being a mother and wife responsible for taking care of the household and supervisor for the external HC assistants. The formal role meant being a HC assistant and helping the child with basic needs as feeding, communication, dressing similar to what a parent do. The mothers felt that the roles flowed together because they were doing the same things regardless if they were working or not. An opinion about roles from one mother: ‘It is difficult to separate the various roles apart during the day. Because I do the same things with Gustav whether I am a parent or his HC assistant’ (p 7).

Performance capacity Subjective performance capacity/physical abilities The mothers discovered that it was important to be in good physical shape to cope with the work situation. Different postures as kneeling, standing with the back in uncomfortable positions, when helping the child get dressed or in changing diapers, occur several times a day. They needed to move fast if their child ran away, and they had to be able to lift the child when

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necessary. Some of them said that being in good shape had helped them avoid back pain. Another aspect the mothers mentioned was that they needed to be in good shape to be able to do physically demanding activities such as horse riding, skiing, and swimming, together with their child. Dealing with a child who was acting out also demanded that the mothers were in good physical shape. The mothers often worked alone, which resulted in increased physical demands, and some of the mothers had injured their backs. One mother said: ‘You need to be fast, healthy, to be able to catch up with Anton, grab him, take on/off his clothes, and help him if he gets upset. When he gets an epileptic attack, you have to hold him. Well, you have to think about … .we must not forget our own body, that’s why we try to help each other’ (p 1).

Subjective performance/mental abilities The mothers needed to tolerate stress, chaos, and be focused at all times. Being positive and appreciating the brief moments their child was doing fine was important for coping with the situation. Mothers who had children with cognitive disabilities such as ASD constantly needed to minimize stressful situations for the child. Some mothers stated that one of the most important skills for taking care of their child was knowing the child really well. They had to face the child’s behavior problems, and deal with everyday conflicts. They experienced that the skills of being calm, stable, and problem solving, made them better able to handle the work. Some of the mothers suffered from stress-related disorders because of their situation, some recovered from them, while others still suffered from the disorders. One mother who suffered from a stress-related disorder said: ‘It’s different when you are a parent you need to be strong when it comes to your own child. You need help, perhaps even more than you really want. I never thought that I would change diapers when she was 10 years old. This may come up in everyday life, and that is so hard, just because it is not as it should be. So finally, you have to find that strength somewhere’ (p 3).

Objective performance capacity None of the private assistance organizing companies required any special abilities from the mothers at the time of employment. The only way for the company to evaluate the mothers’ work capacity was goal

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setting interventions for the child. For the mothers, it could be seen as a measure of how well they managed their work. However, the mothers did not feel that the company put a lot of effort into goal setting. Overall, the mothers thought that they had very few conversations with their employer about how they were managing their job. Some, though, actually got feedback and were happy about it. Those who had external HC assistants in their home thought it was proper if the external assistants were asked about how well the mothers handle their role as informal supervisors for them. One mother’s thoughts about the private company’s lack of skill requirements for work:

All of the mothers have accommodated their physical environment to their child’s needs. As in general for every parent, the home needs to be safe for the child. They could not, for instance, have objects on the floor that the child could swallow, and furniture had to be secured so that it could not fall on top of the child. Some private companies observed the environment in the homes to make sure that it was safe for the child, and also to minimize the risk of tripping for the HC assistant. For the child, family members and external HC assistants it was important to keep physical environment in order: In one of the families who had an external HC assistant the mother said:

‘I have a feeling that the company is more interested in what I require from them. I feel I’m more like a customer than an employee’ (p 7).

‘There must be an order among the things and the external HC assistants need to keep up with it. Isak has autism and becomes worried when it’s messy around him’ (p 9).

Environment Physical context The mothers organized their own devices to make care giving tasks less demanding. Some placed a mattress on the floor, allowing the child to lie there while having diapers changed. Others placed a chair in front of the child when he/she was sitting on the toilet, to get their backs in a better posture while holding him/her. Some of the children had difficulties walking and needed wheelchairs, as well as special chairs that give them support when sitting. Some mothers were also in need of lifting devices to move the child from a chair to the wheelchair, and from the wheelchair to the toilet. The mothers sometimes found the physical environment outside their home problematic, because of the children’s need for technical aids. Many public places were not equipped with the aids, lifting devices for example, that the mothers needed. This forced them to lift their child manually to a toilet or a chair, and the child was too heavy to be lifted without assistance. The mothers often needed help from an external HC assistant, the other parent, or another family member to be able to go outside the home. One mother stated that: ‘I have realized that I do not often go out, because sooner or later you need to visit a public toilet, or you have to eat at a restaurant, I think that’s very difficult doing it by myself if the environment is not accommodating, like having a toilet with armrests, and it is also difficult to run between the table and the dishes while I take care of Cecilia and make sure that she doesn’t fall off the chair’ (p 3).

Many of the mothers needed to establish a regimen in the house for their child’s things, in order to facilitate the work of the external HC assistants. It could be keeping medicine in special boxes, or making sure that things used for hygiene were placed in the bathroom. To make sure that the mothers and HC assistants would be able to handle the job, some companies offered programs, on ergonomics to give one example, over the internet. The mothers were motivated to complete these, as they thought that they always needed to learn something. Giving programs about ergonomics was important because several of the mothers suffered from physical injuries at work, such as musculoskeletal injuries, and/or tinnitus. They thought they needed to be more aware of the physical risks. Social context Social relationships were important for the whole family especially when they had an external HC assistant in their house. To make sure that they could establish an acceptable relationship with the external HC assistants it therefore was important for the mothers to be involved in the recruitment process. It was also important to them that they could talk to the HC assistants about their views on parenting and upbringing. Some of the mothers arranged personal meetings during work time, to give the external HC assistants an opportunity to talk about their job. The mothers thought that they had a good working atmosphere in their homes. Those who did not have external assistants spent their working hours mainly by themselves, or with


family members, and did not have the opportunity to talk to a colleague. There were few companies that arranged meetings with other HC assistants. Some of the mothers thought they needed to talk to others who were in the same situation, and others felt that they had enough of those contacts and chose to socialize with people who shared the same interests or hobbies instead. The mothers, in general, felt that they received support from the assistance company when they had problems with an external HC assistant, but thought that they received too little appreciation for the work they did from their employer and/or from their partner. One mother who did not have an external HC assistant said: ‘It’s not good that you rarely have contact with the employer, even if you try to keep regular contact with the manager. It’s not like an ordinary workplace, and I miss that. I think it’s important to have regular contact, I think that’s why they don’t know what the works look like’ (p 7).

Cultural context In Sweden to work and gain ones livelihood is the norm for both women and men. Almost all of the mothers had experienced that others had perceptions about that they take care of their children as an employment. They had met people who did not think it was a real job, and faced perceptions that it was a privilege that they could be at home with their child. In some cases, the mothers chose not to tell all their friends and acquaintances about their work situation, because they knew that others had negative attitudes about their job. For one of the mothers her husband has not realized how much work it meant to be at home working as a HC assistant: ‘Finally he realized that I have a real job being at home taking care of Cecilia, for many years I had to solve all problems by myself … .they were my problems not ours’ (p 3).

The mothers who had external assistants in their home also expressed a need to talk to them about the specific culture of their family, how to act in different situations, perceptions of parenting, and management of their child. They would also discuss how the external HC assistant should use the space in the house, and how they should act in different situations so the family could feel comfortable in their own home. They did so to make the work and family situations easier. One mother, who had thought about the facets

9

of sharing how the family wanted the assistant to act in the home said: ‘I wrote down some rules … my husband and I do not feel comfortable sitting and eating while the assistants are helping David, we can’t even swallow our food then. Of course, we offer them something to eat, but we are not obliged to. They may take coffee and milk, and I have written that they can heat their food in the microwave and so on … ’ (p 4).

Economic and political context This program relies on the act on Support and Service (LSS) [12]. It says that individuals with extensive and lasting chronic disability shall have good living conditions and have the opportunity to live their lives like others. It means that they have the right to get support and service they need in their daily lives. The attendance allowance should be personal formed with HC assistants. A political decision has made it possible to be employed as an HC-assistant for one’s own child in Sweden. For purely financial reasons, the mothers in the present study thought it was necessary to be employed as HC assistants, and they could not manage to have another job on the side. One mother’s perspective of HC assistance as a job: ‘The reason why I became a HC assistant was because there is so much work to do with such a child. I felt … well, I needed help, and secondly, I think I should be paid for the job I actually do, he is not two years old anymore’ (p 5).

The Swedish Insurance Agency is responsible for deciding whether or not a child receives assistance. Several of the mothers were contending with the authorities, in an effort to receive assistance for their child. The mothers always experienced the time they were waiting for the decision on assistance allowance as tough, since it was not guaranteed that they could continue working as HC assistants. One of the children suffered from life-threatening disease, his mother was afraid to lose her job as an HC assistant: ‘The day Henrik is dead it means I don’t have a job anymore’ (p 8).

Discussion Principal findings The findings in the present study provide an understanding of the mothers’ experiences of their work as HC assistants for their chronically disabled children. For all of them, it was important to have the

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opportunity to work as a HC assistant, but on the other hand, they really had no choice but to take care of their child, because the child needed much more help compared to another child of the same age. They have all tried to have another job on the side, but it was not possible, and they accepted the situation, and valued the opportunity to be with their child. It was the mothers who had the main responsibility for the child, and the housework, and to maintain contact with authorities and professionals. They often worked more than full-time, and additionally had to do other work, for instance taking on the role of informal supervisors for the external HC assistants. Other challenges included working in different physical and non-accommodating environments in society, often alone by themselves. Being both parent and HC assistant gave the mothers an extensive workload and several of them have had physical and stress-related health problems. The mothers want to take care of their child while also trying to balance this with the rest of life. The findings in relationship to previous research This part of the discussion is divided into: A challenging work environment, The complexity of having multiple roles as a parental HC assistant, Expectations of equality, natural rights and good support, and Health and occupational balance. A challenging work environment The mothers in the present study were exposed to physical risks in their environment because they often worked alone, and they also had to handle their child without technical devices in public areas. Non-accessible environments could be barriers to engagement in activities outside the home. The present study also showed that there were some activities the mothers could not do if they were alone with the child, for example going to a restaurant, or visiting friends and neighbors without an accessible toilet. It has also been shown in previous research [11] that parents of disabled children met with a lack of accessible environments in public areas. For example children who needed wheelchairs often did not have access to various public and private spaces. In some situations, caregivers were forced to carry the child, or wheelchair, manually, to get into tourist attractions, malls, and public transportation [11]. Both of these are instances showing how disabilities could lead to isolation and

stigma, and this finding confirms the results of other studies [11,15,27]. Another aspect of the challenging work environment is working 24-hour a day. For the mothers in the present study there was no clear boundary between work and home and family chores. Their home was both a workplace and a home where they also spent their time with the whole family. The work as HC assistant and being a parent took place even in the nights. The mothers in the present study had limited sleeping time since their children were born, normally when children get older, they sleep all night by themselves, but there are special circumstances for many families having a child with a chronic disability [8,11]. This is in line with the findings of the present study which showed that some of the children need night time care, i.e. food, hourly turning to relieve pressure sores, and difficulties initiating or maintaining sleep. The mothers had the main responsibility for contact with professionals and authorities, and therefore spent a lot of time arranging meetings. This finding is in line with the finding of a previous study [8], which showed that a psychosocial workload could arise from ongoing vigilance, even during those hours the child was in school, for example, receiving phone calls from teachers about behavior problems, and this could be emotionally tiring for mothers [8]. This finding also confirms the results of an inspection [28], which showed that women had an increased psychosocial workload because they took the main responsibility of arranging meetings, and keeping contact with health care professionals. It was also common for the mothers in the present study to work alone with their child, without any regular contact with colleagues. This is in line with another study that showed that colleagues are important [29]. The mothers in the present study were also missing continuous contact with and feedback from their managers. Some of them wanted more regular contact with their manager, to get advice and support regarding their work situation. It has been shown that it is commonly thought that relatives become experts in providing care to their children, and that they do not need advice and support [8]. Some mothers thought that they needed more support in understanding what their employers were expecting from them when they were acting as informal supervisors, which is in line with another study of HC assistants [17], in which they indicated a lack of formal leadership in their workplace.


The complexity of having multiple roles as a parental HC assistant Mothers of a child with special needs must handle multiple roles. They become experts in care giving their own child, they learn about the child’s medical needs, and explore ways to increase support in everyday life. They also seem to take a great responsibility for the whole family to make the life situation bearable, for example taking the main responsibility of household duties [30]. Likewise in the present study, the mothers had to manage multiple roles. The parenting role was naturally the most prominent among those roles. Their multiple roles included that of parent, HC assistant, customer of their company, and informal supervisor (for the external HC assistants). What could be difficult is to distinguish the parenting role from the HC assistant role, because the starting point of both roles is to do their best to meet the child’s needs. However, all the roles became blurred with the parental role. Expectations of equality, natural rights, and support The mothers and their families lived in Sweden, in a culture where laws and regulations should ensure that everyone is treated equally. Despite this, they were met with a lack of understanding from people in general, who did not see being a HC assistant to the own child as regular and valuable work. Formally, it should be viewed as any other occupation and according to the Swedish Work Environment Act [31] HC assistants should have the same rights to have breaks and vacation as others. In reality, this was not possible for the mothers in the present study, because their children were strongly dependent on their care and supervision throughout the day. To make their children’s lives bearable, the mothers in the present study were dependent on the political system to get support and financial help. The government in Sweden regulates how high the attendance allowance should be. The current regulation for decision makers urges them to be aware of costs for each individual who needs attendance allowance [32]; this means that it could become even more difficult to obtain it. The consequences for the families’ financial situation could be serious. The mothers in the present study were dependent on the attendance allowance, because they could not have a regular job at the same time as they were taking care of their child. This is in line with the findings of another study that showed that an employment is a prerequisite to get a necessary income [29].

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The granted attendance allowance also made it possible for them to get help from external HC assistants, or respite services, and meant that they could partake of different activities in society with their child, or get some free time. The same thing has been highlighted in another study including parents with children with cerebral palsy [33]. In that study it also was a parental desire that their children should be able to socialize with peers, participate in community activities and to become independent living [33]. Therefore, it is important to enable these parents to help their children with this but then they need both social support and financial relief. As a result of the children’s chronic disabilities, and inability to advocate for their own rights in the present study, it was difficult for several of the mothers to see how their children could live and cope with life without their support, both as parents and HC assistants. The mothers felt there was a lack of understanding and support from society, and they were worried about their children’s future. Over a longterm perspective, the mothers realized that their children would need to free themselves. They all wanted their children to become as independent as possible, but thought that there was no obvious place in society where they could be taken care of. The mothers could not see any other solution than to be HC assistants for the rest of their lives. The mothers probably found it difficult to let someone else take full responsibility, because they were emotionally involved in their children. This is in line with the findings of other studies [10,29], which showed that parents think that their children’s wishes, dislikes and preferences were not likely to be understood by someone else. Health and occupational balance Previous studies [4–6] showed that parents who are caring for a child with a chronic disability without being paid reported higher perceived stress, and more physical health problems, than other parents. A possible explanation could be that they had full-time jobs and yet had to additionally take care of their children. The mothers in the present study did not have a side job, but many of them also had health problems. Many of them did however work more than full-time, because the granted assistance hours were not enough to cover the child’s needs. For the mothers in this study, their habits and routines were well established to mainly match their children’s needs. They spent most of their time working as a HC assistant, or doing parental tasks. Murphy et al. [3] found that, to minimize caregivers’ stress-related disorders, time

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away from daily caregiving tasks was necessary. Some of the mothers had been told to take some time off, or to take a holiday, to avoid stress-related disorders. Despite that, they did not go on any holiday without their child, which meant more work and no holiday. Nobody interviewed for the present study has spent any long time away from their child, because they could not leave the responsibility to someone else. Whether this is because there isn’t anyone with sufficient expertise to hand him/her over to, or whether it is the mothers’ inability to abandon the responsibility, needs to be studied further. Some mothers found a satisfying time allocation between paid work, unpaid work (domestic work and contact with authorities), and leisure. Others realized that they had to do something different to change things. Some took advantage of the time when the child was in school, or when the child was with an external assistant, and used the time for exercise, socialization with friends, and recreation activities (reading, listen to music, taking a walk in the park). A satisfying time allocation between different occupations in everyday life, i.e. occupational balance, has been shown to be important for good health [34,35]. The findings of the present study could be interpreted as showing that these mothers do not have occupational balance, and confirms the result of a previous study [36], which showed that the significant care needs associated with having a child with special needs increases the risk for occupational imbalance.

Limitations In this study, a convenience sampling method was used, which lead to nine mothers employed as HC assistants for their own children participated. It is not possible to find any statistics that denote how many mothers and fathers are employed as assistants for their own children. However, the fathers in this study spent the majority of their time in paid work outside the home. These findings are in line with the results of a previous study among couples who had a child with ASD [8], where fathers spent more time than mothers in paid employment, and mothers spent more time on childcare than fathers. In general, Swedish mothers spent more time (50 min) in unpaid work, including taking care of a child (minimum of seven years old), than Swedish fathers [37]. A possible explanation could be the traditional gender ideologies in Western countries, which cast men as breadwinners, while women are held responsible for unpaid work, including childcare [37,38] . This may be one

reason that only mothers chose to participate in this study. The selection process was limited due to confidentiality requirements, and there was a selection bias that could have had a possible effect on the results. It was not possible to obtain data from the Swedish Social Insurance Agency about persons who had been granted assistance allowance; had that been possible, even those who had the service provided by the municipality could have been included. It was not possible to generalize the results from the present study, but there are still important subjective experiences about working as a HC assistant for one’s own child that may be confirmed by parents in other socioeconomic groups. It was a strength of this study that the questions in the WEIS-S [22] were used to cover the participants’ work situation, and that MOHO [23] is the conceptual model behind it. It turned out that it could be useful as a preventative measure for identifying problems in the HC assistants’ work environment. The analysis was structured from categories in MOHO [22]. Using MOHO [22] as a conceptual model in the analysis helped the authors understand the relationship between the mothers’ work capacity, the occupations, and the environments where the occupations were performed. It was clear that the environment could be both an enabler of, and a barrier to, the mothers work ability and for them to manage the roles as both mothers and HC assistants. To strengthen the credibility of the study, and to ensure that the data analysis fitted with the purposes of this study, the authors conducted the analysis separately. The results of the analysis were compared, and were labeled with almost the exact same categories in MOHO [22], and thus it was not the authors who declared the findings, but the data. Practical implications and future research This study contributes to an understanding of mothers who work as HC assistants for their own chronically disabled children. They worked long hours, and often without any coworker, or employer support. It also seemed as if several of the mothers perceived an imbalance between daily occupations, because of unsatisfactory time allocations between paid work, unpaid work, and leisure activities. To make it possible for parents employed as HC assistants for their own children to combine the parental role and the employment as a HC assistant, there is a need for a sustainable work situation. Occupational therapists may have a significant role in


deriving this, based on their competence in analyzing occupational performance, occupational balance, and occupational patterns structured by work, self-care, and leisure activities. The understanding of how these form people’s lives and well-being could be useful in achieving a sustainable work situation for these parents. Furthermore, the occupational therapist can contribute in developing workplace interventions, such as educational programs, clarify the employers’ responsibility, improve the work situation through minimizing high physical workloads and working alone time, and increasing knowledge of ergonomics and, psychosocial risks as well as access to technical devices among the HC assistants. And at last, but not least, how to include the child in taking care of him/her self with the aim to develop maximum self efficacy, optimal quality of life, and participation in society but also to relieve the mothers. Future research may deepen the knowledge of how to arrange a sustainable working life, not only for parental HC assistants, but for HC assistants in general. Further studies are needed to compare parental HC assistants, and HC assistants who are not related to the children they work with, and how they allocate their time in paid/unpaid work, self-care, leisure activities, and in relationship to their experience of health and well-being. The reasons why fathers did not take the main responsibility for their children, or decide to work full-time as HC assistants, were not obvious in the present study, and further research on fathers with children having chronic disabilities is also needed.

Acknowledgements The authors would like to express their appreciation to the parents caring for children with chronic disabilities who made this study possible. Also, a special thanks to the assistance organizing companies, and to one of the organizations for children and youth with physical disabilities. Finally thanks for the help with the recruitment process to former colleagues at habilitation services in Scania Region.

Disclosure statement The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

ORCID Carita Håkansson

http://orcid.org/0000-0002-3660-3079

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Conclusion In conclusion, the mothers in this study had an extreme work situation. They often worked more than full-time, and they were always on standby, prepared to work even though they had external HC assistants. In addition, they were exposed to risks due to working alone, and the absence of technical devices in some public areas. The fact that they were both mothers and HC assistants meant that the work flowed together with the parental role. Some of the mothers had a difficult experience with this, because their children were the most valuable thing they had, and they always prioritized their child’s needs first. Occupational therapists could improve the situation for HC assistants through work place interventions focusing on both the physical and psycho-social work environment as well as on their occupational balance.

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