Impact of a Parent’s Neurodegenerative Disease and Care on the Daily Life of Children

1. Introduction

According to the United Nation’s Convention on the Rights of the Child (UNCRC) [1, 2], the child’s best interests shall be of primary concern in all situations and actions relating to children. When a parent is affected by a neurodegenerative disease such as Parkinson’s disease, Multiple Sclerosis (MS) and Huntington’s disease, it may be particularly difficult to ensure the rights of the child. These diseases affect different body functions. As a result, the parent’s ability to engage in daily activities and tasks may be limited. As the disease progress, the parent’s personality may change and cognitive and communicative problems may further complicate everyday life and the parent’s ability to maintain a healthy relationship with the child. Complex combinations of different symptoms, social factors and sometimes the long duration of the disease may be demanding for the child and the family. When a parent or other adults are affected by a disease or other serious difficulties such as drug abuse or violence, the whole family is influenced [3, 4]. Parental neurodegenerative illness may have a great impact on other family members’ health and well‐being. Approximately 17% of the children, aged 12–24, of parents with Parkinson’s disease were classified as having a mild to moderate depression [5]. Having a parent with Parkinson’s disease may have less negative impact than having a parent with MS [6]. The impact of parental MS on the child, in turn, depends on many factors including the family’s social network [7]. The children of parents with MS were compared with their peers of similar age and gender whose parents had no physical illness, and the results showed that the children of parents with MS had greater emotional and behavioural problems [8]. Accordingly, children of parents with MS are at risk of developing mental health problems [9] and parental MS can have a negative impact on the child’s social relationships as well as on his/her psychological well‐being [10]. Similar results were found among children who grew up in a family where the parent was affected by Huntington’s disease. These children could experience problems and were at risk of decreased psychological well‐being [11].

Children of parents with a neurodegenerative disease may get extensively involved in domestic activities and may be expected to provide care for the parent who is ill. Children of parents with Huntington’s disease have expressed changes in their family’s everyday life. They sometimes have an adult role, could be expected to provide care for the parent [12] and could feel responsible for the family’s functioning [13]. A recent survey showed that 7% of the 2424 responding adolescents in Sweden were involved in extensive care of a person close to them [14]. Health care professionals should acknowledge the impact of a neurodegenerative disease on families and support children and parents in finding strategies to cope with the situation [6]. Daily assistance for the affected parent is one kind of support that could be helpful for the entire family. In Sweden, where this study was conducted, the Act concerning Support and Service for Persons with Certain Functional Impairments [15] regulates the possibility for a person affected by a disease to get support in daily life. A person who has a neurodegenerative disease that affects his or her ability to manage activities related to basic daily needs has the right to be supported by personal assistants at home. The extent and type of support and care given is regulated by the law in relation to the person’s needs and is assessed individually. When a family member receives assistance and care at home, the demands on the other family members may decrease. However, having other people than family members and friends at home may also intrude on the family’s and the child’s private life.

There is limited scientific documentation and a need for increased knowledge about the life situation of children in families affected by a neurodegenerative disease [16, 17]. Recognizing the situation of the people around the patient is relevant [18] and the children’s views are important for the development of policy and intervention [19]. On behalf of the National Board of Health and Welfare and in collaboration with the Swedish Family Care Competence Centre, a project aimed at surveying the health and well‐being of children and adolescents who have a parent with a neurodegenerative disease was carried out. The perceptions of younger children and adolescents as well as of parents with and without a neurodegenerative disease were examined and used to formulate a model of how public and private networks and non‐profit organizations could support the individual child and family [20].

The present study had the above‐mentioned project as its starting point but deepened the analysis and concentrated on the impact of the disease on the children’s everyday life. A child centred perspective is held throughout and the purpose of the study is to explore the views of both the children and the parents, of how a neurodegenerative disease in a parent influences the daily life of the child. The perceptions of the children and the parents are discussed with regard to the children’s rights and needs. Implications for rehabilitation, family support and care of a parent at home are also discussed.

2. Method

3. Results

The children’s and parents’ perceptions of the children’s health and well‐being were condensed into nine categories of which two—Consequences in daily lifeand Influence of disease on children—concerned the direct effects of the parent’s disease on the children’s daily life (Appendices 1 and 2). These were further explored. Ten subcategories of which three were common between the children and the parents (Economy, Responsibilityand Living with personal assistants), three were unique for the children (Being and feeling, Being differentand Activities) and one was unique for the parents (The symptoms of the disease) emerged. The ideas shared in all focus groups concerned the children; the children’s own experiences and views and the parents’ thoughts about the children’s experiences and views. We will refer to younger children and adolescents as well as parents with and without a disease. The word ‘children’ alone, from here onwards, refers to both younger children and adolescents.

4. Discussion and implications

The results are in line with existing research suggesting that a neurodegenerative disease in a parent affects the family and the children in particular [5, 10–13, 31, 32]. It is difficult to separate the needs of the children from the needs of other family members [33]. According to the parents and the children in this study, a parent’s disease has a large impact on the everyday life of the child. Children are affected emotionally and psychologically with regard to practical issues and the fulfilment of basic needs.

One of the most obvious effects of a parent’s disease on the child concerns the parent’s need for support and care at home. The child is affected by the support their parent gets from people coming to their home. At the same time, as the present results also show, the families need this and other kinds of support. From a child perspective, paid external support such as personal assistance for a parent who is ill is both relieving and complicating. There is an evident conflict between the child’s rights for well‐being and privacy at home on the one hand and the needs and rights of the parent with the disease for high quality care on the other hand. The picture is that of a scalepan with external support in one of the bowls and the child’s integrity in the other. Reaching a balance seems to be difficult. The aim of assistance is to support the person who is ill so that good health and living conditions are ensured [15]. This goal seems to be fulfilled, which could be relieving for the children who worry about both the parent who is ill and the parent without the disease. There is no evidence in the present data of children giving care by, for example, dressing or taking the parent who is ill to the toilet. Thus, it can be assumed that the support offered by the assistants is sufficient and prevents the children from becoming carers [14]. Well‐functioning assistance for the parent who is ill also means reduced demands on the healthy parent and thus is positive for the child from this perspective as well. The responsibilities of the participating children, which are considerable according to the parents and the children, concern other issues such as having to do more practical work at home than is reasonable for a child, caring for siblings, worrying and being on their own in situations where a parent could have been involved.

Home is a central arena for the child’s forming of identity and development, and therefore needs to be protected [1, 2]. A most noteworthy observation in this study concerns the lack of privacy for the children at home and the physical and mental space occupied by the disease. The children need free zones and the possibility to choose to be on their own and behave as they wish, without having to conform to social rules and etiquette. These children are under emotional pressure and show signs of unhealthiness. Having strangers around in the house and being woken up during the night, because of a parent’s need for care, not only reflects lack of privacy but is a threat to the child’s health. A calm and safe environment with well‐known people, during the day and the night, is a right of the child. The institutionalization of the home, which becomes a combination of hospital and work place, also seems to be difficult to handle for the child but is good for the parent who does not have to move away to get care. It is not only the size of the house and the fact that there is little room to be on one’s own or to play with friends that matter but also being surrounded with people who are at work, different instruments, aids and environmental adaptations. Some assistants, more than others, make the children understand that assistants are not a part of the family. This is redundant information for the child who may prefer when assistants behave as if they were members of the family, albeit with respect for the integrity of the child. Put differently, the child does not have to be reminded about the parent’s disease but rather needs supportive adults. That home turns into a work place is evident also with regard to the administration and implementation of care on behalf of the parent without the disease and other relatives. Some parents and grandparents are part time employed for the parent who is ill. Thus, there may be a mess of roles and relations for the child at home.

Developing and maintaining a relationship with a parent who has a progressive neurological disease and deteriorating psychological and communicative functions is important but difficult for the child. Maintaining a relationship with the child is also a right of the parent, but difficult because of the disease. Other adults play a beneficial role in this regard. The parent and the child may need support to plan activities to do together. Economical support could also be valuable for a family where one parent has a neurodegenerative disease. To reduce stress on both the parent and the child, the parent with the disease needs to be updated about the child’s activities. The parent will be content knowing where the child is and the child will not be disturbed by frequent phone calls from home, as was the case for one of the children in this study. Supporting communication is an issue along the same line. The children are negatively affected by the parents’ deteriorating ability to communicate and by how communication is managed by others. The parents may have difficulties speaking as well as understanding when other people speak. The children often understand their parents better than other people and feel uncomfortable by the way others talk with their parents. They also may get the role of interpreter, at home and in society. This is a heavy duty and not in line with their rights [1, 2].

Working in the home and giving care to a parent with a neurodegenerative disease is difficult [34]. Specific education about the disease and different ways to support communication is important [35, 36]. Carers and health professionals also need to be aware of the fact that the person they work with is a parent with needs and obligations towards a child. Educated people in the child’s network could support the child’s health and well‐being. For example, by informing people around the child about the disease, the kind of observations and rumours spread by other people, as reported of by the children in this study, could be avoided. It should not be the responsibility of the child to inform others about the disease and specific symptoms. There is also a need for the children to learn more about the disease, how it can fluctuate and how it will proceed. Increased knowledge about the disease and its sometimes unpredictable nature will increase the child’s understanding of the parent’s mood, activity level and behaviours and, as a result, his/her quality of life at home.

A child centred perspective will facilitate the child’s well‐being and development and implies listening to the wishes and needs of the child. These children are thoughtful and accommodative regarding their parents’ needs. They understand and accept the situation, also because there is not much else for them to do. They carry out daily household tasks, care for siblings and work to earn their own money. Unnecessary burden on them should be avoided and they should not have to weigh their own needs against their parents’. Rather, adults in charge of the care need to consider how care can be given to the parent in a way that is minimally intrusive for the child. Taking the children’s needs into account means asking them [27], given that their parent is ill, how would they like to organize their life at home? What is important for them in daily life? By asking the children about their situation and experiences, it will be possible to make life good for them at home and at the same time provide care for the parent.

Overall, the present findings point to the fact that children of families affected by a neurodegenerative disease need different kinds of support. Allowing the parent who is ill to attend a day care centre or a care home over the weekend, now and then, would give the child a temporary pause from the disease. Speech and language pathologists, social workers, psychologists and family nurses are other professionals, apart from personal assistants, who play important roles for the parent’s rehabilitation as well as for the child and the family [37, 38].

5. Reflections about the study

Listening to the feelings and views of the children and the parents is important [19], and the present study is unique in involving children of different ages as well as parents with and without a disease. Children are not always willing to talk about their situation [19]. Both the children and the parents in this study expressed satisfaction about their participation in the larger project and 10 of the 23 participants came to the 10 months follow‐up meeting. The meeting was an opportunity for the participants to get together with some of the other families and to reflect upon and give feedback on the findings and thus strengthened the credibility of the study. The participants attending the meeting agreed with and recognized the results as their own or the other focus group participants’ views. The role of the health care system in supporting the children was discussed at the meeting, as was the important function of patient organizations.

Graneheim and Lundman [30] define transferability as the knowledge about whether the results can be transferred to other groups. This study describes the experiences of families living in Sweden and several of the participating families were recruited from patient‐related non‐profit organizations. Thus, there is a risk that the results not are transferable. However, the findings are in line with existing research [8–10] suggesting that the categories can be transferred to other families in western countries affected by a neurodegenerative disease. Furthermore, the findings should be treated in light of the fact that some of the families were known by the interviewers who also were experienced in talking with families living with progressive neurological conditions. Background knowledge may strengthen an interviewer’s ability to ask relevant questions and to support the conversation in a group but may also make the interviewer to steer the conversation according to own interests and preferences.

6. Conclusions

A parent’s disease has an impact on the individual child who is affected emotionally and psychologically, with regard to practical issues, and with regard to the fulfilment of basic needs. For example, the need for care of the parent at home creates a conflict between the child’s rights for well‐being and privacy and the needs and rights of the parent with the disease for good care. The presence of a personal assistant will influence the child’s need for privacy, sometimes up to 24 hours a day. However, the assistant is also a valuable and necessary support for the family and the parent who is ill and prevents the child from becoming a young carer. The negative impacts also concern the child’s lack of knowledge about the disease and economy. Professionals involved in the care and rehabilitation need thorough education and training in general care as well as in the symptoms, characteristics and consequences of specific diseases. In such training, the children’s situation should be a focus area. Research involving more families as well as studies focusing the experiences of health care professionals and others in society supporting these families are needed in order to plan and carry out meaningful education and training programs.