Background: The aim of this study was to gain an understanding of how health-care services can support the empowerment of children when a parent is diagnosed as having multiple sclerosis (MS). The study focuses on what information parents with MS, their partners, and their children desire from health-care professionals.
Methods: Focus group interviews were conducted with nine adolescents, nine parents with diagnosed MS, and five partners representing members of ten families.
Results: The main finding was that parents with MS, their partners, and the adolescents stressed their need to be well informed about the disease. Information should be provided at the time of diagnosis and then offered regularly throughout the disease course. The information should be suited to the recipient's level of maturity and individualized to reflect the parent's clinical picture.
Conclusions: It is usually beneficial for children if their parents feel informed about the illness and encourage their children to ask questions and discuss the situation. This knowledge, gained from several sources, is likely to be of value for health-care professionals and their ongoing efforts to improve services for parents with MS, their partners, and their children.
It has been recognized that chronic neurologic disease in one person affects the whole family and has a substantial impact on the lives of children.1 Information from health-care professionals given when a patient is diagnosed as having multiple sclerosis (MS) is provided mainly to the ill person, who in turn informs the rest of the family. To our knowledge, the children in the family are seldom primary recipients of information provided by health-care professionals. However, it has been reported that children without thorough information about their parents' MS have lower emotional well-being than those who are better informed.2
Swedish health-care legislation was amended in 20103 to elucidate health-care providers' responsibility regarding the needs for information, counseling, and support of children 18 years of age and younger when a parent has a mental illness or disability, has a serious disease or injury, or abuses alcohol or has some other addiction. Health-care staff need to acquire information on how they can fulfill the intention of the law and the principles of the Convention on the Rights of the Child.4 The Convention places on governments the responsibility to help families fulfill their roles as parents and guardians of children and stresses that governments should strive to ensure the healthy development of children.
To comply with the law and its underlying principles, those involved in caring for people with MS must acknowledge the need to empower both parents and their children. The provision of accurate information may result in better-adjusted family members who are given options that enable them to manage the situation more confidently. Empowerment has been described as a process that includes both separate and interconnected patterns of behavior of the individuals involved5—for example, mutual participation of health-care staff and patient, active listening, and knowledge acquisition.6 Health-care professionals, by facilitating empowerment either through a parent or directly, must help a child to cope with the consequences when a parent is diagnosed as having a chronic condition.
MS is characterized by great variation in the debut of symptoms, the nature of symptoms, and the prognosis. The onset of MS is usually in the years when the patient is most likely to be a parent of dependent children.7 The inability to predict the course of the disease causes great uncertainty for the patient and the other family members.8 Some of the symptoms of MS can be difficult for children to understand and cope with, such as fatigue, cognitive impairment, and depressed mood.9,10 For example, it can be difficult to understand the patient's tiredness or forgetfulness and the consequences that these symptoms have in everyday life. Furthermore, children's difficulty in coping is greater with more severe MS.9
Positive and negative consequences have been reported for a child or adolescent whose parent has a chronic disease. On the positive side, early maturity, development of empathic ability, and experience of greater independence and self-reliance have been described.9 On the other hand, a parent's MS also exerts a negative psychosocial influence on children, especially adolescents.10 Compared with children with “healthy” parents, those who have a parent with MS have greater responsibilities in the family.8,9 These responsibilities are mainly practical but also include providing emotional support to the parent. Their opportunities to spend time with friends may be limited if they feel that they need to “keep an eye on” their sick parent.9 Limited opportunities to take part in leisure and school activities along with internal and external demands have also been reported for children with a parent who has a chronic condition.11 Children's ability to decide whether and to what extent to assist their parent with MS is limited, and less freedom of choice is connected with lower confidence in their ability to solve problems and with lower satisfaction with life.8 Adolescents have described difficulties when a parent has not accepted his or her impairment because he or she has not expressly stated whether the children are allowed to offer assistance.9
Parents can choose to keep information about their disease from their children to protect them. That decision may prevent the children from raising questions related to the disease. Kalb12 reported that some children fear making their parent feel worse and, consequently, choose not to talk with their parent about their own problems, thus creating a barrier between them. The ability of a child to cope with their parent's having MS depends partially on how much they know about the disease.10,11 By acknowledging the child as next of kin, and providing him or her with information and support, the health-care provider can strengthen the child's ability to cope with his or her life situation.
Having a social network also makes it easier for a child to cope with having a sick parent.8 The child's social network, as well as health-care and school staff, need to be aware of the special needs present when a parent has MS.13 The importance of the social network is even greater if the sick parent is a single parent, when a child can be left with far too many responsibilities without support from professionals.14 Differences in how children cope depending on whether it is the mother or the father who has MS have not been detected.15 Instead, a relationship between how children and the healthy partner manage to cope has been established.9 Practical and emotional support from the healthy parent is important because the absence of such support has a negative effect on the child.9
Whereas health-care systems provide resources and tools that are limited in time, parents have a continuous, everyday relationship with the child. Because the parents are the primary resource for the child, the most important task for health-care professionals is to provide support for them in their parenting. A first step is to increase their knowledge of the common needs of children in this situation, as not all parents realize that their MS affects their children.16 This attitude can constitute an obstacle to the direct provision of resources by the health-care service to the child because such assistance requires parental consent.
A workshop intervention covering educational, social, and psychological aspects of living with MS (for children aged 9–14 years) was set up by Mutch.16 The intervention was inspired by clinical experiences in which parents did not believe that their MS affected their children but at the same time were worried by their daughters' behavior. One of the findings was that once MS was no longer a secret in the family, understanding between parent and child improved and the pressure of trying not to let the MS show was alleviated.
Children's age and stage of development influence how they cope and adjust, and there are indications that coping is most problematic for adolescents.9 A “working alliance” between health-care staff and the parent or parents is needed to decide what information a child should receive and how it should be presented. It is likely that parental worry about the child can be reduced by being aware that informed children cope better. A necessary condition for health-care staff to acknowledge children as next of kin is that the staff members are comfortable with taking on the responsibility to provide them with support. Children need tools, routines, and shared responsibility and cooperation among health-care services, social services, and schools.
Available research has concluded that children need information, but less has been published on how and when this information should be provided. The perspectives of parents and adolescents in families in which one parent has been diagnosed as having MS may reveal clinically useful knowledge that can facilitate everyday life for the families. The aim of this study was to identify what kind of information family members feel they need when a parent is diagnosed as having MS.
Nine focus group interviews were conducted with parents either with MS or living with a partner who had MS and adolescents. The inclusion criterion was the ability to take part in a conversation in Swedish. The interview was semistructured. A qualitative content analysis with an inductive approach was used in analysis of the interviews.17 Initially, a manifest approach was used with the intention of interpreting the meaning unit at a later stage (latent approach). The study received ethical approval from the Regional Ethics Committee in the Örebro-Uppsala region of Sweden and complied with the Declaration of Helsinki.
Residents in Örebro County with MS are cared for at the Örebro University Hospital in Örebro. A multiprofessional team specializing in MS provides examinations, interventions, and information. The people with MS are the main recipients of information, but some information is also offered to adult next of kin and to other health-care providers. In accordance with legislation, the team has noted the children's needs, but so far there is no explicit way of identifying these children, nor are there established methods for supporting them. Both authors have more than 2 decades of experience with neurologic patients, KB as a social counselor and YN as a physical therapist. The interviews were audio-recorded and transcribed verbatim.
Parents with diagnosed MS were identified by a nurse or social counselor working on the MS team in the Department of Neurology at Örebro University Hospital. All invitations to participate in the study were offered to the parent with MS, who then decided whether to invite family members. Interview participation by the parent with MS was, however, not required for the participation of other family members. Written information and consent forms (one for parents and one for children) were provided in advance to allow time to consider participation.
The focus group meetings were held at a time convenient for the participants at the Örebro University Hospital between May 2012 and January 2013. Parents with MS, partners of parents with MS, and adolescents were grouped separately. In one case, the interview was held with a single person, which was most convenient for the participant concerned. In another case, two siblings wanted their mother (not diagnosed as having MS) to be present during the interview. The interviews were led by one of the authors (KB) accompanied by the second author (YN).
The analyses were performed in several steps: 1) The transcribed interviews were read in their entirety to obtain an overall picture. 2) Meaning units (paragraphs containing aspects related to each other through their content and context) were selected by each author separately for the first three interviews and then were discussed to reach consensus. 3) The same procedure was followed for the remaining interviews until all the data were coded. 4) Categories were created and defined inductively. 5) Category definitions and rules were continuously scrutinized by moving back and forth between the transcribed interview and the output. 6) The perspectives of the adolescents, partners, and parents with MS were separated. 7) A theme was created from the categories. 8) Quotations were chosen to exemplify the categories and themes.
Nine focus group meetings were held, and they consisted of parents with MS, partners of parents with MS, or adolescent children of parents with MS separately (Figure 1). Nine individuals with MS, five partners, and nine adolescents participated, sharing experiences from ten families. Only two of the respondents were fathers with MS.
Two of the individuals with MS were diagnosed between 1991 and 1995 and were informed of their diagnosis by a neurologist over the telephone. The others were diagnosed between 2003 and 2010 and were informed by a neurologist in person. The adolescents' ages at the time of diagnosis ranged from 7 months to 20 years; most commonly, the children were younger than 7 years. At the time of the interview, the adolescents were aged 12 to 23 years.
A theme, “Information Is Essential When MS Enters the Family,” was created based on three main categories: being well informed, the uninformed child, and health-care responsibility.
Being Well Informed
The main finding was that parents with MS, their partners, and the adolescent children stressed their need to be well informed about the disease. Information should be given to the affected person and his or her partner at the time of diagnosis and to the children shortly thereafter. It is essential that the information be adjusted to the recipient, individualized to the sick parent's clinical picture, and offered regularly in a manner appropriate to the progress of the disease and the maturity of the children. At the time of diagnosis, the participants found it difficult to be the one who informed the children or others, especially because it sometimes seemed as if they were not well informed themselves. According to one adolescent, “It was difficult for us when we found out that mum had MS. She just said, I may have MS. Then a thousand questions came up, and she just answered I don't know, I don't know, I don't know. Because she didn't know either. It was all new to her. I would have preferred someone in the staff to explain what MS means.” In the words of another participant, “It is a rather big roller coaster that starts when you get this kind of diagnosis. It takes a while before you pull yourself together to the extent that you feel that you can talk to your children about it.”
The Uninformed Child
Lack of information from parents was believed to reduce the children's opportunities to raise questions. Parents' choice not to inform can be based on a wish to protect the child. It was found that parents had informed siblings differently. Children's fear that MS may be a fatal disease must be acknowledged. It was pointed out that being able to ask questions at home about the disease, emotions, thoughts, and fears about the future was important. But it was also established that the children would appreciate an opportunity to address some questions to health-care staff without involving their parents. In the words of one adolescent, “I never knew what MS was until I was 15 years old and wrote an article about it in school. So, I never got any information. You got more. I was so to say shielded since I am younger: they wanted to protect me more.” Another commented, “I was 12 and everything was so new, and I had to Google mum's disease with her sitting in the room next door. Why can't she talk to me about it? It got worse when I was 14 years old and we still don't talk about it.”
Participants also stressed that they wished that the health-care professionals had taken on the responsibility of actively and repeatedly inviting contact and offering information during the course of the disease. The need for information changes over time, and so does the ability to receive information. The parents should be made aware of how the children are coping, and advice should be provided on how to create a climate in which the children can openly ask questions and share their thoughts on MS. However, because information can create insecurity, ambivalence about it was expressed. Staff and parents must be aware of this risk and include follow-up questions. Information was also generally reported to facilitate understanding of the everyday consequences of MS: fatigue, cognitive impairments, heat intolerance, and why the parent staggers or falls. As one participant expressed, “He can't do all the things other fathers do. And he gets angry really easy. But you don't think about it that way when it happens, that it's caused by the disease. You just think that he is acting wrong. You get angry with him when in fact it's the disease.”
The adolescents talked about measures that had been helpful for them in adjusting to their parent's MS and gave suggestions for future measures. Several adolescents suggested that health-care staff invite the parent to bring along his or her child to see the treatment location and meet the nurse, doctor, and physical therapist. This suggestion was based on their own highly valued personal experiences of accompanying parents who had asked for permission to bring their children. Meeting the doctor or nurse toned down the worries and fears, and visiting the physical therapist facilitated understanding of the parent's disability and functioning. As one adolescent stated, “I remember when you were standing, what you did, you let me try, I mean, I remember that you taught me, made it fun. It is fun to be involved and it has made it feel more natural, or natural, not so frightening.”
Information had been received from several sources: 1) preprinted available MS books for children, 2) booklets on MS or specific symptoms, 3) the Internet, and 4) taking part in MS instruction groups for next of kin. The adolescents pointed out that they wanted to be given the opportunity to decide who (friends, teachers, etc.) should be informed that their parent had MS. Suggestions for the future were that MS instruction and discussion sessions should also be available for younger children, both in groups and individually. The present study's focus group interviews served as an opportunity to meet others and share experiences. This was something that the adolescents considered important and valuable to offer. They challenged the health-care professionals to provide arranged group meetings and godfathering systems for adolescents.
Partners reported that their role was to give practical as well as emotional support to both their children and the sick parent. Active and early involvement on their part after their partner's diagnosis was considered a necessary condition for giving that support. The focus on the diagnosed parent made the partners feel left aside, invisible, and marginalized by health-care staff. The experiences of those who had decided uninvited to bring their children to a health-care appointment were entirely positive. As one participant stated, “The doctor took time to meet the children too. And I think that was very good. They got to see the environment.” Another commented, “We took the initiative and asked if we could bring the children. It meant a lot for [children's names]. And [child's name] was only 5 years old, so it depends a lot on who talks to them, but [provider's name] was fantastic! She met them at their level. She said hello to us and then focused on the children 100%.”
Partners perceived that they acted as a shield by taking responsibility for much of the information and questions asked by children, extended family, and others. In the words of one partner, “When I went with [patient's name] to visit the doctor, I felt that they only paid attention to her: How are you doing? How do you cope? And so on. Nothing about how things were going at home or with the kids or with the family. I felt it was only centered on [patient's name], so I felt terribly lonely at the time. I feel as if I have made this journey very much on my own.”
This role of informant stressed the need to be as well informed as the diagnosed parent at all times. Receiving the information simultaneously as a couple enabled discussions and promoted understanding between them. This was especially true when it came to symptoms such as fatigue and cognition. As one parent put it, “It is hard to relate to their fatigue. When you have worked a full day yourself, lifting heavy weights, you feel very tired. To come home to someone that has spent the day at home and who tells you how tired she is.”
The partners asked for the opportunity to contact health-care staff directly. Their sources of information were the Internet, books and brochures from medical companies, and arranged group instruction given by the MS treatment team. Meeting others in the same situation and sharing experiences with those who had lived with MS in the family for a longer period was considered valuable, and it was suggested that such meetings be arranged by the health-care professionals.
Perspectives of Parents with MS
The most striking finding to consider was the clearly expressed difficulty experienced by the sick parents with informing others about the disease when they were in shock themselves after being diagnosed as having MS. If the partner was involved at an early stage, he or she could share some of the burden of informing others, which was seen as a relief. Likewise, finding the right words when talking to younger children was experienced as difficult. In addition to the need for information given directly to the children, they also pointed out that they needed advice on how to address the children themselves. They all mentioned that the children's books from the pharmaceutical companies had been very useful as a tool when talking to children and others. A book more suitable for the youngest children was needed.
Because MS has an effect on the whole family, it was considered important that health-care staff acknowledge this and, thus, direct information to the whole family. The opportunity to take part in family counseling was suggested. Those with MS also pointed out that it might be valuable for the other family members to take part in information or discussion activities that exclude the person with MS to enable them to ask questions without having to take his or her feelings into account. Taking part in group meetings and instruction was described as positive, but participants pointed out that it could take time to cope with the diagnosis and be ready to meet people outside the family before getting involved in group activities. The children's reactions might be better understood at school if the teachers were informed. It was thought that assistance from health-care professionals to explain MS and MS symptoms was warranted and should not be limited to explanations to the closest family members. It was believed that such assistance should also be given to the patient's employer and colleagues, which would improve understanding and enable the patient to work more efficiently and productively. As one person stated, “It is a complicated disease. Nobody understands it completely, not even those of us who have MS. So it is hard to explain to adults and even harder to explain to children.” The basic understanding of MS in the general public was believed to have been improved by the books published by celebrities who have MS. Using Google as a source of information was rejected by some, who accepted only information provided directly by the health-care service.
The parents with MS related that they had received support and information through the MS team at the clinic. It was pointed out that a good knowledge of MS was more important than what profession the informant belonged to. Through the MS team, they had been able to attend group instruction sessions, where discussions were encouraged and the opportunity to share their experience with others in the same situation was considered helpful. It was considered positive that their partners and next of kin, including children aged 16 years and older, had been invited to take part in a similar event. The time between instruction classes for patients and partners should be as short as possible to enable further discussions at home when the subject came up. Single parents who were alone in informing the child when their ex-partner was uninterested in taking an active part in the process were candid about their difficulties. Bringing their children to visits at the health-care facility was found to defuse the situation, and holding an open house every year was suggested.
The results of the present study highlight the health-care professional's responsibility to provide information not only to the person diagnosed as having MS but also to the family. The provision of adequate information creates a base for the individual and the family to cope with the situation. Well-informed parents can support their children and contribute to an atmosphere in which questions are easier to raise. Without proper information, the children may develop an inaccurate picture of MS and even believe that they are partly responsible for the onset or the progress of the disease.18 In the present study, several parents told us that the children had asked if their mother or father would die of MS. It is vital that parents and health-care professionals be aware that children can have this impression of MS and that they address these thoughts.
Similar to the findings reported by Paliokosta et al.,2 siblings in the present study were differently informed depending on their age at the time their parent was diagnosed. Typically, the older sibling was better informed, and this discrepancy was sustained over time, with the younger child having less access to information than the older one. This discrepancy may be eliminated if information is offered regularly by the health-care professional. The opportunity for a partner to get first-hand information from the health-care service was also stressed as being important in the presence of cognitive dysfunction. Information was described as being double-edged. It was good to be well-informed, but at the same time, information could be frightening. Some parents had taken on the role of informing the children's school classmates or sports team members. This was described as both protecting (explaining why the parent stumbles and falls) and embarrassing.
Trustworthiness of the study results was considered in terms of credibility, dependability, and transferability.17 Conducting focus group interviews was considered the most appropriate way to collect informants' experiences and suggestions for the future. In addition, it was considered advantageous because the informants were stimulated by the information shared by others. During the interviews, the discussion leader made sure that everyone was able to share their experiences and thoughts and that the focus of the discussion was maintained. The informants reflected different perspectives on the research question based on their family role. Data were gathered for 8 months; to reduce the risk of inconsistency, an interview guide was used. The clinical experience of the researchers was considered an advantage when asking follow-up questions. However, at the time, none of the researchers was involved as a caregiver in the Department of Neurology. To achieve transferability of the results, the invitation to participate in the study was wide, with only linguistic exclusion criteria. Time since diagnosis (with different ways of informing of diagnosis, etc.) and age at the time of the interview varied greatly. Both sexes were represented in all the groups. However, all the participants except one were living in the same county at the time of diagnosis, which may have affected the results.
To gain more and deeper information and reduce the risk of recall bias, interviews with family members at the time of diagnosis and the following year could be conducted. There is a need for development and evaluation of information interventions directed toward family members separately and as a family. Little is known about the best way to provide information, especially for younger children. Special means could be used, for example, “My Mom's/Dad's Book,” in which the specific symptoms of the parent could be explained and changed during the course of the disease.
A routine should be created to ensure that the health-care staff asks about information needs at each visit. Information should be offered regularly that is suited to the progress of the disease and the maturity of the children. The information should be tailored to the recipient and individualized to the sick parent's clinical picture. Sources should be created for identifying unmet needs, for example, support groups. The parents should be encouraged to discuss MS with their children and to bring their children to health-care appointments.
Children should be informed regularly about the progress of the parent's disease.
The information provided should be suited to the recipient's level of maturity and individualized to reflect the parent's clinical picture.
The parents should be supported and advised to discuss the situation frequently with their children.
Forums for discussion should be offered.
We thank MS nurse Christina Holzleitner and counselor Pia Jernberg, both at the Department of Neurology, Örebro University Hospital, for help with recruiting participants.
Financial Disclosures: The authors have no conflicts of interest to disclose.
Funding/Support: The Research Committee in Region Örebro County and Neuro Sweden contributed financially to this study.
From the Faculty of Medicine and Health, Department of Medicine, Örebro University (YN), and the Department of Health and Medical Services (KB), Region Örebro County, Sweden.