ORIGINAL ARTICLE
A family matter – when a parent is diagnosed with multiple sclerosis. A qualitative study Katrin Bostr€ om and Ylva Nilsag ard
Aims and objectives. The aim was to explore and describe from a triple perspective – that of the ill parent, the healthy parent and the children – experienced issues that are important to acknowledge and act upon to make it easier for a child to cope when a parent is diagnosed with multiple sclerosis. Background. A chronic disease affects the whole family and has a substantial impact on the children. Traditionally, the focus is on the patient, and communication with other family members is not generally integrated into health care. Health care professionals need to be aware of a child’s needs when a parent is diagnosed with multiple sclerosis. Design. A qualitative design using content analysis with an inductive approach was used. Methods. Nine focus group interviews were conducted with the ill parents, the healthy parents and the children separately. Results. Participants jointly indicated that family members need to be recognised, both initially and onwards in their everyday lives. Seven categories were defined: Prerequisites within the families, Initial reactions, Trying to adapt and manage, Developing strategies, Everyday life, Thoughts about the future and Support from health care providers. Together they constituted the theme that multiple sclerosis is a family matter. Both ill and healthy parents wished for support from health care professionals in addressing their children’s needs. Conclusions. Health care professionals need to pay attention to children as a parent’s illness affects them. Not only the children would benefit, but so would their parents, as their worries for their children would be reduced. Relevance to clinical practice. Staff can be advised to pay attention to the parenting role, how the parenting role and parent–child relationship may change as a result of a chronic disease. Parents may need reassurance and benefit from advice about how to talk to their children about their condition and its impact.
Authors: Katrin Bostr€ om, PhD, Department of Health and Medical € Services, Orebro County Council, University Health Care Center, € Orebro; Ylva Nilsag ard, PhD, Associate Professor, Faculty of Medi€ € cine and Health; Medicine, Orebro University, Orebro, Sweden Correspondence: Katrin Bostr€ om, PhD, Department of Health and € Medical Services, Orebro County Council, University Health Care € Center, PO Box 1613, SE-701 16 Orebro, Sweden. Telephone: +46 19 602 7402. E-mail:
[email protected]
What does this paper contribute to the wider global clinical community?
• Confirms that MS affects the whole family;
• Recognises the importance of •
addressing family members’ need for support; Proposes that health care professionals have opportunities to empower parents to help their children cope.
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
© 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd. Journal of Clinical Nursing, 25, 1053–1061, doi: 10.1111/jocn.13156
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Key words: adaptation, children, family, multiple sclerosis, parent, partner, support Accepted for publication: 12 November 2015
Introduction A parent’s illness may have adverse impacts on children and family functioning. It has been recognised that chronic neurological disease affects the whole family and has an impact on the lives of the children (Jahanshahi & Sheikh 2007). The well-being of patients and their families depends on how they adapt to and cope with changed circumstances (McCabe et al. 2004). When multiple sclerosis (MS) enters the family, there is a need both for the individual and the family to integrate the physical, psychological and social consequences of the disease into their intrapsychic and interpersonal reality. Coping with and adjusting to MS takes both effort and time (Ehrensperger et al. 2008). Traditionally, physicians have focused on the patient, and communication with other family members has not generally been integrated into health care. However, health care professionals need to be aware of a child’s special needs when a parent is diagnosed with MS (Black et al. 1994, National Institute for Health and Clinical Excellence 2003).
Background Multiple sclerosis varies from one individual to another regarding initial symptoms, progress of the disease, development of disability and restrictions in participation in society. The inability to precisely predict the course of MS brings uncertainty to the whole family (Pakenham & Bursnall 2006). At the time of disease onset, many are parenting dependent children (Compston & Confavreux 1991). When one person in a couple is diagnosed with a chronic illness, communication about the illness is important for the well-being of both (Arden-Close et al. 2010). When a couple are parents, their well-being is also vital for their children (Eriksson & Svedlund 2006, Berg & Upchurch 2007, Bogosian et al. 2009). Children0 s ability to cope with a chronic disease such as MS appears to be determined by how well the healthy parent copes (Steck et al. 2007, Ehrensperger et al. 2008). Children and adolescents need support, but above all, it is necessary to support the parents as they provide stability for their children (Pakenham et al. 2012). In an ideal situation, parents encourage their children to talk about MS and the fears they may have. If parents choose not to talk about MS, the children may hesitate to ask questions, thus
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creating communication barriers between them (Kalb 2005, Bogosian et al. 2011, Nilsagard & Bostrom 2015). Research supports the idea that most children have a poor understanding of MS, and commonly information is received only from their parents or the internet (Cross & Rintell 1999, Nilsagard & Bostrom 2015). The ability to cope with a parent’s MS depends at least partially on how much the child knows about the disease (Lackey & Gates 2001, Bogosian et al. 2010). Providing information and support strengthens the child’s ability to cope and reduces the risk that the child’s own health will suffer. A first step would be to increase the parents’ knowledge of children’s needs in this situation since not all parents embrace the idea that MS may affect their children (Mutch 2005). Practical and emotional support from the healthy parent is important since the absence of it has a negative impact on the child (Bogosian et al. 2011). When a parent is diagnosed with a chronic condition, health care professionals have to enable the family members to cope with the consequences in everyday life (McCabe et al. 2004). Health care staff and the parent(s) need to cooperate in deciding what information should be presented to the child, and when it should be presented (Nilsagard & Bostrom 2015). Swedish health care is mainly provided by the County Council and financed through taxes. In most counties people with MS are cared for by multi-professional teams at the bigger hospitals. In concordance with Swedish legislation, the team has to acknowledge the children’s needs, but there is as of yet no explicit way to identify these children or established methods for supporting them. The available knowledge on content and distribution of support for these children is limited as research has mainly explored the impact of a parent’s disease on children. The purpose of this study was to explore and describe from a triple perspective – that of the ill parent, the healthy parent and the children – experienced issues that are important to acknowledge and act upon to make it easier for a child to cope when a parent is diagnosed with MS.
Methods Design Focus group interviews were conducted with the ill parents, the healthy parents and the children separately and based
© 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd. Journal of Clinical Nursing, 25, 1053–1061
Original article
on a semi-structured interview guide. A qualitative content analysis with an inductive approach was used. The study was ethically approved by the Regional Ethics Committee € in Orebro – Uppsala Region (2012/083) and followed the Declaration of Helsinki. In nine focus groups, 23 persons representing 10 families were interviewed. Both conjugal families and single parents were represented. Seven of the nine persons diagnosed with MS (1991 to 2010) were female and all of them had remained able to walk. Almost half of them had at least a part-time job. Among the five partners only one was female. Five daughters and four sons were interviewed, representing five families. The children’s ages at the time of diagnosis ranged from seven months to twenty years; most of the children were younger than seven. At the time of the interviews the children’s ages ranged from 12–24 years.
Data collection A convenient sample of parents with MS was identified by a team nurse or social counsellor and they were asked to invite family members of their choice to be interviewed. Written information and consent forms were provided in advance to give people time to decide whether or not to participate. The focus groups were held at a hospital between May 2012 and January 2013. The interviews had open questions linked to the course of illness, from first symptoms until the time of the interview, and experienced needs. They were led by one of the authors (KB) accompanied by the second author (YN). The interviews were audio recorded and transcribed verbatim.
A family matter
verified by referring back to the transcripts and determining the context and the meaning. 6 The formulated meanings in codes were related to each other and therefore organised together in accordance with different features based on similarities and differences in meaning and related to the process with MS. This phase of the analysis resulted in seven comprehensive categories reflecting the information given. 7 An all-embracing theme was identified as ‘MS is a family matter’. 8 The categories are interwoven but can be seen as separate entities. Quotations were chosen to describe each category.
Results Seven categories were defined: Prerequisites within the family, Initial reactions, Trying to adapt and manage, Developing strategies, Everyday life, Thoughts about the future and Support from health care providers. Together, they constituted a theme: MS is a family matter.
Prerequisites within the family The family members talked about how they cope with MS. Both their individual history and their family history shaped how they looked upon and reacted to the situation. Many described how their preunderstanding and thoughts about MS had painted a dark picture of the consequences of the disease: . . .my son’s problem is that he wonders if I’ll end up in a wheel-
Analysis Qualitative content analysis was used (Baxter 1991, Graneheim & Lundman 2004, Elo & Kyngas 2008). The analysis was performed in these steps: 1 The transcribed interviews were read several times in their entirety to obtain an overall sense of the context. 2 The interviews were grouped according to the different perspectives, and patients, partners and children were analysed separately. 3 All units of meaning (constellations of words or statements that relate to the same central meaning) were identified and marked. 4 The units of meaning were transformed by condensing and abstracting, and were analysed. 5 Coding was constructed through consensual agreement between two coders (KB and YN). The final coding was
chair. . . but that might be because we have a neighbour with MS who is in a wheelchair. (patient) I didn’t know what kind of disease it was. I had seen someone on TV with – I think it was called ALS, and I thought that it was something like that, that she would sort of – that the body would slowly deteriorate. . . and I was very upset then. (partner)
The strategies ranged from having very open communication, where parents felt that children need to be included, to keeping the MS diagnosis a secret. Some families involved their children right from the time of diagnosis, while others took it bit by bit over time. Some adolescents talked about how they had grown up with an ill parent and thus grew into the situation. Parents described retrogressive behaviour when MS entered the family, wherein the adolescent did not show concern about MS, but reacted strongly to small setbacks.
© 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd. Journal of Clinical Nursing, 25, 1053–1061
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Initial reactions The initial reactions within the families were coloured by their experiences from first symptoms to MS diagnosis. The reactions were dependent on how dramatic the disease onset was and the time frame from first symptoms to diagnosis. The symptoms ranged from ambiguous signs interpreted as something else to dramatic symptoms requiring acute hospital care. Even before diagnosis, several described how loss of balance resulted in accusations of being drunk, causing distress for both parents and children. The complexity of MS made it hard to inform others: Strange and complicated disease. No-one understands it. And that means hardly even. . . or, even we who have it don’t understand it. (patient)
For many parents, the initial concerns were not related to themselves but to their children. Being a single parent when diagnosed was described as a vulnerable situation – considering the difficulties involved with being alone in trying to manage both emotions and practical issues. The experience of having a partner diagnosed with MS was described in disparate terms and ranged from total surprise – ‘the news of the diagnosis came like a bombshell’ – to relief at having an explanation for the symptoms. Related to the onset of MS, the partners described their struggle to maintain control over their daily lives and their constant concern about their partner’s condition. Some experienced feelings of initially living on an emotional roller coaster due to their partner’s symptoms and an unclear situation:
Different stories were told depending on the child’s age at onset, as experiences differed for those who grew up having a parent with MS and those who were in their teens at time of diagnosis. For example, for one child MS first became obvious when he realised that his father could not manage to play football any longer. Acute symptoms, as well as symptoms that went unexplained for a long time, created anxiety for children. One child said that being informed that her parent had MS was valuable, as symptoms without any explanation were perceived as quite scary. Regardless of onset mode, several children were worried that their parent would die from MS. When there was little communication about MS, some children described how they kept their feelings inside themselves at home, and for some, support from their school/teachers became important. Siblings were given different opportunities to get information and thus to reach an understanding: But knowing nothing makes it even worse. . .. And XX, my eldest sister. . .it was almost as if she got to go with her to the hospital and stuff like that, but I..(gets quiet). (child, about sick parent)
Communicating about MS was considered complicated due to uncertainty about the progression of the disease. This made it difficult and emotionally loaded for the parents to answer their children’s questions: They may wonder “What’s going to happen?” “What will it be like after?” That’s the hardest part. (patient) Everything was so new, and it was like having to sit and Google
I walk on the side. The picture now is there’s going to be a ramp,
about Mom’s disease when she’s sitting in the next room and can’t
a wheelchair and the whole shebang. Oh yeah, and tots in nappies.
talk. . .why can’t she tell me about it? (child)
The curtain came down. Way down. (partner)
Initially, most healthy parents neglected their own needs and suppressed their feelings in an attempt to manage and give priority to the needs of their partner and children. Several healthy partners described how they tried to manage everything, both practically and emotionally, to compensate for what their partners could not manage due to MS. They revealed feelings of being alone and neglected by the health care system as well as by their social network as the focus was constantly on the person with MS:
Parents talked about reactions from their children and about how the reaction patterns could differ between siblings. In one family, the older sibling got very engaged and even gave their parent their first injection with immunomodulatory drug at the hospital, whereas the younger sibling reacted with anger and obstinacy. In another family, the youngest child described that she had felt like running away.
Trying to adapt and manage Nothing is said about how it’ll be at home. . .managing on one’s own. It’s hard to take care of everything at home all by oneself. (partner)
Two partners confided thoughts about suicide and one about divorce, but their concern for their children protected them from realising any of those thoughts.
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All families have their own history and developmental phases, both as individuals and as families. Many indicated that it took them longer than their partner with MS to come to terms with the diagnosis. Commonly, male partners felt obliged to put on a brave face:
© 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd. Journal of Clinical Nursing, 25, 1053–1061
Original article
A family matter
I managed to keep up the facßade for one year, feelings catch up –
She’s alive and feeling well in any case. . . So I try to focus on the
there was silence from the healthcare side then. I got massive anxi-
positives instead of just seeing the negatives. (partner)
ety. I was exhausted. (partner)
Having (and being) a teenager in the family was stressful both on individuals and on the family unit. Parents talked about ongoing negotiation about division of responsibilities. Teenagers could feel obliged to provide more help than would be required of most teens. It could be difficult to know the extent to which help should be offered, especially when the person who was offered help expressed ambivalence about receiving it. Adolescents wondered whether their parent’s request for help was always related to MS, and they expressed uncertainty, asking questions such as ‘How can one be tired after a day at home?’ To be unable to manage tasks without support gives rise to different feelings, and accepting being a person in need of help was perceived as difficult:
Everyday life Everyday life was described in both positive and negative ways. On the negative side, family members expressed that they were never able to forget that one parent had MS; there were always considerations to make. Some felt that they were always on guard due to their parent’s balance issues and frequent falls. Family members described how they became protective in situations where unknown people questioned the right to use handicap parking spaces or toilets. Access to toilets and the risk of falling due to loss of balance were constantly considered, especially when participating in activities in the community: Happens that he falls. . .I always run and see what’s happened
If I start doing the dishes, suddenly he’ll come and take over. And
whenever I hear anything. I’m always alert. (child about sick par-
that really irritates me! He’s fast, so everything’s done and I’m just
ent)
standing there. But I want to do something. (patient, about partner)
If we go out and she’s walking with her crutches. . .if some sonuvabitch comes along and shoves her, she’d go flying. So I’m worried
Parents expressed a wish to do things, their limitations notwithstanding. There were feelings of guilt as children either had to do a few more chores than other children or had to help at a younger age.
Developing strategies Strategies for managing in everyday life were developed over time. The family renegotiated responsibilities, adjusted or reorganised their daily activities, purchased items that facilitated routine tasks and asked others for help. This process was described as never-ending and time consuming. To negotiate and to accept doing less and to select only the most important things to do was described as a constant struggle. Parents made a conscious effort to avoid loading or limiting their children. The younger children were reported to adjust quite naturally, for example, playing beside the couch while their parent was resting. Being offered and actually accepting help from relatives was mentioned as one way to cope. To make life easier, practical solutions such as unbreakable drinking glasses or an air conditioner to maintain a cool indoor temperature were used. There were expressions about living in the present, not worrying too much about the future, and enjoying life for as long as they could, handling problems when they occur:
she’ll break a leg or crap like that. (partner)
On the other hand, some children experienced enhanced feelings of security, as MS resulted in their having a stay-athome parent. Older siblings more often felt they had to grow up faster and take more responsibility. This could create different ways of coping related to tasks in everyday life and cause tension between siblings. The period of transition to early adulthood was perceived as further complicated by having MS in the family: She was crying and shrieking, “O God I hate that fucking disease!” “Why does MS have to exist?” She thinks he’s embarrassing – she thinks it’s so unfair that it has to be this way, “cause it means we’re not really like any ordinary family”. (partner, about child) I don’t want to know anything more, don’t want to keep on jawing away about MS anymore. If you say “MS’ once more, I’ll scream”. (patient, about child)
The informants shared that there could be uncertainty in interpreting symptoms, and children sometimes expressed that they knew that their parent was different from others in that they could anger easily, lose their balance and be unable to do things other parents could do: He gets, like, angry at me. But when I thought about it, I realized it’s not me he’s angry at, but more like it’s the disease he’s angry at. (child, about patient)
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Insights related to having a parent with MS sometimes led to fewer arguments when the children were asked to help. Several family members reflected that everyday life gets easier to handle once the patient has to some extent accepted his/her limitations and adjusted to having to rest or using a wheelchair. It became apparent that the consequences of MS were gradually integrated into family life, creating a new normality: I think it’s hardest in the beginning, for everyone to understand what’s going on. But obviously, for the whole family, our whole lives are changed. But you get used to it. And things start to work out after a while. (child)
Thoughts about the future Thoughts about how the disease will impact the future were expressed by patients, partners and children. There were thoughts about how an increased disability level would affect living conditions. The always present MS and its possible progression created a certain tension in the family. Despite this tension, children did not want to talk too much about disease. On the other hand, it was difficult not to know how the sick parent felt: You’re always going around wondering “How afraid is Mummy actually?” And it’s not something I can ask her, but I’m thinking every day “How’s Mummy going to be tomorrow?” and stuff like that – questions about the future. (child)
Support from health care providers Descriptions emerged both of support that had been given and desired improvements. Some parents were uncertain about how to support their children and wished they had support from the health care system related to this. Their understanding, however, was that the responsibilities of health care professionals were directly related to the patient alone: I just don’t know. Should I talk about this or should I not talk about it? Is it too much for her? Is it too complicated for her? Is it too early? Or, should I protect her or should I not protect her? So it’s really difficult, you know. (patient, about child)
Family counselling was suggested. Those with MS also pointed out that it could be valuable for the other family members to take part in information sessions or discussion
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activities that exclude the person with MS, allowing them to ask questions without having to take the patient’s feelings into account: That you really can ask any questions, and not have to worry that she’s listening. I mean, that would make her situation so difficult. So it’s probably better if I go alone. (partner)
Even if some informants preferred family meetings, they described their participation in group meetings and education sessions positively. They expressed a wish to be able to cope well with the diagnosis before attending group activities and meeting others. The children’s reactions were believed to be better understood at school if the teachers were informed. Older children reflected upon the value of well informed and supported parents. Also, participation at a follow-up visit or at a physiotherapy appointment increased feelings of security and decreased anxiety or fear related to parental MS: X and the children picked me up when I had been to see my doctor. We knocked on the door and went to say hello to Y (the doctor) and that in itself helped them enormously – to put a face to the name, so that Y became a “real” person. (patient)
Discussion The results showed that each family member interprets and reacts to the present symptoms and disease load in his/her own way. This and the interactions within the family shape the need for support that health care professionals need to target. A mostly consistent picture emerged despite differences in symptoms, family structure and family members’ personalities. Family members jointly talked about a need to recognise the family, as one family member’s illness affects all of them, both initially and onwards in their everyday lives. Family functioning is essential for a child’s adjustment to parental illness (Sieh et al. 2012). This study shows that understanding and communication within the family shapes children’s ability to master the situation. A desire to be brave and protective can create barriers. Lack of, or insufficient, communication within the family or between health care professionals and family members can put a strain on one or several family members. This is in line with a system-theoretical perspective on families (Satir 1988, Minuchin et al. 2006). An important concept is that individuals must be understood not only on their own terms but in the context of the system of which they are a part (i.e. the family). Therefore, both the individual and the family context need to be taken into account
© 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd. Journal of Clinical Nursing, 25, 1053–1061
Original article
when considering issues such as information and communication, constancy and variation. The results show that a parent’s MS is accompanied by a variety of psychosocial demands on both the patient and those close to him or her. A challenge and basic task for a family when one of its members is diagnosed with a chronic disease is to create an understanding that preserves the family’s feeling of competency and mastery (Rolland 1994). The roles, needs and coping styles of individual family members are put under stress and need to be reconsidered to restore the balance in the relationships. Even if MS is something that concerns the whole family, the health care system primarily recognises the patient. To support a child effectively, one has to listen actively and respect the child’s own opinion. In stating that health care staffs need to acknowledge children as next of kin, it is presumed that the staff would be comfortable taking on the responsibility. They need tools, routines and shared responsibility and cooperation between health care, social services and schools.
The person with MS The results are consistent with those shown in Semple and McCance’s (2010) study of parents with cancer. Both parents with MS and parents with cancer struggle to know how best to talk to their children about the disease; both perceive a lack of guidance and support from professionals, and feel guilty about not being ‘a good parent’ and the effort required to maintain everyday life at home as a way to protect their children (Semple & McCance 2010). People with MS talk about their difficulty explaining their symptoms, their limited energy and the struggle between their desires to do certain things, and their inability to do them whenever they wish (Nilsagard & Bostrom 2015).
The role of the well parent Our study shows that partners of people diagnosed with MS are struggling to maintain control over their daily lives and are constantly concerned about their partner’s condition. Initially they neglect themselves to give priority to the needs of their partner and their children. This result is supported by earlier studies which conclude that spouses often felt overwhelmed, ignored and neglected and that they needed support for themselves and wanted support for their partner with MS (Courts et al. 2005, Corry & While 2009).
A family matter
Children and adolescents The fact that several children were worried that their parent would die underscores the need for families to understand and communicate about MS. This study confirms the difficulty families have in understanding and coping with symptoms such as fatigue and dysfunctional cognition, as well as a parent’s depressive mood (Cross & Rintell 1999, Bogosian et al. 2010, 2011). There are also accounts of children 7–14 years of age believing that their own behaviour may have influence on the course of MS (Cross & Rintell 1999).
A task for health care The health care system needs to pay attention to children as patients’ next of kin. Not only the children but also their parents will benefit as their worries for the children can be reduced. Information and education about MS is an important component (Black et al. 1994, Nilsagard & Bostrom 2015), and the present study shows a need to develop strategies to identify requirements for support and counselling, and to allocate resources to meet the needs of the whole family (Levin et al. 2015). Staff can be advised to pay attention to the parenting role, how the parenting role may change as a result of a chronic medical condition and how it affects the parent– child relationship. Parents may need reassurance and benefit from advice about how to talk to their children about their condition and its impact on family life (Sieh et al. 2012).
Method discussion Focus group interviews shaped possibilities to share experiences and reflect upon them. The interview guide ensured that the same questions were raised in all groups and the participants were encouraged to be reflective and speak freely without time limits. The trustworthiness and credibility of the study were verified in having a systematic process. To obtain neutrality and thereby strengthen trustworthiness (Lincoln & Guba 1985, Elo & Kyngas 2008) all data collection involving observations and listening for nuances and emotions was performed by the two interviewers/authors together. Conformability and dependability were enhanced through checking and rechecking the data throughout the study. Data were distributed through all categories from the three perspectives, which supports the
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credibility of the study. The fact that patients, partners and children gave a mostly consentient picture strengthens the results. Recall bias might have had some influence and the transferability of the results is limited to the study group and a Swedish context even if it can be assumed that a parent’s chronic disease affects the whole family. The results cannot offer information on children’s needs related to a parent with more severe limitations.
Relevance to clinical practice The results bring knowledge of the importance for clinical practice to take a family perspective when treating patients with MS. Health care staff have opportunities to integrate this in their encounters with patients, for example, by encouraging them in their parental role.
Contributions Study design: KB and YN; Data collection and analysis: KB and YN; Manuscript preparation: KB and YN.
Conclusions When a parent is diagnosed with MS, health care professionals need to recognise and address all family members’ needs. They need to: 1 target parental skills and give parents support in their parental role and encourage them to involve the children, 2 offer an opportunity to bring the children to meet hospital staff and see what goes on and 3 offer support and information intermittently, related to both processes of the disease and the children’s age.
Funding This research was supported by grants from the Research Fund of the Neuro Sweden, and from the Research Com€ mittee, Orebro County Council, Sweden.
Conflict of interest No conflicts of interests, no commercial entity have given support.
References Arden-Close E, Moss-Morris R, Dennison L, Bayne L & Gidron Y (2010) The Couples’ Illness Communication Scale (CICS): development and evaluation of a brief measure assessing illnessrelated couple communication. British Journal of Health Psychology 15, 543–559. Baxter LA (1991) Content analysis. In Studying Interpersonal Interaction (Montomery BM & Duck S eds). The Guilford Press, New York, London, pp. 239–254. Berg CA & Upchurch R (2007) A developmental-contextual model of couples coping with chronic illness across the adult life span. Psychological Bulletin 133, 920–954. Black DA, Grant C, Lapsley HM & Rawson GK (1994) The services and social needs of people with multiple sclerosis in New South Wales, Australia. Journal of Rehabilitation 60, 60–65. Bogosian A, Moss-Morris R, Yardley L & Dennison L (2009) Experiences of partners of people in the early stages of multiple sclerosis. Multiple Sclerosis 15, 876–884.
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Bogosian A, Moss-Morris R & Hadwin J (2010) Psychosocial adjustment in children and adolescents with a parent with multiple sclerosis: a systematic review. Clinical Rehabilitation 24, 789–801. Bogosian A, Moss-Morris R, Bishop FL & Hadwin J (2011) How do adolescents adjust to their parent’s multiple sclerosis? An interview study. British Journal of Health Psychology 16, 430–444. Compston A & Confavreux C (1991) The distribution of multiple sclerosis. In McAlpine’s Multiple Sclerosis, 2nd edn. (McAlpine D & Matthews WB eds). Churchill Livingstone, Edinburgh, pp. 71–111. Corry M & While A (2009) The needs of carers of people with multiple sclerosis: a literature review. Scandinavian Journal of Caring Sciences 23, 569–588. Courts NF, Newton AN & McNeal LJ (2005) Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing 37, 20–27. Cross T & Rintell D (1999) Children’s perceptions of parental multiple scle-
rosis. Psychology, Health & Medicine 4, 355–360. Ehrensperger MM, Grether A, Romer G, Berres M, Monsch AU, Kappos L & Steck B (2008) Neuropsychological dysfunction, depression, physical disability, and coping processes in families with a parent affected by multiple sclerosis. Multiple Sclerosis 14, 1106–1112. Elo S & Kyngas H (2008) The qualitative content analysis process. Journal of Advanced Nursing 62, 107–115. Eriksson M & Svedlund M (2006) ‘The intruder’: spouses’ narratives about life with a chronically ill partner. Journal of Clinical Nursing 15, 324– 333. Graneheim UH & Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24, 105–112. Jahanshahi M & Sheikh S (2007) Longterm neurological illness in parents has a substantial impact on the lives
© 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd. Journal of Clinical Nursing, 25, 1053–1061
Original article of children. British Journal of Neuroscience Nursing 3, 246. Kalb R (2005) Multiple Sclerosis: A Guide for Families. Demos Health, New York, p. 222. Lackey NR & Gates MF (2001) Adults’ recollections of their experiences as young caregivers of family members with chronic physical illnesses. Journal of Advanced Nursing 34, 320–328. Levin JB, Hoffnung G, Glukhovsky L, Botvinick J, Zemon V & Foley FW (2015) The effects of family functioning on patient self-efficacy in multiple sclerosis. In 29th Annual Meeting of the Consortium of Multiple Sclerosis Centers. International Journal of MS Care, Indianapolis, IN, p. 22. Lincoln YS & Guba EG (1985) Naturalistic Inquiry. SAGE Publications Inc, Newbury Park, London, New Dehli. McCabe MP, McKern S & McDonald E (2004) Coping and psychological adjustment among people with multiple sclerosis. Journal of Psychosomatic Research 56, 355–361. Minuchin S, Lee W-Y & Simon GM (2006) Mastering Family Therapy; Journeys of Growth and Transforma-
A family matter tion, 2nd edn. John Wiley & Sons Inc, Hoboken, NJ. Mutch K (2005) Information for young people when multiple sclerosis enters the family. British Journal of Nursing 14, 758–760. National Institute for Health and Clinical Excellence (2003) Management of Multiple Sclerosis in Primary and Secondary Care. Available at: http://guidance.nice.org.uk/CG8 (accessed 9 December 2014). Nilsagard Y & Bostrom K (2015) Informing the children when a parent is diagnosed as having multiple sclerosis. International Journal of Multiple Sclerosis Care 17, 42–48. Pakenham KI & Bursnall S (2006) Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents. Clinical Rehabilitation 20, 709–723. Pakenham KI, Tilling J & Cretchley J (2012) Parenting difficulties and resources: the perspectives of parents with multiple sclerosis and their part-
© 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd. Journal of Clinical Nursing, 25, 1053–1061
ners. Rehabilitation Psychology 57, 52–60. Rolland JS (1994) Families, Illness and Disability. An Integrative Treatment Model, 1st edn. Basic Books, A Subsidary of Perseus Books L.L.C., New York. Satir V (1988) The New Peoplemaking, 1st edn. Science and Behavior Books Inc, Palo Alto, CA. Semple CJ & McCance T (2010) Parents’ experience of cancer who have young children: a literature review. Cancer Nursing 33, 110–118. Sieh DS, Dikkers ALC, Visser-Meily JMA & Meijer AM (2012) Stress in adolescents with a chronically ill parent: inspiration from Rolland’s family systems-illness model. Journal of Developmental and Physical Disabilities 24, 591–606. Steck B, Amsler F, Grether A, Dillier AS, Baldus C, Haagen M, Diareme L, Tsiantis J, Kappos L, Burgin D & Romer G (2007) Mental health problems in children of somatically ill parents, e.g. multiple sclerosis. European Child and Adolescent Psychiatry 16, 199–207.
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