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Journal of Neuroscience Nursing:
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Chronic Sorrow in Next of Kin of Patients with Multiple Sclerosis

Liedström, Elisabeth; Isaksson, Ann‐Kristin; Ahlström, Gerd

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Questions or comments about this article may be directed to Elisabeth Liedström, MSc RNT, at She is a lecturer at the School of Health and Medical Sciences at Örebro University, Örebro, Sweden.

Ann‐Kristin Isaksson, PhD RNT, is a senior lecturer at the School of Health and Medical Sciences at Örebro University, Örebro, Sweden.

Gerd Ahlström, PhD RNT, is a professor and dean at the School of Health Sciences at Jönköping University, Jönköping, Sweden.

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The well‐being of patients' next of kin can be an important factor with regard to the care and rehabilitation of patients with multiple sclerosis (MS). The aim of this qualitative study was to explore the presence and meaning of chronic sorrow in a group of next of kin of patients with MS. Using a semistructured interview guide as a basis, 44 next of kin were interviewed. The results showed that 35 (80%) of the participants were considered to have chronic sorrow based on predetermined criteria. Three main themes characterized the meaning of chronic sorrow: loss of security, loss of sense of community in family life, and loss of joy and recreation. This study indicates that nurses need to devote greater attention to the well‐being of next of kin, offering support programs to help them cope with chronic sorrow.

Multiple sclerosis (MS) is a progressive chronic neurological disease and the most‐common cause of functional disability among young adults. It has a highly variable progression and degree of severity (Olek & Dawson, 2000). A protracted disease afflicts not only the sick person but also this person's family, whether living in the same household or elsewhere. Next of kin often feel an obligation to provide support, and they may spend decades as informal caregivers in the home with all the responsibility this implies (Boström, Ahlström, & Sunvisson, 2006; McKeown, Porter‐Armstrong, & Baxter, 2003). However, there have been relatively few studies of how next of kin experience the increased stress associated with MS (McKeown et al.).

Earlier studies of progressive diseases have identified recurrent periods of dejection or sorrow in association with personal losses caused by the disease, and the term chronic sorrow has been used to describe this (Ahlström, 2007; Eakes, Burke, & Hainsworth, 1998). The term originally was used to refer to the parents of children with learning difficulties (Olshansky, 1962). The affected person can enjoy neutral or even happy periods, but the sorrow is brought to the fore again by, for example, a worsening of the disease (Eakes et al.; Lindgren, Burke, Hainsworth, & Eakes, 1992).

The body of research completed by Burke, Eakes, and Hainsworth has led to the development of the concept of chronic sorrow into a middle‐range theory (Schreier & Droes, 2006). Chronic sorrow is a reaction to repeated losses for which there is no foreseeable end—this is in contrast to the sorrow caused by losing someone through death, the latter sorrow decreasing in intensity over time (Roos, 2002). Chronic sorrow is a normal and understandable reaction to a permanent change for the worse in the circumstances of one's life (Lindgren, 1996). In recent years, it has been described in studies of the parents of children who are physically or mentally ill (Eakes, 1995; Hobdell, 2004; Hobdell & Deatrick, 1996; Lowes & Lyne, 2000). It also has been described in studies of patients and next of kin in the case of progressive diseases (Ahlström, 2007; Lindgren; Mayer, 2001).

A previous paper by our research group reported the presence and meaning of chronic sorrow in patients with MS (Isaksson, Gunnarsson, & Ahlström, 2007). The patients described chronic sorrow as being closely related to losing hope for having a good life in the future; this occurred in connection with diminished physical capacity and energy. They had lost the possibility of participating in spontaneous activity and social relations and had lost integrity and identity. The losses caused them to experience constantly present or periodically overwhelming sorrow (Isaksson et al.). An earlier study described how chronic sorrow affected the next of kin of people with MS based on a sample of 10 next of kin (Hainsworth, 1996). The aim of the present study was to explore the presence and meaning of chronic sorrow in a larger group of next of kin.

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This study is descriptive, with a qualitative design that investigated the meaning of chronic sorrow in the next of kin of people diagnosed as having MS. With the aid of a semistructured interview guide that had been developed in previous research, qualitative interviews were conducted concerning chronic sorrow in next of kin (Burke, Hainsworth, Eakes, & Lindgren, 1992). The research project was approved by the research ethics committee of a university hospital in Sweden.

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Sample of Next of Kin

Sixty‐one people with MS who had participated in earlier studies (Isaksson, 2007; Isaksson et al., 2007) were asked if they were willing to allow researchers to contact their next of kin regarding participation in this study; those who said yes provided the name and address of this person. This resulted in a letter with detailed information about the study being sent to 46 next of kin. After 5‐7 days, further information was given over the phone before next of kin were asked if they were willing to participate. Two people did not want to participate; the study sample subsequently included 44 people (Table 1).

Table 1
Table 1
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The interview guide, the Chronic Sorrow Questionnaire, developed by the Nursing Consortium for Research on Chronic Sorrow, was used to gather data (Burke et al., 1992). It includes 16 openended questions designed to identify the presence of chronic sorrow (e.g., “Thinking back to how you reacted at first to the news of X condition, has there been a time since then when something happened and you had those same feelings of…?”) and its intensity (e.g., “How would you compare these later experiences to your feelings when you first learned of X condition?”). This article's third author devised a translation of the interview guide in consultation with Mary Burke, who published the interview guide in 1992 (Burke et al., 1992). The next‐of‐kin version of the interview guide then was translated into Swedish by an authorized translator. The interview guide was pilot‐tested in a study on next of kin of patients with chronic disease. The questions in the interview guide demonstrated clear understandability, according to the respondents. The next of kin were free to choose where they wanted the interview to take place. Most of the interviews were conducted in a secluded room at the researcher's place of work, the rest in the homes of the next of kin. All of the interviews were audiotaped and transcribed verbatim, with inclusion of all expressions of emotion.

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Processing and Analysis

The 44 transcribed interviews were subjected to qualitative latent content analysis, which involves an interpretation of the underlying meaning of the text (Graneheim & Lundman, 2004). The underlying assumption of qualitative content analysis is communication theory (Watzlawick, Beavin Bavelas, & Jackson, 1967). The interview text is seen as a communication act between the researcher and the text (Graneheim & Lundman; Watzlawick et al.). The first phase was to examine whether the next of kin had chronic sorrow. The interviews were read once and listened to twice to ascertain whether chronic sorrow was present. The assessment was based on seven criteria from the literature: the experience of significant loss of personal meaning, ongoing loss or several loss experiences, pervasive sadness or grief, permanent sadness or grief, periodic sadness or grief, potentially progressive sadness or grief, and periods that can be triggered by occurrence events (Eakes et al., 1998). Chronic sorrow was verified in this study when four of these seven criteria were present (Ahlström, 2007; Isaksson et al., 2007). The criteria were marked on a protocol by means of a plus (present) or minus (absent).

Interviews with five of the next of kin were excluded because the criteria for chronic sorrow were unmet. In addition, there was doubt concerning nine additional subjects; as a result, an independent assessment was made by an experienced assessor who had previously analyzed the interviews from the point of view of chronic sorrow (Ahlström, 2007). After a discussion between this article's first and third authors, five of the nine interviews ultimately were included. Further analysis included interviews with 35 next of kin.

In the next phase of the analysis, the transcribed interviews were repeatedly reviewed to gain a deeper understanding of their content and meaning units were identified. Meaning units are statements that relate to the same central meaning (Graneheim & Lundman, 2004). The meaning units were sorted according to the seven criteria of chronic sorrow (i.e., content areas) described earlier. An inductive analysis was performed during which the meaning units were abstracted; this emphasizes descriptions and interpretations on a high logical level. Abstraction includes the creations of codes, subthemes, and themes (Graneheim & Lundman). A theme represents the underlying meaning on an interpretive level developed from the condensed meaning units and codes (Graneheim & Lundman). Themes are an expression of the latent content of the text, but are not necessarily mutually exclusive. A theme can be constructed by subthemes or divided into subthemes (Graneheim & Lundman). This article's first author abstracted the text and identified the subthemes and themes. During the analysis process, the authors scrutinized and repeatedly discussed the results to ensure trustworthiness.

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Chronic sorrow was found to be present in 80% (35 out of 44) of the next of kin. The meaning of the next of kin's losses was analyzed, and from this descriptive themes emerged. It was found that the same themes and subthemes appeared in several content areas (Table 2); the results were bundled together and presented in terms of three themes and six subthemes (Table 3).

Table 2
Table 2
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Table 3
Table 3
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Loss of Security
Loss of hope regarding the future

Chronic sorrow was expressed under the subtheme loss of hope regarding the future in terms of fear and anxiety, uncertainty, deep dissatisfaction, and a sense of powerlessness with regard to future effects of the disease (Table 3). It was hard to have a positive attitude and be happy; the whole family lived in a state of uncertainty and the disease governed their lives.

It was a strain on the next of kin if it had been a long time between the beginning of the patient's illness and the establishment of the MS diagnosis. Partners brooded anxiously on the sort of future relationship that would exist between themselves and the patient. When the next of kin was the parent of a person living alone, there was anxiety regarding how this person would cope, especially financially, when the next of kin was elderly and not fit to help any longer. One person said the information given at the time of diagnosis notification was too negative (contributing to loss of hope). In the initial phase of the disease, next of kin had not always understood what it could mean to live with someone who had MS.

Some next of kin also made comparisons to other people with MS, fueling the fear that their loved one would one day be confined to a wheelchair. When they saw someone confined to a wheelchair, or when they saw their child stumble because his or her legs would not “obey,” they felt despair. It was difficult to feel any security or harbor any hope concerning the future amid the constant threat of a symptom flareup and a worsening of the disease.

The doctor was very rigid, ever so categorical. You shouldn't be that way to a patient. Just saying there was nothing to be done was a way of snuffing out any hope, so brusquely too. (Interview 35)

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Loss of participation and sense of being respected

The expression of chronic sorrow originating from a lack of understanding on the part of nursing staff, relatives, friends, and acquaintances fell under this subtheme (Table 3). The next of kin felt they no longer participated in their previous social networks, nor did they feel they were participating in care. They also did not feel the staff treated them with respect. When it came to care, they felt they had to fight for their rights and perceived the staff lacked a holistic perspective. When next of kin were not treated with respect, they lost their trust in the entire staff. Loss of trust also was attributed to a lack of continuity in care. Some next of kin felt health staff was against them, and that when staff gave them requested information, they did so in a nonchalant or perhaps offensive manner. Next of kin felt powerless if they were unable to obtain sufficient information concerning prognosis, rehabilitation, or available financial and practical support. They also said they did not understand how serious the disease was until there was a new flare‐up and the patient became much worse. The despair and sense of powerlessness was made worse by a sense of not participating. They did not feel respected for their emotional reactions, nor were they offered any professional help. In the case of a serious accident, however, one next of kin reported that help was available from a social worker, psychologist, and social insurance office. But when the problem was a neurological disease (“a prolonged accident”), no such help was available. The difference in the case of MS was taken as a disparaging lack of respect and it caused sorrow.

We asked about acupuncture and were answered with a sneer. (Interview 22)

The focus is very much on her. There's something every day! They're always showing consideration for her—it's an artificial relation. There are two that have got the disease, but there's only one that gets attention for it. (Interview 35)

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Loss of Sense of Community in Family Life
Loss of freedom and independence

The next of kin prepared themselves for the sick person's becoming worse and for an even greater reduction in the family's freedom (Table 3). They ruminated about the obligations and rights they had as next of kin vis‐à‐vis the sick person. They felt there was an unspoken demand that they should see to all the practical things in family life. If they resisted this demand, they were saddled with the additional burden of a nagging conscience. Some of them said they wanted to get out of the situation and start all over again on their own, but the thought of leaving their partner weighed heavily on their conscience. When it became harder for the patient to go out, the next of kin stayed home more, too. Next of kin who were parents especially were affected by a lack of support, expressing disappointment at society's not having made their burden lighter as they had expected. Some next of kin were anxious about how things would be for the children of the person with MS.

Next of kin said the patients with MS did not receive support. Patients need both the fellowship of others in the same situation and healthy people with whom to associate. One source of disappointment among next of kin was not being able to afford to work fewer hours to give the patient practical assistance and also enjoy some recreation and relief from their burden.

The most difficult times are when you think, “My God, I want to do something myself but I can't.” (Interview 5)

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Loss of a shared everyday life

Next of kin experienced chronic sorrow at not being able to participate in the sick person's everyday life to the desired extent (Table 3). The inability to participate might be due to living somewhere else or to having a job. The next of kin also may feel guilty about not having made sufficient effort to participate in the everyday life of the person with MS. Experiencing a lack of emotional contact with the patient, the next of kin felt alone. The relationship between spouses underwent strain if the healthy spouse had too much practical work to do taking care of a home and children. These spouses sometimes felt alone in the relationship, missing daily life together and having no one with whom to share thoughts, feelings, and events. The situation was more intolerable if the person with MS could find no joy in life—the next of kin's outlook grew more somber and everything felt hopeless. It was difficult for spouses to continually take into account that the sick person was tired or in a bad mood or that as a couple they could not help each other as they used to. Feeling powerless when confronted with the worsening disease was a great strain; it wore down the next of kin who had to, as one person put it, “just stand and watch.”

She's often tired and needs a lot of rest. There are the children and the home to see to—it's a lot. I accept that she needs all that rest, but there's a lot that doesn't get done and it can be stressful. I'm not accusing her or saying she ought to do more, but the fact remains there are things that don't get done. (Interview 7)

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Loss of Joy and Recreation
Loss of contact with one's own feelings

Next of kin tried to shut out their own feelings to cope with the situation (Table 3). Often, they wanted some sort of conversational contact to help them feel better. One next of kin said that she suppressed her feelings because she wanted to master the situation, and this meant not paying attention to how she felt. The sick person was more important to her than her own feelings. Wanting to appear strong in front of others, next of kin tended to suppress their feelings. When they were on their own, they could let it all out. One next of kin said that her work brought her into contact with people who had problems like those of her daughter who had MS, but this was too much for her and she had to get a fellow worker to take over.

I don't have time to feel sad, or can't cope with it—and if I did feel sad, I wouldn't be able to cope at all. (Interview 17)

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Loss of relaxation

Chronic sorrow also was associated with the loss of opportunities for relaxation; next of kin, for example, could no longer spend time with friends, visit the countryside, or go away on a vacation (Table 3). Next of kin had to plan their activities far more than before the illness. Social activities often were reduced because the person with MS was too tired or friends kept their distance. Next of kin could find it tiresome to do things on their own; as a result, they gave up activities in which the other person could no longer participate. Next of kin felt a sense of responsibility regarding the situation, and were unable to relax, always feeling tense and worried about what might happen. Opportunities for relaxation also were lost when next of kin cared for the person with MS at his or her home or in their own home. Parents helped their grown children, siblings helped siblings, adult children helped their parents. Parents also took care of grandchildren, and siblings took care of siblings' children. When something unexpected interrupted normal routines (e.g., if next of kin fell ill), there was chaos. Next of kin wanted to know where they could turn when problems arose.

I'm afraid deep down that it's going to get worse again, so I can't relax—the least little deviation and you're scared again: What are we going to resort to now? (Interview 8)

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The results of the study indicate that 80% (35 out of 44) of the next of kin reported chronic sorrow. In a previous study, 62% (38 out of 61) of the patients with MS who were paired with their next of kin in the current study experienced chronic sorrow in spite of the fact that the majority of the patients had only mild or moderate functional impairment as a result of MS (Isaksson et al., 2007). The next of kin experienced a loss of security, family community, and joy because of the MS. Chronic sorrow caused by the losses accompanying chronic illness can be as intense for the next of kin as for the sick person (Hainsworth, 1996).

Within the theme loss of security, next of kin speak of a sense of alienation causing fear, insecurity, and a sense of powerlessness. There was a lack of information regarding the course of the disease, interventions, and the help that was available for next of kin. Next of kin felt disparaged and thwarted; they were not treated with respect. There was neither continuity nor a holistic perspective on the part of care staff. In a study of people with MS and their families, Thornton and Lea (1992) found that the majority of those taking part were wrongly informed about the disease and unaware of the help that was available, which caused a great deal of stress and worry. Courts, Newton, and McNeal (2005) described how next of kin felt ignored, neglected, and deeply upset because of a lack of information. Next of kin sought information about complementary therapies, treatments, and medication, and wanted the ill person to be treated from a holistic perspective. Boström and colleagues (2006) also reported that next of kin articulated a lack of knowledge and expressed a desire for more information. Furthermore, these next of kin wanted an opportunity to participate in care and be present when things were discussed because the disease was of great significance for them. Nurses and other healthcare providers need to understand how next of kin feel about the changes brought about by a member of the family having a progressive disease (Boström et al.). The next of kin in the present study found it difficult to harbor hope regarding the future because of the unpredictable nature of the progression of the disease.

A study by McKeown and colleagues (2003) demonstrated that next of kin spend a considerable amount of time helping people with MS with personal care, hygiene, and housework, and this can have a negative effect on the next of kin's physical and mental well‐being, social life, and financial situation. The present study, too, showed a negative effect on mental well‐being, social life, and financial situation. Next of kin who were not living with the person with MS were anxious about how the latter would cope financially in the future. Next of kin who were living with the ill person felt they could not afford to work fewer hours to give this person practical assistance and to lighten their own burden. They felt they had lost a great deal of their freedom and independence, and there was rumination about what the relationship would be like in the future. A study by Janssens and colleagues (2003) showed that both patients and their partners experienced a manifest emotional burden on average 8 months after the diagnosis. Half of them experienced anxiety, anguish, and fatigue. It has been shown that the highest level of stress is experienced by next of kin who have the least support from family, friends, neighbors, religious institutions, and care staff (Hainsworth, 1996; Hakim et al., 2000; McKeown et al.).

The next of kin experienced a loss of security, family community, and joy because of the multiple sclerosis.

The next of kin in the present study spoke of a loss of opportunities for relaxation; they could no longer spend time with friends as before, enjoy the countryside, or go away on vacation. They gave up activities in which their partner could no longer join. Earlier studies have shown that next of kin who act as caregivers have experienced a worsening of their social life (Cockerill & Warren, 1990; McKeown et al., 2003). In Cockerill and Warren's study, onethird of the next of kin reported psychological stress, and the greatest need among the next of kin was for relaxation. In the same study, 55% of the next of kin did not permit themselves time off for recreation, social events, or a holiday, which is in line with what is reported in the present study under the theme of loss of joy and recreation.

The next of kin in the study said they had a full commitment apart from visiting the person with MS, the majority having a full‐time job and a family for whom to provide. Some of the next of kin had children at home and a social life they were struggling to maintain. The 35 next of kin in whom chronic sorrow was identified had a mean age of 48 years; 23 of them were spouses or cohabiting partners living with the ill person. The next of kin spoke of a new role as informal caregiver, having to look after the home and children, support the ill person, go to work as normal, and see to the family's social life. Nine of the 35 were parents, 2 were siblings, and 1 was a child; none of these was living with the person with MS. The parents (9) experienced constant anxiety as to how the ill person would cope living alone, and they gave all the help they could. The fact that it can be stressful to be the next of kin even if not living with the person with MS is very much in line with the results of a Boström and colleagues (2006) study regarding muscular dystrophy. A prolonged illness afflicts the entire family regardless of whether all members are living in the same household.

An analysis of the 44 interviews indicated that 9 participants did not fulfill the criteria of chronic sorrow; 8 of them were men. Roos (2002) maintained that women and men treat losses in different ways: Many men experience chronic sorrow with great intensity, but do not talk about it as much as women do. Boström and colleagues (2006) indicated that men tend to be practical problemsolvers, while women tend to gravitate toward emotional involvement.

The results of the earlier study (Isaksson et al., 2007) show that the most frequent losses experienced by patients with MS were the losses of hope and control over one's own body. For the patients in the earlier study, the meaning of chronic sorrow had to do with physical, psychological, and social losses; for the next of kin in the present study, chronic sorrow had to do with the latter two types of loss. Despite the fact that the patients mentioned physical losses, chronic sorrow was less frequent among the patients than among the next of kin (62% as compared with 80%). A possible explanation is that support by nursing staff often is directed toward the patient while the next of kin are left out. Whether the same situation exists regarding patients and next of kin in the case of other chronic diseases needs to be investigated in future studies. Earlier research, most often using a qualitative method, indicates a high level of chronic sorrow in both groups (Hainsworth, 1994, 1996; Lindgren, 1996). Nurses should pay attention to chronic sorrow in next of kin, who need to be offered more support to help reduce the stress in the family that is brought on by such sorrow.

Nurses need to view patient and family as a single entity and work in partnership with the entire family. Many next of kin assume a great deal of responsibility by taking on tasks in the home (Duijnstee & Boeije, 1998). Nurses have an important role to play in identifying next of kin who are weighed down by a large burden of work in the home of the person with MS and who need support (Janssens et al., 2003). Next of kin sometimes need help setting limits to their involvement in caring (Courts et al., 2005). Social support has proved to have a beneficial effect on next of kin with regard to handling chronic sorrow and general health and family life, and it is important in enabling people with functional disability to go on living at home (Hainsworth, 1996; McKeown et al., 2003). Support for the next of kin means support for the sick person as well in the form of increased well‐being in the family (White, 1998; Wollin, Yates, & Kristjanson, 2006).

If factors such as well‐being, social network, education, and financial situation can be identified with respect to next of kin, clinical nursing interventions also can focus on the changed needs of these individuals and support them in their role as informal caregivers (Larson, 2005). A study of next of kin caring for people with Alzheimer disease has pointed to constant support as a means to forestall mental, emotional, and physical fatigue (Mayer, 2001).

It is important that nursing staff focus on promoting the health of the entire family, and programs should be developed for enhancing the next of kin's ability to cope with chronic sorrow. Offering next of kin the opportunity to hear about the disease can reduce their anxiety. Information also should be given about the insurance system, and next of kin should be encouraged to talk about their work situation so the best solution can be found both for the person with MS and for themselves. The contribution of the present study has been to clarify the meaning that the losses associated with MS have for the next of kin. Chronic sorrow was experienced by next of kin as a result of the loss of security, loss of the sense of community in family life, and loss of joy and recreation.

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Study Considerations and Limitations

It was difficult to sort the various statements into content areas because the criteria proved insufficiently distinct. The loss first mentioned by the next of kin was assigned to the content area significant personal loss, and the rest of the losses mentioned were assigned to the content area further losses of significance. The content areas periodically recurring sorrow and triggers of sorrow are difficult to keep apart when sorrow recurs; it often has been triggered by something. The content area loss described as enduring contains statements concerning the future, and in some cases it was difficult to say if the statements would have been assigned more appropriately to the content area loss described in terms of a pervasive feeling.

Few statements were assigned to the content area gradually increasing sorrow. In many cases, it had been a long time before the MS diagnosis was established, and during this period the family had brooded over diseases they considered even worse than MS. In these circumstances, it could seem a relief to receive the MS diagnosis. When the flareup that resulted in the diagnosis was over, there was a decrease in emotional strain—things were not as bad as they might have been. Nevertheless, there was chronic sorrow with recurring periods of dejection. Previous studies have been diffident regarding the progression aspect of the theory of chronic sorrow because only cross‐section studies have been performed, and this makes it difficult to say anything about progression (Eakes et al., 1998; Isaksson et al., 2007). Capturing a gradual increase in the progress of a disease requires a longitudinal research design with repeated measurements.

To attain credibility (Lincoln & Guba, 1985), the different stages of the analysis were scrutinized and repeatedly discussed within the research group. To attain dependability (Lincoln & Guba), it was important that all persons interviewed received the same questions, and to this end an interview guide was used—the same one as in the previous study (Isaksson et al., 2007). Because earlier empirical study of chronic sorrow of next of kin identified the extent of such sorrow in a few next of kin, uncertainty exists regarding the degree of results transferability to other next of kin.

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The study revealed the presence of chronic sorrow is more common among next of kin than among patients with MS. Previous research concerning chronic sorrow with specific reference to next of kin of people with MS comprised just one study involving only 10 participants (Hainsworth, 1996). Nevertheless, the findings of the earlier study and those of the present study are in agreement regarding the proportion of next of kin experiencing chronic sorrow (80%). This study provides deeper knowledge of the concept of chronic sorrow with respect to a larger group of next of kin. Furthermore, its exploration of the losses brought about by MS in terms of loss of security, loss of the sense of community in family life, and loss of joy and recreation offers greater understanding of the situation experienced by next of kin.

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