The cooling-suit: a study of ten multiple sclerosis patients’ experiences in daily life

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<ul><li><p>The cooling-suit: a study of ten multiplesclerosis patients' experiences in daily life</p><p>Gullvi Flensner RN BS(N) MS(N)Lecturer, Department of Nursing Sciences, Vanersborg University College</p><p>of Health Sciences, Sweden</p><p>and Catharina Lindencrona RN BS(ED) MS(ADMNED) Dr Med ScSenior lecturer, Department of Nursing Sciences,</p><p>Vanersborg University College of Health Sciences, Sweden</p><p>Accepted for publication 21 July 1998</p><p>FLENSNERFLENSNER GG. &amp; LINDENCRONALINDENCRONA C. (1999)C. (1999) Journal of Advanced Nursing 29(6),</p><p>14441453</p><p>The cooling-suit: a study of ten multiple sclerosis patients' experiences</p><p>in daily life</p><p>Approximately 60%80% of all multiple sclerosis (MS) patients are heat</p><p>sensitive. The aim of this study was to gain information on the effects of an</p><p>assistive device, the cooling-suit, on MS-patients' self-care ability and also</p><p>practical implications. A single-case approach was adopted in a quasi-</p><p>experimental before-and-after study. The cooling-suit was used in their own</p><p>homes by 10 individuals with diagnosed MS in different stages from relapsing</p><p>remitting to chronic progressive. Data collection procedures were self-assess-</p><p>ment through a structured assessment-instrument, an open-ended interview</p><p>before and after the intervention and a diary written during one week. The</p><p>selected instrument, the MS Self-Care ADL Scale, has been developed for</p><p>persons with MS and was translated into Swedish. The results showed</p><p>increased self-care ability during and after use of the cooling-suit. However,</p><p>different aspects of daily life activities were improved and to a varying extent. It</p><p>is concluded that the study participants were supported and empowered in</p><p>different activities of daily life such as walking and transfer and reduced</p><p>voiding problems by using the cooling-suit. Some difculties in handling the</p><p>cooling-suit were also reported.</p><p>Keywords: ADL, cooling, intervention, multiple sclerosis, nursing,</p><p>self-assessment, self-care</p><p>INTRODUCTION</p><p>Increased discomfort when hot is reported by people</p><p>aficted with multiple sclerosis (MS). Cooling by means</p><p>of an assistive device (a cooling-suit) has been reported to</p><p>relieve symptoms and also improve motor function (Capello</p><p>et al. 1995, Coyle et al. 1996, Kinnman et al. 1997).</p><p>The cooling-suit was introduced for persons with MS in</p><p>the United States of America (USA) in the early 1990s and in</p><p>Sweden in 1994. In this article, a study of the effects of a</p><p>cooling-suit on Swedish MS-patients' self-care is present-</p><p>ed. Their personal experience of practical aspects when</p><p>using such a device is also highlighted.</p><p>MS is a chronic neurological disease with as yet no cure</p><p>available. Demyelinating lesions may occur in both the</p><p>central and the peripheral nervous system. In the Scandi-</p><p>navian countries, approximately one person in a thousandCorrespondence: Gullvi Flensner, Vanersborg University College</p><p>of Health Sciences, P.O. Box 236, SE-462 23 Vanersborg, Sweden.</p><p>Journal of Advanced Nursing, 1999, 29(6), 14441453 Issues and innovations in nursing practice</p><p>1444 1999 Blackwell Science Ltd</p></li><li><p>is affected by MS, more women than men. The onset</p><p>mostly appears between 20 and 50 years of age (Nyland &amp;</p><p>Gronning 1991). The clinical course varies in four</p><p>different types: benign, relapsing-remitting, relapsing-</p><p>progressive and chronic-progressive (Teasell 1993).</p><p>About 70% of the MS patients are mobility disabled and</p><p>60%80% are heat-sensitive (Teasell 1993, Ebers 1994).</p><p>Neurological manifestations are muscle weakness, lack of</p><p>balance, numbness, spasticity, tremor and incoordination.</p><p>Problems from the bladder and bowel may also occur, e.g.</p><p>urgency, frequency, incontinence and constipation.</p><p>Cognitive problems such as memory loss and attention</p><p>and concentration difculties have been reported (Teasell</p><p>1993), while fatigue is described as one of the most</p><p>disabling symptoms (Schwarz et al. 1996) and is common</p><p>in about 80%90% of MS patients (Piper 1993).</p><p>All these symptoms inuence daily life. The symptoms</p><p>are aggravated in warm environments, which inuences</p><p>self-care ability and social activities. Lowering of the body</p><p>temperature with cold water and lowering of room</p><p>temperature often brings some relief from these symptoms.</p><p>The cooling-suit has been reported to be a more effective,</p><p>practical and comfortable way of cooling than other</p><p>methods (Syndulko et al. 1996, Kinnman et al. 1997).</p><p>Nurses are involved in MS patients' self-care through</p><p>assessment and planning of care, partial or full compen-</p><p>satory assistance, support and evaluation of needs and</p><p>given care. Self-care is described by Orem (1995). Her self-</p><p>care model was the framework for an assessment</p><p>instrument specially designed for persons with MS,</p><p>developed by Gulick (1987, 1988a, b).</p><p>Self-care includes all activities of daily life. According to</p><p>Orem (1995), the self-care ability depends on an</p><p>individual's (i) self-care requisites: universal needs,</p><p>developmental needs and needs in case of health-devia-</p><p>tion, (ii) self-care agency and (iii) determinant factors in</p><p>the environment. Soderhamn (1998) recently dened the</p><p>concept self-care agency as having the nature of an action</p><p>repertoire.</p><p>Orem's model (1995) includes ve systems of nursing</p><p>activities: (i) doing or acting; (ii) guiding and directing;</p><p>(iii) physical and/or psychological support; (iv) provision</p><p>of a supporting environment and (v) teaching. Decits</p><p>between self-care agency and self-care demands create the</p><p>need for help from someone else. This is often the case</p><p>with MS patients.</p><p>THE STUDY</p><p>The aim of the study was to collect information on the</p><p>inuence of the cooling-suit on MS patients' self-care</p><p>ability and their experiences of using such a device in</p><p>daily life.</p><p>A quasi-experimental before-and-after study was</p><p>designed. Both quantitative and qualitative methods for</p><p>data collection in a methodological triangulation were</p><p>used (Polit &amp; Hungler 1993). The experimental part was</p><p>intervention with a cooling-suit. Since MS symptoms vary</p><p>between individuals, a single-case approach was adopted</p><p>where each person is his or her own control (Kazdin</p><p>1982). The individual self-assessment and experience was</p><p>the basis for comparison (Taylor &amp; Bogdan 1984). The</p><p>study participants were all voluntary and matched</p><p>specic inclusion criteria. They were not selected</p><p>randomly and no control group was used (Kazdin 1982,</p><p>Polit &amp; Hungler 1993).</p><p>Approval for the study was given by the Research Ethics</p><p>Committee, Goteborg University. Verbal and written</p><p>information was given to study participants and their</p><p>physicians. Signed consent was obtained from each</p><p>person included in the study, who were also informed</p><p>they could withdraw without giving any reason.</p><p>Study participants</p><p>Inclusion criteria were (i) diagnosed with MS; (ii) stability</p><p>of disease symptoms; (iii) no infection or inammatory</p><p>condition; (iv) ability to handle a cooling-suit alone or</p><p>with help; (v) own motivation and (vi) ability to cooperate</p><p>in collection of data.</p><p>Study participants were approached by means of a letter</p><p>to all members of three local MS groups in western</p><p>Sweden (n 98). Thirty responded to the invitation.After receiving further information by phone and by mail,</p><p>25 remained. Four of them withdrew and one died before</p><p>the study.</p><p>From this sample, 10 were excluded during the data</p><p>collection period. One had a relapse episode, two devel-</p><p>oped infections and inammatory conditions, one had</p><p>difculties in handling the cooling-suit, two were not able</p><p>to perform the data collection and four found the cooling-</p><p>suit too cool. This study therefore consists of data from 10</p><p>individuals, seven women and three men.</p><p>The studied group was heterogeneous with respect to</p><p>sex, age, course of the disease, self-care ability, civil</p><p>status, child responsibility and employment. They are</p><p>presented in Tables 13.</p><p>Intervention</p><p>The cooling-suit consists of a microclimate system in</p><p>which cooled liquid circulates in tubes inserted in a</p><p>headcap and waistcoat. This provides cooling for the head</p><p>and upper part of the body. In use, body temperature</p><p>decreases between 01 and 10C (0218F). The length ofcooling time needed varies depending on factors such as</p><p>constitution, how well the cooling-suit ts and the</p><p>ambient temperature. Thirty to forty-ve minutes, three</p><p>to four times a day is described as normal use (Syndulko</p><p>et al. 1996).</p><p>Issues and innovations in nursing practice The cooling suit</p><p> 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 29(6), 14441453 1445</p></li><li><p>Two basic conditions for the study were decided upon.</p><p>The rst was to minimize bias and come as close as</p><p>possible to each individual's true experience. The second</p><p>was to avoid an effect of the attention in itself. The</p><p>participants were therefore carefully instructed and</p><p>trained in how to prepare for cooling and how to use the</p><p>suit and a manual was introduced. The use of the cooling-</p><p>suit was demonstrated step by step and also tested in a</p><p>learning situation. A follow-up was done by a phone-call</p><p>one week later.</p><p>The duration of the intervention was set to not less than</p><p>four weeks. Depending on each participants' individual</p><p>physical, psychological and social situation and own</p><p>wishes, they could continue longer than this period.</p><p>Data collection</p><p>Three means of data collection were used: a self-assess-</p><p>ment instrument administered before and after the inter-</p><p>vention, an open interview also conducted before and</p><p>after the intervention and a daily diary written by each</p><p>participant for one week during the intervention.</p><p>ProcedureAll study participants were instructed by the same person,</p><p>who also collected interview data. Each MS patient</p><p>assessed his or her self-care ability using Gulick's instru-</p><p>ment (1988a) before the rst interview and introduction of</p><p>the cooling-suit. After completion of the diary and at the</p><p>end of the intervention period, Gulick's instrument was</p><p>again lled in by the study participant and the second</p><p>interview was performed.</p><p>Self-assessment instrumentAfter testing for face and content validity of three ADL-</p><p>instruments, the self-administered ADL scale for persons</p><p>with Multiple Sclerosis was selected (Gulick 1988a).</p><p>Gulick's instrument was considered to have adequate</p><p>content, form, sensitivity and usefulness for the purpose</p><p>of this study and high validity and reliability for this</p><p>instrument has been reported in earlier studies with MS</p><p>patients (Gulick 1987, 1988b, 1994). Translation into</p><p>Swedish followed steps described by Streiner &amp; Norman</p><p>(1995).</p><p>The self-administered ADL scale for persons with Mul-</p><p>tiple Sclerosis includes three scales: (i) MS Self-Care ADL</p><p>Scale; (ii) Assistive Devices and (iii) MS-Related Symp-</p><p>toms. Of these, the rst scale was used in this study for</p><p>assessment of self-care ability in relation to common daily</p><p>activities.</p><p>The MS Self-Care ADL Scale has 11 subscales: eating,</p><p>dressing, walking, transfer, travel, bathing, toileting-</p><p>urination, toileting-bowel, recreation and socializing,</p><p>sensory and communication and intimacy. In each</p><p>subscale, ve items are graded on six levels from never</p><p>(0) to always (5), both on self-care ability and help from</p><p>others. Intimacy is not assessed in the form of help from</p><p>others. Summated scores range from zero to 25. Differences</p><p>between the self-care ability score and help from others</p><p>score may range from plus 25 (independent) to minus 25</p><p>(totally dependent).</p><p>Table 1 Study participants' (n = 10) age, age at onset and years of diagnosed MS</p><p>Age Age at onset Years of diagnosed MS</p><p>Sex mean variation mean variation mean variation Total n</p><p>Female 46 3357 33 2350 135 429 7Male 49 4160 39 3046 113 419 3</p><p>Total 47 3360 347 2350 129 429 10</p><p>Table 2 Study participants' (n = 10) type of MS and their ADL-status</p><p>ADL-status</p><p>Type of MS Independent Partly dependent Totally dependent Total n</p><p>Relapsingremitting 3 3</p><p>Relapsingprogressive 2 2</p><p>Chronicprogressive 2 3 5</p><p>Total 5 2 3 10</p><p>G. Flensner and C. Lindencrona</p><p>1446 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 29(6), 14441453</p></li><li><p>InterviewsInteviews took place in the home of the interviewee using</p><p>a conversational form (Taylor &amp; Bogdan 1984). All except</p><p>one were tape-recorded and transcribed verbatim. For the</p><p>interview, which was not tape-recorded, words and</p><p>phrases were noted and a summary written immediately</p><p>afterwards. Interviews conducted before intervention last-</p><p>ed 1350 min (average 35 min) and those after 1026 min</p><p>(average 16 min).</p><p>The before-interviews focused on daily life events. The</p><p>interviewee was asked to describe an ordinary day and</p><p>questions were asked on what he or she could manage him</p><p>or herself, easy and difcult tasks, experiences of daily life</p><p>problems and the things they found important to manage</p><p>on their own.</p><p>The after-interview focused on changes in self-care</p><p>ability experienced during the intervention and experi-</p><p>ences of wearing and handling the cooling-suit. The</p><p>participants in the study described advantages and dis-</p><p>advantages connected with the cooling-suit.</p><p>DiaryDuring one intervention week each study participant</p><p>noted their events and experiences every day in a semi-</p><p>structured diary (Polit &amp; Hungler 1993). They described</p><p>the weather, outdoor temperature, their condition (e.g.</p><p>symptoms, self-care ability and well-being) before and</p><p>after cooling and also preparatory activities for the cool-</p><p>ing-period. They also briey described their experiences</p><p>of advantages and disadvantages during and after each use</p><p>of the cooling-suit.</p><p>Data analysis</p><p>Data from all three sources were treated in a single case-</p><p>control manner. The MS Self-Care ADL Scale was</p><p>analysed with regard to increase or decrease of self-care</p><p>ability after intervention (Gulick 1988a). The self-assessed</p><p>score was summated and a difference score calculated. A</p><p>summary of the transcribed interviews was returned to</p><p>each study participant for corrections (Taylor &amp; Bogdan</p><p>1984). This summary was then used as the basis of an</p><p>analysis of self-care ability and problems in relation to</p><p>activities in daily life as well as advantages and disad-</p><p>vantages of the use of the cooling-suit. The diaries were</p><p>analysed in the same way. To validate the ndings, results</p><p>from the three different data sources were compared by</p><p>method triangulation (Polit &amp; Hungler 1993).</p><p>RESULTS</p><p>Each person included in the study was given a ctitious</p><p>name in alphabetical order. By means of these, each</p><p>person may be identied and followed in the intervention,</p><p>self-assessment, interviews and diary notes. The ndings</p><p>are described under three headings: intervention, self-</p><p>assessed changes and practical implications for daily life.</p><p>Intervention</p><p>The use of the cooling-suit is presented in Table 4. The</p><p>duration of each intervention varied and lasted from four</p><p>to 25 weeks. Outdoor temperature varied from )14C to30C (6885F).</p><p>Experiences of wearing the cooling-suit are described in</p><p>terms of well-being and comments on the cooling-suit.</p><p>Well-beingIncreased well-being was reported in terms of a pleasant</p><p>feeling. One of the 10 study participants found the suit</p><p>unpleasantly cold.</p><p>Pleasant and comfortable Nine people described theirgeneral impress...</p></li></ul>