I S S U E S A N D IN N O V A T I O N S I N N U R S I N G P R A C T I C E Coping with menstruation: understanding the needs of women with Parkinson’s disease Debbie Tolson BSc MSc PhD RGN Professor of Gerontological Nursing, School of Nursing, Midwifery and Community Health, Glasgow Caledonian University, Glasgow, UK Valerie Fleming BA MA PhD RM RGN Professor of Midwifery, School of Nursing, Midwifery and Community Health, Glasgow Caledonian University, Glasgow, UK and Elgin Schartau Mlitt RGN DN RM Senior Lecturer, School of Nursing, Midwifery and Community Health, Glasgow Caledonian University, Glasgow, UK Submitted for publication 17 April 2002 Accepted for publication 5 September 2002 Correspondence: Debbie Tolson, School of Nursing, Midwifery and Community Health, Glasgow Caledonian University, Cowcaddens Road, Glasgow G4 OBA, UK. E-mail: d.tolson@gcal.ac.uk T O L S O N D ., F L E M I N G V . & S C H A R T A U E . ( 2 0 0 2 ) Journal of Advanced Nursing 40(5), 513–521 Coping with menstruation: understanding the needs of women with Parkinson’s disease Aims. To understand how women with Parkinson’s disease (PD) experience and cope with menstruation and associated gynaecological problems, and adjustments to womanhood. This paper focuses on menstruation. Rationale. Unique hormonal fluctuations are known to affect women with idiopathic PD, however, our understanding of the impact of these changes on daily lives and opportunities for nursing support are limited. Methods. Descriptive multiple case study design was adopted, and data collection involved a variety of approaches. Including semi-structured interviews, conversational interviews, group interview, reflective diaries and creative writing. A flexible approach was encouraged whereby consenting women chose how and when they wanted to participate. Findings. A total of 19 women participated, 17 were experiencing naturally occurring periods. The majority had been diagnosed around the age of 39 years, and at the time of study participants ages ranged from 34 to 56 years. Three of the women reported no change in the experience of their periods following diagnosis, 15 reported worsening problems which in two extreme situations led to hysterectomy. During the monthly cycle PD symptoms were often exaggerated, medication effectiveness reduced and ‘off times’ increased. The period itself involved high levels of pain, fatigue and sometimes humiliating experiences when self-care was impossible. Conclusions. This study offers a unique contribution to our understanding of the needs of young women with PD, and suggests that health professionals need to look beyond the mask of a disease associated with old age. The nursing profession has a responsibility to develop models of best practice to enable women of any age to be themselves and to adapt to the rhythm of their hormones as they live and grow older with PD. Keywords: Parkinson’s disease, menstruation, women, nursing, case study
2002 Blackwell Science Ltd 513 D. Tolson et al. Introduction Background The syndrome of changes associated with idiopathic Parkinson’s disease (PD) (Bulpitt et al. 1985), often give rise to major health problems, which require individuals to make social and personal adjustments. Parkinson’s disease is commonly associated with old age, because prevalence rates accelerate in people aged 60 years and over (De Rijk et al. 2000). Regardless of the age of onset, it is important that consideration is given to normal age related challenges and experiences that coexist with chronic disease. For women, important age related occurrences include the menstrual cycle, which symbolizes fertility and biological youth, and the menopause linked to maturity. Evidence is accumulating that unique hormonal fluctuations affect both pre- and post-menopausal women with PD. The mechanisms involved are not fully understood (Quinn & Marsden 1986) and consequently medical management, and in turn nursing care is informed by an incomplete knowledge base (Saunders-Pullman et al. 1999). Although PD has stimulated much medically and treatment focused research, Abudi et al. (1997) remind us that we must balance medical advances in knowledge by developing our understanding of how people experience the impact of their symptoms on everyday living. The importance of understanding health related quality of life issues is recognized within the ongoing Global Parkinson’s Disease Survey (WHO 1998). This paper selectively reports the findings of an in-depth exploration of the experiences of women with PD in relation to womanhood, menstruation and related gynaecological problems (Tolson et al. 2001). The piece focuses on the dayto-day challenges associated with menstruation, the potential of nursing to support individuals and the need to disseminate best practice knowledge. The size of the problem There are few reliable data of global prevalence or morbidity of PD in Europe, overall prevalence is estimated to be 1Æ6 per population (WHO 1998). The European prevalence in persons aged 65 years and above is estimated at 1Æ8 (per 100 population) rising to 2Æ6 for those aged 85–89 years (de Rijk et al. 2000). Although it is clear the size of the affected population escalates with advancing age Anderson et al. (1998) remind us that comparison between studies is often limited because of variations in diagnostic criteria. This is a particular problem when comparing global prevalence rates of idopathic PD among younger people between countries (Mutch et al. 1986). The UK figures indicate that PD affects 1 in 500 people in the general population, rising to 1 in 100 in the population aged over 65 years and 1 in 50 people aged over 80 years (Parkinson’s Disease Society [PDS] 2001). Possen et al. (2001) claim that 5–10% of the population are affected before the age of 40 years, however, findings of a London-based survey by Schrag et al. (2000) suggests this may be an over estimation. In Scotland, the total population of women with PD is currently estimated to be 105, 20 are between the ages of 25–65 years (Information Statistics Division [ISD] 2001). Literature search methodology The search strategy commenced with scanning the following databases, Medline, CINAHL, Biomed, Amed, BIDS and Cambridge Scientific Abstracts using combinations of key words (PD, chronic disease, women, younger women, prevalence, epidemiology, hormones, periods, menstruation, menopause, nursing). This search yielded a large volume of medical and pharmacological papers. Internet searches located several interesting sites including a European Drug Site (http://www.shef.ac.uk/misc/groups/epda/aim.htm), and an education site for United Kingdom (UK) users (http:// www.parkinson.org/pdedu.htm). Hand searchers were undertaken of newsletters, and other Parksinon’s Disease Society ‘grey literature’. 514 The UK Services for adults people with Parkinson’s disease The care of people with PD is recognized to be a multidisciplinary concern, although the contribution of medicine and drug management dominates literature (Thomas & MacMahon 1999). Primary Care Physicians are the gatekeepers to specialist neurological services, and in the UK concerns have been raised about low rates of specialist referral for older patients (Glasgow Herald 2001). No literature about referral patterns for younger female patients was located. The role of specialist nurses is increasingly recognized within the UK (Noble 1998), and it is usual that the Physician initiates referral. In Scotland, the number of PD Specialist Nurses is currently 11, with a small number of these nurses working within developed roles in which they are both able to make and receive direct referrals for selected aspects of care without the involvement of a physician (Tolson & West 1999). In Scotland, young women with PD may receive support from a variety of groups including doctors, specialist nurses, movement disorder specialists and PDS welfare officers. Focus on women and menstruation Throughout history menstruation has developed its own peculiar, culturally determined symbolism (Vollman 1977, Coutinho & Segal 1999, Laws 1990). Although, many
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521 Menstruation: the needs of women with Parkinson’s disease Issues and innovations in nursing practice generalizations can be made about menstruation, it has long been recognized that a woman’s reproductive function responds to an individual template, embedded in an intricate feedback system. Research into hormonal influences on PD is inconclusive (Quinn & Marsden 1986, Session et al. 1994, Behl & Holsboer 1999, Kompoliti et al. 2000) and surprisingly little work has been reported that explores the personal dimension and care implications of the experiences of women. Factor (1993) reported a pharmocology orientated case study of a 38-year-old woman with perimenstrual worsening of PD symptoms who derived some benefit from treatment with acetazolomide. A medically focused survey of 352 American women with PD and naturally occurring cycles concluded that hormonally mediated changes in PD are a common and important problem (Thulin et al. 1996). Thulin et al. reports that for a quarter of each woman’s cycle that she can expect to experience a deterioration in PD symptoms and medication effectiveness. Perimenstrual deterioration and postmenstrual improvement is reported in an unpublished UK survey by Roy (1999). Although the research literature does not capture the dayto-day implications of these pathophysiological changes anecdotal evidence does offer insight. For example, letters published by women, descriptions of single cases (Simmons 1997) and the stories shared by counsellors convey a distressing set of problems. More objective research concerning lower urinary tract function has incidentally identified menstruation management to be problematic for women with PD (Gray et al. 1995), as have studies investigating sexual dysfunction (Brown et al. 1990). The study Study aim The study aim was to understand how women with PD experience and cope with menstruation and associated gynaecological problems, and adjustments to womanhood. This paper focuses on menstruation. Methods Design Because of the sensitivity and personal nature of the topic, in-depth case studies were identified to be the method of choice. The descriptive approach to case study was selected, as it allows data to be collected from as many sources as are considered appropriate to provide in-depth information (Woods & Catanzaro 1988). Yin (1994) suggests that case studies can stand alone (e.g. a single case study) or that multiple case studies can be examined for similarities and differences. Both interpretations are appealing, and we undertook a combination of cross case comparisons and exploration of unique phenomena. Sample recruitment A networking approach was used to identify potential participants from four outpatient clinics and 218 General Practices located in Central Scotland. Parkinson’s Disease Nurses and Welfare officers from the PDS were also asked to circulate information packs to contacts in Scotland and Northern England. Snowball sampling by participants was also encouraged because of the taboos surrounding the topic, and this was found to be the most successful approach (Delamont 1992). Once a potential participant was identified, further information was sent about the study. Those who felt able to participate arranged a convenient time and venue to meet with the female Research Assistant. A consent form was signed, and the woman was requested to consider how she would like to participate. Suggested approaches included semi-structured or conversational style individual interviews, group interviews, reflective diaries and or creative writing. All but one of the woman chose individual interviews, nine taking part in second interviews. Two women were interviewed in the presence of their husband, one suggested that her PD nurse be interviewed. Two friends selected a group interview, four provided diaries (although six had agreed to keep them), two poems, three newsletters, two newspaper cuttings and two books were received. One participant who lived a distance from the study centre, and entered the study relatively late, chose to record her story on audio-cassette tape. Sample A total of 20 women were identified over a period of 6 months, one woman declined, as she felt unable to undertake interview. The remaining 19 fulfilled the inclusion criteria (confirmed diagnosis of PD, current or recent experience of naturally occurring periods) and agreed to participate. A 95% response rate was achieved, which was surprising given the intimate nature of the topic. One woman participated by providing a poem but requested that descriptive information was not reported, hence unless otherwise stated the tables include data from 18 women. The majority of the sample women had been diagnosed with PD around the age of 39 years. Most had lived for some years with early signs and symptoms prior to diagnosis. The earliest age of diagnosis was 18 years, and at the time of interview this women had 27 years experience of the disease.
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521 515 D. Tolson et al. Two women were included who had had hysterectomies, one over 10 years prior to interview and the other within 2 years of the interview. The decision to include them was partly taken because of a slow initial recruitment rate and partly because it was felt that their experiences would be illuminating. The remaining 17 women had naturally occurring periods. The ages of the participants ranged from 34 to 56 years; mean age 47 years. Ethical considerations Approval for the study was obtained from the University Ethics Committee and relevant Acute and Primary Trust Ethics Committees. Potential participants were provided with written information, and invited to contact the Research Assistant by phone, letter or e-mail. If the woman considered that she was eligible and potentially able to participate she received further information. All participants were requested to sign a consent form, and reassured that they might change their minds at any time without redress. At the start of each interview verbal reaffirmation of consent to the use of a tape recorder was requested. Participants were invited to ask that the tape be switched off if at anytime they felt uncomfortable with recording. On completion tapes, diaries and original written submissions were returned, archived or destroyed as requested. Consent to quotation and use of specific pieces of creative writing during reporting and dissemination was also obtained. The provisions of the 1998 Data Protection Act were observed. Data analysis strategy: focus on menstrual issues A member of the research team read each case, particularly looking for data related to menstruation. Relevant data were grouped together on a grid so that patterns and contradictions could be easily seen between participants (Miles & Huberman 1994). In keeping with Yin’s (1994) strategy each case was then analysed separately. One member of the research team read all data pertaining to each case, searching for themes, patterns and contradictions within the case. Cross case comparisons were sought and where multiple data sources were available for individuals these to were compared in the quest for completeness (Yin 1994). Several strategies were employed to promote the integration and verification of data from different sources at both the group and individual level. These included: • the development and cross examination of findings using case summaries and simple data matrices, • the identification of an individual’s consistency of message, 516 • mapping of the style of expression and use of metaphor during content analysis, • the reading and analysis of the interviews by each member of the research team and the discussion of meanings therein. Findings The major sources of information about menstrual experiences were the individual interviews and reflective diaries. Creative writing also provided rich data, and this section starts with consideration of a poem. A single case: a single poem In terms of case study design it is recognized that this case is incomplete given that the poem is the sole data source (Yin 1994). However, this poem serves to illustrate what can be learned about an individual through an isolated piece of creative writing. I am writing this poem to you today, Because I’d like to help in any way. I have Parkinson’s, don’t know the cause. But sure doesn’t like my menopause. Most of the time I manage very well, Considering I’ve had it for a seven year spell. Then the time of the month comes along again, I’ve finished my period, but the feelings remain. Sometimes I’m slow and need a push, My tablets don’t work, and I’m rather flushed. I can’t turn over in bed at night, But I never lose my appetite. I’m giving HRT a go to see, If my hormones will settle down in me. I’d be pleased to help in any way, To meet with others who feel this way. I’ll battle on, fight Parky everyday. God give me strength till cure comes our way. Analysis of the poem At first sight this poem may appear to be optimistic, with a falsely bright rhythm. However, embedded within the language is a complex message depicting a state of inner turmoil. This distressing and sometimes contradictory presentation of opposing emotions (e.g. coping and despair) is typical of all of the participant’s style of expression. Knowing the cause of PD and finding the answer to the question of ‘why me’ seems to be important, suggesting that she is clutching on to a vague hope that somehow this knowledge will help her.
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521 Menstruation: the needs of women with Parkinson’s disease Issues and innovations in nursing practice She splits and tries to distance herself from the disease. ‘Parky’ is symbolized as an object to do battle with and fight. It is something to be rejected and pushed away, and yet she rationalizes that without a medical breakthrough this will not happen. Her hope and rejection of ownership of the disease somehow shields her. Parkinson’s disease does not belong to her, but conversely she does feel that the PD tablets are hers: they are her weapon against the intruder. Her poem has many features and similarities with the descriptions shared by other women, in particular with similarities in the use of metaphor, reveals that psychological adjustment has not been achieved and that she copes by splitting away from this chronic disease (Diamond 2001). Cross case comparisons Influence of Parkinson’s disease on menstruation Three of 18 women reported that there had been no change in their periods since the onset of PD. The 15 others all reported a worsening of their menses, in two cases resulting in hysterectomy. In an attempt to locate patterns and estimate the magnitude of worsening a judgmental scaling system of the severity of period problems was generated from the data. It is important to note that this scale was created to identify patterns of reporting that relied on recall and it is not intended to be interpreted as an absolute measure. The following scoring system was applied to descriptions of periods before and after the onset of PD provided during interviews: 1 ¼ normal period, no problems 2 ¼ pre-menstrual tension only problem 3 ¼ period fairly heavy 4 ¼ heavy 5 ¼ very heavy 6 ¼ worse than very heavy but less than severe 7 ¼ severe problems A score of 1 indicates that the period was perceived to be normal and not a problem, at the other end of the scale the period was severe and perceived to be a major problem for the woman. Figure 1 shows a bar chart of the scores derived for 18 participants, comparing descriptions (scores) before PD and after onset. On average the women scored 3 points higher on the severity scale after the onset of PD. The four women who experienced the greatest level of change in their periods, from normal-no problems to severe problems (1 increasing to 7) were among the youngest at the time of disease onset. Mindful of the potential for measurement error, it appears that none of the women experienced a lessening of existing period problems. This finding contrasts with Roy’s survey response, where one or two women indicted a positive benefit and improvement in their experience of menstruation (Roy 1999). One woman who previously had not had problems with her periods said …but I dread it, I dread menstruation, I dread the week before and the actual first day. It is really horrendous. (M/1/22) In the next extract a woman explained how her periods had worsened, note how she waits for the pain killers to ‘kick in’. Well, worse, it was just you know, I’m just lying on the bed absolutely groaning, taking a couple of pain killers and praying for them to kick in because in the middle of the night I would be up at least once in the night to change. I can be very heavy at the beginning and then it just trails away as quickly as it came on heavy. (D/1/7). The heaviness of the flow is a common complaint and the terms of expression suggest an intensity of experience that is difficult to endure, for example, ‘you feel as though you are draining away’. (H/1/1) Diaries highlighted levels of fatigue not described during interview. Women felt unable to think beyond ‘getting through’ their period. On the first day or two of menstruation it appears to totally dominate them, physically they are very disabled, feel wretched and describe a total absence of energy. Gradually they recover, but their month is punctuated with anticipation of these few days and the cyclical pattern. Figure 1 Severity of problems pre- and postonset of PD. Series 1 ¼ pre-PD; series 2 ¼ postonset (with PD). Participant 1–18, equates to A–R as shown in quotes.
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521 517 D. Tolson et al. Influence of menstruation on Parkinson’s disease Our data supports existing evidence that certain phases of the menstrual cycle appear to exaggerate PD related problems: 3 Pain management; 4 Night time difficulties of changing sanitary protection; 5 Loss of independence; The problems are summarized in Table 1. Greater insight may be gained from these personal difficulties Oh definitely, the week before and sometimes used to get maybe like a, my face would go a bit numb, the left side of my face would go a bit numb. (F/1/15) I mean I’d maybe flood, by the time I got to a toilet I was a bit of a I can have a couple of days in the month, usually just about a week or mess, you know, even with, you know. I use towels and because of so before where I feel really good, really high, my Parkinson’s doesn’t my mobility was bad at the time, the actual effort of getting my bother me physically as much or mentally. Then I really plunge, for trousers down to change myself, these things take hours, they take a you know, a week before you’ve got the menstrual symptoms that long time, to go and the towel, to wash myself, etc., etc. (J/1/24) accentuate what you have with the Parkinson’s, I…you get relief when you take your period and feel tired for a few days and then go And when I had my period, if I was having a bad day, he (husband) back into the cycle again. (J/2/1) had to help me and that wasn’t very nice…and sometimes I would leave a pad behind because I’d drop it sort of thing and couldn’t get it The day I start a period, well, I can’t do anything. I don’t go to bed picked up. So he didn’t like that aspect, which I understood. (K/1/2) but I might as well because I just can’t do anything. I look dreadful, I Although K did not dwell on these difficulties the interview with her PD nurse gave insight into the humiliating consequences of not being able to mobilize when she needed. The desire to maintain independence was strong. Unfortunately, on some occasions there seemed to be no alternative but to accept the help of another person, which had a detrimental effect on intimate relations. Only one woman had knowledge of aids to promote independence which she had identified herself, none had requested or received advice from health professionals on problems associated with selfcare during menstruation. feel dreadful, my movement all but stops. (M/1/22) Practicalities of self-care self-care and personal hygiene issues during menstruation are taboo subjects that few women discuss. These aspects are intimate, personal and embarrassing (Laws 1990). The practical problems described by our sample fall into five main areas: 1 Problems associated with the containment of heavy blood loss; 2 Dexterity problems and the use of sanitary protection; Table 1 A summary of practical problems associated with menstruation Problem Number women reporting problem Containment of flow 13 Comment Many try to use combinations of tampons and towels, or double padding. Leakage onto chairs and other furniture was most upsetting. Finding adequate night-time protection was particularly difficult. Slowness of movement limits self-care. Dexterity problems 8 Manipulation of sanitary products can be very difficult and at times impossible. Dropping of towels and tampons, particularly used items, is distressing. Difficulty with adjusting clothing when trying to use protection was a source of frustration and fatigue. Pain management 7 Painful, heavy, cramping periods were reported. Most women used over the counter analgesics in combination with rest, one took Evening Primrose Oil and one increased her fruit intake prior to her period. Nigh-time difficulties 5 Difficulties in self-care were exaggerated at night as PD drugs ‘tail off’ and mobility problems increase. Pads often required to be changed and fear of leakage resulted in a restless night. Loss of independence 3 Husbands assisted three women to change sanitary protection, two others described how they struggled, appalled with the idea of their husbands helping. 518
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521 Menstruation: the needs of women with Parkinson’s disease Issues and innovations in nursing practice Reactions of doctors Five of the woman who had reported severe dysmenorrhoea, prolonged ‘off times’ and ‘medication failure’ considered that their doctors did not take their problems seriously. Some rationalized that doctors did not know how to help them and responded by ignoring the problem. Most accused male doctors of normalizing period problems as part of womanhood: I found that when I had my periods my pills didn’t work the same although the neurologist said that was a load of bull, but I don’t think it was, I think it reacted with the tablets. (K/1/6) …because he rarely treats people that are still having periods with Parkinson’s, he doesn’t really know very much about it. and it was something that I was just going to have to learn to live with as part of my disease. Not a lot of help there! (B/1/24) One participant was receiving the support of her GP to experiment with her medication levels in an attempt to improve experiences during her period, this was described positively in terms of her empowerment. Only two women had discussed their problems with their female PD Nurse, describing the nurse as a ‘shoulder to cry on’ rather than as a professional who would be able to help in more tangible ways. Discussion The majority (83%) of the women associated the onset of PD with a worsening of menstrual problems. Previous studies such as Quinn and Marsden (1986), Thulin et al. (1996) and Kompoliti (2000), focus on the consequence of oestrogen and progesterone changes on PD. It is understandable that the majority of PD research adopts this disease focused gaze, as the quest for cure is the ultimate aim. However, this stance has distracted attention from focusing on the person and wider aspects of their ageing and related health. The expressive language used by many of the women in our small study suggests that such a disease orientation misses an essential point: that they are individual women who happen to have PD. They have not become the disease although they have no option but to live and age with it. It is of concern that over half of the women (n ¼ 11) experienced considerable worsening of their period problems, five stating that doctors did not take their problems seriously. There was only one example of a woman being empowered to identify a personal and hormonally responsive treatment regime. The remainder of the women failed to report their problems and anticipation of a negative or non-response may deter some women from reporting in the first place. The perceived lack of interest among some physicians when problems were reported is worrying and may be because of a combination of factors. Embarrassment may lead the woman to minimize the problems she describes; hence the doctor may not appreciate the impact of the problem. The possibility that some men and women in positions of authority behave oppressively when dealing with issues of menstruation cannot be discounted (Laws 1990). Nor can the tendency of some practitioners to delegitimize the knowledge and experience of people who live with chronic disease (Paterson 2001). Ignorance of care solutions and a lack of sensitivity towards the needs of young (premenopausal) women with PD may be contributory factors. It was perplexing that PD nurses, all female, were not seen as a potential source of real help but only a sympathetic ear. Our data do not illuminate this issue other than to hint towards the fact that possibly women sense that the nurse is conceptualizing their care needs in the same way that they do older people with PD. Thus the actual stage in the women’s life course is not a central issue, and in effect the nurse possibly and prematurely projects her into a later stage of life normally associated with a dependent old age. If this hunch suggesting a type of inappropriate and premature ageism or stereotyping is correct, then it would make an interesting investigation in its own right. Bernard (1998) explores the relationship between women caring for other women in respect to ageing and old age offers a useful orientation to the debate. She contends that there is discomfort in seeing an image of your own ageing process reflected in the face of a patient or may be, as one woman commented, the loss of facial muscle control gives the look and lifelessness of an old woman. Perhaps then the PD nurse unconsciously distances herself from women with PD who are close in chronological age to themselves and yet restricted by a chronic disease that the nurse associates with the mask of old age (Nijhof 1995). Hence, menstruation which symbolizes biological youth is not in the fore of the nurse’s mind. If the woman senses this distancing then this may act as a deterrent to the disclosure of an intimate and embarrassing problem (Williams 2001). Study limitations Our sample of women includes 16 from Scotland and three from England. There is no reason to believe that the sample is systematically biased, in fact for Scotland 80% of the total premenopausal population of PD women have participated. In the absence of comparative data we suggest that the physical experiences reported by our participants may typify those of younger women with PD. Indeed each participant’s
2002 Blackwell Science Ltd, Journal of Advanced Nursing, 40(5), 513–521 519 D. Tolson et al. story resonates well with existing medical and pharmacological knowledge. However, it should be noted that our sample comprised women of only Caucasian origin and it is recognized that the perceptions and narratives of women from different cultures may be at variance with our data. Because of time constraints, dictated by resources, theoretical saturation cannot be claimed, although no new data seemed forthcoming. It is recognized that had we been able to continue our dialogue further information might have been uncovered. However, as Charmaz (1995) notes, many people do not want to reveal themselves in totality, and we suspect that in some cases the women had shared as much as they felt able to about this personal subject. The diaries and creative writing illuminated perspectives that were not discovered during interview. This highlights the merits of triangulation, flexibility and adopting strategies to empower participants to tell their stories in their own way. In progressing our work it may be helpful to consider additional aesthetic approaches, such as creative arts to facilitate story telling (Leight 2002). Implications for nursing practice Needs associated with menstruation should be addressed proactively for women with PD. During the ‘diagnostic stage’ of care (MacMahon & Thomas 1998), premenopausal women should receive literature with sensitively detailed information about known problems and care options. The provision of information will reassure and empower women to make informed choices. Medication effectiveness should be considered and monitored over the monthly cycle and women should be given information to help them to participate in decisions concerning drug regimes. Further research is warranted in this area, in particular we would encourage research to examine how ‘off times’ can be limited during menstruation to enable selfcare both during the day and throughout the night. Expert assessment should be undertaken in relation to selfcare abilities, and interventions to promote independence and dignity should be offered. In particular concerning dressing and adjustment of clothing, use of toilets and sanitary protection. The potential of the PD nurse to offer expert care should be considered along with the potential contribution of other specialists. Women who report an increase in the volume of blood loss during their periods or prolonged menstruation should be monitored for signs of anaemia and treated accordingly, and given advice on management of fatigue and diet. Strategies should be developed to promote a greater awareness among health professionals of the difficulties faced 520 by some young women with PD. Professional networking and strategies to enable the sharing of best practice, which reflects the voice of women, should be encouraged. Given the relatively low number of women across the country this may be facilitated by adopting a similar model to that of the Scottish Demonstration Project currently being piloted at Glasgow Caledonian University (Schofield et al. 2002). This work promotes the pooling of expertise to delineate evidencebased best practice statements, which are developed in partnership with users and disseminated in a variety of paper and internet formats for users and professionals. Conclusion This study offers one of the few contributions which examines menstruation among women with PD from the perspective of their day-to-day experiences. We have demonstrated that a worsening perception of period problems is common and their lives are dominated by the cyclical pattern of their hormones, emotional exhaustion, physical fatigue, pain, difficulties in self-care during menstruation and a worsening of PD symptoms. Difficulties associated with menstruation are more likely to be identified through nonageist, person- and health-centred approaches to nursing which are informed by best practice guidance. In this way nurses will be more likely to offer appropriate therapeutic support to young woman with PD and continue this support through menopause and beyond. In other words let us not accept the status quo which prompted one women, a young mother and a wife to write, ‘I am made to feel like an old age pensioner in all but name.’ (Participant A. Book 1Æ7Æ7). Instead let us strive towards an enabling model of care which allows women of any age to be themselves as they are now, and as they age with this debilitating chronic disease. Acknowledgements The Parkinson’s Disease Society funded this study and we thank them for their financial support and advice. Our sincere thanks are extended to each of the women who shared their stories and to everyone who assisted us to make contact with potential participants. References Abudi S., Bar-Tal Y., Ziv L. & Fish M. (1997) Parkinson’s disease symptoms-patient’s perceptions. Journal of Advanced Nursing 25, 54–59. Anderson D.W., Rocca W.A., de Rijk M.C., Grigoletto F., Melcon M.O., Breteler M.M. & Maraganore D.M. (1998) Case ascer-
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