Sage Journals: Discover world-class research

Abstract

Women and men with multiple sclerosis (MS) experience different disease courses and occurring symptoms. These lead to different gender-specific needs. However, gender-specific needs are often elusive for nurses and therefore difficult to address in daily care. Thus, our aim is to describe gender-specific needs of people with MS. A scoping review was conducted, covering papers published between 1999 and 2019. Overall, 26 studies were identified, and a deductive coding process was applied based on Henderson's Nursing Need Theory. The PRISMA-ScR checklist was used to write the scoping review. Different needs of female and male patients with MS are described in eight categories of Henderson’s Nursing Need Theory, occurring in mobility and elimination. The analysis shows differences in communication about the disease, individual needs, and the acceptance of support. To address these differences, training on gender-sensitive care should be offered in nursing education and for nurses.

Keywords

gender-specific needs multiple sclerosis nursing

Introduction

Multiple sclerosis (MS) is a chronic, neurodegenerative disease with a progressive course. Due to the disease, demyelization occurs in the central nervous system.¹ Genetic and environmental factors are suspected to cause the autoimmune disease processes in the myelin of the neurons.² Worldwide, 2.8 million people are diagnosed with MS,² and women are twice as likely as men to develop MS,^1,2 although there are countries where the ratio of women to men is 4:1.² Overall, MS is diagnosed between the ages of 20 and 40 years.¹

MS can progress in different ways. A distinction is made between the primary progressive course, the secondary progressive course, the benign course, and the relapsing-remitting course.¹ As different as the course of the disease can be, so are the symptoms. MS affects a person's cognitive and physical functions as well as emotional areas. Common symptom complexes include pain, fatigue, depression, sleep disturbances, and cognitive impairments.³ In addition, however, visual disturbances, balance disorders, incontinence, or paresthesia may also indicate MS.⁴ Depending on the course of the disease, physical, cognitive, mental, and social restraints and changes may occur which have no clinical relevance but have an impact on the daily lives of those affected.⁵ However, from our point of view, it is not known whether women and men also have different needs in terms of care, therapy, and support due to the different course of the disease or their gender. In particular, caring for people with MS requires knowledge of the different courses of the disease. Nurses take a special role here.⁶

In order to explore gender-related differences, health professionals need to differentiate between ‘sex’ and ‘gender’, two terms which may not be used interchangeably.⁷ ‘In general, sex refers to the biological, genetic […] and physiological processes related to sexual beings’.⁷ Miller⁸ describes sex as a dichotomous variable, ‘whereas gender refers to the roles, relationships, and relative power that people relate to or societies generally attribute to women and men, irrespective of their genetic make-up’. Gender cannot be considered a dichotomous variable but a multi-dimensional component of an individual's identity.⁸ Hence, sex and gender cannot be separated due to their multi-dimensionality, entanglement, and interactivity.⁷ Therefore, in professional caring situations, gender aspects, as well as biological factors, should be considered major prerequisites for gender-sensitive healthcare.⁹ After all, it is the task of nurses to assist the patient where she or he lacks the motivation, knowledge or strength to meet personal human needs independently.¹⁰ Therefore, Henderson’s Nursing Need Theory was chosen, which defines 14 human needs that correspond to basic nursing care and are used by nurses to plan their patients’ individual care.¹⁰ Furthermore, Henderson has mentioned spiritual and cognitive dimensions to people's basic physical needs.¹¹ However, gender-specific needs are often elusive for nurses and therefore difficult to address in daily care. Thus, our aim was to identify differences between female and male patients regarding the experience of illness and needs related to MS with respect to Henderson's Nursing Need Theory.¹¹

Methods

A scoping review was conducted as, in contrast to a systematic review, both quantitative and qualitative studies can be considered. This can help to identify a research gap in the literature on a specific topic.¹² To ensure the quality of this scoping review, the PRISMA-ScR checklist¹³ was used. A review protocol is available by contacting the first author.¹³

The present scoping review is structured according to the six steps of the Arksey and O’Malley methodological framework.¹² Based on this methodological framework,¹² the following research question was formulated as a first step after a quick review of the literature:¹⁴

How do female and male patients with multiple sclerosis experience the disease and their MS-related needs with respect to Henderson's Nursing Need Theory?¹¹

As a second step,¹² a structured systematic literature review was conducted by the first author in the databases Academic Search Elite, CINAHL complete®, Medline, LIVIVO, PsycINFO, and the Cochrane Library. An additional manual literature search was conducted by the first and second authors in the Elsevier database and using the berry picking method.¹⁵ Identification, selection, and critical appraisal of the studies was carried out according to the steps of conducting a scoping review by Tricco et al.¹³ (Figure 1).

Figure 1.

Flowchart – Literature search process.

The following search terms were used: multiple sclerosis, nursing, care, gender, gender identity, femininity, masculinity, sexism, sexual, experience, sex characteristics, gender differences, and gender sensitive. Inclusion was limited to studies published between 1999 and 2019, as studies published before the period did not include answers to the research question about the experience of MS. Further inclusion criteria were: gender-sensitive care for people with MS, description of gender-specific needs of the affected and nursing interventions for people with MS. Transgender individuals were not included in this scoping review.^12,13 Studies from evidence level II were considered, so that a comprehensive view of the existing literature could be ensured. Since gender-sensitive care could not be explicitly identified in the existing literature, all four authors collectively decided that studies that considered the experiences of those affected and their quality of life would be included in the scoping review.^12,13 This is intended to highlight the special needs of people with MS, which are particularly triggered by symptoms of MS and influence the quality of life and experience of the disease. However, 275 studies were identified. In a third step,¹² after the exclusion of duplicates, 260 studies were subjected to further processing. Based on the titles and abstracts, 186 studies could be excluded. After reading 74 full papers, 27 studies were excluded. Reasons for the exclusion of studies were e.g. main focus on family caregivers of people with MS and their development of coping strategies within their partnership, coping strategies within the family in which one parent suffers from a chronic illness, or participants were home residents with MS and dementia.^16,17 In a fourth step, the full texts of 47 studies were assessed critically¹³ using the CASP checklists¹⁸ and summarized in the form of a table. Based on this critical appraisal, 17 studies were excluded. Subsequently, the results of the studies were assigned to the categories of Henderson's Nursing Need Theory¹¹ by the first author using content analysis.¹⁹ This categorization was discussed and finalized by the first author together with the co-authors.

The content analysis¹⁹ was conducted in the following steps: first, the result part of the study was carefully read. All information about needs of the affected were extracted, marked, and coded deductively¹⁹ using Henderson’s Nursing Need Theory.¹¹ In a second step, all categories¹⁹ in which the data reveal differences between women and men regarding their experience of the disease and their MS-related needs were aggregated, analyzed and described. The software MAXQDA Plus 2020 (Release 20.4.0) was used for analyzing the included studies. During deductive coding, four more studies were excluded. Exclusion criteria were the presentation of the long-term course of daily functioning during the course of the disease and the focus on changes in the sexuality of the affected persons. Thus, 26 studies were included in this scoping review¹³ in a fifth step¹² (Figure 1, Table 1).

Table 1.

Overview of the included studies.

Authors, year, country	Study design	Sample	Results with respect to Henderson's Nursing Need Theory
Anens et al.²¹ 2014, Sweden	Quantitative research approach – Cross-sectional cohort study	N = 287 female: 203; 70.7% male: 84; 29.3%	Move and maintain desirable postures Sleep and rest Avoid danger in the environment and avoid injuring others Communicate with others in expressing emotions, needs, fears, and opinions
Askari et al.⁴⁴ 2014, Iran	Quantitative research approach – Cross-sectional study	N = 180 female: 151; 83.89% male: 29; 16.11%	Communicate with others in expressing emotions, needs, fears, and opinions
Beiske et al.⁴⁰ 2008, Norway	Quantitative research approach	N = 140 female: 94; 67.1% male: 46; 32.9%	Sleep and rest Communicate with others in expressing emotions, needs, fears, and opinions
Jones et al.²⁸ 2014, United Kingdom	Qualitative research approach – semi-structured interviews Interpretative phenomenological analysis	N = 10 women	Move and maintain desirable postures Avoid danger in the environment and avoid injuring others Communicate with others in expressing emotions, needs, fears, and opinions Play or participate in various forms of recreation
Bogosian et al.²³ 2019, United Kingdom	Longitudinal qualitative research approach – semi-structured interviews at two time points	N = 21 at baseline female: 16; 72.3% male: 5; 23.7% N = 17 at follow-up	Move and maintain desirable postures Sleep and rest Eliminate body waste Avoid danger in the environment and avoid injuring others Communicate with others in expressing emotions, needs, fears, and opinions Play or participate in various forms of recreation Learn, discover, or satisfy the curiosity that leads to normal development and health
Celik et al.³⁷ 2013, Turkey	Quantitative research approach	N = 89 female: 44 male: 45	Eliminate body waste
Dahl et al.⁴¹ 2009, Norway	Quantitative research approach; comparative population-based study	N = 56,172 Intervention group: ○Female: 111 ○Male: 61 Control group: ○Female: 25,233 ○Male: 26,788	Sleep and rest Communicate with others in expressing emotions, needs, fears, and opinions
da Silva et al.³⁵ 2011, Portugal	Quantitative research approach	N = 508 Intervention group: 325 Control group: 183	Eliminate body waste Communicate with others in expressing emotions, needs, fears, and opinions
Demirkiran et al.³³ 2006, Turkey	Mixed-methods research approach; clinic-based study	N = 51 Female: 33 Male: 18	Sleep and rest Eliminate body waste
Domingo et al.³⁴ 2018, USA	Quantitative, descriptive research approach	N = 162 Female: 126; 77.8% Male: 36; 22.2%	Sleep and rest Communicate with others in expressing emotions, needs, fears, and opinions
Eastwood et al.³⁶ 2002, Australia	Qualitative research approach, secondary analysis	N = 8 Female: 4 Male: 4	Eliminate body waste Work in such a way that there is a sense of accomplishment
Fallahi-Khoshknab et al.²² 2014, Iran	Qualitative research approach	N = 25 Female: 18 Male: 7	Move and maintain desirable postures Avoid danger in the environment and avoid injuring others Communicate with others in expressing emotions, needs, fears, and opinions Work in such a way that there is a sense of accomplishment Learn, discover, or satisfy the curiosity that leads to normal development and health
Forbes et al.²⁹ 2006, United Kingdom	Quantitative research approach; cross-sectional postal survey	N = 927 Female: 640; 69% Male: 287; 31%	Sleep and rest Eliminate body waste Communicate with others in expressing emotions, needs, fears, and opinions Work in such a way that there is a sense of accomplishment Play or participate in various forms of recreation
Frost et al.³² 2017, United Kingdom	Qualitative research approach	N = 14 Female: 10 Male: 4	Sleep and rest Work in such a way that there is a sense of accomplishment Play or participate in various forms of recreation Learn, discover, or satisfy the curiosity that leads to normal development and health
Ghafari et al.⁴⁵ 2015, Iran	Qualitative research approach	N = 25 Female: 18 Male: 7	Work in such a way that there is a sense of accomplishment Play or participate in various forms of recreation
Kilic et al.⁴³ 2012, Turkey	Quantitative research approach; descriptive cross-sectional study	N = 45 Female: 23; 51.1% Male: 22; 48.9%	Communicate with others in expressing emotions, needs, fears, and opinions Learn, discover, or satisfy the curiosity that leads to normal development and health
Koch, Kelly, 1999,³⁸ Australia	Qualitative research approach, pilot study	N = 8 women	Eliminate body waste
Kralik et al.³⁹ 2003, Australia	Qualitative research approach	N = 12 women	Eliminate body waste Avoid danger in the environment and avoid injuring others Play or participate in various forms of recreation
Lex et al.⁴⁶ 2018, USA and Austria	Mixed methods research approach	N = 128 Female: 78 Male: 50	Play or participate in various forms of recreation Learn, discover, or satisfy the curiosity that leads to normal development and health
Ahmadi et al.⁴² 2018, Iran	Quantitative, descriptive-sectional research approach	N = 132 Female: 96; 72.8% Male: 36; 27.2%	Communicate with others in expressing emotions, needs, fears, and opinions
Newland et al.³¹ 2012, USA	Qualitative research approach; focus-group interviews	N = 16 Female: 12; 75% Male: 4; 25%	Sleep and rest Work in such a way that there is a sense of accomplishment
Olsson et al.²⁷ 2011, Sweden	Qualitative research approach; phenomenological hermeneutic interpretation	N = 15 women	Move and maintain desirable postures Avoid danger in the environment and avoid injuring others Communicate with others in expressing emotions, needs, fears, and opinions Play or participate in various forms of recreation
Olsson et al.²⁵ 2010, Sweden	Qualitative research approach; phenomenological hermeneutic interpretation	N = 15 women	Move and maintain desirable postures Avoid danger in the environment and avoid injuring others Play or participate in various forms of recreation
Olsson et al.³⁰ 2005, Sweden	Qualitative research approach; phenomenological hermeneutic interpretation	N = 10 women	Sleep and rest Play or participate in various forms of recreation
Parton et al.²⁴ 2019, Australia	qualitative research approach; semi-structured interviews	N = 20 women	Move and maintain desirable postures Avoid danger in the environment and avoid injuring others Communicate with others in expressing emotions, needs, fears, and opinions Work in such a way that there is a sense of accomplishment
van der Meide et al.²⁶ 2018, The Netherlands	Qualitative research approach; phenomenological research design	N = 13 women	Move and maintain desirable postures Sleep and rest Avoid danger in the environment and avoid injuring others Play or participate in various forms of recreation

This publication was written as part of an empirical study for which a positive vote by the Ethics Committee of the Medical University of Innsbruck was obtained. In addition, this scoping review conforms to good scientific practice, in the sense that it has not been published elsewhere and has been plagiarism checked by the first author prior to submission.

Results

Based on the literature search and the deductive approach, gender- and sex-specific results were identified for eight categories of Henderson's Nursing Need Theory¹¹ (Figure 2 – gray boxes). The needs of female and male patients with MS are highlighted in each category in relation to the different disease courses and symptoms.

Figure 2.

Categories in which differences were analyzed according to Henderson's need theory.^11,20

Move and maintain desirable postures

In contrast to women, men more often have a disease course that severely restricts their mobility, and their physical activity level is lower than in women.²¹ For example, only 6.4% of women cannot walk alone; men, however, are affected more often by this limitation (20.2%)²¹ and have higher scores on the fall-related self-efficacy scale than women. The fear of one day being confined to a wheelchair is great for many women and men at the time of diagnosis.²² However, no gender-specific differences are noted with regard to fear of falling.²¹

Female as well as male patients, who are in transition to secondary progressive MS, experience a deterioration of their mobility.²³ Due to physical limitations such as restricted mobility or fatigue, women cannot be the active mothers they would like to be.²⁴ Women with MS also describe fears of being judged by their environment. Others may mistake their symptoms, in particular problems with balance or coordination, for drunkenness. For mothers with MS, their children are a motivator to stay healthy and fit, do sports, and take their medication regularly.²⁴ Women with MS affirm that they feel well despite their disease as long as they can live their lives at their own pace and behave like healthy people.²⁵ Oftentimes women feel dissociated from their bodies, in particular when they want to move but their body does not. With advanced physical limitations, women increasingly feel socially excluded, for example, if they cannot attend leisure activities such as a concert because there is no area for wheelchair users.²⁶ For this reason, wheelchair-bound people plan their leisure activities very carefully and check in advance whether they are wheelchair-compatible.²³ Furthermore, those who are in wheelchairs explain that they are often treated disrespectfully by other people²⁷ and affected women fear that others will see them as disabled.²⁸

Sleep and rest

Fatigue is a common symptom of MS and has a negative correlation with the quality of life of the affected person,²⁹ as it affects the whole body.³⁰ Thus, activities that have been started remain half finished, resulting in dissatisfaction, stress, and frustration.³⁰ If fatigue is paired with weakness, it can have a significant impact on the patient’s family life.³¹ Fatigue is a hidden burden, which cannot be noticed by others. Therefore, people with MS feel unable to talk about it or to ask for help.²⁶ This unusual and invisible feeling does not disappear following sleep.³⁰ Women with MS experience fatigue persisting even after a night of restful sleep.³⁰ Although, people with MS who suffer from fatigue report that they sleep a lot during the day,²³ and thus, plan their day in such a way that fatigue is not noticed by others. For example, they attend important appointments in the morning and avoid evening events.³² Precise planning means that those affected do not have to explain their condition to others. Women with MS, in particular, are disappointed that relationships suffer from a lack of understanding of fatigue.³⁰ As the disease progresses, fatigue becomes more pronounced.²⁹ Women with moderate MS, unlike the affected men, suffer from more pronounced fatigue.²¹ Similarly, women with relapsing remitting MS have higher fatigue scores than men.²¹

Fatigue also has an impact on the sexual lives of those affected. In women, sexual dysfunction is more common (90.9%) than in men (61.6%) (P = 0.023).³³ In addition, people with sexual dysfunction suffer from more fatigue, pain, and limitations in activities of daily living.³⁴

Eliminate body waste

Some MS patients suffer from bladder weakness, urinary tract infection or urinary and fecal incontinence.^23,29,33,35 In general, urinary and fecal incontinence have a negative impact on the lives of the affected, although there are differences between women and men.³⁶ Bladder weakness occurs significantly more often in women (27.3%) than in men (6.7%) (P = 0.009)³⁷ and women fear that their incontinence is noticed in public. Therefore, they use incontinence pads³⁶ and are very inventive in dealing with their incontinence. Wheelchair-bound women explain that they use homemade cloth nappies because they can change them more easily.³⁸ In contrast, men hardly ever use incontinence pads.³⁶ So if they attend an event, they try to find out immediately or ahead of their visit where the restrooms are located³⁶ and reduce their coffee and alcohol consumption.³⁶

The fear of suddenly losing urine or stool accompanies women and men throughout their lives. For both genders it is important to keep their dignity despite urinary and/or fecal incontinence.³⁶ Therefore, it is embarrassing for them to receive help with incontinence pads or going to the bathroom. Especially those who have limitations in mobility and have to go to the toilet very often due to their incontinence, find this dependence on others very disturbing in daily life.³⁸ Due to incontinence and occurring spasms, some affected use clean intermittent catheterization.³⁸ Depending on the course of the disease, patients may be able to catheterize themselves or they may need help from caregivers or family members.³⁸ Furthermore, urinary and fecal incontinence as well as bladder weakness are symptoms which can be accompanied by primary or secondary sexual dysfunction.³³ The dysfunction manifests itself as delayed arousal, decreased lubrication or erection problems.³³ However, not all MS patients with incontinence problems experience a negative impact on sexual relations. For example, one woman describes that her partner, ‘[…] who treats me like a queen […] especially since MS […] and treats me as a woman in bed […]’,³⁹ was very caring and accommodating, which made her self-confidence rise again.³⁹

Avoid danger in the environment and avoid injuring others

‘[…] MS is like the weather as I cannot predict how I will feel in 3 days, or tomorrow or even in a few hours’,²⁶ one participant narrated in a qualitative study. Due to the unpredictability of physical weakness, auditory overload or fatigue, simple everyday tasks, such as shopping at a supermarket, can become a major challenge for people with MS²⁶ and can lead to falls.^23,26 Therefore, it is important for people with MS to plan their daily activities and even joyful moments very carefully.²⁶ The affected try to ensure their personal safety, for example, by taking their mobile phone with them every time they go outside so that they are able to call for help in case of an emergency.³⁹ No statistically significant gender-specific difference is described with regard to fear of falling (P = 0.951).²¹ The affected describe greater fear of losing their mobility^22,28 and, thus, being confined to a wheelchair.²² In general, no gender differences occur in terms of social support for physical activity.²¹ Nevertheless, men receive less positive support with physical activities than women.²¹ In terms of avoiding injuring others, women feel guilty and are afraid to pass on the disease to their children. Mothers with MS worry and feel stressed because they believe they cannot be ‘normal’ mothers.²⁴ For women with MS it seems to be important to feel needed and loved by their families, who understand them, as well as by other people.²⁵ Overall, women with MS experience a ‘good life’ if they can handle their daily lives and feel contentment, peace, and harmony.²⁵ For women with MS it seems to be important to meet other people with similar experiences.^25,27

Women with MS report that they feel more comfortable when they already know the health professionals who care for them.²⁷ For the affected women, it is also of great importance that health professionals do their utmost to provide them with the best possible care.²⁷ However, it is inconvenient for women and men if they must plan their day down to the smallest detail because of the support they need from health professionals. As a result, they feel very controlled and restricted.²³ Without appropriate support and help, women with MS feel insecure in everyday life.²⁷

Communicate with others in expressing emotions, needs, fears, and opinions

Despite the availability of appropriate healthcare, people with MS report unmet needs for treatment.⁴⁰ First of all, they report that many support options can be accessed at the time of diagnosis, but as the disease progresses these options become fewer.²³ At the onset of the disease, it seems necessary not to leave the affected women and men alone but to inform them comprehensively about the disease in order to reduce fears.²² When people are diagnosed with MS, they react very differently. They express fear, worry, shock, rejection, anger, hopelessness or a combination of these responses.²² At the time of diagnosis, gender differences can be described, too. While men react to the diagnosis with fear and shock, women often cannot believe that they have MS.²⁶ For some people with MS and their caregivers these reactions may recur if, for example, the disease worsens or new symptoms are experienced.²² For women and men with MS it is necessary to seek the support of their families, friends, other patients, and healthcare professionals,¹⁵ and they expect to experience honesty.²⁶ Women describe a longer history of the disease than men do. Therefore, women often fear becoming a burden for their families.²⁴ Women also feel like a social burden and excluded from healthy society.²⁷

In general, anxiety occurs more often in people with MS than in the healthy population.^35,40,41 Female patients with MS are more often affected by state anxiety than men (P = 0.029;⁴² P = 0.001³⁵). However, with regard to the rather serious trait anxiety, male patients with MS (40%) are more often afflicted than women (21.6%) (P = 0.171).⁴² Similarly, Dahl et al.⁴¹ report slightly more symptoms of anxiety in men (31.1%) than in women (29.7%) without describing the severity of the symptoms. Yet, they indicate the higher prevalence of anxiety in MS patients who suffer from fatigue, which is 36% in women (95% CI 7% to 40%, P = 0.01) as well as in men (95% CI 7% to 39%, P = 0.12).⁴¹ Men, however, show an insignificant relation between anxiety and depression.⁴³ Female participants describe themselves as naturally more anxious. Women feel that they can handle their situations better if they can share their emotions.²⁸

Depression is also a common symptom of people with MS and it affects quality of life.²⁹ Almost 50% of MS patients have a mood disorder in the form of depression.³⁵ The exact course of this symptom is unknown but it is obvious that the level of disability has an impact on patients’ mood,⁴⁴ in particular depression.⁴² Women are more likely to report depressive symptoms than are men.⁴¹ Although, in female patients, there is poor correlation (r = 0.47) between depression and sexual dysfunction,⁴³ treating the depression might have a positive impact on the sexual dysfunction and vice versa.³⁴ However, only 15% of the nurses involved in the care of patients with MS recommend assistance for sexual dysfunction through counseling due to the fact that they feel shy and uncomfortable talking about sexual issues with their patients.⁴³ In addition, physicians feel uncomfortable talking about sexual issues with their patients. The patients themselves feel awkward talking about their sexuality or feel ashamed ‘to ask for help in relation to a sexual problem that should ideally be a private matter and should be resolved by the individuals themselves’.⁴³

Work in such a way that there is a sense of accomplishment

People with MS conceal their disease for fear of losing their jobs.²² Sixty percent (n = 153) report facing work and relationship difficulties.²⁹ Concentration problems or memory difficulties are common symptoms of MS, as well as difficulty recalling words. All of this often leads to challenges on the job or even job loss.³¹ Women with MS seem to cope with job loss more easily than men. This may be due to the fact that women are involved in more different social structures and thus a coping strategy is already in place.³² In addition, women are more flexible due to gender-specific careers that must be compatible with family and household.³²

Both men and women experience that when they take care of other people, they are less preoccupied with themselves. They see caring for others as a coping strategy to stay active themselves.^32,45 In addition, those affected learn to cope better with negative traits due to the disease. For example, some describe that they use humor to reduce stress or that their mood improves when they are less cynical.⁴⁵ They have in common that they want to be perceived as normal people.³⁶ Especially women with children want to be seen as normal mothers, the way they have always imagined it to be.²⁴

Play or participate in various forms of recreation

In addition to fulfillment at work, an essential component of quality of life is being able to pursue leisure activities. Forbes et al.²⁹ present evidence that the quality of life of people with MS is lower than in the healthy population. Despite all the limitations, those affected try to think positively and indulge in enjoyable activities such as going to a restaurant or support group, reading a book or taking a daytime nap.²³ Women with the disease report that it is a good day for them if they can do ordinary things without having to plan them a day in advance.²⁵

Both men and women relate that they have tried new physical activities such as yoga or swimming and have realized that those are good for them personally.⁴⁵ Even vacations need to be carefully planned to be relaxing with as few changes as possible despite the limitations.²³ Although a weekly sauna session has a harmful effect on the bodies of MS patients due to the heat, they enjoy the time in the sauna as it is important for their mental well-being.²⁶ However, some women and men experience that they can no longer pursue their previous leisure activities due to their limitations. For example, one woman reports that she can no longer go swimming.³²

Women experience that their role in the family is increasingly taken over by other family members when their illness worsens. They describe that this is not comfortable for them.²⁸ Since pain or fatigue are not perceptible to others, women with MS are often treated like children. This gives them the feeling of not being understood.²⁷ Overprotective relatives are also perceived as exhausting by women and men with MS.²⁸ Most of all, they have the feeling that the entire family suffers as a result of their MS.³⁰ Women with MS are pleased when they can spend time with their children and fulfill their roles as mothers³⁹ and this also boosts their self-confidence.²⁸ However, MS can also reinforce mindfulness and caring within the family, and thus strengthen the self-worth of the person with the disease.⁴⁶ By increasing the self-esteem of the affected, the social-emotional quality of life is also enhanced.⁴⁶

Learn, discover, or satisfy the curiosity that leads to normal development and health

There are cultural and gender differences in developing coping strategies to deal with MS. In Austria, it is easier for men (80%, n = 25) to accept their chronic disease than for women (62%, n = 37). In the US, more women (55%, n = 39) than men (40%, n = 25) state that they have learned to accept their illness.⁴⁶ In addition, humor is a coping strategy commonly used by both women (4.30 ± 1.26) and men (5.27 ± 3.03).⁴³ For women, social support for emotional reasons, positive interpretation of the disease, and acting out emotions are essential coping strategies.⁴³ Men use turning to religion as a coping strategy, in addition to interpreting the illness positively and acting out their emotions.⁴³ Other coping strategies include accepting the condition, constantly changing how one deals with it, developing a new body image, rediscovering one's identity, accepting offers of support, and offering help to others who are affected.⁴⁶

People with MS attend self-management classes offered by local MS societies or participate in studies focused on mental health treatments.²³ This gives them a new purpose, introduces them to new people, and provides them with additional information about the disease.²³ Especially at the onset of the disease, the women and men with MS need a lot of information as they are not familiar with the diagnosis.²² Additional information on new treatment options gives hope to the affected.³²

Discussion

Several different needs of women and men with MS were identified. Based on the different courses of the disease and the symptoms that occur, such as fatigue, anxiety and depression, even at the beginning of the disease female and male patients show different reactions to the diagnosis³¹ and the desire for information.²² During the course of the disease, women with MS receive more physical support than affected men.²¹ Differences between women and men with MS can also be shown with regard to dealing with fecal and/or urinary incontinence.³⁶ In addition, men express a greater concern about not being able to pursue their work,³² while women do not want to change their responsibilities within the family due to the disease.²⁸ Affected women and men develop different coping strategies to manage their everyday lives with the disease.⁴³

Therefore, healthcare professionals who treat patients with MS need to have a special physical and psychological understanding to guide patients emphatically through the course of their disease.⁴⁷ MS casts a shadow over the lives of sufferers. Furthermore, those affected feel that the illness takes hold of their lives because people in their environment no longer ask about their well-being but only refer to their illness.⁴⁷ Continuity of care is an essential element of quality nursing care; it helps nurses and caregivers gain their patients’ confidence and also enables them to support the patients and their families more effectively.⁴⁸ This concept is based on a long-term patient–nurse partnership in which, on the one hand, the nurse knows the patient’s main concerns from experience and is able to detect problems at an early stage, and, on the other hand, integrates new insights and decisions from a holistic patient perspective.⁴⁸ Clinicians should make an effort towards a more careful and sensitive approach when assessing the influence of MS-related symptoms such as fatigue, spasticity, incoordination, and pain.³⁷ MS has a negative impact on sexual functioning,³⁷ a complication that occurs more frequently in the chronic phase of the disease than at the time of diagnosis.⁴³ As a matter of fact, more female than male patients experience sexual dysfunction³⁷ which shows that this symptom does not only occur in men.³⁷ In addition, sexual disorders severely affect sufferers’ relationships with their partners.³¹ Celik et al.³⁷ reinforce that women are affected more often by sexual dysfunction, and describe loss of vaginal lubrication as the most common symptom of sexual dysfunction. For women with MS, problems during sexual intercourse, such as urine and fecal incontinence, muscle weakness or spasticity, tremor or bodily sensations, and other practical problems, are in the foreground.³⁹ Both women and men describe a loss of libido and difficulties in achieving orgasm.³⁷ Beckerman et al.⁴⁹ have found that those patients who have had MS for ten years have increased difficulty with activities of daily living. The impairments especially affect motor skills and sexuality.⁴⁹ Nurses need to pay attention to the various expressions of sexuality, such as warmth, tenderness, verbal expressions of love and affection, as well as reports of sexual intercourse,⁵⁰ due to the fact that sexuality means living with others and responding to one's own feelings and those of others.⁵¹

Furthermore, for nursing practice, health professionals who take care of patients with MS should be aware of all symptoms of the disease that are related to pain and depression or social withdrawal and, as a consequence, a sedentary lifestyle due to the fear of incontinence.⁵² Together with the patients, nurses should carefully identify the full range of symptoms from the patients’ points of view as well as from their personal experience.⁵² Physicians should support and encourage the affected ‘to play a more active role in their health and to adopt healthy life-style behaviors’.⁵³ It seems essential that health professionals exude confidence so that women and men with MS feel safe and comfortable.²⁸ Furthermore, women imply that they want to talk to health professionals not only about disease-related issues, but to receive holistic care.²⁷

In general, however, based on the available literature, it is suggested that there is more study evidence for women with MS than for men with MS. We did not find any literature focusing on men with MS and their experiences with fatherhood. Based on the results of the identified qualitative and quantitative studies, no valid conclusions can be drawn regarding the experiences of the affected women and men. Therefore, the changes to the lives of women and men with MS can be described in general, but no gender-specific aspects can explicitly be derived. Thus, the scoping review¹³ highlights a research gap in the identified literature regarding people with MS and the gender perspective as a central theme. Therefore, in the second step of the literature search, the search strategy was extended by the components ‘quality of life’ and ‘experiences of the disease’, so that finally 26 studies could be included.

Limitations

This scoping review¹³ is subject to some limitations. In some studies, the sample consisted only of women with MS,^25,27,30 therefore we cannot draw conclusions regarding men's experiences with the illness. In addition, the deductive coding process using Henderson's Nursing Need Theory¹¹ poses a limitation in terms of changes in the sexuality of the affected patients, as these cannot be explicitly captured.

To present the current state of research regarding people with MS and gender-sensitive healthcare, a scoping review¹³ was deliberately chosen since it enabled us to explain the experiences of people with MS in a gender-sensitive way. The included studies also have limitations. It should be emphasized that the statistical analyses by Dahl et al.⁴¹ and Kılıc et al.⁴³ are neither comprehensible nor clear.

Conclusion

Gender-related ‘differences in health […] are the result of both, biological and social influences that occur simultaneously in such a way that the effect of sex biology cannot be distinguished from that of gender roles’.⁵⁴ Therefore, nurses should have gender competences which – in practice – enable them to focus on the differences between women and men⁵⁵ individually, adequately, and according to the patients’ personal needs. To our knowledge, little is known about the experiences of MS patients from a gender point of view or from the nursing perspective. Gender-sensitive components of care are described in relation to other chronic diseases and in general nursing settings. For these reasons, further research is required to gain knowledge about the experiences of women and men suffering from MS, thus enabling caregivers to care for women and men in a gender-sensitive way. In addition, to our knowledge, no research has been conducted on the experiences of women and men with MS from a gender-sensitive point of view nor on gender-specific nursing interventions or gender-sensitive care for MS patients. That is why further research is required to develop gender-sensitive nursing interventions for male and female MS patients.

Supplemental Material

sj-docx-1-njn-10.1177_20571585211056764 - Supplemental material for Gender-specific nursing needs of people with multiple sclerosis: A scoping review

Supplemental material, sj-docx-1-njn-10.1177_20571585211056764 for Gender-specific nursing needs of people with multiple sclerosis: A scoping review by Karoline Schermann, Christiane Kreyer and Martin Pallauf, Daniela Deufert in Nordic Journal of Nursing Research

Footnotes

Note

The completed PRISMA-ScR checklist is available from the first author.

Supplemental material

Supplemental material for this article is available online.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Conflict of interest

The authors declare that there is no conflict of interest.

ORCID iD

Karoline Schermann

References

Ransohoff

Hafler

Lucchinetti

. Multiple sclerosis-a quiet revolution. Nat Rev Neurol 2015; 11: 134–142.

Walton

King

Rechtman

, et al. Rising prevalence of multiple sclerosis worldwide: insights from the Atlas of MS, third edition. Mult Scler 2020; 26: 1816–1821.

Kern

Cepeda

. Treatment patterns and comorbid burden of patients newly diagnosed with multiple sclerosis in the United States. BMC Neurol 2020; 20: 296.

Miller

Karpinski

Jezewski

. Relapsing-remitting multiple sclerosis patients’ experience with natalizumab: a phenomenological investigation. Int J MS Care 2012; 14: 39–44.

. de Groot

Beckerman

, Lankhorst GJ , et al. The initial course of daily functioning in multiple sclerosis: a three-year follow-up study. Mult Scler 2005; 11: 713–718.

Halper

Harris

. Nursing practice in multiple sclerosis: a core curriculum. 4th ed. New York: Springer Publishing Company, 2017.

Franconi

Campesi

Colombo

, et al. Sex-gender variable: methodological recommendations for increasing scientific value of clinical studies. Cells 2019; 8: 1–24.

Miller

. Why are sex and gender important to basic physiology and translational and individualized medicine? Am J Physiol Heart Circ Physiol 2014; 306: H781–H788.

Regitz-Zagrosek

. Sex and gender differences in health: Science & Society series on sex and science. EMBO Rep 2012; 13: 596–603.

10.

Gonzalo

. Virginia Henderson: nursing need theory, https://nurseslabs.com/virginia-hendersons-need-theory/ (2021, accessed 12 August 2021).

11.

Pokorny

. Nursing theorists of historical significance. In: Raile Alligood

(ed) Nursing theorists and their work. 8th ed. St. Louise: Elsevier Health Sciences, 2013, pp.42–58.

12.

Arksey

O’Malley

. Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005; 8: 19–32.

13.

Tricco

Lillie

Zarin

, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med 2018; 169: 467–473.

14.

Westphaln

Regoeczi

Masotya

, et al. From Arksey and O’Malley and beyond: customizations to enhance a team-based, mixed approach to scoping review methodology. MethodsX 2021; 8: 1–14.

15.

Bates

. The design of browsing and berrypicking techniques for the online search interface, https://pages.gseis.ucla.edu/faculty/bates/berrypicking.html (1989, accessed 12 August 2021).

16.

Buchanan

Martin

Moore

, et al. Nursing home residents with multiple sclerosis and dementia compared to other multiple sclerosis residents. Mult Scler 2005; 11: 610–616.

17.

Buchanan

Wang

. Gender analyses of nursing home residents with multiple sclerosis. Journal of Gender-Specific Medicine 2003; 6: 35–46.

18.

Critical Appraisal Skills Programme. CASP checklists, https://casp-uk.net/casp-tools-checklists/ (2021, accessed 25 August 2021).

19.

Leech

Onwuegbuzie

. Qualitative data analysis: a compendium of techniques and a framework for selection for school psychology research and beyond. Sch Psychol Q 2008; 23: 587–604.

20.

Gelling J. Humans. https://pixabay.com/de/vectors/menschen-mann-frau-kind-junge-1886412/ (2016, accessed 12 August 2021).

21.

Anens

Emtner

Zetterberg

, et al. Physical activity in subjects with multiple sclerosis with focus on gender differences: a survey. BMC Neurol 2014; 14: 1–10.

22.

Fallahi-Khoshknab

Ghafari

Nourozi

, et al. Confronting the diagnosis of multiple sclerosis: a qualitative study of patient experiences. J Nurs Res 2014; 22: 275–282.

23.

Bogosian

Morgan

Moss-Morris

. Multiple challenges for people after transitioning to secondary progressive multiple sclerosis: a qualitative study. BMJ Open 2019; 9: e026421.

24.

Parton

Katz

Ussher

. ‘Normal’ and ‘failing’ mothers: women's constructions of maternal subjectivity while living with multiple sclerosis. Health (London) 2019; 23: 516–532.

25.

Olsson

Skär

Söderberg

. Meanings of feeling well for women with multiple sclerosis. Qual Health Res 2010; 20: 1254–1261.

26.

van der Meide

Teunissen

Collard

, et al. The mindful body: a phenomenology of the body with multiple sclerosis. Qual Health Res 2018; 28: 2239–2249.

27.

Olsson

Skär

Söderberg

. Meanings of being received and met by others as experienced by women with MS. Int J Qual Stud Health Well-Being 2011; 6: 1–8.

28.

Jones J

Walsh

Isaac

. ‘Putting one foot in front of the other’: a qualitative study of emotional experiences and help-seeking in women with multiple sclerosis. J Clin Psychol Med Settings 2014; 21: 356–373.

29.

Forbes

While

Mathes

, et al. Health problems and health-related quality of life in people with multiple sclerosis. Clin Rehabil 2006; 20: 67–78.

30.

Olsson

Lexell

Söderberg

. The meaning of fatigue for women with multiple sclerosis. J Adv Nurs 2005; 49: 7–15.

31.

Newland

Thomas

Riley

, et al. The use of focus groups to characterize symptoms in persons with multiple sclerosis. J Neurosci Nurs 2012; 44: 351–357.

32.

Frost

Grose

Britten

. A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis. Health (London) 2017; 21: 316–336.

33.

Demirkiran

Sarica

Uguz

, et al.

Multiple sclerosis patients with and without sexual dysfunction: are there any differences?

Mult Scler 2006; 12: 209–214.

34.

Domingo

Kinzy

Thompson

, et al. Factors associated with sexual dysfunction in individuals with multiple sclerosis: implications for assessment and treatment. Int J MS Care 2018; 20: 191–197.

35.

da Silva

Vilhena

Lopes

, et al. Depression and anxiety in a Portuguese MS population: associations with physical disability and severity of disease. J Neurol Sci 2011; 306: 66–70.

36.

Eastwood

Kralik

Koch

. Compromising and containing: self-management strategies used by men and women who live with multiple sclerosis and urinary incontinence. Australian Journal of Holistic Nursing 2002; 33–43.

37.

Celik

Poyraz

EÇ

Bingöl

, et al. Sexual dysfunction in multiple sclerosis: gender differences. J Neurol Sci 2013; 324: 17–20.

38.

Koch

Kelly

. Identifying strategies for managing urinary incontinence with women who have multiple sclerosis. J Clin Nurs 1999; 8: 550–559.

39.

Kralik

Koch

Eastwood

. The salience of the body: transition in sexual self-identity for women living with multiple sclerosis. J Adv Nurs 2003; 42: 11–20.

40.

Beiske

Svensson

Sandanger

, et al. Depression and anxiety amongst multiple sclerosis patients. Eur J Neurol 2008; 15: 239–245.

41.

Dahl

O-P

Stordal

Lydersen

, et al. Anxiety and depression in multiple sclerosis: a comparative population-based study in Nord-Trøndelag county, Norway. Mult Scler 2009; 15: 1495–1501.

42.

Ahmadi A

Mobini

Kabiri

, et al. Relationship between anxiety and depression with disability over multiple sclerosis patients in Rafsanjan, Iran. Arch Neurosci 2018; 5: 1–6.

43.

Kılıc

Unver

Bolu

, et al. Sexual dysfunction and coping strategies in multiple sclerosis patients. Sex Disabil 2012; 30: 3–13.

44.

Askari

Ghajarzadeh

Mohammadifar

, et al. Anxiety in patients with multiple sclerosis: association with disability, depression, disease type and sex. Acta Med Iran 2014; 52: 889–892.

45.

Ghafari

Fallahi-Khoshknab

Nourozi

, et al. Patients’ experiences of adapting to multiple sclerosis: a qualitative study. Contemp Nurse 2015; 50: 36–49.

46.

Lex

Weisenbach

Sloane

, et al. Social-emotional aspects of quality of life in multiple sclerosis. Psychol Health Med 2018; 23: 411–423.

47.

Masoudi

Abedi

, et al. The perspectives of Iranian patients with multiple sclerosis on continuity of care: a qualitative study. J Nurs Res 2015; 23: 145–152.

48.

Haggerty

Reid

Freeman

, et al. Continuity of care: a multidisciplinary review. BMJ 2003; 327: 1219–1221.

49.

Beckerman

Kempen

JCE

Knol

, et al. The first 10 years with multiple sclerosis: the longitudinal course of daily functioning. J Rehabil Med 2013; 45: 68–75.

50.

Christopherson

Moore

Foley

, et al. A comparison of written materials vs. materials and counselling for women with sexual dysfunction and multiple sclerosis. J Clin Nurs 2006; 15: 742–750.

51.

Gagliardi

. The experience of sexuality for individuals living with multiple sclerosis. J Clin Nurs 2003; 12: 571–578.

52.

Newland

Flick

Thomas

, et al. Identifying symptom co-occurrence in persons with multiple sclerosis. Clin Nurs Res 2014; 23: 529–543.

53.

Hadgkiss

Jelinek

Taylor

, et al. Engagement in a program promoting lifestyle modification is associated with better patient-reported outcomes for people with MS. Neurol Sci 2015; 36: 845–852.

54.

Thakral

Lacroix

Molton

. Sex/gender disparities in health outcomes of individuals with long-term disabling conditions. Rehabil Psychol 2019; 64: 221–228.

55.

McGregor

Templeton

Kleinman

, et al. Advancing sex and gender competency in medicine: sex & gender women's Health collaborative. Biol Sex Differ 2013; 4: 1–6.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.11 MB