If they are OK; we are OK; The experience of partners living with Neuromyelitis Optica

Abstract 200/200 words

Neuromyelitis Optica (NMO) is a rare neuro-inflammatory condition characterised by acute

relapses causing severe visual or physical disability. The impact on family members and their

experiences have not been studied. The study aims were to explore the lived experience of

partners of people with NMO and investigate potential carer burden in this population.

Method: A mixed-method design was used. 11 partners of people with NMO completed semi-

structured interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and

Depression Scale.

Results: Three qualitative themes influenced partners’ quality of life: role/relationship; it’s all

about them; and the impact of NMO. Life changed dramatically for participants after the first

NMO attack, necessitating responsibility for physical, financial, social and emotional support. As

NMO symptoms improved and stabilised, freedom and quality of life for spouses also improved,

albeit with on-going worries regarding the impact of potential devastating future relapses.

Quantitative findings showed mild/moderate carer burden (46%), mild/moderate anxiety (59%)

and mild/moderate depression (24%). No partner indicated severe carer burden, anxiety or

depression.

Conclusion: Participants regarded themselves as partners rather than carers whom require

assessment and support for their emotional and health well-being. Health care professionals need

to acknowledge the important role partners play in the dynamics of the family unit, through

greater discussion and inclusion.

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Introduction Word count 4863/5000

Neuromyelitis Optica (NMO) is a rare autoimmune condition characterised by recurrent episodes

of inflammation of the optic nerves (optic neuritis) and spinal cord (transverse myelitis) [1].

Worldwide, it is estimated there are half a million cases [2]. Predominantly females are affected,

with a gender ratio of 5:1 [3], and the mean age of onset is 48 years [1]. The course of NMO is

unpredictable, as relapse rate, visual and physical symptoms are highly varied between

individuals. The caregiving requirements, anxiety related to the unpredictability of relapses and

rarity of this condition, may affect the quality of life of partners of persons affected with NMO

and potentially be a source of psychosocial distress.

The family unit often plays a pivotal role in a person’s adjustment to chronic disease and is

influenced by behavioral, social factors [4,5,6,7]. There are many similarities for NMO to other

relapsing conditions such as rheumatoid arthritis (RA)[4] and multiple sclerosis (MS)[8,9],

however, they potentially have an additional psychological burden due to the quite severe

disability very early on in the illness (often after first attack). The speed and severity of this

disability may be comparable to traumatic injuries such as spinal cord injury (SCI). For

example, Dickson [10] and Conti [11], found spouses of partners with SCI experienced an almost

instantaneous sense of loss, emptiness and grief during the acute rehabilitation phase.

A previous qualitative study by our group explored the lived experience of NMO and quality of

life from the patient’s perspective [12] and found their recovery and well-being dependent upon

the active involvement and support from their spouse. There is currently no evidence of the lived

experience or support needs of partners of people with NMO or whether the condition presents

them with unique caregiving or relationship challenges. A greater understanding of their needs

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could provide information to improve psychological, social and physical quality of life. Study

aims were to explore the lived experience of partners of people with NMO and investigate

potential carer burden in this population.

For clarity, the terminology used in this manuscript; participant refers to husband or wife

interviewed, whilst partner refers to the person with NMO.

Method

Insert table 1 here

Design

This study utilised a mixed-methods design, comprising semi-structured interviews and

standardised questionnaires. Approval was granted by the local Research Ethics Committee, and

written informed consent was obtained from all participants.

Sample

Participants were recruited from patients attending the National NMO Clinic, funded by National

Health Service, England. The clinic sees patients referred from the northern half of the United

Kingdom. Patients attending the service have already had one or more relapses with subsequent

interaction with health care providers. Participants were purposefully sampled for variation in

age, gender and heterogeneity [13] of partner’s NMO (e.g. NMO related disability, time since

symptom onset; table 1). All participants that were asked agreed to be interviewed (n = 11).

Participants were aged between 38-74 years; all couples had been married between 10-52 years,

and the median time since onset of partners’ initial NMO attack was 7.3 years (range 18 months-

34 years). Ten had children (no children under 12 years). Inclusion criteria were that participants

were able to speak English fluently to participate in a qualitative interview and that their spouse

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was not currently experiencing a relapse (as this was deemed unethical).

All partners had residual disability from previous relapses of optic neuritis and myelitis. Visual

loss ranged from partially impaired vision in one eye (2 partners), loss of vision in both eyes (6

partners) (two were registered partially sighted). Motor loss ranged from poor balance and

weakness in one leg (1 partner) to weakness in both legs (4 partners) and 3 partners were

paraplegic and wheelchair users, 8 partners had bladder and bowel problems. Sensory loss

included complete numbness, neuropathic pain, tight banding around the trunk and paroxysmal

spasms.

Measures

The standardised questionnaire measures used were the Zarit Burden Interview (ZBI) [14, 15]

and Hospital Anxiety and Depression Scale (HADS)[16,17]. These self-report questionnaires

examine the perceived burden of caring (ZBI) and symptoms of low mood and anxiety during

the previous four-week period (HADS). The ZBI has 22 items and final scores range from 0-60,

with higher scores indicating greater perceived carer burden. The HADS has 14 items and

provides subscales for levels of anxiety and depression symptoms. Each final score ranges from

0-21, with higher scores indicating greater levels of anxiety or depression symptoms.

Data collection

Semi-structured interviews gave participants an opportunity to discuss their personal experiences

and issues of relevance to them. Interviews were conducted face-to face by a Specialist Nurse or

Assistant Psychologist, experienced in qualitative interviewing. The semi-structured interview

schedule comprised questions exploring participants’ experiences of their partner’s diagnostic

process, any impact of NMO on their daily life and relationships with their partner and wider

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family. It also explored their coping strategies and support needs from both generic and specialist

health care services.

All interviews were audio-recorded and transcribed verbatim; all identifying features including

names, locations and treatment centers were removed during transcription. Interviews were

completed in a hospital consulting room or in the participant’s home, according to interviewee

preference, and took between 30 – 60 minutes. Contemporaneously, 75 spouses of patients

diagnosed with NMO were posted the ZBI and HADS, with a high response rate of 72% (n =

54).

Data Analysis

Analysis incorporated two stages: analysis of qualitative data from interviews, and analysis of

quantitative questionnaire data.

Qualitative data analysis

Qualitative data analysis using a constant comparative method [18, 19] was an on-going,

iterative process. The researchers analysed and coded all data independently. Data was analyzed

manually; no specialised software such as NVivo or ATLAS.ti was used. The analysis was

systematically performed in several stages (as outlined in Boejie [18]). First, the entire transcript

was read whilst listening to the audio file to get a feeling of the overall narrative and the major

issues. Second, the transcript was coded by sentence or section; codes arose from these sections,

as opposed to being forced on it. Initial codes were created using descriptive open coding

(including in vivo quotes); selective (axial) coding then specified a phenomenon or category by

its defining characteristics and context [20]. Once a transcript was fully coded it was discussed

code by code by the two researchers, to address any similarities and differences in interpretation.

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Categories were then devised which provided a broader overview of recurrent, and potentially

more abstract, key themes in the data [20].

All participants were sent a copy of the findings for their feedback, none responded to this

invitation. Thus the study followed guidelines from Lincoln and Guba [21] for trustworthiness,

by establishing credibility, transferability, dependability and conformability.

Reflexivity

Both researchers had prior knowledge of NMO. However, they came from different clinical

backgrounds, enabling any potential biases in interpretation to be discussed. Both researchers

worked clinically with the partners of participants in this study. Participants were recruited using

a standardised procedure and were informed that choosing to not participate in the study would

not influence their partner’s care in any way. It was also reinforced on multiple occasions that

topics discussed in the interviews would remain confidential and not be shared with their

partners or the wider clinical team.

It is possible that the use of clinicians as researchers may have influenced the topics participants

chose to discuss; however, participants were felt to have given a frank and truthful account of

their experiences of both NMO and health care services. Existing rapport with clinicians may

also have helped participants feel more comfortable in discussing sensitive topics, than they may

have felt with an unknown researcher.

Quantitative data analysis

Descriptive statistics were used to investigate the number of participants experiencing carer

burden, depression and anxiety.

Interview findings

The interviews generated three themes: role/relationships, ‘it’s all about them’ and impact of 6

NMO. These themes all affected the partner’s quality of life as demonstrated in figure 1.

Insert figure 1 here

Role/Relationship

Participants reported that the first NMO relapse caused devastating disability. During this period

three partners were admitted to Intensive Care and required ventilation, six partners were

paralysed and eight partners lost their vision. At the time of first relapse (mean 6 years ago) little

was known about NMO, participants felt isolated as they worried about their partners’ present

and future.

I was really scared when he was first diagnosed, when you see him lying there unable to move

and think that’s what it’s going to be like forever. Wife 4

The initial relapse resulted in long hospital admission and rehabilitation process meant that

participants took on additional duties within the home and family to compensate. Typically this

involved meeting both perceived ‘male’ stereotypical roles such as financial provider and the

‘female’ stereotypical role of caregiver; participants reported this period as very challenging,

especially when children were involved. Financial difficulties were more evident when men were

diagnosed with NMO, as all the wives had to find work to support the family, and manage the

home whilst caring for the family.

I’d got 3 children when he went blind. Nobody knocked on your door to say “are you alright?”

I had to leave him on his own during the day after I’d stopped at home with him for 3 months, I

had to go back to work as we couldn’t afford the mortgage, there was no Social Security like

there is today. Wife 3

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In comparison, husbands mainly continued with their job as before, however they also reported

immense pressure in managing all duties. Husbands in this sample had employment that allowed

flexibility so they could juggle looking after their partner, taking them to appointments etc.

I couldn’t really take time off work, so my parents moved in, did the school run etc, so that I

could work and then drive the kids to hospital to see their mum. Husband 1

My role has changed a lot. Before I was the husband who brings bread in and do things, now I

feel like a carer, I am not a hunter like I was before. This puts pressure on me because I can’t do

what I was doing before. Husband 3

Some wives portrayed themselves as being judgmental about their partner’s difficulties, whilst

men were unlikely to portray themselves in this way.

…. he doesn’t like me going out, why I don’t know, I would like to think I could go out a bit

more often. My granddaughter rang me on Sunday, do you want to go bingo, I explained to her

granddad doesn’t like me going out, I mean, you can’t explain to your granddaughter why you

can’t go out. Wife 2

All relationships appeared to be stable and secure before the first relapse, and participants gave

the impression of working together with their partner as a team and subsequently being able to

manage. Husbands commonly reported their marriage was a partnership and talked as a couple

dealing with NMO, for example, “we do this” …. “NMO affected us” ….

She cooks when she can, sometimes she can’t cook, we have to accept that and then we have

alternative meals, we are happy to have a sandwich or pasta, easy cooking. Husband 4

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The majority of wives (4/5) reported giving their partner ‘pocket money’ or transferring money

to their bank account to give them a feeling of independence, in line with societal norms

regarding the need for men to be autonomous.

He has his own bank account that I transfer money to, he’s been out he’s put his hand in his

pocket, he’s paid for something, he’s achieved because that’s what a man does. It makes him feel

better having his own money… Wife 5

There was an expectation by both husbands and wives that they had a duty to care within their

relationships and therefore no alternatives to living with NMO, so the best plan was ‘to get on

with it.’ There was tremendous pressure on the participants due to the feeling that everything was

down to them, as they were the ones trying to keep the family unit together.

I feel bogged down sometimes, I have to work, I have to pay the bills, I’m always trying to catch

up, I have a biggish house and garden and it’s all down to me. Wife 1

One of the main frustrations for all participants was the lack of spontaneity in the relationship.

Participants felt they were always ‘on duty,’ with little respite, and wives in particular reported

frustration that they had to organize everything and make all decisions. An example was the

difficulty of planning for a trip out, the need for knowing where the toilets were (toilet mapping)

and judging journeys according to their distance for toilet stops and the additional worry

regarding disabled access.

Husbands acknowledged their partners were previously more sociable and that their partners

missed going out shopping or being with friends, yet they did not put social activities as a

priority. In comparison, wives reported feeling under pressure to restrict their social activities, as

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they felt guilty leaving their partner at home.

I don’t feel as if I dare to leave him at home, I have arranged a night out with the ladies and we

are staying overnight but I will worry about him. I don’t know if it’s worth the worry. Wife 1

Husbands tended to be protective of their partner both emotionally and physically, wanting to

protect them from harm. Husbands reported worry and fear that their partner was suffering or

their condition could get worse, i.e. another relapse, and to prevent this they would remove stress

or potential trigger factors to make their partners’ life easier. Husbands encouraged rehabilitation

and exercises in the hope their partner would become more mobile and independent.

I bought her all this equipment for sport to keep her moving, I bought her a Wii sport set and I

will try it with her and say come on let’s do it together, Husband 6

Although wives had the same worry and anxiety of a further relapse, they encouraged their

partner to do more for themselves and perceived independence as central to their partner’s

improved wellbeing and feeling of being part of the family. When I go to work, I leave him jobs

to do such as peeling the vegetables, or doing the garden (he loves the garden) it may take him

all day but he’s done something. Wife 5

Husbands reported they rarely expressed their thoughts and feelings with their partners, yet there

was clearly substantial emotional strain as they all became upset during the interview, reportedly

because nobody had ever asked them how they feel.

It is tough for her, she worries a lot, and she’s changed a lot since she got this illness. It gets me

down. I didn’t want to talk to anyone because nobody could help so I struggle on my own.

Sometimes I cry on my own, not in front of her because I don’t want to upset her. Husband 3

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In summary, NMO has a significant impact on relationships and roles, causing participants to

take on all roles and responsibilities within a couple or family, and causing isolation and worry.

Participants experience frustration at the lack of spontaneity and need for planning and display

gender differences in their views on rehabilitation and paternalism.

Impact of NMO Symptoms

Disability and residual symptoms from relapses were daily reminders of NMO and had a major

impact on participants’ life.

I don’t think a day goes by without we don’t have some sort of conversation about tablets or

something to do with NMO. Wife 3

When the partner did not accept the need for a wheelchair or adaptations within the house to

prevent harm or aid independence, the living situation was made more difficult for participants.

He won’t have grab rails in the house or have a stair lift fitted ‘they will spoil it’ he doesn’t use

his Zimmer frame, the wheelchair is in the garage. He is too proud and wants to be independent;

he would rather struggle than admit he needs help, even though it would make life easier. Wife 5

There was often frustration at other people’s ignorance especially when participants were trying

to do activities such as pushing a wheelchair around the shops or the lack of consideration from

others in holding doors open or offering assistance. Urinary problems such as continence issues,

the need to catheterise frequently and accessing toilets quickly due to urgency of micturition

added to the daily pressure. Symptoms that participants had no control over such as pain, fatigue

and mood particularly affected husbands, as they felt helpless that they could not ‘fix’ the

problem, this added to the pressure of looking after their partner.

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When I finish work, I don’t know what kind of house I am going to enter or what she is going to

be like, upbeat or down. If she’s had a bad day and been in pain, I can’t go round laughing and

joking. If she is sad it dampens my day as well. If she is happy then I am very happy. Husband 4

Husbands recognised the effect of body image, in particular weight gain from steroids, on their

partner,

She’s put on a lot of weight, she’s started hating herself and saying that her clothes don’t fit her,

so OK I will buy her new clothes just to give her some hope. I just want her to get better.

Husband 3

A further frustration for participants was experienced when seeking assistance from Health Care

Professionals (HCP), in particular, not knowing where to start to navigate services or not being

eligible for services. Participants reported feeling isolated due to lack of support, exasperated

when HCP did not ask them about the situation at home, the impacts of symptoms on them, or

for their opinion, despite their substantial caregiving role.

Appointments are difficult because at the end of the day the doctor is there to deal with her, but

you do feel a bit of a stranger sometimes. Husband 6

All participants appreciated assistance from HCP that improved their partner’s life. Practical

support such as physiotherapy, occupational therapy, or help at home with chores was valued. As

NMO is such a rare condition, support was valued by somebody who could understand NMO,

either by providing information or by giving them coping strategies to manage their partner’s

symptoms, in particular bladder, pain or fatigue.

It’s (NMO) all unknown, Nobody has heard of it, they don’t know what to do, I feel when you

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have this illness, you are on your own and don’t get any help from anybody. Husband 5

However, when support was available it was greatly appreciated by the participants

Since she has got you (nurse contact) now she feels better. This is really good for me because I

felt while you have this illness you are on your own. The hospital, social nor GP say they know

nothing about this illness so I used to get stressed until the day she got somebody to talk to and

somebody to call her back and help her. Husband 1

All participants felt tied to the commitments required of them including the many hospital

appointments, liaisons with HCP, General Practitioner (GP) visits, therapists and activities such

as organizing the dentist or hairdresser, added to the pressure of time off work.

I have my own business so don’t need permission to go to hundred appointments per year

although time away is a problem. Husband 2

In summary, spouses of people with NMO experience daily caregiving duties and may feel

helpless where they cannot help their partner lessen their symptoms. They report difficulties

accessing services, but value highly services which can provide information or rehabilitative

support.

It’s all about them

Participants reported everything was done for the benefit of their partner; participants discussed

the interconnected nature of the relationship, giving the impression that if the partner was OK

they were OK. The majority of answers for both husbands and wives were given from their

partner’s perspective, and they experienced difficulties consistently answering from their own

perspective. Participants commonly reported their awareness of their partner’s viewpoints and

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ability, for example: ‘the biggest frustration from her point of view is her lack of independence’

or ‘she does what she can.’ Husbands wanted to do something practical to make life easier e.g.

converting the garage to a bedroom, or building a bathroom downstairs to make it safer for their

partner (by reducing the risk of falls). Although one husband acknowledged the stress it caused

him trying to protect his partner from harm, whilst maintaining her independence:

I have to be careful in making sure she doesn’t feel like a disabled person. It’s her pride. When

she goes gardening, she’s full of bruises on her knees, she gets a splinter in her finger and I’m

thinking it’s going to take weeks to heal and a course of anti-biotics all because she won’t wear

gloves! Husband 6

Anxiety was a major factor for participants; the main concern was how to ensure the wellbeing

of their partner was maximised. Participants were anxious that their partner may have a further

relapse as they all remembered the suddenness and devastation from the first attack and were

concerned how they would cope with further disability. Husbands worried more about visual

loss as they perceived this would cause a greater loss of independence to the partner than

impaired mobility where practical help such as physiotherapy could be given. In addition

participants reported anxiety regarding their own health was an issue, particularly if something

happened to them and they were unable to look after the partner.

I would love to work full time, but I only work 4 hours per week and think I can’t because she

might have a relapse, but it’s not happened yet, but I can’t help thinking about it as you never

know when an attack is going to come. Husband 5

I’m worried if she gets worse and then starts suffering, that’s my worry because I promised to

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look after her and I want her to stay healthy and try to make her as happy as I can.’ Husband 3

Participants acknowledged they cut down on their own activities and commonly reported they

had no time for themselves and could never ‘switch off’. Husbands chose hobbies that were

flexible such as going to the gym, DIY, karate, football and could do when they felt it was safe to

leave their partner for a short time. Wives did not report hobbies as such, but socialised with

friends and went shopping where possible. They reported they would have liked a holiday, but

the anxiety and pressure in organizing it was not worth the gain, particularly as they often felt

stressed or guilty going on a shopping trip or away for a day.

You never leave it behind, if I go out I have to arrange for someone to check in on him, have to

keep my phone on, never off duty. It’s like having a baby its 24hrs. You’ve got to plan ahead, you

can’t just say let’s go out, nothing is spontaneous. Wife 5

In summary, participants feel their wellbeing is interconnected with the wellbeing of their partner

and experience substantial anxiety regarding their partner’s current and future health and

independence. Spouses may struggle to prioritize their own needs, within a relationship centered

on the health of their partner.

Quality of life

Quality of life (QoL) for participants was dictated by their partner’s current health status and

frequency and severity of NMO relapse and symptoms. Participant QoL was therefore poorer

during relapse and the acute rehabilitation phase, as the needs of their partner were paramount.

As their partner improved, physically and psychologically becoming more independent, QoL

improved for participants as they had more freedom and began to feel in control of their

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situation.

(To improve QoL) ….for husband to stay as he is now, because when he can get around, he is a

lot better, I find it helpful that people are now helping him. Wife 4

A better QoL, obviously is dictated by her illness and consistent pattern of illness. If she could be

pain free, pain is a big problem, she’s on a lot of painkillers and they have got side effects and

compounded with that there’s variation in the NMO itself. If unpredictability could be taken

away and we could have a solid 2weeks that would improve my QoL. Husband 4

Conversely, factors that reduced spouses’ QoL included the unpredictability of NMO,

fluctuations in daily physical symptoms, and fluctuations in partners’ mood.

The circle of being tired all the time impinges on your social life and QoL. I’m hoping that

sometime in the future someone will find a cure for the bladder and then life would be easier.

Husband 2

Questionnaires Findings

72% (54/75) spouses (37 male and 15 female) returned the ZBI and HADs questionnaires (as

demonstrated in Table 2).

Insert Table 2 here

Within this sample the majority of participants 54% (29/54) indicated they did not experience

carer burden, 76% (41/54) indicated no depression and 41% (22/54) were not anxious. However

59% (32/54) of participants indicated mild or moderate anxiety, 46% (25/54) mild/moderate

carer burden and 24% (13/54) indicated mild/moderate depressive symptoms. No partners

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indicated they were severely affected by carer burden, depression or anxiety symptoms.

The main questions from the ZBI questionnaire that indicated partner burden were ‘are you

afraid what the future holds for your relative?’ with 44% (24/54) answering ‘frequently’ or

‘nearly always’, and a further 33% (18/54) answering ‘sometimes’.

The questions that reflected a difference between male and female were:

A) ‘Do you feel your relative is dependent upon you?’ 47% (7/15F) compared to 38% (14/37

M) answered frequently, suggesting that more wives perceived their partners as

dependent on them, more than husbands.

B) ‘Do you feel you could do a better job in caring for your partner?’ 6% (1/15F) compared

to 11% (4/37 M), suggesting that overall only low numbers of both wives and husbands

felt they could do a better job in caring for their partners.

Discussion

This exploratory study investigated the lived experience and wellbeing of husbands/wives of

partners with NMO, with the hope of identifying areas for intervention. The findings suggest that

they complete daily caregiving tasks and may struggle to prioritise their own wellbeing, in the

face of their partners’ substantial disability, anxiety regarding future deterioration, and

experiences of unresponsive health care services.

Combining multiple methods of data collection provided a broader exploration of spouses’ lived

experience and wellbeing. The different methods complemented each other but fulfilled different

functions; the semi-structured interviews provided an in-depth subjective understanding of the

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experience, whilst the questionnaires allowed a quantitative examination of wellbeing in a larger

sample of individuals living with partners with NMO.

Adapting to caregiving was a long arduous journey made more difficult in NMO due to the ever-

present worry of a further disabling relapse. Findings were similar to that in traumatic spinal cord

injury; Elliot [11, 22] in that during the acute event (relapse), spouse’s concerns were focused on

their partner’s survival, however as time passed the realization of the consequences and impact

of disability became apparent. This suggests that the support needs of spouses may change over

the progression of time and disability. In the initial stages spouses may benefit from practical

support in developing management techniques for physical care needs and potentially respite.

Spouses in this study had experienced a median time of 2.3 years since their partners last relapse,

therefore it was possible that they had adapted to physically managing NMO. As their partners’

physical condition stabilised it appeared these spouses would now benefit more from

psychological support to aid them in adapting to uncertainty and a change in expectations for

life. Including people whose spouses have a recent illness onset or are currently experiencing a

relapse may uncover different themes, and this requires further investigation to improve service

provision.

Previous studies suggest that spousal caregivers are vulnerable to burnout syndrome where they

commonly experience stress and a reduction of life satisfaction [4, 6, 7]. However, this study

found no partners indicated they had severe burden, anxiety or depressive symptoms. Findings

from the qualitative data suggest this may be because participants view caregiving as part of a

normal spousal relationship, and may not interpret ‘dependency’ as ‘burdensome’. The

Department of Health (DH) and Government bodies in the United Kingdom have recognised the

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important role of informal carers [23, 24, 25], and identified that husbands/wives/partners often

do not regard themselves as carers. This must be taken into account in the way professionals

screen for people requiring support, and the terminology they use when providing support. There

are now recommended UK guidelines emphasizing the need for carer assessments to identify the

particular psychological, emotional or physical support that may be required to ensure their

health and wellbeing [23, 24, 25].

Findings indicated gender differences in caregiving experiences; husbands tended to be

protective of their partner’s emotional and physical wellbeing, whilst wives promoted their

partners’ independence and autonomy. These gender differences are important to care provision,

by suggesting that the focus of supportive services may need to be tailored to the spouse’s

perspective and priorities (i.e. protection versus autonomy), potentially in line with spouses’

cultural norms.

Participants in this study communicated how they cared for their partner on a daily basis, yet

were generally ignored/not listened to by health care professionals; a commonly acknowledged

problem for all carers [4, 11, 24, 25]. Consultation with spouses would ensure that services and

resources met their needs and individual circumstances and that their opinions and caregiving

experiences are valued. Increasing spouses’ skills and confidence in managing the physical and

emotional impact of NMO may also help to lessen their anxiety. This may enable spouses to be

able to prioritise their own needs and increase the perceived balance in their relationships with

their partner with NMO.

Study limitations

This study reports qualitative findings from a small sample of partners of people with NMO in

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the North West. Whilst data saturation was reached, further research is needed to investigate how

these findings apply to a broader sample. Participants opted in to the study, therefore there may

have been a selection bias, where participants who were experiencing symptoms of depression or

felt they were not coping effectively may not have returned the questionnaires (despite the high

response rate). Future research would benefit from following families longitudinally through

their illness journey, to investigate how their support needs and experiences change over time.

In conclusion, these findings hold positive implications for families with a recent diagnosis of

NMO, by suggesting that partners may maintain good psychological wellbeing despite the

significant challenges they face. For this sample, the concept of ‘burdened’ spouses was not

applicable although there was clearly substantial anxiety and emotional strain around the

uncertainty of future relapses and subsequent disability. Healthcare professionals should be

aware of the psychological and physical impact of caring for a partner with NMO and offer

responsive multidisciplinary support, which involves spouses in the care planning process.

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Recommendation for Practice

NMO has a strong impact on couples, resulting in both physical caregiving needs and

anxiety regarding the unpredictability of potential devastating relapses.

Partners do not necessarily experience clinically significant ‘burden’, anxiety or

depression and tools which screen for this may not capture the nature of their experiences

Health care professionals need to acknowledge, consult and respect the experience of

partners during assessment and implementation of action plans.

Partners should be individually assessed based upon the physical and emotional

dependency created by NMO to improve their health and wellbeing.

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Acknowledgements

A special thank-you to all the participants for their time and honesty during the interviews.

Thanks to Chris Manley for her support. Thank you to Maureen Kelly, Deborah Morris,

Rona Bryce, Tanya Bennett-Freeman for their comments on this manuscript.

Declaration of interest

The authors report no conflict of interest. The UK NMO Service is funded through the

Specialist Services of the National Health Service, England.

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references

1. Wingerchuk DM. Lennon VA. Pittock SJ. Et al Revised criteria for NMO. Neurology 2006; 66:1485-1459.

2. Cabrera-Gomez M. The incidence and prevalence of NMO. Int. J.of MS care 2013 15(3);113-118

3. Jacob A, Panicker J, Lythgoe D, et al. The epidemiology of neuromyelitis optica amongst adults in the Merseyside county of UK. J Neurol 2013; 260:2134–7.

4. Matheson L. Harcourt D. Hewlett S. ‘Your whole Life, Your whole World, It Changes’ Partners’ Experiences of Living with Rheumatoid Arthritis. Musculoskeletal Care. 2010 Mar; 8(1):46-54.

5. Mutch K. In sickness and health: experience of caring for a spouse with MS. British J. Nursing (2010) 19(34); 214-219.

6. AKKUS Y. Multiple sclerosis patient caregivers: the relationship between their psychological and social needs and burden levels. Disab+Rehab, 2011; 33(4): 326– 333.

7. Buchanan RJ. Huang C Health-related quality of life among informal caregivers assisting people with multiple sclerosis. Disab+Rehab, 2011; 33(2): 113–121

8. Boland P. Levack WM. Hudson S. Bell EM. Coping with multiple sclerosis as a couple: 'peaks and troughs' - an interpretative phenomenological exploration. Disab+Rehab 2012;34(16):1367-75

9. Kouzoupis AB. Paparrigopoulos T. Soldatos M. Papadimitriou GN. The family of the multiple sclerosis patient: A psychosocial perspective. Int. Review of Psychiatry, February 2010; 22(1): 83–89

10. Dickson A. O'Brien G. Ward R. Allan D. O'Carroll R. Adjustment and coping in spousal caregivers following traumatic spinal cord injury: An interpretative phenomenological analysis. J. Health Psychology 2011;17:247-57

11. Conti A. Garrino L. Montanari P. Dimonte V. Informal caregivers’ needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences. Disab+Rehab 2016;38(2):159-167

12. Mutch K. Methley A. Moore P. Jacob A. Life on Hold. The experiences of living with

neuromyelitis Optica. Disab+Rehab 2014; 36(13):1100-7 13. Sandelowski M. Focus on qualitative methods: Sample size in qualitative research.

Research in Nursing and Health 1995; 18:179-183.14. Novak M. Guest C. Application of a multidimensional Caregiver Burden Inventory. The

Gerontologist 1989; 29, 798-803.15. Seng BK1, Luo N, Ng WY, Lim J, Chionh HL, Goh J, Yap P Validity and reliability of

the Zarit Burden Interview in assessing caregiving burden. Ann Acad Med Singapore. 2010 Oct; 39(10):758-63.

16. Zigmond, AS; Snaith, RP. "The hospital anxiety and depression scale". Acta Psychiatrica Scandinavica 1983; 67(6): 361–370.

17. Jump up^ Bjelland, I; et al. "The validity of the Hospital Anxiety and Depression Scale. An updated literature review". J.of Psychosomatic Research, 2002; 52 (2): 69–77.

18. Boeje H. A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Qual Quant 2002; 36: 391–409.

19. Ritchie J, Lewis J. Qualitative research practice. A guide for social science students and 23

1

researchers. London: Sage; 2007.20. Strauss, A. L., Corbin, J. M. Basics of qualitative research: grounded theory

procedures and techniques. Sage: London, 1990.21. Lincoln, YS. & Guba, EG. Naturalistic Inquiry. Newbury Park, CA: Sage; 1985.

22. Elliott TR. Berry JW. Richards JS. Shewchuk RM. Resilience in the initial year of caregiving for a family member with a traumatic spinal cord injury. J.of consulting and clinical psychology

23. DH. Carers at the heart of 21st-century families and communities “A caring system on your side. A life of your own.” Department of Health London 2008

24. DH. Carers strategy action plan 2014-16. Department of Health London 201225. Carers UK. Carers right guide to looking after someone. Carers UK. London 2016

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Figure 1. A thematic map of identified themes and their relationships in the lived experience of

partners of people with NMO.

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Table 1. Participant characteristics.

Participant No

Gender Ageyear

Years Married

Years from partners 1st symptoms

Time sincepartners last relapse

ClinicalManifestation of partner

ClinicalPresentation of partner

1 Wife 60 38 10 16m Myelitis Mobility uses stick2 Wife 74 52 34 34yrs Optic Neuritis Complete visual loss

Both eyes3 Wife 61 43 21 12yrs Myelitis Mobility uses crutches4 Wife 46 22 5 2yrs Myelitis/ON Wheelchair dependent/

Pain/ vision impairedBoth eyes

5 Wife 54 31 3 3yrs Myelitis Wheelchair dependent/ Pain

1 Husband 38 10 6 3yrs Myelitis/ON Mobility varies/ Pain/Vision impaired one eye

2 Husband 54 23 8 5yrs Myelitis/ON Wheelchair dependent/ Pain vision impaired both eyes

3 Husband 54 21 2 1yr Myelitis/ON Mobility uses stick, Pain/vision impairedone eye

4 Husband 45 12 18m 18m Myelitis/ON Mobility limited / Pain Vision impaired both eyes

5 Husband 43 6 4 4yr Optic Neuritis Vision impairedboth eyes

6 Husband 58 24 5 18m Optic Neuritis Complete visual loss both eyes

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Table 2. Zarit Burden Carer Scale and Hospital and Anxiety and Depression Results.

Burden N=54 Depression N=54 Anxiety N=54

No burden 21M: 8F (54%) No depression 29M: 12F (76%) No anxiety 17M: 5F (41%)

Mild 14M: 8F (41%) Mild 5M: 2F (13%) Mild 12M: 9F (39%)

Moderate 2M: 1F (5%) Moderate 4M: 2F (11%) Moderate 8M: 3F (20%)

Severe 0M: 0F Severe 0M: 0F Severe 0M: 0F

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