Patients in focus awards 2009

Julie TaylorJulie Taylor

Background

Providing care for a newborn baby or toddler is a challenge to all new mothers, with changes to lifestyle, self-esteem and roles. Add to this the daily difficulties of living with a chronic illness and the result is a greater set of needs and demands. For young women with Rheumatoid Arthritis (RA) extra need may arise at several points: when a wish to become pregnant is determined, during pregnancy, after the baby’s birth and for the first few years of the baby’s life. At these points the impact of RA on life is magnified and accentuated, creating a very specific set of extra needs.A Norwegian study (1997) highlighted the absence of support and communication in this specific group of women, showing that in a group of 57 patients, those with RA described the most functional problems. The study suggested that support groups and networks may improve the patients’ ability to develop strategies of coping and may even help mothers with RA to reduce their own, often-unrealistic, expectations of motherhood.

The Problem

In 2005 I was asked to educate a young mother about methotrexate, a simple enough task except that with her in clinic were her three pre-school children. The clinic environment was neither appropriate nor the room big enough to give this mum the time and care that was needed.

This prompted me to consult further with patients. An informal verbal survey of 20 mums attending outpatients identified a number of problems:

  • An awareness of the need for education 
  • A reduction in support networks (changes in society, with families living distances apart) 
  • Childcare seemed to be considered essential for consultant reviews but for other healthcare contacts (physiotherapy, education sessions and so on) Mums perceived childcare to be a luxury they could ill afford. Reasons for this included cost, lack of familial support, availability or the perceived need to keep this support for “emergencies” 
  • Practical difficulties of handling babies due to arthritis

The Solution

1. Social isolation

A desire was expressed to meet other mums in a similar situation, to discuss problems, to gain support and to reduce the isolation that these mums were feeling.

A mums and toddler day was set up, based at a local community center. The center was chosen due to location, its ample parking, lack of stairs, with a large playroom and separate boardroom for the education session. The theme was “Getting the best from your consultation.” I (nurse specialist) ran the day with help from a rheumatology OT and a Specialist Registrar. A crèche, run by qualified staff, was provided for children from 18 months to Pre School age.

The result was an informative day in a secure safe environment. The group evolved from, at the start, a quiet polite group of Mums to a firm, proactive support group, which has grown in both friendship and numbers. Positive responses were gathered by a post evaluation of the education day, they were wide ranging from practical to immense relief, summed up by the youngest mum of the group

“I can’t believe that I’m not the only one to feel guilty about what I can’t do, that I’m normal. The relief that I’m not the only one… I can’t tell you what that means”

The group now meets every 6 weeks, normally in a pub or restaurant. I join the group at alternate meetings. The group not only supports each other, but they report reduced feelings of isolation, improved practical knowledge and a proactive role in keeping the needs of the patients paramount when planning developments in the rheumatology service. Patient participation is essential if the service is to be developed to meet the needs of the users. A survey of this group showed that they felt gaps within the service and within their needs.

2. Lack of literature

One gap highlighted by this group was the lack of written information. There is no literature available for new mums or mums that are newly diagnosed to help them.

A leaflet was produced “Tips for Mums” with one of the mums. The leaflet was taken back to the group to be evaluated and then revamped accordingly. This was taken to the trust for distribution across the out patients settings; this has been updated in January this year in line with Trust Policy.

3. Lack of self esteem

Time and time again the theme of self-esteem was raised, the lack of confidence apparent in being a mum, the changes in body images, the support that the group gain from each other is paramount.

In conjunction with the local College of Health and Beauty we run biannual Pamper Days. This consists of a morning of demonstrations from qualified therapists: Reikki, Indian head massage, reflexology, and the afternoon sampling different types of massage. This gives the mums the chance to try different types of alternative therapies in a safe environment without having to explain about their condition. A good summary of the effect of this came from one young mum who said (in tears):

“For the first time since the RA started…not only do I feel normal, but I feel I should get a babysitter as I feel good enough to be taken out by my husband”.

As a health care professional we often forget the social impact of this long-term condition.

The Future

The group goes from strength to strength and has expanded to include newly diagnosed patients and patients wanting to get pregnant, as well as post natal mothers. All members of the multi disciplinary team can refer any patient from the Trust to the group. A group member or nurse then contacts them; they are actively encouraged to try one session. As going into an unknown group is daunting when you feel well, there is always an option to get a lift or meet one member before. The last education session was around the anti-TNF therapies as requested by the mums, the next session has been prompted by the nurse to work on a new leaflet with the parents and their children to provide a booklet for children whose parents have arthritis

The group itself determines needs, psychological, educational, and social, and the Rheumatology Team is their resource. It is a two-way partnership which I believe represents a response to a major need, previously unfilled.

Reference:
Ostensen M & Rugelsjoen A, (2007) Problem Areas of the Rheumatic Mother. American Journal of Reproductive Immunology 28: pgs 254-255

Feedback from the Mums and Toddler Day

A questionnaire was distributed to all mums who attended the first education session. There were 10 completed questionnaires returned, out of a possible 12.

Practical Issues

Q1: Were the directions easy to follow?

Yes: 10

Q2: Were you comfortable in the room we used for the education session?

Yes: 10

Comments included:

The room got a little hot

It was nice to be away from the hospital


Q3: Did you have any problems parking?

No: 10

About the session:

Q4: Did the session meet your expectations?

Yes: 10

Q5: Was there anything that you felt should have been covered that was missed out?

No: 8 Not sure: 2

Q6: Any comments that you would like to add about the session?

3 people would have liked it longer

1 person said she would have liked to have been offered this when she was first diagnosed.


Overall

Q7: Would you do it again?

Yes definitely: 8 Probably: 2

Q8: Is there any thing that we could have done differently to improve the day?

Comments included:

Can we have the next one on a different day as I work Wednesdays normally?


Perhaps the location could be nearer the hospital next time.

I struggled to get here with the children by 10, could we make it later next time please.

My kids had a great time


Please feel free to make any comments:

“It was great to meet others who were in the same boat”

“Thank you, Thank you; please can we do it again”

“I really enjoyed the day, it was good fun and informative, and the cream cakes were a bonus!”

“The thought that there are people like me, just normal people, my age, with my problems, but they’re not just my problems are they? Other people struggle in the same way”

“Everyone was so easy to talk to”

“I can’t believe that I’m not the only one to feel guilty about what I can’t do, that I’m normal. The relief that I’m not the only one… I can’t tell you what that means”

“I picked up some great tips”

Click here to for Julie's 'Tips for Mums' in the 'Pregnancy & parenthood section of the website