The Ups & Downs of Arthritis and Motherhood
Description of Project
The purpose of this project was to gain an in-depth understanding of the impact of inflammatory arthritis on mothers. Mothers with inflammatory arthritis described how they performed mothering tasks and household work, and simultaneously managed their arthritis symptoms.
This was a qualitative study. That is, instead of using numbers and statistics to describe participation in mothering tasks, detailed stories were analyzed to look for common themes that explain the experiences of mothers with arthritis.
Why Do This Research?
Arthritis symptoms have an impact on many important life roles, including parenting and household work. One of our previous studies on participation in paid and unpaid work demonstrated that one-third of women who identified “mother” as their main form of work reported limitations in doing the tasks necessary to be a mother.
Parenting activities, like listening, comforting, and teaching children, are often done concurrently with household tasks like planning meals, cooking, laundry and shopping. For this reason, we think it is important to simultaneously study motherhood and household work, rather than separating them into two different areas of study.
This study answered the question: What is the impact of inflammatory arthritis on the role of mother?
It is the first step in identifying the issues mothers with arthritis report as important for further study (see our Arthritis, Parenting and Household Work 2 description for a larger study currently underway). Results will help develop more effective interventions for mothers living with chronic inflammatory arthritis, or document the need for specific kinds of services.
There is an economic impact on families and society if women cannot fulfill mothering and household work roles, and psychosocial implications that may subsequently affect well-being if not appropriately addressed. Many women struggle with competing demands from paid employment and family demands associated with motherhood and household work. Some of this has been addressed in the “work-life balance” discourse, but it is limited to the general (healthy) population, and not specific to those living with a chronic illness. This study contributes to the ongoing dialogue about work-life balance, use of health and social services, and integrating some of these issues into strategies for improving health of mothers with arthritis and their ability to fully participate in daily life, particularly in the role of parent.
Who Was Studied?
Twelve mothers, aged mid-20s to mid-50s, with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, juvenile idiopathic arthritis or lupus participated. This was a “purposive sample” aimed at involving a range of mothers: Half were employed. Some were mothers before they were diagnosed with arthritis, some had arthritis before becoming mothers. The sample included single, married, and re-married mothers; birth, adoptive, and step-mothers. Families lived in rural and urban locations, representing a range socio-economic status, and different family sizes (1-6 children) and children’s ages (3 months to 26 years).
How Was It Done?
Participants were interviewed in-depth about their experiences in caring for their children and managing their household. Interviews were audio-taped and data analysis involved careful review of the tapes to identify the most important issues to the mothers. Verbatim quotes from interviews support the main ideas (themes) arising from the mothers’ stories. This resulted in a theoretical framework to describe key issues that can be used to guide the planning of future research.
What Was Found?
Mothers identified many important issues, including:
- The huge impact of fatigue on their ability to participate in family activities. It is necessary to carefully balance energy and fatigue in order to participate in mothering tasks and household work.
- Different kinds and levels of support. Mothers needed practical, moral and professional support, and some of them received very little or ineffective support, while others benefited from a great deal of effective support from family, friends, and health professionals.
- The impact of arthritis on the family. Both undesirable and beneficial impacts were described. Some mothers experienced sadness, and reported that they did not permit their children to participate in certain activities, because of their arthritis. Others described how their arthritis played a part in raising sensitive, helpful, and independent children. Some women stated that arthritis was almost a blessing because it brought the family together more for quiet time and enabled them to focus on ‘being there’ for emotional support and guidance.
- The ups and downs of participation in mothering tasks and household work. For many, arthritis meant there was an inconsistency with which mothers are able to do tasks such as helping with homework, playing games, going on outings, and preparing meals. This was best described by one mother as Sometimes I can, sometimes I can’t. The results suggested at least 4 kinds of stories supporting this notion of sometimes I can, sometimes I can’t:
- This is how I do it and Figuring things out, which describes strategies or adaptations used to overcome limitations. One example was learning to hug a child without lifting or carrying, to the extent the child expects hugs or cuddling for affection and doesn’t ask to be carried, which accommodates mothers with pain and/or limitations in strength. Other descriptions included simple choices like zippered baby sleepers instead of snaps, and carefully planning shopping trips that accommodated a mother’s limited energy and mobility yet still enabled participation in the highly valued mother-daughter shopping.
- Frustrating times and I just couldn’t do it, which describes experiences of becoming frustrated with limitations holding a child, participating in school or sporting activities, and eventually giving them up, because the resulting pain wasn’t worth it, or the mother was physically unable to do the task.
The results may be of interest to:
- arthritis community groups
- parents with arthritis
- occupational therapists, physical therapists, rheumatologists, social workers
Were Consumers Involved?
Mrs. Pam Montie, a member of the Consumer Advisory Board of the Arthritis Research Centre, provided a consumer perspective to the project, and assisted with the composition and organization of interview questions. She also provided feedback on presentations and publications, to ensure the consumer perspective was maintained when sharing the study findings.
Who Helped Pay for the Research?
This research was funded by the American College of Rheumatology Research and Education Foundation through a Health Professional Investigator Award.
Publications / Presentations
The main results from this study are published in:
- Backman, C.L., Del Fabro Smith, L., Smith, S., Montie, P.L. & Suto, M. (2007). Experiences of mothers living with inflammatory arthritis. Arthritis & Rheumatism (Arthritis Care & Research), 57, 381-388.
- Results were also presented to many different groups, including:
- Backman, C., Del Fabro Smith, L., Smith, S., Montie, P. & Suto, M. (2007). “Sometimes I can, sometimes I can’t.” The influence of arthritis on mothers’ habits. Poster presented at the American Occupational Therapy Foundation Habits III Conference, Habits & Rehabilitation: Promoting Participation, Pala Alto, CA. Abstract printed in OTJR: Occupation, Participation & Health, (Habits Supplement).
- Backman, C.L. & Del Fabro Smith, L. (2006). Parenting and Arthritis. Round Table on Arthritis Research (ROAR), a community conference planned by the ARC Consumer Advisory Board, Vancouver.
- Backman, C.L., Del Fabro Smith, L., Smith, S., Montie, P.L. & Suto, M. (2006). The impact of arthritis on mothers. Paper presented at the Canadian Society of Occupational Scientists, 3rd Biennial Conference, Vancouver, BC.
- Backman, C.L. & Del Fabro Smith, L. (2005). “I’m not Like Other Mothers, and That’s Good:” Experiences of Mothers with Arthritis. Paper presented at the Association of Rheumatology Health Professionals Annual Scientific Meeting, San Diego. Abstract printed in Arthritis & Rheumatism, 52, (suppl).
- Backman, C.L. & Del Fabro Smith, L. (2004). The experiences of mothers with chronic arthritis. Paper presented at the Canadian Association of Occupational Therapists Annual Conference, Vancouver.
Other journal articles and conference presentations related to this study are:
- Del Fabro Smith, L. (2005). Mothers with Disabilities: Listening and Learning. OT Now, (Practice Magazine of the Canadian Association of Occupational Therapists), May/June.
- Backman, C.L., Kennedy, S.M., Chalmers, A. & Singer, J. (2004). Participation in paid and unpaid work by adults with rheumatoid arthritis. Journal of Rheumatology, 31, 47-57.
- Backman, C.L. & Mitchell, A. (2003). Perceived ability and satisfaction with unpaid work in mothers with rheumatoid arthritis (RA). Arthritis & Rheumatism, 48, (no. 9, suppl.), S427.
- Backman, C.L. & Mitchell, A. (2003). A day in the life of mothers with rheumatoid arthritis. Canadian Association of Occupational Therapists Conference Annual Conference, Winnipeg.
Textbook Chapters related to this work:
- Backman, C.L., Fairleigh, A., & Kuchta, G. (2004). Occupational therapy. In E.W. St. Clair, D.S. Pisetsky & B.F. Hayes, (Eds.), RA: Rheumatoid Arthritis, pp. 431-439. Philadelphia: Lippincott Williams & Wilkins.
- Backman, C.L. (2004). Rheumatic diseases. In C. Christiansen & K. Matuska (Eds.). Ways of living: Adaptive strategies for special needs, 3rd ed., pp. 185-205. Bethesda, MD: AOTA Press.
Catherine Backman PhD
Research Scientist, ARC
Department of Occupational Science & Occupational Therapy
University of British Columbia
Consumer Collaborator, Consumer Advisory Board, ARC
Melinda Suto, PhD
UBC Department of Occupational Science & Occupational Therapy
Dr. Andrew Chalmers, Dr. Diane Lacaille, and Ms Gay Kuchta are acknowledged for assisting with recruitment of study participants.
Linda Del Fabro Smith, BSc (OT), MSc Candidate
Sharon Smith, MCS, PhD candidate