Arthritis, Parenting and Household Work: Part 2

Description of Project

Arthritis symptoms like pain and fatigue affect many roles in life. This study described the impact of inflammatory types of arthritis on the performance of parenting tasks and household work in mothers with and without arthritis.

By “inflammatory arthritis” we mean conditions like rheumatoid arthritis, lupus, ankylosing spondylitis, and juvenile idiopathic arthritis. Parenting tasks change as children age, so we studied mothers who have children from infants to young adults (birth to mid-20s).

Why Do This Research?

According to Statistics Canada, approximately 65% of women are mothers with children at home. There is very little research on the effect of arthritis on the role of mothers, although some studies of mothers with disabilities (including arthritis) have identified physical limitations caring for young children, such as bathing or carrying children, or manipulating small items like buttons or hair ribbons when helping children dress. One of our previous studies on participation in paid and unpaid work demonstrated that one-third of women with arthritis 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 builds on the existing knowledge, but also works towards identifying:

a) What predicts parenting and household work disability?
b) What solutions can we use in health, rehabilitation and social service programs to assist mothers with challenges in parenting and household work?

Results will also help us plan future studies related to arthritis and parenting, for example, with fathers who have arthritis.

What Were the Important Findings?

In the interview study, we gathered rich descriptions of the occupation of mothering. There is a careful balance of fatigue and energy involved in caring for children that is complicated by the fatigue that comes with arthritis. Mothers experienced different kinds of support, both positive and negative, from family, friends and health care providers. The main finding was reflected in the statement “Sometimes I can, sometimes I can’t” which was used to describe the difficulties and problem-solving strategies mothers used to participate in the everyday tasks of motherhood.

In the survey study, we found that women with arthritis experienced just as much satisfaction in their identity and role of mother as did women without arthritis. This occurred despite a range of difficulties reported when performing parenting tasks like dressing or carrying children, and engaging in school or club activities on behalf of their children.

All mothers experience fatigue, but the severity and frequency of fatigue experienced by mothers with arthritis was much greater than those without arthritis. The emotional health status was similar in the two groups (with and without arthritis), but mothers with arthritis reported more limitations in their physical health. Mothers without arthritis were more likely to be employed: 79% of mothers without arthritis were doing paid work compared to 59% of mothers with arthritis. Consequently, it was not surprising that the household income for families of mothers without arthritis was higher than for families of mothers with arthritis. Mothers with arthritis may have fewer financial resources available in terms of household help.
Two key messages from this study:

1. mothers with arthritis are just as satisfied in the parenting role as mothers without arthritis, despite some physical difficulties caring for children
2. “being” a mother (one’s sense of identity as a mother) is distinct from “doing” motherhood tasks

Study findings will be used to inform occupational therapy, rehabilitation, and social services aimed at helping people with arthritis do the everyday tasks that are important to them – in this case, parenting. Findings will also inform a new study on fathers, where we can compare experiences of men and women in parenting with arthritis.

Who Participated in the Study?

In the first part of the study, we conducted in-depth interviews with 12 mothers with arthritis. In the second part of the study we surveyed 352 mothers (190 with arthritis and 152 without any chronic illness). All mothers had at least 1 child under 21 years of age living at home. We recruited mothers through arthritis out-patient clinics, rheumatology (arthritis specialists) offices, and an arthritis consumer group web site. We recruited mothers without arthritis by asking mothers with arthritis to share a letter of invitation with friends, by notices in community newspapers, employment and community centre bulletin boards, and word of mouth.

Most of the women in the arthritis group have rheumatoid arthritis (58%). 15% have psoriatic arthritis, 13% ankylosing spondylitis, 4% juvenile idiopathic arthritis and 3% lupus.

How Was the Study Done?

The interview study involved personal interviews with mothers who have arthritis, asking questions about a typical day, how they cared for their children, and their perceptions of the impact of arthritis on the family. This helped to identify questions to include in the survey with a large group of mothers with and without arthritis.

The survey study involved mailing the questionnaire to mothers with and without arthritis. There were questions about parenting tasks, parenting satisfaction, household work, physical and emotional health status, fatigue, family quality of life, and demographic characteristics (age, household composition, education).

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. She assisted with everything from recruitment and composition of study questions, to helping us share the findings. Mrs. Montie reviewed the project outline, wrote a letter of support and gave feedback in the survey development.

Who Helped Pay for the Research?

This research has been funded by the American College of Rheumatology Research and Education Foundation through a Health Professional Investigator Award.

Publications / Presentations

1. 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.
2. 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).
3. 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.
4. 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).
5. 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, BC. Abstract printed in Canadian Journal of Occupational Therapy, 72, (Conference Supplement).
6. Backman, C.L, Del Fabro Smith, L., Chalmers, A., Montie, P., Lacaille, D., (2008, April). Participation outcomes: Measuring performance of parenting tasks, parenting efficacy and parenting satisfaction. CARE V Conference on Multidisciplinary Care for People with Arthritis, Oslo, Norway.
7. Backman, C.L., Chalmers, A., Montie, P. & Lacaille, D. (2009, October). Parenting experience of mothers with and without inflammatory arthritis. Association of Rheumatology Health Professionals Annual Scientific Meeting, Philadelphia, PA.
8. Backman, C., Lehman, A., Montie, P. & Lacaille, D. (2010, May). Fatigue and occupational engagement in mothers with and without arthritis (abstract). Canadian Association of Occupational Therapists Annual Conference, Halifax, NS.

Other conference presentations related to this study are:

• Backman, C., Gignac, M., Badley, E., Davis, A., Koehn, C., Lacaille, D., Mattison, C. & Montie, P. (2006, June). Participation: A conceptual framework to guide research. Paper presented at the Canadian Association of Occupational Therapists, Montreal.

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. (in press). Enabling performance and participation for persons with rheumatic diseases. In C.H. Christiansen, (Ed.), Ways of living: Enabling participation in daily life (4th Edition). Bethesda, MD: AOTA Press. In production for 2010 release.
• O’Brien, A. & Backman, C. Rheumatoid arthritis. (2010). In K. Dziedzic and A. Hammond (Eds.), Rheumatology: Evidence-based practice for physiotherapists and occupational therapists, pp. 211-233. Edinburgh: Churchill Livingstone Elsevier.

Team Members

Principal Investigator

Catherine Backman  PhD
Research Scientist, ARC

Associate Professor
Department of Occupational Science & Occupational Therapy
University of British Columbia

Collaborators

Andrew Chalmers, MD
Rheumatologist & Professor, UBC Dept of Medicine

Diane Lacaille MD, MHSc, FRCPC
Rheumatologist & Research Scientist, Arthritis Research Centre
Associate Professor, UBC Dept of Medicine

Allen Lehman, PhD
Research Associate, ARC

Pamela Montie
Consumer Collaborator, Consumer Advisory Board, ARC

Melinda Suto, PhD
Assistant Professor
UBC Department of Occupational Science & Occupational Therapy

Research Staff who helped with different stages of the study:

Linda Del Fabro Smith, BSc (OT), MSc (graduate student at time of study)

Sharon Smith, PhD (graduate student at time of study)

Katie (Rogers) Adam, ARC Summer research assistant

Lisa Singh, ARC Research Secretary