Dr Chloe Parton

Recipient: Dr Chloe Parton
Intended department: Centre for Health Research- Western Sydney University- Funded by Chris Barrie et al
Project:

 

Motherhood and Living with Rheumatoid Arthritis

 

RA-related information, in addition to standardised measures of RA symptom severity, the physical and psychological impact of RA, difficulty associated with parenting activities due to RA, parenting stress, and health-related quality of life.  Twenty women were also purposively sampled across child age and RA severity (using standardised measures) to participate in in-depth one-to-one interviews. The interviews covered how RA had influenced the women’s experiences of motherhood and caring for children; self-care practices in which the women engaged; and experiences of support.

 

In the analysis of quantitative survey data, we found that regardless of whether children were younger or older, greater difficulty with parenting activities contributed to lower health-related quality of life in mothers with RA, in addition to higher RA symptom severity and greater impact on physical and psychological functioning. In qualitative interviews, women gave accounts of additional burden and complexity in their mothering role due to RA. Reports of distress were also given across child age that were associated with accounts of loss of control over mothering practices due to RA. This included reports of feelings of failure at not being able to be the kind of mother the women wished to be. In contrast, accounts of adjusting mothering practices and relinquishing control were associated with reports of wellbeing. Some women also reported experiencing greater ease as a mother due to the increased independence of older children compared to when they were younger. Across the qualitative interviews, social support was described as reducing burden and distress, while the absence of support exacerbated the burden of RA on mothering. It is suggested that healthcare practitioners and community organisations can support mothers with RA by addressing feelings of failure, acknowledging coping strategies of adjusting and letting go, and encouraging greater access to social support. The findings from this study extend those from previous research on the psychosocial impact of RA by suggesting it is important to consider motherhood in understanding women’s experiences of wellbeing while living with RA.

There has been a lack of research which has addressed women’s experiences of wellbeing as mothers while living with RA. In addition, few studies have included mothers with children across a range of ages. Previous research has focused on early motherhood and women’s decision to become a mother. Furthermore, mothering practices and identities are influenced by a woman’s social context that informs experiences of mothering. In previous research, women have reported accommodating actions of limiting contact or withdrawing from children because of RA, which are at odds with cultural expectations that women take up intensive styles of motherhood, including spending time with their children.  Few studies have examined the impact of RA on mothers’ wellbeing. In addition, there is little evidence examining how women subjectively experience motherhood when living with RA, including how they negotiate coping strategies in relation to social expectations of mothering. The aim of this research was:

  1. To examine the experience of health-related quality of life amongst mothers who are living with rheumatoid arthritis
  2. To identify how women with rheumatoid arthritis subjectively experience motherhood and their concerns and unmet needs.

This study is important for providing an evidence base for understanding how rheumatoid arthritis can impact on women’s experiences of motherhood across a range of child ages.

Over the course of the research we found that mothers’ health-related quality of life was associated with reports of greater difficulties with parenting activities, in addition to higher RA symptoms and higher psychological and physical impact from RA. This finding was identified across women with children of all ages. This means that it is important to consider motherhood in understanding the impact of RA on women’s health-related quality of life.

In qualitative interviews, women described experiencing considerable burden and additional complexity as a mother due to RA. Reports of distress were also given across child age that were associated with accounts where there was a loss of control over mothering practices due to RA. This included reports of feelings of failure at not being able to be the kind of mother the women wished to be. In contrast, accounts of adjusting mothering practices and relinquishing control were associated with reports of wellbeing. This meant developing a ‘new normal’ in how parenting activities were carried out, as well as letting go of some standards, such as cleanliness or assuming primary responsibility for the raising of children without support. Some women with older children also reported experiencing greater ease as a mother due to the increased independence of their children compared to when they were young. Social support was described as reducing burden and distress, while the absence of support exacerbated the burden of RA on mothering

The findings from this study will inform future research and support for mothers with RA in the following ways:

  1. By providing evidence for the importance of considering the influence of motherhood in shaping women’s experiences of wellbeing while living with RA.
  2. .The findings suggest that it is important to consider women’s feelings of failure and associated experiences of distress when unable to be a mother as they would like due to RA
  3. It is important to acknowledge the coping strategies that women are using to adjust their mothering practices and let go over some aspects of their role, such as doing it all by one’s self.
  4. The study provides preliminary evidence which suggests that addressing social support, may assist women in coping by alleviating the burden of mothering with RA.
  5. The use of qualitative methods, as part of a mixed method design, can provide critical in-depth knowledge of subjective experiences of motherhood amongst women with RA.

Funding is currently being sought to examine women’s experiences of social support as mothers with RA. An emerging theme of social support was identified in qualitative accounts, in which support was described as alleviating the burden of RA on mothering. This was associated with reports of greater wellbeing. However, there exists an outstanding need for research that examines in detail the relationship between support and wellbeing amongst mothers with RA. This includes the difference types of support that are beneficial to wellbeing, and the unique challenges experienced by mothers with RA to accessing that support. New research has been planned to address this gap. Findings will identify how women can further leverage support from their networks to facilitate their coping and wellbeing. These findings can be used by heath care professionals and support organisations to encourage and normalise access to effective and appropriate forms of support for mothers with RA.