Mothers With Physical Disability: Child Care Adaptations at Home

Parenting With Physical Disability

Until recently, society viewed women with physical disability as incapable of assuming the role of mother (DAWN–RAFH Canada, 2016; Rogers, 1996). Therefore, relevant literature is limited. One study of mothers with spinal cord injury (SCI) reported that their greatest difficulties involved taking their child to playgrounds, restaurants, and shopping malls and for walks; getting up at night with their child; cleaning and bathing tasks; and picking up after their child (Alexander, Hwang, & Sipski, 2001). In a qualitative study, Kaiser, Reid, and Boschen (2012) looked at the experience of parents with SCI and how they care for their children. Feelings of frustration and helplessness stemmed from physical barriers parents encountered, such as limited aids and adaptations and poor accessibility inside and outside the home that limited their involvement in child care and their opportunity to bond with their child (Kaiser et al., 2012).

Occupational Therapy and Mothers With Disabilities

Tuleja and DeMoss (1999) studied the effect of occupational therapy recommendations and interactions with parents with physical disabilities. Results showed that occupational therapy practitioners often approached the intervention with preconceived ideas regarding types of equipment and how a parent would use it, believing that mothers desired to be the sole care provider. However, they found that family dynamics are also important and that most mothers and families split baby care activities on the basis of schedules and ability to perform tasks. Other findings showed that occupational therapy practitioners’ deductive clinical reasoning and assessment of task demands seem to be influenced by how much experience they had working with and observing parents with physical disability. Reid, Angus, McKeever, and Miller (2003) used in-depth individual interviews to examine the experiences of female wheelchair users in their roles as homemaker and mother. They found that mothers with disability felt that their wheelchair liberated them, but they also noted that the women needed advocacy to secure home modifications and accessible housing.

The literature consistently identifies motherhood as an important role that presents many challenges for women with and without disability. Studies describing barriers and adaptations made by mothers with physical disability are limited, especially with regard to care of infants shortly after birth and the role that occupational therapy interventions can play in assisting these new mothers. Therefore, the research question for this study was, “How do women with disabilities experience motherhood, and what strategies do they incorporate to care for infants in the home environment?” Results from this study can inform occupational therapy practitioners on how best to collaborate with these clients to increase their successful participation in the mothering role.

Study Sample

Recruitment details are available elsewhere (Iezzoni, Wint, Smeltzer, & Ecker, 2015a). Briefly, we aimed to interview women with a preexisting physical disability who had a baby in the past 10 yr and had given birth at age 21 or older. Interviewees must have been using a mobility aid (e.g., wheelchair, crutches, cane) or have had significant difficulty using their upper extremities. We recruited 1 participant from our hospital’s obstetrical service and 1 participant through networking with disability advocacy groups. To find other women, we developed an IRB-approved flyer describing the study and then networked with local disability advocacy organizations and through social media (e.g., Facebook). Of our 22 interviewees, 20 were recruited through our social media contacts. Table 1 describes participants’ demographic characteristics.

Interview Protocol and Procedures

We designed a semistructured, open-ended interview protocol for this qualitative descriptive study. The interview protocol (available on request) covers eight topic areas: nature of disability and attitudes toward disability (Iezzoni, Yu, Wint, Smeltzer, & Ecker, 2014); attitudes toward pregnancy and disability (Iezzoni et al., 2015a); getting pregnant; reactions of family, friends, and strangers to the pregnancy (Iezzoni, Wint, Smeltzer, & Ecker, 2015b); pregnancy, labor, and delivery experiences, including complications and clinical care; physical accessibility of health care facilities (Iezzoni, Wint, Smeltzer, & Ecker, 2015c); overview of postpartum experiences; and sociodemographic characteristics. This article focuses on the women’s postpartum experiences, particularly how mothers with physical disability experienced caregiving for a new infant.

One researcher conducted all 22 telephone interviews, obtaining verbal informed consent before starting. Information about the woman’s age, years since most recent childbirth, and the nature of the woman’s disability was confirmed during the initial screening call. The interviews occurred from October 2, 2013, through December 16, 2013, and averaged roughly 2 hr. Participants received a $50 gift card. A professional transcription service produced verbatim transcripts of the digitally recorded interviews. We stored the interview data in password-protected computer files.

Analysis

We used conventional content analysis (Hsieh & Shannon, 2005) to identify major themes. We read the interview transcripts several times to become familiar with each participant’s response. On the basis of these reviews, we generated an initial list of topics to use in sorting the interview transcripts. Two researchers manually assigned topic codes to several texts in preparation for using NVivo software (Version 10; QSR International, Melbourne, Victoria, Australia) to sort the transcript texts. Each of us independently reviewed the sorted texts within topic areas to identify major themes; we reached consensus on themes through discussion. We addressed the trustworthiness of our results (Hsieh & Shannon, 2005) !through independent reviews of the transcripts by members of the study team and through the in-depth, extensive interviews, which reached thematic saturation by around the 17th interview (additional interviews had already been scheduled and were completed).

Night Care and Feeding

The majority of women had to adjust their sleeping arrangements to care for their child throughout the night. Most of the mothers coslept with their child or created a bed for the child adjacent to their bed, which made it easier to feed or change the baby in the middle of the night. According to Jennifer (Charcot-Marie-Tooth disease),

Bathing

Many women feared bathing their child because of safety concerns. Christine (spastic hemiplegic cerebral palsy) said,

Most of the mothers had other caregivers bathe the baby, including grandmothers, fathers, and personal care assistants. A few mothers cobathed, as did Lauren (osteogenesis):

Carrying

Infants obviously need to be carried. To perform that task, many women found that using a wrap or something similar (scarf, sweatshirt, belly binder, or carrier) to secure the infant to them was easiest. As the child grew, mothers had to change the way in which they carried the child. Becky (SCI) said,

A few women said their infants resisted being wrapped despite repeated tries. According to these women, their infants adapted to other ways of being carried or latched onto their arm, abdomen, or shoulder. Maureen (missing multiple limbs), whose son, Ethan, resisted the wrap, described his adapting to riding with her on her motorized wheelchair:

Furniture Modifications

Furniture barriers were common in homes, especially inaccessible cribs and changing tables. Most women adapted by changing their baby on the floor or bed. Some modified their furniture to improve access. A few women described their partners as good with carpentry projects; they proactively reassembled furniture or built items from scratch. Examples included creating space underneath the changing table to accommodate the knees of a mother using a wheelchair, making the crib door swing open so that a mother using a wheelchair could reach in from the side to access the child (rather than having to stand up and lean over the crib rail), and adding wheels to the legs of tables or other support surfaces so that a mother could easily move the child positioned on that surface from room to room. Cribs with drop-down sides are no longer manufactured, but they were prized by about half of the women. Becky (T5 SCI), a wheelchair user, said,

Occupational Therapy Intervention

Nine of the participants had direct interactions with occupational therapy services. Interviewees who had received occupational therapy services had generally positive experiences. Rachel (SCI) described her experiences: