Sometimes I Just Want to Be "Mom"

Abstract

When a child with special needs enters the hospital, parents are often expected not only to participate in, but also to actually render care to their child, particularly if the parent has a medical background. Home health care staff also tend to make assumptions that a medically trained parent will provide more care to his or her child with special needs than other parents who do no have medical training. From a family-centered perspective, it is imperative that direct care staff, both in the hospital and in the home, along with the child's parents, collaboratively define the parents' optimal and desired level of involvement in the child's care.

Keywords: parent perspective , family-centered care , nurse as parent

During the last three months, my precious seven-year-old daughter has been hospitalized five times and has undergone four surgeries. As her mother, I have been at her side for each day of her hospitalization. Over the course of these hospitalizations, I have become increasingly frustrated with the expectation by hospital staff that, because I am a parent and a nurse, I provide my daughter with nursing care that other parents who are not medical professionals would never be expected to do.

One of my biggest concerns is how my daughter perceives my relationship with her while she is in the hospital if I am the one providing her with a significant amount of her medical care. My daughter was four years old when I adopted her. She had many previous hospitalizations during which there was no one with her but hospital staff, so she truly understands the importance of having a mother who is a mother and not a caregiver when she is sick and afraid. She is used to me providing care at home, but she is not used to me having to provide care for her while she is in the hospital. I know that it is difficult for her to understand why I cannot just sit by her bed and hold her hand or play with her instead of having to be the person who does things to her.

Because of her medical condition, my daughter requires total care for all of her activities of daily living. Bath time is a time for soaking, range of motion, and skin inspection as well as getting clean. She also requires being catheterized several times a day to insure that her bladder is adequately emptied, and she needs a daily bowel program to prevent complications. All of these things take time, and it is difficult for the nurse to devote an hour or two to perform all of these tasks several times a day. Since I am a nurse as well as a mom, the responsibility of rendering these tasks is frequently left up to me.

Instead of providing so much direct physical and medical care for my daughter while she is in the hospital, I would like to be able to be just my daughter's mother for a while and not her nurse. I would like to be able to be the "safe" person who provides comfort and not one of the people who holds her when something painful needs to be done.

The frustrations do not end when my daughter leaves the hospital. Home care staff have also made the assumption that I will be more involved with the medical care of my daughter than non-medically trained parents would be. My daughter's physician told me that I should take a step back and let the nursing agency take care of my daughter's nursing care needs. "Just be a mom," he said. Yet when I requested a supervisory nurse visit to our home to teach my daughter's nurses about her specific care needs, I was expected to actually do the training because the supervisor felt that I knew as much as the staff of the agency. The up side of this is that I know the nurses were taught correctly; the downside is that I had to take on a supervisory nurse role in my own home.

Home care staffing problems can often affect my level of responsibility with my daughter and can also cause frustration for me. Any day that one of the homecare nurses is not able to come to work, I am expected to drop everything to care for my daughter. I would love to be able to stay home and care for her all of the time, but I am a single parent and someone needs to provide a roof over our heads. Many of the nurses have thought nothing about being late, even though their tardiness also made me late. I am expected to be at my job on time every day that I am scheduled to work, so why should I expect any less from the nurses who are scheduled to care for my daughter in my home? Unfortunately, I am at their mercy. If they are late, I am late. If they call in, I must either call in or take my daughter work with me. Fortunately, I work in an environment that is very sympathetic and supportive of my status as a single parent of a medically fragile child, and everyone welcomes my daughter with open arms; however, not everyone has that luxury. Many parents lose jobs because of the responsibilities involved with caring for a child who is medically complex. I have to wonder how often these types of experiences occur for other nurses who are parents of children with special needs.

According to Ygge and Arnetz¹, parents are expected to be at their child's bedside 24 hours a day while they are in the hospital so that the parent can actively participate in the child's care. This does not take into account that the parent may need to eat, sleep, work or take care of other family responsibilities, such as other children, buying groceries or paying bills. Most hospitals do not have policies in place to clearly define the role of the parent as part of the healthcare team. But from my perspective, a defined role for parents becomes even more important when the parent has a medical background. Nurses, doctors and other health care professionals who are parents of children with special needs have the same fears, stresses and anxiety as other parents, but hospital staff does not always recognize these reactions.

Parents of children with a chronic illness may choose to use the time during which their child is hospitalized as a respite from the day-to-day care of a medically complex child. Even though the parent stays at the child's bedside, he or she may want to use the time to rest or do some relaxing activity, such as catching up on some light reading. In her article, Coyne² observed from the literature that no distinction is made for the various levels of parent participation. Coyne acknowledges that it is reasonable for parents of a chronically ill child to use the hospitalization as a break from being the child's constant caregiver.

A number of studies discuss parent participation in the care of a child in the hospital^{2, 3, 4}. Several authors agree that parent participation is beneficial to both the child and parent, but only if participation in care does not increase the level of stress experienced by the child and family during hospitalization. Yet there are no clear-cut guidelines as to the exact extent of a parent's participation in care and the extent of care that should be provided by the nurse. Certainly most parents of a child in an intensive care unit are not expected to routinely perform aspects of care. In my case though, as a former nurse in a pediatric intensive care unit who previously worked with many of the nurses caring for my daughter, I was the exception.

While there are a number of articles addressing parents' participation in the hospitalization of a child, there is very little information that addresses parents' participation when the parent is a medical professional. Should there be a different set of expectations for a parent who is a medical professional than for one who is a lay person? If so, who decides what the expectations should be?

It has been suggested that having a child in an intensive care unit is one of the most stressful situations any parent has to endure, whether it is a scheduled or an unplanned admission. In addition to parents' concerns about what is being done to the child and the outcome of rendered treatment, the intensive care environment itself invokes a feeling of tension and stress. Add the fear of the unknown, all of the alarms beeping and buzzing, a profound lack of sleep, and being surrounded by an army of people in white coats and uniforms, and you have the formula for major parental stress. This is no different for a parent who is a medical professional than for one who is not. In fact, it may even be more stressful if the parent is a medical professional who has a good understanding of the possible outcomes of any hospitalization.

Darbyshire⁵ learned from his study that when nursing staff recognize the competence of the child's family member, the hospital staff places too much responsibility on the family member. One of the primary components of a satisfactory parent-nurse relationship is for the parent to be able to establish the amount of direct care he or she wishes to provide and feels comfortable providing while the child is hospitalized. In my situation, it would be beneficial for the nursing care staff to spend time with me to clarify the fine points of my daughter's care and her home schedule, rather than relying simply on a parent questionnaire that I completed. I would like the nursing staff to follow the regular home routine for medication, feeding and treatments so that medications and treatments are not delayed. Especially, I would like to be asked how much care I wish to provide for my daughter while she is in the hospital, instead being expected to provide care based on nursing staff's misinformed expectations.

Once we return home, I would like the home health nurses' help in incorporating new treatments into our old home schedule so that the daily routine is re-established. I need to be consulted about the best times for home medication and treatments. An every-six-hour medication schedule at 10 am, 4 pm, 10 pm, and 4 am is not realistic when I am the person providing care for my child during the night hours and I work during the day. If I am to be an effective caregiver, I need to have sufficient sleep.

Living with and providing care for a child with special needs can result in a great deal of stress for parents. Being a nurse does not exclude one from feeling that stress. I need support as a parent of a child with special needs, and it is difficult for me to provide a lot of support to a nursing staff. Often I have felt the need to cry, scream and react the way parents who do not have medical training might react, but I have also felt that I was not allowed to do that. I was expected to have an understanding of all of the problems and set backs we encountered. I was expected to be "professional" and was supposed to understand everything that was going on with my child.

It is important for nursing staff to remember that when they are caring for the child with special needs, they also care for the whole family, regardless of whether the parent is a healthcare professional or not. And the next time my daughter is in the hospital let me be "just a mom" because that is a role I rarely get to play. I am always her mother and her caregiver; I am the one that makes sure everything gets done. Please remember that I get tired and afraid in spite of the fact that I am a pediatric nurse and have a good understanding of procedures and how things work in an intensive care unit. Communicate with me and listen when I try to tell you something. I do know my daughter and the best way to take care of her because I live with her 24 hours a day. Please respect that while I love my daughter and I love taking care of her, I may need some rest and would relish someone taking over my duties, even if only for the time she is in the hospital. Give me the chance to "just be a mom" and not a nurse.