Appreciating life: being the father of a child with severe cerebral palsy.
Cerebral palsy (Care and treatment)
Cerebral palsy (Research)
Disabled children (Health aspects)
Children (Health aspects)
Appelbaum, Michelle Gellman
Smolowitz, Janice L.
|Publication:||Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2012 American Association of Neuroscience Nurses ISSN: 0888-0395|
|Issue:||Date: Feb, 2012 Source Volume: 44 Source Issue: 1|
|Topic:||Event Code: 310 Science & research|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
This phenomenological study examined the experience of being the father of a child with severe cerebral palsy (CP). Participants were selected using purposive sampling. Two interviews were conducted with 6 English-speaking, biological fathers whose children with CP (ages 5-27 years) were enrolled in a residential and day school in northeastern United States. Audiotaped interviews were transcribed, and thematic analysis was conducted using van Manen's methodology. Themes identified were as follows: Lost in birth; My beautiful unique child; Illness as a way of life ... you can't get used to it and after a while it feels like no one cares; Partners--loyalty and commitment; How the world receives my child; Healthcare providers--I'm here; Torn ... when your child can't live at home ... finding a place to live and grow; and Faith. Clinicians should encourage, value, and include fathers' input during discussions of medical and social problems and when developing long-term care plans. Further research exploring the experiences of fathers of children with CP should be conducted.
The purpose of this study was to describe the experience of being the father of a child with severe cerebral palsy (CP). Although CP is a nonprogressive permanent impairment of cerebral function, complications of the disease can lead to deterioration in function (Heilbroner & Casteneda, 2007). Caring for a child who is chronically ill and disabled because of CP adds to the tasks and challenges of parenthood (Davis et al., 2010; Rentinck, Ketelaar, Jongmans, & Gorter, 2007). In the United States, 746,000 children and adults have one or more manifestations of CP (United Cerebral Palsy, 2010); CP is the most costly of clinically significant birth defects in the United States (Kuroda, 2000).
Prematurity is the most frequent cause of CP, and technology is available to sustain viability in premature infants. Multiple gestations are also a risk factor for CP, and innovations in reproductive technology have increased its incidence. Despite the advances in surgery and technology, the number of annual new cases of CP has not changed over the past 30 years (Surman et al., 2009).
Most children with CP require assistance with activities of daily living. Spastic quadriplegia, the most
severe form of CP, affects all four extremities (Guyard, Fauconnier, Mermat, & Cans, 2011). Most of these children are nonverbal. Research has examined the impact and challenges of mothers, parents, children, and families of children with chronic illness and CP (Broger & Zeni, 2011). Studies have shown that fathers are equally important as mothers in childrearing but rarely have fathers been exclusively studied. According to Broger and Zeni (2011), specific responses of fathers have not been studied because a theoretical model is lacking.
As children with severe CP physically mature and grow, they continue to require the same level of physical care they needed as young children. The child's level of severity of impairment significantly impacts family functioning, pile-up of stress responses, and the child's overall health (Guyard et al., 2011). Understanding the experience of fathers is essential as family members are interreliant; what happens to one member affects other family members. Therefore, this qualitative study examined the experience of being a father of a child with severe CP.
Qualitative research is best suited to obtain information and illuminate a topic or phenomenon about which little is known. This study was guided by van Manen's phenomenological methodology, which focuses on everyday lived experience among adults who guide children, such as fathers, mothers, teachers, or nurses (van Manen, 1990). Before beginning the research, an institutional review board approval was obtained, and permission was given by the facility where the study was conducted.
Meetings were held to inform healthcare workers at the residential facility about the study. Healthcare workers referred fathers who expressed interest and met inclusion criteria to the primary investigator (PI). The PI explained the study protocol and confirmed that the father and child met the inclusion criteria. Fathers who chose to participate signed the informed consent and scheduled the first interview within 2 weeks.
English-speaking, birth or legally adoptive fathers of children at ages 5 years or older with severe CP were eligible for participation. Fathers were asked about their children's functional status and age at the time of diagnosis to determine inclusion in the study. Internationally, the age of 5 years is recognized as the upper limit for diagnosis of congenital CP (Scherzer, 2001). Severe CP is defined as having a moderate to great limitation in activities of daily living as measured by the Gross Motor Function Measure (Palisano et al., 1997). The children's healthcare providers verified the fathers' ratings.
Purposive sampling was used to conduct the study. Sample size was determined when data saturation was achieved and no new findings were obtained. Data saturation occurred after five participants were interviewed. One more individual was interviewed for confirmatory purposes. Samples of 6-10 participants are common in qualitative studies (Norwood, 2000). The sample size was then evaluated for appropriateness and adequacy (Morse, 2000). This study was conducted at a residential facility located in the northeastern United States.
Data Collection Procedures
Each father was interviewed on two separate occasions, 2 weeks apart, in a private office at the facility. Each interview lasted approximately 1.5 hours. During the first interview, each father was asked to describe and reflect on the meaning of being the father of a child with severe CP. Demographic data were obtained at the conclusion of the interview. During the interview, the PI wrote detailed notes. The interview was audiotaped. The audiotape was transcribed verbatim, by the interviewer, within 48 hours of the interview. During the second interview, the transcript from the first interview was reviewed with the father so he could verify, validate, amend, add, or delete information and clarify the investigators' understanding of the transcribed material and developing themes. The transcript, as accepted by the participant, was finalized within 48 hours of the second interview.
Data analysis began immediately after each participant validated the transcript during the second interview, van Manen's (1990) method was used to analyze data. It encompasses six steps, which are not sequential. These steps are as follows:
1. Consider the lived experience of a specific phenomenon.
2. Study the specific lived experience without preconceived notions.
3. Examine the essential themes regarding the phenomenon
4. Describe the phenomenon by repeated revision of the researcher's writing,
5. Remain attuned to the phenomenon
6. Assess current knowledge to determine how to find the essence of the question (van Manen, 1990).
Interview transcripts and the PI's notes were used for data analysis. Each participant's themes were compared with the themes developed from interviews with previous participants. To establish trustworthiness of the qualitative data and to ensure the rigor of the research process, the data and process were evaluated using the criteria of credibility, transferability, dependability, and confirmability (Lincoln & Guba, 1985). Credibility was established by member checks, which took place when the PI met with each participant at the second interview. The PI remained in the field until enough data were collected to understand the study question. Progressive subjectivity is the process of monitoring one's own preconceived ideas that could influence data collection. The PI bracketed her a priori explanations about the research question. Peer debriefing occurred every 1-2 weeks. Transferability is established by creating a detailed description of the experience that enables the reader to visualize and enter the experience. The themes were shown to two professionals, a family nurse practitioner and a social worker, who worked with the study population for a minimum of 5 years. They agreed that the descriptions were consistent with their experiences, thus providing the "phenomenological nod" of agreement (Munhall, 2001). Dependability was established by an audit trail. The criteria for confirmability, assuring that data and interpretations are rooted in context and not influenced by the investigator's assumptions, were established by a doctorally prepared nurse, familiar with qualitative research, who examined the data for relevance and meaning.
Participants were recruited from a private, not-for-profit school for people with developmental disabilities in the northeast United States. Eight fathers were contacted; six fathers participated in the study. Two fathers cancelled because of illness.
The ages of the fathers ranged from 25 to 60 years (median, 42.5 years). The participants were all the biological fathers of their children. Five participants were Caucasian, and one was Hispanic. Five fathers were married, and one father was remarried to a new partner. The children of study participants ranged from 5 to 27 years of age; there were three female children and three male children. Four children lived at the school facility, and two lived at home.
The indented paragraphs below represent quotes elicited from participants during their individual interviews. Each participant's interview was analyzed and compared with other participants' interviews to determine common themes using van Manen's methodology. Eight major themes were identified, which articulated the meaning of being the father of a child with severe CP. There were three minor subthemes under the theme "How the world receives my child."
The first three themes describe the fathers' experiences in direct relation to their children. "Lost in birth" recounts the fathers' experiences of the sudden transition from normal birth experience to life-or-death situation.
"My beautiful unique child" relates the fathers' grief over the loss of their hopes and dreams for their children. Different fathers described their feelings during the interview.
The fathers talked about their experiences when their children required hospitalization. This is described in "Illness as a way of life ... you can't get used to it ... and after a while it feels like no one cares."
The next four themes focus on the fathers' experience of interactions with others in relation to their children. "Partners: loyalty and commitment" depicts the teamwork and commitment of fathers to their wives and children.
"How the world receives my child" reports the range of feeling expressed by fathers regarding reactions of people to their children. Fathers wanted their children included and accepted. Fathers described supportive encounters.
Fathers described the nonsupportive encounters they had with family.
Fathers described the nonsupportive encounters they had with community members.
"Healthcare providers: I'm here" presents the fathers' experiences while interacting with healthcare providers. They articulated a lack of support in a many situations.
The theme "Torn ... when your child can't live at home ... finding a place to live and grow" describes the fathers' experiences in coming to a decision if it was best for their children to live at home or to live in a residential facility. Grandparents who recognized how difficult it was to care for the children at home often facilitated the initial process.
"Faith," the final theme of this study, highlights the fathers' beliefs about religion and presents the fathers' discussion of their children's positive response to prayers and songs at religious services.
Limitations of Study
The influence of age, geography, race, ethnicity, and religious beliefs should be considered when interpreting the study findings. The fathers in this group were involved in their children's healthcare. Findings may not be reflective of the experiences of fathers who have other living situations or who have different relationships with their children and the children's mothers.
This study examined the experiences of fathers of children with severe CP. Several themes identified in this study are consistent with those identified in studies of parents and families (Antle, Mills, Steele, Kalnins, & Rossen, 2008; Broger & Zeni, 2011; Davis et al., 2010; Glasscock, 1997; Kersh, Hedvat, Hauser-Cram, & Warfield, 2006; Pelchat, Leveret, & Bourgeois-Guerin, 2009; Twyman et al., 2010). In this study, fathers described their children as loving, integral family members. In a phenomenological study of parents of children with CP, a mother talked about her child being her gift (Glasscock, 1997; Pelchat et al., 2009; Rentincket al., 2007). Other mothers viewed CP as part of their children's lives and believed that education and leisure activities were also important (Glasscock, 1997). One father in this study talked about his admiration for his daughter's courage. In a study by Davis et al. (2010), a father described his child as inspirational.
The parental teamwork necessary to keep children and families functioning has been expressed in studies informed by both mothers and fathers. Parents stated that they became closer because they depended on each other for support (Kersh et al., 2006). Mothers reported that fathers provided support by assisting in caring for the children (Glasscock, 1997).
Fathers wanted to be included in healthcare interactions regarding their children, which were described in other studies (Kersh et al., 2006). Fathers, in this study, wanted relatives to interact more with their children. In two qualitative studies of mothers and fathers of children with CP, some parents stated they did not receive the support they had expected from relatives (Chimarusti, 2002; Pelchat et al., 2009).
Fathers in this study talked about the great amount of support given by grandparents. A study of functional and social characteristics and quality of life of families of children with CP found the children needed assistance to make friends because they were faced with peer rejection (Antle et al., 2008; Davis et al., 2010). Parents reported their children needed environmental support with both social and technological interventions (Attemeier, 2000).
Fathers elucidated how faith helped them cope. The role of faith has been described in previous studies. Mothers of children with severe CP received social support by participating in church services (Broger & Zeni, 2011; Glasscock, 1997; Twyman et al., 2010). Coping as a predictor of adaptation was studied in families with children with CP. It was found that many fathers of chronically ill children used a faith-based coping process (Broger & Zeni, 2011). One father in this study questioned if he had done something wrong to cause God to punish the family. Several fathers in a qualitative study of parents of children with CP wondered if their past actions caused their children's situation (Chimarusti, 2002).
This study identified a theme not discussed in the literature. Fathers described the difficulty in deciding where their children should live when it was not possible for the child to continue to live at home.
Clinical Implications Nursing Education
Nurses in different settings have reason to interact with patients who have CP and/or their families. Curricula must be established to incorporate rationales and methods to encourage and accept fathers as caregivers. Nursing students should be taught that fathers are active participants in their children's treatment plan.
Nursing students can be assigned to patients with CP in the clinical area. Standardized care plans may be published and distributed to allow for care of patients with CP. Books, book chapters, and journal articles about CP could be placed on reading lists for supplemental reading in classes such as Nursing Care of Mothers and Children.
The results of this study revealed that the fathers need more information about their newborn children. The following recommendations for hospital labor, delivery, and postpartum units are presented. Administrative policies need to be implemented to ensure communication with fathers. Fathers must be apprised of changes in mothers' and infants' medical status during labor, delivery, and the neonatal period. This information needs to be communicated to the father whether or not he is physically present at the birth.
In the event of emergency delivery, when fathers cannot be present in the delivery room, a protocol that includes the father should be established. There must be a designated waiting room and cell phone in the hospital where fathers can be contacted. A map of the hospital facility and contact information for the supervising nurse should be provided in the event that fathers get lost in the building.
Including fathers in all aspects of care for children with severe CP should be a fundamental component of pediatric care. Fathers reported they were not actively informed of their children's situation. Patient education must be defined and practiced to be inclusive of the father. Fathers noted that providers directed information toward mothers even when the fathers were present. Although some fathers are more proficient in childcare, providers should encourage all fathers to care for their children at whatever degree they can. Fathers need to be included and should be praised for their interest. Flow sheets and published care plans should include strategies for working with fathers. If an untoward birth situation occurs, nurses can facilitate communication with someone to support the father. In addition, nurses can contact the hospital social worker, interdenominational clergyperson, or the father's own clergyperson.
Children with severe CP may require recurrent healthcare encounters and/or hospitalizations as they grow older. Heath care providers must continue to include fathers in the treatment plan. A specific section of the progress notes should document that both the father and the mother have been given an explanation of their children's condition by a healthcare provider. As the children grow older, nurses may need to be available to guide families who wish to have their children live away from home. This can be done by direct counseling and referral to support groups and other professionals.
Materials written by the nursing staff need to be available to provide fathers with information if there are complications during the delivery. Pamphlets can include a glossary of medical terms. Pamphlets written by the nursing staff should outline responses to general questions, explain treatments that high-risk infants may receive, and provide travel directions to other hospitals. In addition, information about transport and a plan of the hospital to which the baby is being transferred should be included. The role of the staff that will care for the baby should be described and defined, for example, the neonatal nurse, neonatal nurse practitioner, respiratory therapist, or neonatologist. Telephone extensions of the staff should be listed. Written newborn discharge information should include a referral for public health nursing, the telephone number of a social worker, and the address of the Web site for the United Cerebral Palsy Association (2007). A dedicated telephone number for the discharging hospital's neonatal intensive care unit or nursery should be provided, and parents should be encouraged to contact the staff if questions arise after the family returns home.
As the child grows, written information describing growth and development in children with severe CP should be accessible at primary care offices and clinics. Lists of support groups or counselors who can help the child and his or her family during each chronological stage of development may be available. Names, phone numbers, and contact staff at different appropriate schools and residential facilities should be listed and available if the family expresses interest.
We talk of tolerance for different groups of people; we need to look also at developmental disabilities. Programs to promote tolerance and prevent bullying of other children should be examined. The fathers discussed the negative interactions they witnessed between their children and other children. Children with special needs (attention-deficit hyperactivity disorder, behavioral disorders, learning disabilities, autism spectrum disorder, and cystic fibrosis) were studied regarding bullying. It was found that children with CP need to be questioned regarding bullying and ostracism episodes during encounters with healthcare providers because the children may be at high risk (Twyman et al., 2010). The programs that promote tolerance and prevent bullying of children should be examined. The programs need to include specific strategies for children with CP.
Recommendations for Future Nursing Research
Longitudinal studies are needed. However, they are expensive and time consuming (Johnson, 2010). New York State Education Law 42 02.5 states that special education may continue until the age of 21 years. The child is then eligible for adult occupational training as well as adult healthcare. The age of 21 would be a logical cutoff point for a longitudinal study about fathers of children with severe CP.
Strategies and interventions to insure providers include fathers of children with severe CP in interactions are also needed. Research should be utilized to develop and evaluate interventions that provide information and support for fathers when their newborns are not healthy. Qualitative studies are needed to understand the process by which fathers and mothers decide where their children should live. Research is needed to determine how to assist fathers and mothers in making these choices. The effect of liturgical music and religious services on children with CP needs to be studied by direct observation and reports from fathers and other caregivers.
Research should be utilized to develop and evaluate interventions that discourage children from bullying other children who have disabilities. Information about how to develop and adopt an antibullying policy regarding children with severe CP is required. Policy and research should be adopted and disseminated to parents, schools, children, and other affiliated professional organizations by pediatric nursing and medical associations. The eight themes elicited in this study can help healthcare providers understand the unique experiences of fathers of children with severe CP.
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Questions or comments about this article may be directed to Michelle Gellman Appelbaum, DNSc PNP FNP, at firstname.lastname@example.org. She is a family nurse practitioner at Saint Francis Hospital in Poughkeepsie, NY.
Janice L. Smolowitz, EdD DNP ANP, is a senior associate dean and professor of clinical nursing at Columbia University School of Nursing, New York, NY.
The authors declare no conflicts of interest.
Five hours later they sent him by helicopter to a children's hospital because he wasn't getting enough oxygen. Then I realized the kid could die; the kid could be dead by the time I got down there. My wife had to stay behind at the hospital for at least a day. In the beginning, I was just a young man who was going to the hospital with my wife to have a baby. It was something I didn't expect was going happen to me and my family. My wife was rushed to the operating room for an emergency C-section. I was told to stay in an observation area. Somehow, I got lost in the hospital. I stayed in the room where they put me for hours. It became nighttime. People were looking to find me and I was worrying about what was going on. They were relieved to know I was still in the building. I think they just needed my signature to do the things they had already done with my daughter to revive her. And, as the days went on, we realized that we had a child who was severely brain damaged and was having seizures.
We realized we had a child who was severely brain damaged. I wasn't really prepared for it, and I thought my life would pretty much go on as it did. But my daughter's needs were so great that I really had to become an involved parent, not just saying I was one. It's just been a heck of a ride. But I'm very grateful for the fact that she is still alive today, and she's a beautiful young lady. It just seemed like there was always a new door that opened for us when we thought that one had just closed. Be it something beyond all this, I still today don't know, but we've always just kept going. It's made my wife and me stronger. I think you always do have regrets when there are other children of my friends and family that are my daughter's age. They go to a prom or they're driving the first time. I think about those things, sometimes. But I feel bad because she won't be able to experience being a mother.
We speak with someone and tell them my son just got out of the hospital; that he was in for 10 days. That's the way our life is. He goes in the hospital, we go, "OK, how long is he going to be in for this time?" Our routine is if he's in a local hospital, which would be great, my wife stays with him at night. When I wasn't working, I'd go in at 7 o'clock or 6 o'clock. She would go to work. Another family member might come in and relieve me. Then she'd come back after work, and then she'd go to dinner and stay overnight again. She stayed in the hospital for 4 months. She was home for a week, and then she went to the ER and had to be readmitted. She came home, and we went back to the hospital again 2 weeks later. This went on for 2-3 years: going into the hospital and out, in and out. You had to go hospital first then go home. The routine was really hard work.
I am fortunate to have my wife as my life partner. I think any parent would find it very rough, and we know single parents who have these problems. The demands are just so high that I don't know how you can do it alone. There are plenty of people that could walk away from having a sick child. I guess, the question, therefore, is did I ever think of walking away from it? No, there's too much to lose. And also, if I picked up and left, someone still has to be there. I couldn't put that burden on my wife.
The other kids are great. They go to the bus and push the kids in their wheelchairs into school. They include them in the activities .... That was true in elementary up to probably middle school. They described less supportive encounters. There are certain family members that say "How you doing?" to my son and "Give me a high-five." Well, they've been doing the same "high-five" because he was 2 years old; he's now going to be seven .... Whereas we also have a daughter who's four, and absolutely nothing wrong with her. The relatives hug her and take her places.
If we die, we don't want to separate our kids. But we can't find anybody that will take care of our son. I've had a few of them say outright, which was good, they can't do it. They wouldn't know how; they just can't do it. I don't question that because I know how difficult it is.
Other kids are mean. They'll walk up to my son, and they'll look at him--and he's in a chair and he's smiling, and he gets so excited that his hands start flying. The kid will look at him and say "What is wrong with him?" And then you look back on your childhood and that's exactly what I would have done. I would have laughed at him, pointed at him.
There was no real support or information at the hospital where she was born. Our first stop upon discharge was a center for children with disabilities, because we were told we were going to need those services. When we both walked in, not having had any experience with children with disabilities, we thought "Wow." I find that nurses, doctors, and therapists go to mom if they have a question. Because they figure that most women are more involved with the kids
My son required a lot of time for his care. We ended up paying a price. Physically, my wife's suffered from some back problems and a herniated disc as a result of physically handling our son. Over the years, we were able to get things like a hydraulic lift to assist us. My in-laws realized it took a lot of time to care for our son. They had more foresight than us in seeing our son needed to move to a residential facility. She then went to a long-term facility that was really for adults. We were terrified. We couldn't care for her at home, and this was our only option. That was the time when Geraldo Rivera investigated facilities for the disabled and found violations in basic care. It was very institutionalized there. However, one nurse looked out for her and gave us hope.
After my son was bum, people asked how I can believe in God now that he did this to me. What did I do that was so bad that I'm being punished? My son goes to church regularly and enjoys the music in church. The best behavior that he has ever shown from birth until present day has been during mass.
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