Developmental dysplasia of the hip (DDH) refers to the degeneration of the structures that form the hip due to various reasons, despite these structures being normal during intrauterine development (Kose, Omeroglu, & Daglar, 2013). The severity of DDH can vary from being a slight dislocation in which the femoral head in the acetabulum is dislocated because of movement, to a complete dislocation, in which the femoral head is located outside the acetabulum (Hart, Albright, Rebello, & Grottkau, 2006).

Developmental dysplasia of the hip is the most common congenital deformity in newborns and is a serious musculoskeletal problem that can cause disability in infancy and childhood (Bergo & Rosendahl, 2013; Dezateux & Rosendahl, 2007; Mahan, Katz, & Kim, 2009; Witt, 2003). In the published literature on DDH, its reported incidence is 0.87-10.5 per 1,000 live births worldwide, 0.8-1.6 in the United States, 10.83 in Greece, 9.1 in Iran, and approximately 5-15 in Turkey (Kose et al., 2013; Giannakopoulou et al., 2002; Schreiber & Roach, 2013; Pashapour & Golmahammadlou, 2007). The current rate in Turkey indicates that approximately 14,000-18,000 newborns might become disabled if they do not receive the appropriate treatment for DDH (Kose et al., 2013). Although some of the causes of DDH are unknown, genetic and environmental factors might contribute to the development of the disease (Sewell, Rosendahl, & Eastwood, 2009; Y[latin dotless i]ld[latin dotless i]z & Ezirmik, 2014). The main factors associated with a higher incidence of DDH include a family history of DDH, intermarriage, firstborn baby girl, oligohydramnios, prenatal breech position, baby swaddling, conditions in which the hip makes challenging extensions and adduction movements, congenital torticollis, deformity of the foot, and differences in the lengths of the legs (Bilaloglu, Unlubay, Tuncbilek, & Kosar, 2001; Cal[latin dotless i]skan, 2004; Clarke, 2004; Hart et al., 2006; Mitchell & Redfern, 2007; Witt, 2003).

The incidence of DDH in Turkey is higher because of consanguineous marriages, a family history of DDH, and the use of swaddling, which is still practiced in certain regions (Ezirmik & Y[latin dotless i]ld[latin dotless i]z, 2013). The rate of swaddling in certain provinces of Eastern and Southeastern Turkey varies between 81.6% and 93.0%, and the incidence of DDH in these provinces is higher among babies aged 3 months or older (Ezirmik & Y[latin dotless i]ld[latin dotless i]z, 2013; Zehir, Is[latin dotless i]kan, Sipahioglu, Sipahioglu, & Koruk, 2013). The lack of adequate information among parents regarding DDH as well as their generally late consultation of specialist physicians often results in a delayed diagnosis and treatment of DDH (Ezirmik & Y[latin dotless i]ld[latin dotless i]z, 2013).

The early detection of DDH is important for treatment success (Sewell & Eastwood, 2011; Witt, 2003). The first 2-3 months after birth are considered the "golden period" for DDH treatment (Kose et al., 2013). Thus, screening for the early detection of DDH is carried out in many countries (Duppe & Danielsson, 2002; Mahan et al., 2009; Sewell & Eastwood, 2011; Witt, 2003). In Turkey, the DDH Screening Program is administered by the Public Health Institution of Turkey (Kose et al., 2013). In this selective program, which targets at-risk groups, healthcare personnel inform families about DDH and schedule children's physical examination appointments immediately after birth (within the first 48 hours). Approximately 3-4 weeks after the birth, the baby's physical examination and evaluation for DDH risk factors is performed by the family physician. Babies are referred to the orthopaedic and traumatology clinic for further tests and examinations when positive findings or any of the risk factors are detected. The results are reported to the family physician after the clinic's diagnosis and treatment of the baby is completed. In addition, the DDH screening results are recorded in Turkey's Family Physician Information System (Antalya Directorate of Public Health, 2013; Kose et al., 2013).

The implementation of appropriate treatment at an early stage is as important as early diagnosis for the success of DDH treatment. The aim of DDH treatment is to place the hip joint in its correct anatomical position as soon as possible and ensure normal development of the acetabulum and the proximal femur by maintaining this placement. This measure should prevent possible complications and provide a functional hip joint that will last a lifetime (Kose et al., 2013). Both conservative and surgical methods of treatment are used to accomplish this task. In the first 6 months, conservative methods that aim to hold the hip at abduction and flexion positions are used (i.e., the Pavlik harness, dynamic or static braces, and splints). After 6 months, patients for whom the conservative methods have failed are evaluated for the following surgical methods: closed/open reduction and cast application to protect the reduction, adductor tenotomy, traction, pelvic and/or femoral osteotomy, and varus derotation surgery (Kose et al., 2013; Witt, 2003; Zhao et al., 2014). If DDH is not diagnosed and treated at an early age, total hip replacement surgery may be necessary because of early onset arthritis (Mahan et al., 2009; Tozun, Beksac, & Sener, 2007).

Patient care is a key factor in the success of DDH treatment. Babies and children who have had surgery to correct DDH generally stay in the hospital for 1-2 days and then are discharged from the hospital to their homes. In the process of hospitalization, orthopaedic and traumatology nurses provide care, education, and counseling to parents that are crucial to preparing children for home care (Causon, 2010; Hart et al., 2006; Witt, 2003). For approximately 3-6 months, a hip spica cast is applied to maintain the reduction, and the cast is changed every 6 weeks (International Hip Dysplasia Institute, 2014). When closed reduction is not successful, open reduction, osteotomy, tenotomy, or varus derotation surgery can be performed (Causon, 2010). During the postsurgical period, families generally encounter issues relating to the child's pain, feeding, toileting/changing diapers, hygiene/clean and dry handling of the cast maintaining skin integrity, dressings, sleeping, mobility, positioning, transport, and travel (Clarke & Dowling, 2003; Hart et al., 2006; Newman & Fawcett, 1995). In addition, families can also face problems that occur as a result of surgery and long-term casting.

Families, especially mothers, can suffer psychological and social problems such as anxiety, guilt, fatigue, depression, and social isolation during home care (Causon, 2010; Clarke & Dowling, 2003; Newman, 2005; Newman & Fawcett, 1995). The mothers' employment status, existing health problems, knowledge of postoperative home care, and access to help can affect these problems. Our observations of families with children who have had DDH surgery showed that the children generally are cared for by their mothers at home. The mothers do not work outside of the home or they have left their jobs to care for their children, and they receive only limited assistance in caring for the children. This can lead to physical, social, and economic problems for the entire family, especially the mothers.

None of the DDH studies that have been conducted in Turkey relate to the problems that parents have at home during the postoperative period. This study was conducted to evaluate the current situation and provide more effective assistance to parents providing home care for their children.

Purpose

This study was conducted to assess the problems experienced by parents providing postoperative home care to their children after DDH surgery, and to implement clinical care changes to provide more effective assistance to parents.

Methods

This study used a descriptive and cross-sectional design. It was conducted at the Orthopaedic and Traumatological Clinic of the Gazi University Health Research and Practice Center in Ankara, Turkey. The clinic has a capacity of 54 beds and provides service to pediatric, adult, and geriatric patients.

Sample

As DDH is a rare problem, the study was conducted using a descriptive and cross-sectional design. The study included children in which conservative treatment had proved ineffective, and who consequently had undergone corrective surgery. The parents of 36 children who were admitted to the clinic for DDH surgery between March 2010 and March 2013 and who agreed to participate voluntarily in the study were interviewed. Parents (n = 3) who could not be reached by telephone after three attempts, when they were called 4-6 weeks after the surgery, were excluded from the study. Therefore, the study was completed with the parents of 33 children. Data were collected only once from the parents and repeated hospitalizations of the children were not taken into account.

Data Collection and Procedures

Data for the study were collected using a survey that the researchers had developed according to the relevant literature. The survey consisted of two parts. The first part had 13 questions about the sociodemographic characteristics of the children and their parents, and the second part had seven questions about the problems that parents encountered while providing home care for their children after surgery. The first part was administered at the hospital when the children had surgery and the second part was administered by telephone 4-6 weeks after the surgery.

Data Analysis

The study's data were analyzed using SPSS 16.0. Frequencies, mean, percentages, and chi-square tests were used to analyze the data. In the evaluation of the results, p < .05 was considered statistically significant.

Ethical Considerations

The Gazi University Health Research and Practice Center did not have an ethics committee at the beginning of this investigation. Prior to the initiation of the study, written consent was obtained from the institution (Date: 05/08/2009, Number: 1890). All participants were informed of the nature and purpose of the study, and the voluntary nature of their participation. Informed consent was obtained from the parents in accordance with the Declaration of Helsinki.

Results

The mean age of the children in the study was 25.9 months (SD = 24.8; minimum age = 4 months; maximum age = 130 months); 30.3% were between 0 and 12 months and 27.3% were between 13 and 24 months. The children had the following types of surgery: closed reduction (27.3%), open reduction (33.3%), open reduction and a Salter/pelvic/pelvic and femoral osteotomy (18.2%; in one of these cases implant removal also was available), implant removal (9.1%), radical reduction with a pelvic and femoral osteotomy (6.1%), adductor tenotomy with open reduction and implant removal (3.0%), and varus derotation osteotomy using plate fixation (3.0%).

Most of the home care providers (93.9%) were women, 72.7% graduated from primary school (eighth grade), and the mean age was 28.9 (SD = 7.35) years (see Table 1). Furthermore, 15.2% of the parents' marriages were considered consanguineous. Nearly 70% were structured as a nuclear family (69.7%) and classified as middle-income (63.6%). Most of the caregivers were homemakers (84.8%) and were not working outside of the home (84.8%), and most of these families had health insurance (87.9%). Although 15.2% of the parents had health problems, 45.5% of them described their health condition as "good" and 36.2% of them described it as "average" (see Table 1).

Table 1-a. Characteristics of the Parents of Children Who Had Had DDH Surgery (

This study found that 84.8% of the parents received information from healthcare staff about postsurgical care for their children (72.7% of staff were orthopaedics and traumatology nurses and 39.4% were doctors). Although it is not shown in Table 1, the parents generally had information about changing diapers (89.3%), cast care (42.9%), skin care (39.3%), child transport (39.3%), protection from infection (25.0%), and personal hygiene (10.7%). However, 78.8% of the parents stated that they wanted to receive more comprehensive training (see Table 1). Parents provided care to their children for about 3 months after the DDH surgery and most of them (81.8%) felt that their caregiving was somewhat adequate; approximately half of the parents (57.6%) received support from their relatives for the care of their children (see Table 1).

Table 1-b. Characteristics of the Parents of Children Who Had Had DDH Surgery (

In the period after surgery, parents took care of the child's needs for skin care (97.0%), cast care (93.9%), transport (84.8%), mobility/positioning (81.8%), and personal hygiene/care after toileting (75.8%) (see Figure 1). All of the parents reported having problems while caring for their children at home and the most frequently cited problems were hygiene/care after toileting, cast care, skin care, and personal hygiene (97.0%, 87.9%, 84.8%, and 84.8%, respectively) (see Figure 2).

Our study also found that nearly all of the parents (97%) had individual problems in addition to their child care problems, and that these problems could be physical (96.9%), psychological (65.6%), and/or social (75.0%) (see Table 2). Most of the parents had physical problems of insomnia (90.6%), fatigue (90.6%), and/or back pain (87.5%) (see Table 2). For parents with psychological problems, 43.8% believed that their children would not recover and 34.4% felt unhappy consistently. Roughly half of the parents reported that they did not have time for themselves (50.0%) and could not fulfill their responsibilities at home (46.9%); one quarter of them (25.0%) reported that they could not spend time with their friends (see Table 2). Our study found no statistically significant differences between the characteristics of the parents and the child care problems experienced at home (p > .05).

Figure 1. Child care practices that were performed at home by the parents (

Figure 2. Problems experienced by parents related to the home care of their children (

Table 2. Distribution of the Problems Experienced by Parents Whose Children Had Surgery to Correct DDH (

Discussion

Our study found that the parents providing care to their children recovering from DDH surgery had major difficulties. All of the parents had problems with caregiving activities in the home, especially toileting aftercare, cast care, skin care, and personal hygiene (see Figure 2). Similarly, studies about families whose children had DDH surgery and a body cast reported that care was provided at home by their families, and that this period was very difficult for them. In addition, these studies indicated that families might have problems dealing with issues such as pain, cast care, feeding, toileting/changing diapers, hygiene/keeping the cast clean and dry, maintaining skin integrity, dressings, sleeping, mobility, positioning, transport, and travel. Therefore, families should be informed about these potential problems (Clarke & Downling, 2003; Hart et al., 2006; Newman & Fawcett, 1995; Sparks, Ortman, & Aubuchon, 2004).

Training to provide home care after DDH surgery, which was provided by the orthopaedic and traumatology nurses, was crucial for the parents in our study. Parents require information that addresses the child's complex needs to ensure that their child's life is as normal as possible despite having a spica cast (Causon, 2010). In a literature review by Smith (2004) about the care of babies and children who had a spica cast, the families stated that they needed information and that their needs were not different from those of other families who also needed information for their hospitalized children. The same study reported that families needed more specific information supported by written educational materials about the home care of children in a spica cast, the maintenance of a normal life with limited mobility, and positional problems. The development of discharge packages to meet the informational needs of the families and the family's satisfaction with the multidisciplinary team also was recommended (Smith, 2004). Clarke and Dowling (2003) recommended that hygiene, clothing, toileting, diet, positioning, moving, handling, and transport (car seats) are important topics to cover in order to prepare parents for the home care of children with a spica cast (Clarke & Dowling, 2003). Clarke and McKay (2006) reported that the information provided to the families of children with a cast due to DDH was satisfactory but not fully adequate, and that the families wanted troubleshooting information about hygiene, skin care, diet, toileting, play, positioning for sleep, transport, maintenance of body temperature, cast care, and problems that may develop (Clarke & McKay, 2006). Although most of the parents (84.8%) in our study had information about caring for their children after DDH surgery, most parents also stated that they needed education that was more comprehensive (78.8%) (see Table 1). The treatment of DDH requires long-term monitoring and care. The findings of our study concur with those of previous studies, indicating that the education of the parents at discharge concerning the care of children operated on for DDH is not sufficient for ensuring adequate care. As such, in addition to discharge education, it is necessary to develop and improve on services that focus on assisting parents at home, such as home care and telephone counseling.

Children's activities after DDH surgery are limited because they must remain in a cast for a long period (Clarke & McKay, 2006; Hart et al., 2006; Sparks, Ortman, & Aubuchon, 2005), and some studies have reported that children in casts had motor, cognitive, and social problems. In a study on functional condition, Newman (2005) concluded that the personal health and self-esteem of the caregiver can affect the child's normal growth and development and can change the child's emotional state. Problems with the cast increase the caregiver's burden. In addition to noting the difficulties in providing physical care, Sparks et al. (2005) noted the importance of informing families about problems related to motor, cognitive, and social-developmental characteristics due to age and being in a body cast.

In this study, parents provided care to their children at home for 3 months after surgery, and approximately half of them (57.6%) received support only from their relatives (see Table 1). Having a child with DDH and being the primary caregiver for a long period after a child's surgery can cause physical problems in parents over time. In fact, nearly all of the parents in our study reported having physical problems (96.9%), and the most frequent physical problems were insomnia (90.6%), fatigue (90.6%), and back pain due to transporting children (87.5%) (see Table 2). Back injuries and lower back pain in the caregivers increased when children with casts were transported or lifted incorrectly (Judd & Wright, 2005). Newman (2005) found that the daily life of the mothers, fathers, and other caregivers changed; eating and personal dressing activities of all caregivers decreased because they could not take time for themselves, and caregivers had insomnia, pain, and chronic health problems. Other studies in this field have reported that mothers who were caregivers had fatigue, burnout, and insomnia due to waking up frequently at night (Newman, 1997; Newman & Fawcett, 1995).

Long-term caregiving at home that is accompanied by a lack of support can cause psychological problems in parents over time (Clarke & Dowling, 2003; Newman, 2005; Newman & Fawcett, 1995). Our study found that most of the parents had psychological problems (65.6%), 34.4% of them consistently felt unhappy, and 43.8% felt that their children would not recover (see Table 2). Causon (2010) pointed out that parents accepted the DDH diagnosis but felt anxiety and guilt during the treatment period. Newman (1997) reported that mothers could not take care of their personal needs because of fatigue, sleeping in the same room with children, and waking up frequently at night, and that this condition affected their sex lives. Other studies on this subject reported that the caregivers of children used more coffee and cigarettes during the caregiving period, and experienced fatigue, stress, exhaustion, depression, changes in sexual intimacy with their partners, and social isolation (Clarke & Dowling, 2003; Newman, 2005; Newman & Fawcett, 1995).

Experiencing psychological problems as an individual caregiver also can result in social problems. In an exploratory study conducted with 35 mothers who were providing care to their children who were in body casts, Newman and Fawcett (1995) concluded that recommendations should be made about housework, child care, personal care, and social, communal, and professional activities to overcome these challenges. Smith (2004) stated that families providing care to children in a body cast should be supported in practical, emotional, and social ways. During this period, mothers faced problems, such as fatigue, burnout, social isolation, and difficulties managing housework. They had to leave their jobs and educational activities and did not want to go out, as they were often very angry. As such, their social and communal activities were limited (Newman, 2005). Hart et al. (2006) found that parents and caregivers faced different levels of difficulties at home and that education about this subject was very important. Consistent with the published literature, our study found that three quarters of the parents (75.0%) had social problems, one half (50.0%) had trouble setting aside personal time for themselves, almost half (46.9%) had problems fulfilling their responsibilities at home, and one quarter (25.0%) had difficulty talking with friends (see Table 2).

Concluding Recommendations

In this study, all of the parents had problems related to their children's care after DDH surgery, and among these the most common were toileting aftercare, cast care, skin care, and personal hygiene. The parents experienced physical, psychological, and social problems related to their children's care. In addition, the home care information provided to the parents was found to be insufficient and inadequate not only because of the lack of visual and written materials, but also because the nurses lacked sufficient time and provided information only for satisfying specific and momentary needs/demands rather than giving comprehensive training to the parents. The results of the study are instructive for orthopaedic and traumatology nurses' planning care for children with DDH and their parents. On the basis of this study's results, we recommend (1) preparing a comprehensive discharge training package for parents about children's home care needs after DDH surgery, (2) supplementing the caregiving instructions for parents at home with visual training materials, and (3) providing telephone counseling to parents after discharge.

References