Parental perceptions and expectations concerning speech therapy-related cleft care - a qualitative study
Introduction
The burden for individuals with craniofacial conditions, such as a cleft of the palate with or without a cleft of the lip (CP ± L), and their parents can be tremendous. From birth on, a CP ± L can impact feeding (Miller, 2011), hearing (Imbery et al., 2017) and both parents’ and patients’ satisfaction with facial appearance (Thomas, Turner, Rumsey, Dowell, & Sandy, 1997). During infancy, the child can experience additional problems with speech (Kummer, 2011). The speech problems of individuals with a CP ± L can be described in terms of resonance (e.g., hypernasality), nasal airflow (e.g., nasal emission and/or nasal turbulence) and articulation (e.g., active and/or passive disorders) (Kummer, 2011). In general, these speech disorders can affect the individual’s speech intelligibility (Kummer, 2011). Negative reactions of family and friends towards the child’s speech difficulties or esthetic differences may result in behavior problems or difficulties with psychosocial integration in the community (Hunt, Burden, Hepper, Stevenson, & Johnston, 2006; Murray et al., 2010).
The birth of a child with a CP ± L has been described as a psychological trauma for the parents (Dutkiewicz-Czescik, 2014). Learning of the diagnosis was associated with feelings of shock, confusion, despair and narrowing of information provided by health practitioners (Dutkiewicz-Czescik, 2014). Before birth, every parent has a preconceived idea of the healthy child. The diagnosis of a cleft leads to a mismatch between this ideal image and the reality provoking feelings of loss. These experiences of trauma and loss result in increased anxiety levels with the young child as a source of concern and insecurity (Dutkiewicz-Czescik, 2014). If the disrupted parental expectations dominate reality, the parents can unconsciously influence the child’s identity and perception of the cleft (Sousa, Devare, & Ghanshani, 2009). This situation holds negative implications in terms of the development of an unhealthy parent-child relationship possibly affecting the child’s psychosocial state (Dutkiewicz-Czescik, 2014). It has been reported before that parents suffering traumatic experiences are found to be emotionally unavailable to their children and are less sensitive to the babies’ social and emotional signals (Dutkiewicz-Czescik, 2014). Considering this impact of parental perspectives on the child’s emotional development, it is essential to investigate the viewpoints of parents with respect to cleft-related treatment.
This cleft related treatment is provided by interdisciplinary cleft teams (Crockett & Goudy, 2014). Within these cleft teams, coordinated care is provided by a wide range of health professionals including audiologists, clinical directors, cleft nurse specialists, clinical geneticists, clinical psychologists, dietitians, orthodontists, medical photographers, pediatricians, pediatric dentists, restorative dentists, speech and language therapists, surgeons (ear, nose, and throat; plastic surgery; and maxillofacial surgery), and supporting staff (Scott et al., 2015). The intensive and complex treatment puts increased pressure on the family life. A study performed by Aikins and Akinbami (2016) investigated the perceptions, expectations and reactions of parents and caregivers to cleft lip and palate surgery using a questionnaire. The participants reported that they wanted surgery to improve the child’s appearance (69.5 %), speech (22.2 %) and feeding (5.6 %). Interestingly, more than half of the participants (58.3 %) expected excellent results from the surgical intervention. The authors concluded that parents frequently have high expectations of cleft treatment which can result in disappointment or frustration when the provided intervention does not fulfill these hopes (Aikins & Akinbami, 2016). It is known that parental dissatisfaction can negatively impact the engagement of the parents in the treatment process of their child (Morrissey-Kane & Prinz, 1999).
Considering the importance of the parents’ satisfaction and expectations, increased attention is paid to the investigation of parental satisfaction and expectations in relation to their child’s treatment. Satisfaction is an important indicator of health care quality (Adhikary et al., 2018; Vargo & Lusch, 2004). Therefore, measurements of satisfaction can provide useful information for clinical practice (Adhikary et al., 2018; Vargo & Lusch, 2004). Studies which measured parent and patient satisfaction yielded insight into their demands and needs, with the aim of improving service delivery and resource distribution (Bleich, Ozaltin, & Murray, 2009; Mpinga & Chastonay, 2011). Increased satisfaction results in a higher commitment and compliance to care enhancing the envisioned health outcomes (Adhikary et al., 2018; Bleich et al., 2009). In the domain of individuals with a CP ± L, some studies have reported satisfaction with the outcomes of multidisciplinary cleft services among parents and patients based on questionnaires (Feragen et al., 2017; Prahl-Andersen & Aartman, 2010; Semb et al., 2005; Waylen et al., 2015). Despite this overall satisfaction, several sources of dissatisfaction were described (Nelson & Kirk, 2013). One reason for dissatisfaction was the desire of parents to receive more information, more specifically in terms of the future treatment course (Cartwright & Magee, 2006; Davalbhakta & Hall, 2000; Farrimond, Morris, & Bristol, 2004; Martin, 1995; Prahl-Andersen & Aartman, 2010; Semb et al., 2005). These studies mostly focused on the diagnosis, the birth, and the first months of life, with little research investigating parents’ and patients’ needs during childhood and adolescence (Nelson & Kirk, 2013). Moreover, the aforementioned studies used questionnaires to investigate these different topics. While questionnaires provide a structured forum to help clinicians and researchers identify issues that are relevant to the individual using a set of pre-identified themes, they might be inappropriate to detect in-depth experiences (Harris, 1976; Sutton & Austin, 2015; Van IJzendoorn, 1986). Qualitative research can respond to this limitation by providing in-depth information and insights about the parental perspectives and expectations starting from an emic perspective (i.e., “the insider's view”: experiences, feelings, and perceptions of the parents or patients) rather than the etic perspective (i.e., “the outsider’s view”: the view of the researcher) used in surveys (Harris, 1976; Sutton & Austin, 2015; Van IJzendoorn, 1986). An important limitation of etic perspectives is the possibility of receiving expected responses rather than true attitudes or knowledge (Bonner & Tolhurst, 2002). Emic perspectives, on the contrary, are less inclined to construct stereotypes and provide the opportunity to fully involve with the participants and their activities (Bonner & Tolhurst, 2002).
Nelson and Kirk (2013) and Myhre, Agai, Dundas and Feragen (2019) were among the first to investigate parents’ perspectives on multidisciplinary craniofacial teams using an emic perspective. Thirty-five parents of children with a CP ± L and forty-eight parents of children with congenital craniofacial anomalies were interviewed. Interestingly, a lack of information concerning future treatment was found to be a recurrent theme in both studies. Parents wanted better coordination of services with regard to communication about surgical cancellations and a key professional to link with throughout their child’s treatment course (Nelson & Kirk, 2013). Another common theme was the health professionals’ communicative skills. Satisfaction with the provided services was related to the perception of cleft-care professionals as highly communicative, competent, and trustworthy (Nelson & Kirk, 2013). Clear and comprehensive communication was described to be crucial for the participants’ involvement in the treatment process (Myhre et al., 2019). A lack of adequate communication was associated with feelings of being objectified or being only a medical case or an interesting diagnosis (Myhre et al., 2019).
Most studies have focused on parental satisfaction and perspectives with the complete, multidisciplinary treatment course. Although speech therapy forms a key element in the treatment of children with a CP ± L (Bessell et al., 2013), parental perspectives on and experiences with this particular domain remain unidentified. An attempt to investigate parental experiences beyond the level of the global treatment process was made by the Eurocleft Study (Semb et al., 2005). Parents were asked if they would have liked to get more information from the (1) ear, nose and throat specialist, (2) the orthodontist, (3) the speech therapist, and (4) the surgeon. It was found that 33 % of the parents wanted more speech therapy-related information from the speech therapists (Semb et al., 2005). Parents considered speech disorders to be one of the most important issues for their children, discouraging them from communicating with others and influencing their child’s quality of life (Zeraatkar, Ajami, Nadjmi, Faghihi, & Golkari, 2019). These findings highlight the current need to clarify parents’ expectations in the context of speech therapy delivery (Carroll, 2010).
The aim of the present study was to provide in-depth insight into parental perceptions and expectations concerning speech therapy-related cleft care using a qualitative design based on semi-structured interviews.
Section snippets
Methods
This study was approved by the Ethics Committee of the Ghent University Hospital (2014/0932). All parents participated voluntarily and signed an informed consent. Individuals were not paid for their participation in the study.
Qualitative analysis
Qualitative analysis resulted in the identification of three major themes: (1) service provision, (2) patient-centered care, and (3) seeking health care (Table 2). Each of these themes contained three subthemes. Service provision included the effectiveness of the provided service, interdisciplinary collaboration, and expertise of the speech therapist. Information provision, child-friendly attitude and connection were categorized under patient-centered care. Seeking health care included
Discussion
The present study investigated how parents of children with a CP ± L perceived and experienced the speech intervention received from the community SLPs. The qualitative analysis of the semi-structured interviews resulted in three higher level themes: (1) service provision, (2) patient-centered care, and (3) seeking health care (Table 2).
Conclusion
The present study investigated parental expectations regarding speech therapy-related cleft care using qualitative analysis of semi-structured interviews. The analysis resulted in three major themes: (1) service provision, (2) patient-centered care, and (3) seeking health care. The most important expectation was that parents wanted to see their children progress as a result of the treatment. The parents also reported a need for more comprehensive and clear information from the SLPs. Several
CRediT authorship contribution statement
Cassandra Alighieri: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Writing - original draft, Writing - review & editing. Wim Peersman: Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Supervision, Writing - review & editing. Kim Bettens: Conceptualization, Formal analysis, Investigation, Methodology, Writing - review & editing. Vienna Van Herreweghe: Conceptualization, Data curation, Formal analysis,
Declaration of Competing Interest
There is no conflict of interest.
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2021, International Journal of Pediatric OtorhinolaryngologyCitation Excerpt :In addition, this treatment style involves providing a meaningful rationale for why hard exercises (or in this case high intensive exercising) are relevant for real life [37]. In general, the need for a good connection between the patient and the therapist was also reported by earlier qualitative studies in parents of children with a CP ± L. Alighieri, Peersman [6] found that patient-centered care and a child-friendly attitude was essential to parents of children with a CP ± L. The parents in the HISI group highlighted that the intensive program enhanced the patient-therapist relationship.
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