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 Table of Contents  
ORIGINAL ARTICLE
Year : 2017  |  Volume : 4  |  Issue : 3  |  Page : 105-112

Healthcare providers' psychosocial support for patients with a cleft: Europe and Australia


1 Dental Department/Cleft Lip and Plate Unit, Princess Margaret Hospital for Children, Perth, Western Australia
2 Department of Computing and Information Technology, Curtin University, Perth, WA
3 Department of Physical Medicine and Rehabilitation, Marmara University Pendik Research and Training Hospital Istanbul, Istanbul, Turkey
4 Riga Cleft Lip and Palate Centre, Riga Stradinas University, Riga, Latvia
5 Department of Orthodontics, Riga Cleft Lip and Palate Centre, Riga Stradinas University, Riga, Latvia
6 Dentistry Clinic, Faculty of Medicine, University of Nis, Nis, Serbia
7 Plastic and Craniofacial Unit, Medical University Plovdiv, Plovdiv, Bulgaria
8 Department of Physical Medicine and Rehabilitation, School of Medicine, Marmara University Hospital, Istanbul, Turkey
9 Centre for Appearance Research, University of West England, Bristol, England, UK

Date of Web Publication21-Nov-2017

Correspondence Address:
Wendy Nicholls
Princess Margaret Hospital, Dental/Cleft Lip and Palate Unit, GPO Box D184, Perth 6984
Western Australia
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jclpca.jclpca_62_17

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  Abstract 

Background: The long-term care of patients with a visible appearance difference may involve many years of multidisciplinary treatment. In addition to providing the physical treatment component, support for the emotional and psychosocial implications must also be considered. The primary objective of this project was to survey healthcare professionals (HCPs) from each of the participating countries to ascertain their level of awareness and understanding of the issues facing those with visible differences, their level of confidence in supporting those patients, and their current and required level of training. Secondary objectives were to gauge the perceived importance of appearance and the psychosocial impact for individuals with visible differences. Methods: Questionnaires were completed by multidisciplinary HCPs in four European countries and Australia. Results: The results for all countries (110 participants) indicate that the majority of HCPs do not feel confident in dealing with the psychosocial needs of people with an appearance disfigurement. Conclusion: All countries identified and supported the need for training of multidisciplinary HCPs to be able to identify and support the psychosocial problems experienced by individuals and families. A collaborative future training program aimed at providing effective psychosocial support and was identified to be the most efficient mode to meet the training requirement. Provision of training will offer the knowledge base for effective psychosocial support and address the unintentional marginalization and social exclusion that may occur by untrained HCPs.

Keywords: Cleft lip and palate, healthcare providers, psychosocial, training and education, visible difference


How to cite this article:
Nicholls W, Harper C, Tural S, Maulina I, Zepa I, Radojicic J, Pešic Z, Velikova R, Saygi EK, Persson M. Healthcare providers' psychosocial support for patients with a cleft: Europe and Australia. J Cleft Lip Palate Craniofac Anomal 2017;4, Suppl S1:105-12

How to cite this URL:
Nicholls W, Harper C, Tural S, Maulina I, Zepa I, Radojicic J, Pešic Z, Velikova R, Saygi EK, Persson M. Healthcare providers' psychosocial support for patients with a cleft: Europe and Australia. J Cleft Lip Palate Craniofac Anomal [serial online] 2017 [cited 2022 Jan 27];4, Suppl S1:105-12. Available from: https://www.jclpca.org/text.asp?2017/4/3/105/218880


  Introduction Top


The long-term care of patients with a cleft, craniofacial, or any other condition which results in a visible abnormality may involve many years of multidisciplinary treatment. Accompanying treatment, there may also be considerable psychological and social challenges for the individuals and their families.[1]

In addition to providing the physical treatment, support for the psychosocial implications that may arise during this long-term treatment commitment must also be considered and incorporated into the provision of care. However, the provision of a full-time psychologist may not be considered economically viable.

This issue was addressed at the European Parliament, “The challenges of health inequalities in the treatment and prevention of birth defects in Europe: An information workshop for Members of the European Parliament and non-governmental organizations (NGOs) at the European Parliament.”[2] It was reported that due to limited psychosocial resources, many healthcare professionals (HCPs) did not have adequate psychosocial training to assist patients and their families. From this meeting, it was suggested that appropriate provision of care to families affected by birth defects cannot consistently be provided, and unintentional marginalization and social exclusion may also occur by uninformed and untrained HCP.

People living with a visible difference have reported that HCPs have insufficient awareness and understanding of the specific challenges they may face;[3],[4],[5] and from a clinical perspective, HCPs themselves have reported having insufficient time and little confidence in meeting these patients' information and support needs.[6],[7],[8]

While the provision of a full-time psychologist in each team to provide psychosocial support is not commonly achievable due to financial constraints, a more realistic and viable alternative is to provide appropriate training for the frontline specialists, in particular, nursing staff, to enable an equivalent effect.

The purpose of this study was to assess the subjective knowledge and perception of care provision among a diversity of HCPs from Australia and the European countries of Bulgaria, Latvia, Serbia, and Turkey. The partners from the European countries also participated in a related study – Face Value: Optimizing the psychosocial care for individuals with birth anomalies in Europe. Project reference number: 2014-1-UK01-KA202-001615. The Face Value project provided the opportunity for the lead author to collect data from HCPs at their treatment centers with the view to propose participation in a future Face Value initiative in Australasia.


  Methods Top


Participants

For the European countries of Bulgaria, Latvia, Serbia, and Turkey, a convenience sample of 15 HCPs was recruited at each center (see below for center information). All members of the cleft teams were invited to participate, and included the following disciplines: plastic surgeons and nurses, oral surgeons, liaison nurses, feeding nurses, speech pathologists, neonatal nurses, outpatient nurses, orthodontists, Ear, Nose, and Throat surgeons, audiologists, physical therapists, unit coordinators, support service (administrative personnel), and dental surgeons.

Cleft centers participating in this study

Australia

Cleft centers in Western Australia, Victoria, New South Wales, and Queensland were included in this study. The Princess Margaret Hospital Cleft Lip and Palate Unit is the longest serving cleft unit in Australasia and is the only cleft unit in Western Australia. The Medicare Cleft Lip and Cleft Palate Scheme funds the treatment costs for specialized services that this condition requires (Medicare, 2010).

Bulgaria

The Plastic and Craniofacial Unit of the Medical University of Plovdiv, Bulgaria, is the specialized center for the treatment of cleft lip and palate, treating 60–80 new cases per year. This center works in synergy with the Parent's Association-ALA, both created in 1997.

Latvia

Riga Cleft Lip and Palate Center at the Institute of Stomatology (under the Riga Stradins University) is the only referral unit for cleft children in Latvia. The unit annually provides treatment to an average of 30 live cleft lip and palate births.

Serbia

The Clinic of Dentistry in Nis is primarily concerned with orthodontic treatment of patients with cleft, with over 100 patients annually being treated at this clinic. Orthodontic treatment is carried out until the end of growth or longer.

Turkey

The Department of Physical Medicine and Rehabilitation of Marmara University Pendik Research and Training Hospital provides treatment to maximize the abilities of each patient, minimize the effects of their impairments, and provide information about their rehabilitation process.

Institutional ethics

The Ethics Review Committee at the Princess Margaret Hospital for Children in Perth, Western Australia approved this study (2014/046).

Instrument

The questionnaire used in this study was designed by the lead author with expert input from the Princess Margaret Hospital cleft team in collaboration with the coauthors. The questionnaire was translated from English to the native language of each European country and responses then translated back to English for collation and analysis by the lead author. The questionnaire was piloted, and after minimal changes, the resulting questionnaire comprised 14 close-ended questions with invitation for elaboration or comment for each question. The questions were designed to include the following themes:

  • The importance of appearance in their society;
  • The psychosocial impact for individuals with visible differences;
  • The level of awareness and understanding of the issues facing individuals with visible differences;
  • The level of confidence in supporting patients with appearance-related concerns;
  • Current and required level of training for HCPs involved in the care of people with any visible appearance disfigurement. General demographic data were also collected. A copy of the questionnaire is available from the author on request.


Data analysis

Microsoft Excel 2016 (Microsoft Corporation Albuquerque, New Mexico, United States), was used for data storage and creating tables for descriptive statistics. To simplify comparisons, the data were categorized as follows:

  • Age and professional qualification year were grouped into 1-year intervals
  • Years of service were grouped into 5-year intervals
  • All forms of nurses and surgeons were grouped into a generic professional category of “nurse” and “surgeon”
  • Responses for specific questions used Likert scales
    • Societal importance of appearance: “very important,” “important,” “moderately important” and “not important”
    • Societal treatment of individuals with visible difference: “differently,” “normally,” “poorly” and “well”
  • Responses for all other questions were grouped into “yes,” “no,” “sometimes” and “unknown”
  • Comments were categorized based on common terms observed in the free-form text.



  Results Top


Demographics

Respondents were HCPs from multidisciplinary areas, working in cleft teams. All 60 of the European respondents were interviewed in person. Of the 50 HCP respondents from the Australian centers, 10 were interviewed by telephone, 20 were interviewed in person, and 20 returned completed E-mail surveys. There were 66 females and 44 males in this study offering an even gender distribution for the majority of countries except Latvia and Turkey, which had an overrepresentation of females [Table 1]. There was variation in the composition of the teams with professions of audiologist, clinic coordinator, and dental specialties absent from the European sample. Surgeons were the highest surveyed profession, being overrepresented in Australia and Bulgaria. Turkey was limited to two professions of nurses and physical therapists.
Table 1: Respondent demographics

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Questionnaire responses

Appearance in society

A total of 90.9% reported appearance to be “very important” or “important” (Australia 100%, Europe 83.4%). The majority (92.7%) thought people spent time taking “selfies” to upload to social media (86.7% of the Europe group [93% of Latvia and Serbia and 100% Turkey] and 100% of the Australia group). Respondents also had a very high agreement when asked if they thought that cosmetic procedures and/or cosmetic surgery have increased in their society, 86.7% of the Europe group and 100% of the Australia group.

The impact of visible differences

When asked how they thought their society treated people with a visible difference, 59.1% overall indicated they believed they were treated poorly; however, there was a large variation in response, with the Europe group reporting 33.3% compared to 90% by the Australia group.

When asked whether there were positive or negative impacts for an individual with a visible difference in their society [Table 2], responses were consistent with a high negative impact reported across both groups (with 100% of the Australia group). The majority (91.8%) also agreed that people with a visible appearance difference faced psychosocial challenges. Comments included “low self-esteem,” “awkwardness,” “body-esteem issues,” “socially shy,” “afraid of being teased,” and “afraid of being looked at or being made fun of.”
Table 2: Impact of visible appearance on the individual and the family

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In relation to HCPs' perception of teasing and bullying, 70.9% believed that individuals with visible differences do suffer teasing and bullying (82% of the Australia group vs. 61.7% of the Europe group). When asked if they believed that individuals with visible differences are negatively stereotyped, 36.4% agreed and 60.0% did not agree (48.3% of the Europe group and 64% of the Australia group). The HCPs were also asked if they believed that an individual with visible difference who also belongs to a social disadvantaged group would face more psychosocial challenges. About 80% of the European group believed that they would encounter more challenges, while only 24% in the Australian group believed so.

There was a very high agreement (95.5%) for responses to the question of whether respondents thought that having a member with a visible difference impacted the whole family [Table 2]. The HCPs were also asked their views about the following: how siblings are affected, if it makes the family stronger, if there would be a potential drop in family income, and if the family would experience stress. The response of whether siblings received less attention resulted in high disparity (Europe 31.7%, Australia 94%) to a “Yes” response. When asked whether they felt that it made the family a stronger, there was also disparity, with 48.3% of the Europe group and 86% of the Australia group responding “Yes.”

When asked if they thought there was drop in family income, 21.7% of the Europe group and 66% of the Australia agreed. Both groups agreed there was more family stress or tension from having a family member with a visible difference (Europe 70%, Australia 100%).

There was a small disparity between responses (Europe 40%, Australia 58%) indicating a “No” response for whether they felt that academic achievement was affected for people with a visible difference [Table 3]. Of whether they thought it limited job choice, a “Yes” response was reported by at 63.3% by the Europe group and 34% by the Australia group.
Table 3: Beliefs about impact of school achievement and limitation to choice a job

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Confidence and training

In total, 37.3% of HCPs felt confident in addressing the psychosocial needs of their patients [Table 4]. There was an appreciable difference between the results for each group; 14% of the Australia group and 56.7% of the Europe group reported they were confident in addressing those needs. However, no respondents from Latvia felt confident in addressing the psychosocial needs of these patients. Comments included “not confident – will refer to the GP,” “feel confident at a low level,” “would refer to GP for psych,” and “only at a low level.”
Table 4: Training and support

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When asked if they would be interested in undertaking training or further training in supporting others with psychosocial issues, 98% of the HCPs indicated that they would like to receive further training and the majority (98%) believed that a training course would be the best mode of delivery.


  Discussion Top


Limitations

The use of the included European countries was based on their participation in the European project Face Value and consequently limited the choice of countries to participate. Self-selection of respondents may not be a representative sample of the different types of HCPs. Future studies may include a greater range of participant countries to determine further outcomes. Other study methods may allow greater exploration of respondent attitudes and beliefs and may include patient involvement.

The results from this study support the premise that many HCPs have insufficient understanding of the specific challenges faced by those with a visible appearance difference. Appearance dissatisfaction is a significant and prevalent concern affecting increasing numbers of adolescents and adults.[9] This dissatisfaction is created by the belief that appearance is highly valued in our societies. The high importance of societal appearance and image is reflected with the HCPs' views concerning the societal treatment of individuals with a visible appearance difference. The response that individuals with a visible appearance difference were treated negatively in our current society was three times greater in the Australia group than the Europe group response.

The media has been accused of endorsing the premise that a person's worth is based on their appearance and investing in appearance insecurities by promoting legitimacy to cosmetic procedures as a valid solution to both appearance insecurities and appearance dissatisfaction.[10],[11] Surgeons may limit a patient's options to improve their self-perceived appearance if they hold the belief that surgery is the best or only solution for appearance dissatisfaction.[1] Surgeons were the highest surveyed profession in the current study and were mixed in their beliefs of surgery being the most appropriate solution for appearance dissatisfaction.

All participants indicated their awareness of contemporary societal focus on appearance, which has the potential for adverse consequences including negative body image as a principal component and predictor of lowered self-esteem,[12] emotional distress,[13] depression,[14] habitual negative thinking,[15] and social anxiety.[16] Many studies report less satisfaction with facial appearance for patients with a cleft compared to control groups.[17],[18],[19],[20],[21],[22],[23] Rieves and Cash[17] propose that appearance dissatisfaction may be experienced by those who do not feel they fit in with society's ideals or norms.

Responses in this study were in agreement concerning a high negative impact of a visible difference and also high agreement that they thought people with a visible difference faced psychosocial challenges. Teasing, stigma, and unwanted comments and attention have been reported to cause discomfort in a number of other studies.[24],[25],[26],[27]

Bessell and Dures[28] acknowledged the low and absent levels of information and expertise for managing patient appearance and psychosocial needs both from a team and referral perspective. While over half of the Europe group felt confident in addressing the psychosocial needs of patients with a visible difference, <15% of the Australia group felt confident in this matter. The results from the Australia group may reflect that a large proportion of their team members may have been trained with the traditional “medical” model of patient treatment whereby emphasis is placed on the physical components,[29] as opposed to the “biopsychosocial model” of patient treatment which incorporates biology and psychology with social systems and practices.[30] This model acknowledges that consideration needs to be given to the psychosocial implications of appearance dissatisfaction as well as the physical component.[31],[32] The disparity between the groups may also be partially due to the limited exposure and understanding by the European group of psychosocial issues which has led to a greater confidence in dealing with these issues than the Australian group who may better understand the complexity of psychosocial issues and consequently feel less confident with psychosocial issue management. This may also be evidenced with the results of the questions regarding whether HCPs had received any training concerning the psychological impacts of disfigurement and how they would meet the needs of patients, with 76% indicating that they had not received training and 52% indicating that they can refer to support services.

The very high agreement (98%) that HCPs in this study would be interested in undertaking training or further training, preferably as a training course, in supporting others with psychosocial issues may be seen as indicative of willingness to learn the skills to provide more effective care. Wilkinson and Roberts[33] found that following a training course, there were significant improvements in the communication skills for nurses working in palliative care, including more confidence for managing difficult issues and the development of their skill and knowledge base. This may be seen not only as a means for effective care but also as HCPs' wishing to ensure personal professionalism ensuring effective interactions with their patients as defined by the United Kingdom Health and Care Professions Council.[34]


  Conclusion Top


This study determined the high need for training of multidisciplinary HCPs to be able to identify the psychosocial problems which may affect individuals with a visible appearance difference and how to provide appropriate care and support.

Implications for nursing and/or health policy

Nursing intervention and support is required for the physical treatment as well as the emotional and psychosocial implications that may arise from the long-term treatment commitment of individuals with a visible appearance difference. Nursing is an integral part of the care of patients with cleft and other visible difference over the patient's lifespan that may include many years of continued care. To ensure appropriate and effective care is delivered, adequate psychosocial training is required.

Generalizability

A collaborative future training program aimed at providing effective and relevant psychosocial support was identified to be the most efficient mode to meet the training requirement of HCPs. It is therefore recommended that a complete Face Value program, including on-going training and follow-up, be made available to all HCPs caring for individuals with a visible difference.

Acknowledgment

The authors would like to acknowledge the participation of the HCPs who contributed to this study.

Financial support and sponsorship

This survey has been partly funded for the European partners with support from the European Commission (2014-1-UK01-KA202-001615). This publication (communication) reflects the views only of the authors, and the Commission cannot be held responsible for any use, which may be made of the information contained therein.

Conflicts of interest

There are no conflicts of interest.

 
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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4]


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