Family-Centred Approach for Autism - Essay Example

FAMILY-CENTRED APPROACH FOR AUTISM Student’s Name Course Professor’s Name University City(State) Date Family-Centred Approach for Autism Family-centred care (FCC), in its general sense, is a partnership healthcare approach involving the family of a patient and the health care provider for improved patient outcomes (Kuo et al. 2012; Christon and Myers 2015). The recent past has seen the approach receive a widespread endorsement from various health care spheres and experts. Its particular principles are thought to be the paediatric health care standards, especially in the context of child health, but also in other areas of health care practice. Fingerhut (2013) adds that, in paediatric occupational therapy, the practice entails health care service provision in conjunction with families, parents, and the young special needs patient to improve their life in the course of the engagement. Essentially, family-centred care practice comprises eight unique, but interconnected service spheres within the occupational healthcare realm (DeGrace 2016). The eight areas include considering the family the epicentre of the intervention, the application of the social systems framework, enhancing the family capabilities, empowering it (the family unit), wide professional roles and their performance, focusing on behaviours that produce growth rather than treating the problems, strengthening the social network of the family unit, and concentrating on the needs of the family. It is noteworthy that practitioners have always worked along these lines, even in cases that do not involve the application of the family-centred health care approach. Treating the approach as a partnership arrangement also reveals certain constructs of this approach that are pertinent in grounding this discussion. One of the areas of concern is the means through which the family outcomes will be identified. According to Hogetts et al. (2013), can be measured through a consideration of both the professional and parents’ opinion on the practice. In one study, for instance, ‘parents and professionals had high and positive perceptions of the family-centred care for disabled children in early intervention settings’ (pp. 139). The author adds that studying the unique needs and family experiences of the children with autism would be would be pertinent to gauging the outcomes given that the experiences usually differ from one family to the other, thus, the outcomes will be distinct as well. However, while this would be helpful, very little research has made an attempt at comparing the FCC perceptions among the various contexts in which the care is provided. Kyler (2008) views these constructs as the keys to family-centred care approach partnerships. The first key is the understanding that the family and the professionals should sacrifice their interests for that of the child and the family unit. In the course of their growth, the child may assume their active participation role in the arrangement. Similarly, within the partnership, every party has to revere and respect every decision and opinion of the other party with trust being the fundamental driver of the relationship (Kyler 2008; Russa, Matthews and Owen-DeScryver 2015). Finally, objective sharing and communication are encouraged with an ever existing opportunity for negotiation of the contentious matters between the practitioners and the family unit. In line with the keys and in a bid to clear the existing confusion concerning the concept, Kyler attempts to shed light by speculating some of the possible contributions of the partnership which, for some, may seem as its advantages. In particular, family-centred care focuses on the strengths of the family unit with the consideration that the partnership is the inalienable constant in the life of the child (Christon and Myers 2015). While at it, the collaborative and bidirectional relationship coaches the child and supports them towards a realisation that their contribution is important in the decision-making process. Also, besides honouring and upholding the family traditions, the arrangement develops the systems, practices, and policies that are not only family-centred but are also family-friendly in all settings of the service provision. The final aspect of the relationship is to celebrate the successes and seal the loopholes that may discourage success. The family-centred approach comprises a variety of tools which, despite their structural differences, still recognizes the central role that the family unit plays in the relationship and shares a goal of improving the life of a child and enhancing the outcomes of their health care. Historical Underpinning of Family-Centred Care Since various authors seem to contend that practitioners are struggling to find the actual meaning g of family-centred care despite having practiced some of its principles over the years, it is important to historically situate this concept with a view to harmonising the existing differences also adds that the gaps in the contemporary understanding of the concept would necessitate a historical review of family-centred care (DeGrace 2016; Kyler 2008; Fingerhut 2013). Kuo et al., (2012). Family-centred care traces its roots back to the year 1802 in Paris, France when L’Hopital Des Enfantes-Malades resolved to care exclusively for children. The same case applies to the Children’s Hospital of Philadelphia in the year 1855 (Kuo et al., 2012). In both cases, the children’s families were urged to admit their children in the institutions for a more focused care. During the 20th century, the facilities began to report cases of trauma that resulted from the separation of children and their families. As such cases increased, hospitals and care facilities changed their policies to accommodate open visiting hours, families accompanying their children to surgeries, rooming-in, and sibling visits (Kuo et al. 2012). Family advocates became the cornerstone of hospital-based care for the family units and the children in the same manner as they did during the deinstitutionalization of disabled children within the community settings. They played a key role in the formulation and implementation of the first law of special education (P.L 94-142) in the year 1975 as well as the subsequent but associated laws. It is the merit of family advocacy for special needs children that threw it into the health care policy arena. Through the support of the family advocates, the Maternal and Child Health Bureau (MCHB) and other organisations sponsored and facilitated numerous forums and conferences on the subject throughout the 1980s. All the responsible groups of people, including researchers, experts, paediatricians, and policymakers came together to get the views of the families on the specifics of providing home-based care. Trust, the importance of joint decision-making, respect and healthy partnership were some of the points that dominated the discussions (Piskur et al. 2012). In light of these developments, Surgeon General, in the year 1987, set out to champion for ‘coordinated family-centred, community-based care for children with special health care needs and their families’ (Kuo et al. 2012, pp. 300). Similarly, two years later, the MCHB ratified its mission to ‘provide and promote family-centred, community-based, coordinated care for children with special health care needs and to facilitate the development of community-based systems of services for such children and their families’ (Kuo et al. 2012, pp. 300). By the year 2003, the American Academy of Paediatrics (AAP) had made great strides in incorporating family-centred care and its approaches into most of the policy statements and affirming the practice as the benchmark health care framework for children. Today, family-centred and person-centred care practices form an integral part of health care policies like the Healthy People 2020 and the Affordable Care Act. The most recent developments in the field, according to Kuo et al. (2012), comprise of the campaigns to establish a Patient-Centred Outcomes Research Institute that would streamline the principles of both FCC and PCC with a view to enhancing the effectiveness of the frameworks. Occupational Therapy Intervention Approaches for Children with Autism According to Hussein, Taha and Almanasef (2011, pp. 1), ‘Autism Spectrum Disorder (ASDs) are complex neurodevelopmental disorders characterized by qualitative impairments in three domains: social interaction, communication, and repetitive, stereotyped behaviour.’ Research indicates that children with ASD have the impact of their behaviours affect the usual roles and activities like learning and play, and the impacts vary from one family to the other depending on its norms like marriage or religious culture (Gabovitch and Curtin 2009). Autism and the related disorders affect the family unit in many areas ranging from financial to social impacts. A family will have to adjust, for instance, their social practices with a view to providing a conducive caring environment for their ailing relative. DeGrace (2016) adds that a family is important in the sense that its customs and beliefs provide a firm support for the manner in which it engages and participates in the care. On this note, there is a wide spectrum of family-centred care approaches whose applications are context-specific. Even so, Gibbs and Toth-Cohen (2011), proposes that when formulating a home-based program for care, the occupational therapists must ensure that they consider the occupations of the child, their family, and the overall care environment. Concerning the occupations of the child, the primary goal of the therapist is to inculcate and promote the necessary skills for the child to cope with life. In this respect, social interaction and development, and play often become the focus. Since family-based care approaches and programs interfere with day-to-day family routines, health care providers must ensure complete parent engagement and a bidirectional relationship with a view to facilitating an achievement of the set goals (Gibbs and Toth-Cohen 2011; Cunningham 2007; Kitchen 2005; Case-Smith and Arbesman 2008). It is the genuine partnership between the two parties that cement any family-centred approach intervention. Additionally, the specific approach must consider the economic circumstances of the family given that most people are reeling from economic hardships currently. While evidence shows that clinic-based services are crucial for the parents, it is important to acknowledge that the cost has always been the primary concern in managing ASD for the families of the children (Samadi, McConkey and Kelly 2012). The determination of the most suitable approach for a particular context depends on these considerations and others. There are two main areas of family-centred care that define the suitable individual approach: sensory motor integration and general skill building (Law 2006). The author (Law) speculates that these two areas define most approaches and sets precedence for the implementation of interventions such as self-regulation, interaction style, and oral motor or feeding. Over the past years, sensory motor integration has been the most commonly used sensorimotor approach for occupational therapy (Bulkeley, Bundy, Roberts and Einfield 2016). Law (2006) notes that in one of the 2002 surveys, the author (Law) was concerned about the applicability of some of the sensorimotor interventions in cases of children with ASD given there was little evidence to corroborate their adoption. Even then, there is a large body of evidence that supports the claim that ASD children patients have a different sensory information processing procedure than other children during their developmental stages (Russa et al. 2015). On this note, it is suggested that the therapists apply a consultation or mediator approach to form a collaboration with parents and teachers to stop extreme responses to daily sensory experience. It is noteworthy that these approaches are context-specific. Saudi Arabia, located in the Arabian Peninsula, is the headquarters of Islam (Alqatani 2012) with all the citizens being Muslim. The cultural surrounding, therefore, is highly conservative with respect to strict adherence of the Islamic Law. In terms of healthcare, while public and private hospitals exist all over Saudi Arabia, the citizens still prefer outside treatment especially in the Western countries. Neither accurate statistics nor official records on autism in SA exist (Alqatani 2012); however, unofficial records have noted with concern the continuous prevalence of the disorder. One of the estimations was the 2002 one which projected the figure of autism cases at forty thousand (Alqatani 2012) with a high possibility of several other misdiagnosed cases. Despite the magnitude of the problem, Alnemary and Aldhalaan (2016) notes that the country currently has limited ASD services with little information as well. In Alnemary and Aldhalaan (2016)’s study, they found that several children in the Kingdom of Saudi Arabia were not receiving early intervention services before 3 years of age which is projected to be a product of the special education law in Saudi Arabia. In particular, ASD services in minor cities within KSA are limited, thus, forcing the families from such cities to seek treatment in the major cities. Given the situation, general skill building methods would best suit Saudi Arabia. It entails those approaches that enhance the ability of the child, despite their health condition, to take part in daily life activities including at school and during play (Weaver 2015; Jeffries 2009). General skill building approaches are more consultation-oriented as opposed to direct intervention (Dempsey and Keen 2008). Simpson (2015) echoes the findings of several studies that intervention approaches focused on the family and the child’s natural environment tend to achieve greater occupational participation, learning, competence and development. Coaching is one of the approaches. Graham et al. (2010) asserts that the method is used to improve the partnership between the professionals and the parents and enable the parents to facilitate the work of the professionals in caring for the child. It is also popular since it preserves family aspects such as culture, practices and norms. One way of coaching according to Graham et al. (2010) involves coaching the parents to identify means of bettering the synchrony between the environment, the child, and their task elements for enhanced performance. In Saudi Arabia, Al-Salehi, Al-Hifthy and Ghaziuddin (2009) assert that the common problems of socialization or communication, among others, cause primary care referrals of children with ASD. On the same note, child psychiatric services are underdeveloped in Saudi Arabia (Al-Salehi et al. 2009). The complex marriage norms and general cultural specifications of Saudi Arabia will be less affected by coaching as an approach as opposed to the other approaches (Simpson 2015). Coaching, as opposed to the other approaches, will focus on the parent-child relationship within their original environment replete with their normal routines, activities, and norms (Simpson 2015). The approach enables the parents to fully participate and master the requisite skills for helping the child adapt to their natural environment and cope with the potential adjustments in the course of their development. It is important for an intervention practice or approach to maintain the normal setting of the family and retain the norms, however, in this case, the norm contributes to the prevalence of autism; thus, it would be more helpful if the applicable intervention had some level over the norms to the extent of effecting certain changes. As it stands, coaching would just intervene on a problem whose end, in light of the marriage norms, is unforeseeable. Paradoxically, the importance of coaching in the Saudi Arabian culture is that it seeks to solve the problem without interfering with the basic tenets of the culture (Christon and Myers 2015; Brookman-Frazee 2004). On the overall, it is noteworthy that all the sensorimotor interventions above could also be tailored to suit the Saudi Arabian culture. Just like coaching, parent education would be highly applicable to the case of Saudi Arabia, in particular, the Pivotal Response Training (PRT) method (Koegel, Symon and Koegel 2002). It encompasses the selection of processes and approaches whose correct implementation produce collateral enhancement and amelioration in untreated areas of behaviour such as reduction in irrelevant pragmatic behaviour (Koegel et al. 2002). In this respect, parent education on the motivation-centred procedures ensures that the parents work to improve the situation for individuals with autism. In other words, responsivity enhancements occur as a result of implementation of motivational procedures (Koegel et al. 2002). Literature research confirms high efficacy of this approach. Efficacy, Benefits and Barriers to FCC According to Rocha, Schreibman and Stahmer (2007), previous research has successfully verified the fact that parents of ASD children can deliver behavioural intervention approaches effectively, especially those that target communication and language skills, following coaching. The author adds that the body of research also validated the existence of child behaviour improvements following parent-implemented behavioural interventions. Rogers et al. (2014) echo Rocha at al. (2007)’s sentiments and add that the efficaciousness of the approach depends on parent coaching, length and frequency of the intervention, tailor-made activities that meet the needs of the family and the child, and early commencement of the intervention approach. Parents and medical professionals have, in the past, expressed commendable levels of satisfaction and confidence in telepractice and Comic Strip Conversations (FCC practices), thus, supporting the workability of these approaches in a variety of contexts (Vivian, Hutchins and Prelock, 2012). Besides, in a study dubbed ‘Feasibility and potential efficacy of the family-centred prevent-teach-reinforce model with families of children with developmental disorders,’ Bailey and Blair (2015) found out that family-centred PTR process was highly effective in enhancing the parents’ ability to design and implement a wide range of interventions with high fidelity; and, the plans significantly increased replacement behaviour with a consequential reduction in problem behaviour among the children. These findings add credibility to the presupposed effectiveness and efficacy of the family centred approach. Thus, in a bidirectional relationship where the care providers team up with the family of the patient, it is highly likely that the approach will work. Hodgetts, Nicholas, Zwaingenbaum and McConell (2013) note that the pervasive impact of ASD on the normal lives of people makes it necessary for adoption of a treatment intervention that addresses the needs of the whole family rather than just that of the patient. The family-centred approach, by its very name, has the benefit of taking a special look at the entire family and focuses on improving their wellbeing. Besides, FCC enhances family engagement and participation and ensures that their opinions and standpoints are fully taken into consideration as part of the intervention. In this manner, reduces any possible trauma on the children, and doubles the chances of obtaining positive outcomes from the treatment (Kuo et al., 2012; Symon 2005). Finally, the FCC maintains the environment and, in some cases, make it better for a speedy positive treatment outcome. Hodgetts et al. (2013) and Graham et al. (2015) describe it as containing lifespan approaches that take into consideration the fact that the development of skills transcends childhood, thus, takes care of the needs of the family unit throughout the period of engagement. One study found that the family-centred practice barriers, according to the respondents, drew largely from two major themes: family and practice setting characteristics (Fingerhut et al. 2013). Kuo et al. (2012) enumerate the particular barriers. In their view, understanding the tenets of the practice, support for the approach, and the lack of high quality research to shed more light on the concept continue to plague its effective implementation. However, Humphry (1995) names chronic poverty as the greatest challenge to the access of family-centred services, thus, limits access to the approach and barricades its use. Occupational therapists find it hard to treat families that languish in extreme poverty. According to Kuo et al. (2012), the successful elimination of these barriers is the recipe for effective family-centred practice moving forward. References List Al-Salehi, SM and Al-Hifthy, EH 2009, ‘Autism in Saudi Arabia: Presentation, Clinical Correlates and Comorbidity’, Transcultural Psychiatry, Vol 46(2): 340–347. Bailey, KM and Blair, KC 2015, ‘Feasibility and potential efficacy of the family-centered Prevent-Teach-Reinforce model with families of children with developmental disorders,' Research in Developmental Disabilities, 47, pp. 218–233. Brookman-Frazee, L 2004, ‘Using Parent/Clinician Partnerships in Parent Education Programs for Children with Autism,' Journal of Positive Behavior Interventions, 6, 4. 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