ABSTRACT
Background: An understanding of where families affected by Autism Spectrum Disorder (ASD) seek help is important in the development of services in a country like Ghana where speech and language therapy is a relatively new concept. It appears there is very limited literature related to the help-seeking behaviour (HSB) of parents of children with ASD in Ghana. It is important to respect where parents seek help from in order to build on the existing practices in the provision of services.
Aim: The aim of the study is to explore the help-seeking behaviour of parents of children with ASD in the city of Accra, Ghana.
Method: The study employed a qualitative design specifically, phenomenological approach. A convenience sampling technique was employed to select 10 parents of children with ASD. A semi-structured interview guide was used to collect the data. Participants were requested to report on their own experiences of seeking help for their children with ASD. Interviews were audio recorded, transcribed and analyzed with qualitative content analysis.
Results: Ten respondents participated in the study. The results indicated that the places parents seek help from are the educational, health and religious sectors. Parents also seek help from health personnel and religious leaders. The help parents receive from the sources include information, counseling, support, assessment and speech therapy. The major challenge parents face is financial challenge. The most useful source of help identified was the special need school and the least useful help was from the church.
Conclusion: This information is useful in the structure of services for parents of children with ASD.
CHAPTER ONE INTRODUCTION
Background
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by a deficit in social interaction, communication and repetitive restricted behaviour that is noticed before the age of 3years (American Psychiatry Association, 2013). It starts in childhood and tends to continue into adulthood. Some individuals are able to live independent lives but others need support throughout their lives (WHO, 2017).
Continuing research has not been able to identify a clear cause (Yates & Couteur, 2016) but there is evidence that it is caused by some genetic and environmental factors (Deth, Muratore, Benzecry, Power-Charnitsky, & Waly, 2008). The cultural belief of the cause of a disease and societal norms affect how people respond and seek help for that condition (Wegner & Rhoda, 2015). According to the Western World, ASD is believed to be caused by genetic and environmental factors (WHO, 2017) whiles in many parts of Africa, it is believed to be caused by evil spirits and witchcraft (Bakare, 2009).
Studies in Africa, though limited, have shown that cases presented for orthodox clinical practice are characterized by late presentation/diagnosis, normally above the age of 8 years and in turn, late intervention. This has been attributed to low levels of knowledge and awareness about ASD in Africa, the problem with help-seeking behaviour and lack of mental health care facilities and trained personnel (Bakare & Munir, 2011).
There is significant and widespread stigma attached to ASD (Kinnear, Link, Ballan, & Fischbach, 2016) as well as the emotional and economic burden on both the individuals and their families (WHO, 2017). The future of children diagnosed with ASD is uncertain (Mackintosh, Myers, & Goin-kochel, 2005). Parents go through lots of stress and confusion
as they try to understand their children‟s difficulties (Chao, Chang, Chin, Li, & Chen, 2017). People with disabilities (which includes ASD) generally have poor health, low educational achievement, fewer economic opportunities and a higher rate of poverty (WHO, 2011). A study conducted by Das, Das, Nath, Dutta, Bora & Hadarika (2017) in East India with a marginalized population indicated that the impact of ASD affects not only parents but also grandparents and siblings. The process of parenting has been a challenge for many. Some parents have had to discontinue their jobs to dedicate more time to caring for their children.
Children with ASD in Africa have less access to appropriate developmental services (Ruparelia et al., 2016). In Ghana, a child with a disability of school-going age should be enrolled in a school (“Persons With Disability Act, 2006 Act 715,” 2006). Children with disability are really underrepresented in the Ghanaian education system and the special education needs of those who are enrolled are not really met (Anthony, 2010). There are also limited recognized rehabilitation services in Ghana (Wylie et al., 2017).
There is no known medication that directly treats the core symptoms of ASD (Yu & King, 2016; WHO, 2011). There is however, evidence that early intervention is crucial and the earlier intervention is started, the better the effect on the child‟s development (Koegel, Koegel, Ashbaugh, & Bradshaw, 2014). The core symptoms of ASD: the lack of joint attention and reciprocal communication can be managed with early social- communication based intervention (Yates & Couteur, 2016; NINDS, 2015).
Though there is very limited data on ASD in Ghana, a study conducted by Manu (2012), on the topic, „belief and attitude concerning autism in Ghana‟, indicated that parents‟ help- seeking behaviour is affected by what they believe to be the cause of ASD. Parents who attributed the cause of ASD to unknown factors as well as those who attributed it to biological factors sought for biological (behaviour training) and religious intervention for
their children (Manu, 2012). People are also likely to seek help from a variety of sectors for communication disorders in Ghana (Wylie et al., 2017).
Careful examination is needed as efforts are being made to develop the profession of speech and language therapy in Sub-Saharan Africa to assist with the rehabilitation process of people with communication disorders. The traditional models of intervention are respected and therefore should not be abandoned completely. Speech and language therapy originated from the Western countries and therefore the practice is based on their culture (Pillay & Kathard, 2018). Geiger (2015) has however expressed the importance and need for building on culturally relevant approaches and practices to be adopted in the management of communication disability in Africa. The traditional models of intervention are respected and therefore should not be abandoned completely.
According to the above literature, lack of knowledge about ASD is one of the reasons that cause parents to look for treatment at various places and therefore end up reporting late for diagnosis and subsequent intervention which in turn affect the child‟s functional abilities. Which places do parents take their children to seek help and which people do they consult that cause a delay in diagnosing and subsequent intervention? Another reason is the lack of trained personnel. Speech and language therapy is a relatively new concept in Ghana. As such there are very few speech and language therapists in Ghana. Ghana is in the process of training the first batch of speech and language therapists who will assist with the rehabilitation process for people with communication disabilities of which ASD is part. Which places have parents gone to seek help from for their children and what kind of help have they been given over the years? This study seeks to bridge this knowledge gap. This background gives a reason to conduct a study of the lived experiences of parents with children with ASD in Ghana.
Problem Statement
Autism Spectrum Disorders is noted to be diagnosed late among children in Africa ( Bakare & Munir, 2011). This has been attributed to a lack of knowledge about ASD, negative cultural beliefs, and practices, inadequate number of trained personnel and inadequate rehabilitation centers ( Bakare, 2009). According to the World Health Organization (2017), there is a global increase in the prevalence of ASD. The following figures given by the Centers for Disease Control, USA (2012) show the increasing trend: from approximately 1 in 110 in 2006, it rose to 1 in 88 in 2008 and 1 in 68 in 2010. Although this trend has been attributed to a number of factors including increased awareness, expansion of diagnostic criteria, better diagnostic tools and improved reporting (WHO fact sheet, 2017), the increase in prevalence makes intervention programmemes very crucial (Koegel et al., 2014). According to Shumway and Wetherby (2009), the second year of life is very crucial to examine the early development and emerging symptoms of ASD. There is also an awareness that early intervention can significantly preempt the symptoms. Due to this knowledge, it is crucial to not only identify the disorder early but also to begin intervention programmes as early as possible. Experts working with children who have been diagnosed with ASD agree that early intervention is critical (Corsello, 2005). Early intervention improves communication skills, interpersonal skills, motor skills and play skills. It also reduces autism symptoms and behavioural problems (Burnette, Biswell, & Trott, 2016). However, factors such as parents‟ educational status, the extent of knowledge about ASD, income status, and the geographical location affect the choice and initiation of service (Alnemary, Aldhalaan, Simon-Cereijido, & Alnemary, 2017). This leads to delay in diagnosis and subsequent treatment, which leads to lower educational and functional outcome (Antezana, Scarpa, Valdespino, Albright, & Richey, 2017).
