Resilience in Families Adapting to Autism Spectrum Disorder

Kapp, Leché; Brown, Ottilia

doi:10.1080/14330237.2011.10820482

Cited by 47 publications

(47 citation statements)

References 15 publications

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“…To date, eight papers on family perspectives have been published in SSA, seven from South Africa [Alli, Abdoola, & Mupawose, ; Du Toit & Kok, ; Fewster & Gurayah, ; Greeff & van der Walt, ; Kapp & Brown, ; Mitchell & Holdt, ; Olivier & Hing, ], and one from Kenya [Gona et al, ]. Qualitative and quantitative data were included in these articles, typically as in‐depth interviews, focus groups, written open‐ended questions, and questionnaires.…”

Section: Family Perspectives About Asdmentioning

confidence: 99%

“…Parents spoke of the need to “develop a rhino skin” providing them with the strength to fight stigma by asserting their rights to socialization and freedom of movement for their children [Fewster & Gurayah, ]. Resilience factors included higher socioeconomic status, social support, open and predictable patterns of communication between parents, supportive family environment, family hardiness, a positive outlook on life, and a family belief system [Greeff & van der Walt, ; Kapp & Brown, ; Olivier & Hing, ]. Parents also noted that their child's communicative skills were not generalized to all settings [Alli et al, ].…”

Section: Family Perspectives About Asdmentioning

confidence: 99%

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Autism spectrum disorder in sub‐saharan africa: A comprehensive scoping review

et al. 2017

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Autism spectrum disorder (ASD) is recognized as a global public health concern, yet almost everything we know about ASD comes from high-income countries. Here we performed a scoping review of all research on ASD ever published in sub-Saharan Africa (SSA) in order to identify ASD knowledge gaps in this part of the world. Fifty-three publications met inclusion criteria. Themes included the phenotype, genetics and risk factors for ASD in SSA, screening and diagnosis, professional knowledge, interventions for ASD, parental perceptions, and social-cognitive neuroscience. No epidemiological, early intervention, school-based or adult studies were identified. For each identified theme, we aimed to summarize results and make recommendations to fill the knowledge gaps. The quality of study methodologies was generally not high. Few studies used standardized diagnostic instruments, and intervention studies were typically small-scale. Overall, findings suggest a substantial need for large-scale clinical, training, and research programmes to improve the lives of people who live with ASD in SSA. However, SSA also has the potential to make unique and globally-significant contributions to the etiology and treatments of ASD through implementation, interventional, and comparative genomic science.

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Section: Family Perspectives About Asdmentioning

confidence: 99%

Section: Family Perspectives About Asdmentioning

confidence: 99%

Autism spectrum disorder in sub‐saharan africa: A comprehensive scoping review

et al. 2017

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“…Family routines allow parents to integrate the needs of the child into family life (Larson, ) by accommodating the unique ASD characteristics, such as rigid and repetitive interests and activities (American Psychiatric Association, ) and sensory preferences, that commonly interfere with the occupational participation of the child (Schaaf, Toth‐Cohen, Johnson, Outten & Benevides, ). As such, family routines serve to promote healthier coping mechanism among families of children with ASD (Kapp & Brown, ). However, appropriately designing family routines to suit the unique support requirements of the child with ASD is often challenging (Boyd, Harkins McCarty & Sethi, ).…”

Section: Introductionmentioning

confidence: 99%

The experiences of mothers of children with autism spectrum disorder: Managing family routines and mothers’ health and wellbeing

McAuliffe

Thomas

Vaz

et al. 2018

Aus Occup Therapy J

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Background/aim Families of children with autism spectrum disorder (ASD) use family routines to provide predictability and structure to support occupational engagement of their family members. Mothers assume the major role to orchestrate occupations in constructing family routines, which may impact their health and wellbeing. However, the experiences of mothers in managing family routines and their health and wellbeing have not been the main focus in previous research. Thus, this study explored the experiences of mothers of children with ASD in managing family routines and their perceptions of the impact of family routines on their health and wellbeing. Methods An interpretive phenomenological approach was used. Twenty mothers of children with ASD, aged between 28 and 56 years, participated in semi‐structured interviews. Data were transcribed verbatim and each transcript was analysed. Results Five themes that summarise mothers’ perceptions towards health and wellbeing when managing family routines emerged: (i) Keeping on track keeping healthy; (ii) My life is busy, because I do everything for everyone else; (iii) Keeping on track all the time is tiring or frustrating; (iv) Looking after my family by looking after myself; and (v) I am not perfect and it is OK. Conclusion This study highlighted the substantial efforts required in constructing family routines that may be at the cost of mothers’ health and wellbeing. However, mothers may be able to cope with everyday demands in managing family routines by changing their perspectives. By integrating ‘me‐time’ activities in family routines, mothers may be able to support their own health and wellbeing. Mothers’ values and needs are reflected in family routines; hence, thorough understanding of family routines may be a key to support mothers’ occupational engagement.

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“…the successful coping of families under adversity that enables them to flourish) identified regular family routines as a protective coping resource in potentially stressful situations (Black & Lobo ). This was also evident in South African families raising children with ASD who identified family routines to be important in maintaining stability within the family and who considered their family routines to be a significant resilience resource (Greeff & Van der Walt ; Kapp & Brown ).…”

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confidence: 97%