Journal of Pediatric Nursing : Autism Spectrum Disorder : Lifespan Issues and Treatment (Novembre-Décembre 2016)

mardi 6 décembre 2016

1. Betz CL. Focus on Autism Spectrum Disorder : Issues and Treatment Approaches. Journal of Pediatric Nursing ;2016 (11//) ;31(6):565-566.

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2. Bonis SA, Sawin KJ. Risks and Protective Factors for Stress Self-Management in Parents of Children With Autism Spectrum Disorder : An Integrated Review of the Literature. Journal of Pediatric Nursing ;2016 (11//) ;31(6):567-579.

Problem Stress in parents of children with autism spectrum disorder (ASD) has been reported to be very high. However, little is known about what risk and protective factors influence parental stress self-management in this population. Accordingly, this manuscript is a synthesis of the risk and protective factors that impact self-management of stress in these parents. The concepts in the individual and family self-management theory context domain were used as a framework to guide data collection and analysis. Eligibility criteria Searches were conducted using CINAHL, MedLine and PsychInfo. Studies were included if they addressed context factors in parents of children with ASD and were written in English. Sample Ninety-eight studies met review criteria. Results This review highlighted risk factors to parental stress self-management within the context of condition-specific factors, physical and social environment, and individual and family. The most concerning of these findings is that parents struggle accessing a diagnosis and services for their child and are frustrated with health care providers’ knowledge of ASD and lack of communication. Conclusions The risks parents experience as they care for their child with ASD far outweigh the protective factors for self-management of parental stress. Implications Nurses who are aware of these issues can make important changes to their practice and have a significant impact on parental stress self-management and the care of children with ASD.

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3. Bessette Gorlin J, McAlpine CP, Garwick A, Wieling E. Severe Childhood Autism : The Family Lived Experience. Journal of Pediatric Nursing ;2016 (11//) ;31(6):580-597.

This research examined the experiences of families living with a child with severe autism. There is limited literature on the experiences of families when a child has severe autism as distinct from milder autism and includes the voices of multiple family members. Van Manen’s phenomenological approach was used for data collection and analysis. This approach allowed for the use of innovative data sources, including unstructured individual and family interviews, observations, and family lifelines (a pictorial, temporal picture with comments of the families lives). This study included 29 interviews with 22 participants from 11 families. All data were creatively triangulated and interpreted. Six essential themes were identified. First, families experienced autism as mysterious and complex because it is an invisible and unpredictable condition with diagnostic challenges. Second, families described severe autism behaviors that often caused self-injury, harm to others and damaged homes. Third, profound communication deficits resulted in isolation between the family and child. Fourth, families discussed the unrelenting stress from lack of sleep, managing the child’s developmental delays, coordinating and financing services, and concern for the child’s future. Fifth, families described consequences of isolation from friends, school, the public, and health providers. Sixth, families portrayed their need for compassionate support and formed ‘hybrid families’ (nuclear, extended families and friends) to gain support. Study results can be utilized to educate nurses/other providers about the unique needs of families with children with severe autism and could influence health care policies to improve the care for families caring for children with severe autism.

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4. Polfuss M, Johnson N, Bonis SA, Hovis SL, Apollon F, Sawin KJ. Autism Spectrum Disorder and the Child’s Weight–Related Behaviors : A Parents’ Perspective. Journal of Pediatric Nursing ;2016 (11//) ;31(6):598-607.

Purpose To explore parent perspectives of how the attributes of their child’s autism spectrum disorder(ASD) impact nutrition, physical activity, screen time behaviors and risk for obesity. Secondarily, we examined the parent’s perception of the healthcare providers (HCP) influence on these weight-related behaviors. Design and method We conducted and audio-recorded telephone interviews with parents of children with ASD (n = 8) using a structured question guide. Data were transcribed and thematic analysis was conducted. Issues surrounding weight-related behaviors and parental strategies used were reported. Results Two overarching themes with eight subthemes emerged : (1) Challenges related to features of ASD (subthemes included fixation on food, sensory issues/rigidity, developmental factors, impaired social skills, and medication effects) and (2) Challenges related to the care of children with ASD (subthemes included lack of individualized care planning, picking your battles and the impact of ASD on family). Conclusion Strategies extracted from the parent narratives promoted both healthy and unhealthy weight-related behaviors. The key finding in this study is that some parents did not follow HCP guidance when they perceived that the HCP did not understand their particular situation. Practice Implications Implementation of healthy weight-related behaviors can be optimized when providers consider the child’s challenging ASD behaviors, affirm the difficulties encountered by the family and provide guidance that builds on the individual child/family strengths.

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5. Lehan Mackin M, Loew N, Gonzalez A, Tykol H, Christensen T. Parent Perceptions of Sexual Education Needs for Their Children With Autism. Journal of Pediatric Nursing ;2016 (11//) ;31(6):608-618.

Purpose Primary responsibility for sexual education for adolescents with autism spectrum disorder falls on parents who have reported a lack of professional and material support. The purpose of this study was to 1) describe parent perceptions of sexual education needs of their children aged 14–20 with an autism spectrum disorder diagnosis and 2) determine parent-preferred mechanisms of delivery for tailored educational intervention strategies. Design and methods The study aims were accomplished by a qualitative research design using focus groups and telephone interviews assisted by a structured interview guide. Study methods and analysis were guided by social marketing principles. Results A total of 15 parents (5 participated in 1 focus group and 10 completed individual interviews) acknowledged their primary role in providing sexual education for their children and confirmed a need for resources to assist them in this role. All parents in this study found that some level of sexual education was necessary and important and that all children had been introduced to sexual information but in varying degrees. Topic preferences included those that would increase the recognition of healthy relationships, provide a measure of self-protection, and ameliorate undesirable consequences of sexual activity. Parents were knowledgeable about how their children best learned and suggested future interventions use technology interfaces with engaging displays and allow for individualized content. Conclusion and Implications These findings highlight a need for additional research and enhanced clinical services to ensure that adolescents with autism spectrum disorder have their informational needs met, are able to avoid risks, and have the greatest capacity for a healthy sexuality as they transition to adulthood.

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6. Teti M, Cheak-Zamora N, Lolli B, Maurer-Batjer A. Reframing Autism : Young Adults With Autism Share Their Strengths Through Photo-Stories. Journal of Pediatric Nursing ;2016 (11//) ;31(6):619-629.
Le numéro de novembre-décembre 2016 du Journal of Pediatric Nursing est consacré à l’autisme :

Autism Spectrum Disorder : Lifespan Issues and Treatment

Purpose A dearth of research describes the lives of young adults with autism spectrum disorder (ASD) from the perspectives of young adults themselves. We explored young adults’ strengths using Photovoice, a method in which participants use images and discussions to express themselves. Images were purposefully chosen to help young people participate in the research process. Design and Methods Eleven young adults captured their experiences growing up with ASD via images, and participated in three group photo discussions, an individual photo interview, and a photo exhibit. Qualitative data for analysis included session transcripts and photographs. We used strategies of theme analysis to understand participants’ experiences. Results The mean age of the sample was 20 years, and 7 participants were male. Three sub-themes describe youth’s strengths : 1) special interests that cultivated positive emotions and coping strategies ; 2) skills and activities that evoked pride ; and 3) reframing ASD as special versus a disadvantage. Conclusions The Photovoice method is well-suited to help young adults identify and express their strengths. Self-generated images and stories may offer a creative and effective form of communication for young adults with ASD. Practice Implications Health care practitioners can capitalize on how Photovoice helps young adults express themselves by using images to understand their health priorities and involve young adults in their care plans. With images of strength, for example, nurses can build young adults’ confidence and help these individuals to identify areas of their mental and physical lives in which they can thrive and experience improved quality of life.

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7. Whitmore KE. Respite Care and Stress Among Caregivers of Children With Autism Spectrum Disorder : An Integrative Review. Journal of Pediatric Nursing ;2016 (11//) ;31(6):630-652.

Problem While parenting, in general, can be stressful, mothers of children with autism spectrum disorder (ASD) experience chronic stress comparable to combat soldiers. Research suggests that respite care may potentially reduce stress among caregivers. However, greater understanding of this relationship is needed. The purpose of this integrative review is to examine the relationship between respite care and stress among caregivers of children with ASD. Sample and Eligibility A final sample of 11 primary research reports were located using several databases. Articles were included that were : related to the focus of the review, written in English, and published within the last 10 years. Results and Conclusion While most studies found that respite care was associated with lower stress, several found that respite care was associated with higher stress. One study found no association. A model is presented that contributes to a new understanding of this relationship. Overall, the results of this integrative review provide some evidence that respite care use may be associated with a decrease in stress among caregivers of children with ASD. However, due to the lack of consistency and quality across the studies, these findings must be interpreted with caution. Implications Healthcare providers must recognize the importance of tailoring respite care services to the unique family needs. Additionally, policy changes and innovative ideas are needed to help improve the quality of respite care and help expand access. Finally, additional research is necessary to better understand the relationship between respite care and stress among caregivers of children with ASD.

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8. Collins JL. Integrative Review : Delivery of Healthcare Services to Adolescents and Young Adults During and After Foster Care. Journal of Pediatric Nursing ;2016 (11//) ;31(6):653-666.

The purpose of this integrative review is to summarize evidence describing delivery of healthcare services to adolescents while in foster care and to young adults after they exit foster care. The long-term, deleterious effect of abuse and/or neglect by caregivers among youth who have been placed in foster care is grounded in empirical evidence demonstrating the relationship between long-term health needs and exposure to trauma in childhood. Evidence is needed to provide culturally-specific care and also to identify knowledge gaps in the care of adolescents and young adults who have been in the foster care system. Peer-reviewed research studies published between 2004 and 2014 that include samples of youth 12 to 30 years of age are included in the review. Eighteen studies met inclusion criteria for the review. Physical and behavioral healthcare needs among youth with foster care experience are significant. The ability to adequately meet health needs are inextricable from the ability to negotiate resources and to successfully interact with adults. Challenges that youth with foster care histories experience when transitioning into young adulthood are comparable to other populations of vulnerable youth not in foster care. Nurses must use each healthcare encounter to assess how the social determinants of health facilitate or impede optimal health among youth with foster care experience. The development of integrated intervention strategies to inform best practice models is a priority for current and former foster care youth as they transition into young adulthood.

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