Barriers and Benefits Experienced by Caregivers Seeking Medical Care for Their Children with Autism Spectrum Disorders: a Qualitative Meta-synthesis

被引:2
作者
Douglas, Sarah N. [1 ]
Jensen, Emily J. [1 ]
West, Patricia [2 ]
机构
[1] Michigan State Univ, Human Ecol, Human Dev & Family Studies, 552 W Circle Dr, E Lansing, MI 48824 USA
[2] Michigan State Univ, Coll Nursing, Life Sci, 1355 Bogue St, E Lansing, MI 48824 USA
关键词
Autism spectrum disorders; Medical care; Qualitative meta-synthesis; Caregiver; Perspectives; EMERGENCY-DEPARTMENT CARE; FAMILY-CENTERED CARE; HEALTH-CARE; HOSPITALIZED-PATIENTS; PARENTS; PERSPECTIVES; MODEL; PERCEPTIONS; PROVIDERS; ADOLESCENTS;
D O I
10.1007/s40489-022-00306-w
中图分类号
B844 [发展心理学(人类心理学)];
学科分类号
040202 ;
摘要
Limited research has explored the experiences of caregivers and their children with autism spectrum disorder (ASD) in medical settings. A qualitative meta-synthesis of studies published between 2000 and 2020 was conducted to understand and summarize the challenges faced by caregivers, their positive experiences, and suggestions for improving medical care. Themes were generated related to caregiver challenges, positive experiences, and suggestions to improve medical care. We suggest additional training of medical professionals, an interdisciplinary approach to care, more support for caregivers, and increased adaptability of the medical environment. Implications for practice, limitations, and future research directions are discussed to ensure the highest quality care to support the needs of children with ASD and their caregivers.
引用
收藏
页码:492 / 504
页数:13
相关论文
共 62 条
[41]   PLAY AS A MECHANISM OF WORKING THROUGH MEDICAL TRAUMA FOR CHILDREN WITH MEDICAL ILLNESSES AND THEIR SIBLINGS [J].
Nabors, Laura ;
Bartz, Jennifer ;
Kichler, Jessica ;
Sievers, Rebecca ;
Elkins, Rebecca ;
Pangallo, Jordan .
COMPREHENSIVE CHILD AND ADOLESCENT NURSING-BUILDNG EVIDENCE FOR PRACTICE, 2013, 36 (03) :212-224
[42]   Patient- and Family-Centered Care in the Emergency Department for Children With Autism [J].
Nicholas, David B. ;
Muskat, Barbara ;
Zwaigenbaum, Lonnie ;
Greenblatt, Andrea ;
Ratnapalan, Savithiri ;
Kilmer, Christopher ;
Craig, William ;
Roberts, Wendy ;
Cohen-Silver, Justine ;
Newton, Amanda ;
Sharon, Raphael .
PEDIATRICS, 2020, 145 :S93-S98
[43]   Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder [J].
Nicholas, David B. ;
Zwaigenbaum, Lonnie ;
Muskat, Barbara ;
Craig, William R. ;
Newton, Amanda S. ;
Kilmer, Christopher ;
Greenblatt, Andrea ;
Roberts, Wendy ;
Cohen-Silver, Justine .
SOCIAL WORK IN HEALTH CARE, 2016, 55 (06) :409-426
[44]   Challenges and Successes in Raising a Child With Type 1 Diabetes and Autism Spectrum Disorder: Mixed Methods Study [J].
Oser, Tamara K. ;
Oser, Sean M. ;
Parascando, Jessica A. ;
Grisolano, Lee Ann ;
Krishna, Kanthi Bangalore ;
Hale, Daniel E. ;
Litchman, Michelle ;
Majidi, Shideh ;
Haidet, Paul .
JOURNAL OF MEDICAL INTERNET RESEARCH, 2020, 22 (06)
[45]   Autism spectrum disorder and complex healthcare needs: The role of healthcare experiences [J].
Parker, M. L. ;
Killian, Michael .
RESEARCH IN AUTISM SPECTRUM DISORDERS, 2020, 73
[46]   Systematic Review: A Reevaluation and Update of the Integrative (Trajectory) Model of Pediatric Medical Traumatic Stress [J].
Price, Julia ;
Kassam-Adams, Nancy ;
Alderfer, Melissa A. ;
Christofferson, Jennifer ;
Kazak, Anne E. .
JOURNAL OF PEDIATRIC PSYCHOLOGY, 2016, 41 (01) :86-97
[47]   Addressing Needs of Hospitalized Patients With Autism Partnership With Parents [J].
Quiban, Carlota .
CRITICAL CARE NURSING QUARTERLY, 2020, 43 (01) :68-72
[48]   Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder [J].
Russell, Sarah ;
McCloskey, Cynthia Ricci .
JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES, 2016, 31 (01) :21-31
[49]   Parent and Provider Perspectives on the Diagnosis and Management of Autism in a Chinese Immigrant Population [J].
Sakai, Christina ;
Mule, Christina ;
LeClair, Amy ;
Chang, Frances ;
Sliwinski, Samantha ;
Yau, Yoyo ;
Freund, Karen M. .
JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS, 2019, 40 (04) :257-265
[50]  
Sandelowski M., 2007, HDB SYNTHESIZING QUA, P35