A meta‐synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis

The diagnostic process for children with autism can be complex for parents to navigate as they advocate for their child in order to obtain answers to their concerns, and receive the subsequent support they need. Gaining an understanding of parents’ experiences during this process, will assist service providers in supporting families adequately. This systematic review was undertaken to consolidate in‐depth qualitative data from parents of their experience of advocating for their child with autism, during the process of diagnosis. A qualitative meta‐synthesis was conducted, whereby fifteen databases were systematically searched. Twenty‐two studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesised into themes through the steps of review, meta‐aggregation, integration, and interpretation. The date range of the included studies spans 1999–2016. The voices of 1,178 parents are presented in this review describing their experiences in two overarching themes: “Pathway to diagnosis—Confusion and not feeling heard”; and “Pursuing diagnosis—Resilience and commitment.” Each one of these main themes had sub‐themes. Our findings highlight the intense emotional journey for parents during identification of their initial concerns and the formal process of diagnosis, and their perceptions of not being supported by others on this journey. This review illustrates the significant impact that positive experiences with first‐line professionals have during the process of diagnosis, and how these experiences lay the foundation for all future relationships with other service providers. As a result, awareness of parents’ experiences will assist service providers to reconsider their communication style, information sharing, provision of support and to incorporate parents’ contributions in facilitating a more streamlined and more supportive process of diagnosis.     

Family‐centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology

Background Over the past two decades, there is increasing emphasis being placed upon providing family‐centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. Methods This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post‐diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line‐by‐line, focused and theoretical coding, and the use of the constant comparison method. Results Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co‐ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health‐related information directly with their child. Conclusions In order to successfully provide family‐centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit.     

Parents' voices: “Our process of advocating for our child with autism.” A meta‐synthesis of parents' perspectives

Background

Advocacy has been described by parents of children with autism as an important coping strategy, enabling them to move forward by redirecting emotions into actions. A key factor in the development of collaborative and constructive partnerships between service providers and parents is having an understanding of how parents engage in advocacy and the support needed to do so. This meta‐synthesis was undertaken to consolidate in‐depth qualitative data from parents' perspectives of the process that they use to advocate for their children with autism.

Methods

A qualitative meta‐synthesis was conducted, whereby 15 databases were systematically searched. Thirty‐one studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta‐aggregation, integration, and interpretation.

Results

The voices of 1,662 parents are presented describing the process of advocacy in the stages of seeking a diagnosis, seeking self‐education, and taking action. Taking action includes 2 subthemes: seeking, access, and use of support services and community engagement and educating others.

Conclusions

Results highlight the significant impact that positive experiences with first‐line professionals have during the diagnosis process and how these experiences lay the foundation for all future relationships with other service providers. Important implications arise from this meta‐synthesis for service providers in supporting parents' advocacy and hence building constructive relationships with families with a child with autism.     

Parents' voices: ‘why and how we advocate’. A meta‐synthesis of parents' experiences of advocating for their child with autism spectrum disorder

Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self‐efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta‐synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. A qualitative meta‐synthesis was conducted. Fifteen databases were systematically searched by using key terms related to ASD, children, parents/carers, advocacy and qualitative studies. Twenty‐four studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta‐aggregation, integration and interpretation. Two overarching concepts emerged, illustrating both the challenging nature of advocacy and the associated personal and societal benefits. These two concepts are supported by eight themes: a life‐long, all‐encompassing challenge; advocacy as a parental coping strategy; advocacy involving working to create a future; balancing roles and needs; isolation versus support; personal impacts of advocacy; benefits of advocacy; and the barriers to advocacy. The experience of advocacy for parents with a child with ASD is complex and intensive, presenting both personal and societal benefits, as well as challenges for parents. In supporting individuals with ASD and family well‐being, service providers need to have an understanding of the advocating role of parents and ensure that opportunities exist for their voices to be heard during service delivery.     

Parenting children requiring complex care: a journey through time

Background Parents of children requiring complex care provide intense and demanding care in their homes. Unlike professionals who provide similar care in institutions, parents may not receive regular breaks from care giving. As a result, parents, over time, experience health and social consequences related to care giving. Respite care, one form of a break from care giving, is frequently cited as an unmet need by such parents. Method Given the paucity of literature on the impact of care giving over time, an ethnographic approach that involved in‐depth interviews, participant observation, eco‐maps, and document review was used. Parents of children requiring complex care, nurses and social workers participated in the study. Results A developmental map of care giving over time was constructed from the parents' retrospective accounts of parenting a child requiring complex care. The developmental map describes the trajectory of care for the children from infancy through young adulthood and the parents' evolving needs for respite care. Conclusion Existing literature focuses on the day‐to‐day experiences of parents, who are carers, rather than their experiences over time. As parents of children requiring complex care are providing care from infancy through the death of either child or parent, respite needs will change. This developmental map identifies how a group of parents reported these changes in care giving and their perceived needs for respite care.     

Communication on Sexuality Between Parents and Adolescents with Autism Spectrum Disorder: A Systematic Review

The objective of this systematic review was to identify and analyze the information available on sexual communication between parents and adolescents with autism spectrum disorder (ASD). Medline/PubMed, Lilacs, Ebsco, Embase, Scielo, Google Scholar, Scirus and Redalyc databases were used to find articles. The inclusion criteria were studies published in indexed databases in English, Spanish and Portuguese with a quantitative and qualitative approach in full text, studies that include a population of parents of adolescents with ASD and adolescents between 10 and 19 years of age with a diagnosis of ASD, and studies that covered communication about sexuality. Keywords combined with Boolean operators were used. Three topics were identified that covered the communication of parents and adolescents with ASD: sexual issues, parents' romantic expectations, and sexual experiences. This systematic review highlights the need for training of health professionals and sex education programs for parents of adolescents with ASD.

     

Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome

Background   International research in recent years has begun to focus on the medical problems of individuals with intellectual disabilities and on family stress in accessing health services for persons with developmental disabilities. Less is known about the needs of individuals in different diagnostic groups, or about their experiences of systems of care. Therefore, we report the results of focus groups with parents of children or adults with fragile X syndrome, autism or Down syndrome.
Methods   Semi-structured group interviews with parents of children, youth or adults from each of three diagnostic groups probed perceptions of challenges and successes in obtaining and negotiating healthcare services in Ontario, Canada.
Results   Parents described diverse barriers to care, the need for advocacy in securing services, perceptions of service delivery and the role of healthcare professionals in regulating access to a wide range of services. Diagnostic services represented one area of central concern to parents from all three groups.
Discussion   Focus group data yielded a wide range of concerns. Suggestions for enhancing the system included expanding syndrome-specific education for medical students and health professionals and creating a centre that could offer service-related information for parents.     

Medical care experiences of children with autism and their parents: A scoping review

Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty‐nine studies meeting inclusion criteria were identified and reviewed. The review indicated a number of challenges (e.g., parent‐reported problems in parent‐provider communication and overwhelming environments) as well as factors that facilitate positive experiences (e.g., providing positive reinforcement and explaining exam steps) during medical appointments. Children with ASD and their families are faced with many challenges while receiving care in medical settings. The present review identified many challenges families face, as well as facilitators of positive experiences. Understanding the unique experiences of patients with ASD and their parents will help to improve experiences in medical care settings for children, caregivers, and health care providers.     

Adoptive parents' suspicion of preadoption abuse of their adopted children and the use of support services

Background Adopted children have a higher risk of developmental, mental, behavioural and social problems compared with non‐adopted children, and their use of postadoption support services is of interest. Little attention has been given to the impact of preadoption abuse on the use of these services, and therefore this study examines whether or not adoptive parents' suspicion of preadoption abuse has a significant impact on the use of support services by adopted children. Methods Data from the National Survey of Adoptive Parents, a US nationally representative survey of adopted children, were used to examine parents' suspicion of preadoption abuse and its effects on the use of postadoption support services by children aged 6–17 years (n= 1411). Statistical analyses were used to examine the relationship between suspected abuse and the use of support services while controlling for characteristics of the adopted child and adoptive parents/household. Results Seven out of 10 adopted children have used some form of support service, and a larger percentage of 6‐ to 12‐year‐old children suspected of experiencing preadoption abuse used a support service compared with children not suspected of experiencing abuse. Significant relationships existed between various types of suspected preadoption abuse and the use of different types of postadoption support services. These relationships may go unaccounted for when only examining if any preadoption abuse occurred, or if any support service was used. Conclusions The type of preadoption abuse suspected appears to play a modest role in predicting the type of postadoption support services used by an adopted child. Giving further attention to understanding the relationship between different types of preadoption abuse and types of postadoption support services may help better understand the problems and difficulties experienced by adopted children.     

Services for children with developmental co-ordination disorder: the experiences of parents

Background Parents provide valuable information on their experiences of engaging with therapy services for their children, which can inform the future development of these services. The aim of this study was to explore the views and experiences of parents who had accessed therapy services for their child with developmental co‐ordination disorder (DCD). Methods Seven focus groups were conducted incorporating 52 parents who had a child diagnosed with, or fitting the diagnostic criteria for DCD. Focus groups were audiotaped, transcribed and analysed thematically. Findings Parents reported struggling to gain access to therapy services. When they gained access, they found the services beneficial for their child but continued to experience difficulties regarding the quality of service delivery. Conclusions/implications The study suggests that parents thought some health‐care professionals lacked knowledge and understanding of DCD, which they believed impacted upon early recognition and access to services. They perceived that therapy at an early age was vital for children's development, and indicated that a clearer path for accessing these services was necessary in addition to improved service quality. They called for an increase in awareness of DCD by all therapy service professionals to aid early recognition and improved treatment.     

应用M-CHAT量表筛查儿童心理行为障碍的结局分析

目的 分析在社区儿童保健门诊工作中应用M-CHAT量表开展儿童心理行为问题的筛查,筛查结果与后期儿童心理行为问题发生是否存在一定统计学关联。方法 在社区儿童保健门诊使用M-CHAT表开展儿童心理行为问题的筛查工作,记录筛查结果,一年后,应用自行编制问卷对84例筛查阳性的儿童进行电话随访,询问筛查阳性儿童是否到三级专科医院心理门诊确诊,记录确诊结局;同时,采用成组配对的方法,选取门诊使用M-CHAT量表筛查阴性的儿童作为对照组,对84例筛查阴性的儿童进行电话随访,询问在过去的一年内是否存在心理行为问题,是否到三级专科医院心理门诊确诊,分析使用M-CHAT量表的筛查结果与儿童心理行为问题是否存在一定的统计学关联。结果 使用M-CHAT量表筛查,一年后随访结果显示,筛查阳性儿童心理行为问题的发生率显著高于筛查阴性儿童,差异具有统计学意义(P<0.05)。 结论 在社区儿童保健门诊工作中纳入M-CHAT量表具有一定的临床意义。     

Quality standards for child and adolescent mental health in primary care

ABSTRACT: BACKGROUND: Child and adolescent mental health problems are common in primary healthcare settings. However, few parents of children with mental health problems express concerns about these problems during consultations. Based on parental views, we aimed to create quality of care measures for child and adolescent mental health in primary care and develop consensus about the importance of these quality standards within primary care. METHODS: Quality Standards were developed using an iterative approach involving four phases: 1) 34 parents with concerns about their child's emotional health or behaviour were recruited from a range of community settings including primary care practices to participate in focus group discussions, followed by validation groups or interviews. 2) Preliminary Quality Standards were generated that fully represented the parents' experiences and were refined following feedback from an expert parent nominal group. 3) 55 experts, including parents and representatives from voluntary organisations, across five panels participated in a modified two-stage Delphi study to develop consensus on the importance of the Quality Standards. The panels comprised general practitioners, other community-based professionals, child and adolescent psychiatrists, other child and adolescent mental health professionals and public health and policy specialists. 4) The final set of Quality Standards was piloted with 52 parents in primary care. RESULTS: In the Delphi process, all five panels agreed that 10 of 31 Quality Standards were important. Although four panels rated 25-27 statements as important, the general practitioner panel rated 12 as important. The final 10 Quality Standards reflected healthcare domains involving access, confidentiality for young people, practitioner knowledge, communication, continuity of care, and referral to other services. Parents in primary care agreed that all 10 statements were important. CONCLUSIONS: It is feasible to develop a set of Quality Standards to assess mental healthcare provision for children and adolescents seen within primary healthcare services. Primary care practitioners should be aware of parental perspectives about quality of care as these may influence helpseeking behaviours.     

Creating equitable healthcare quality and safety for children with intellectual disability in hospital

Children with intellectual disability are susceptible to poor experiences of care and treatment outcomes, and this may compound existing health inequities. Evidence to date indicates three priority areas that must be addressed in order to reduce these inequities in the safety and quality of care for children with intellectual disability. Firstly, we need reliable methods to identify children with intellectual disability so that healthcare organizations understand their needs. Secondly, we need to develop quality metrics that can assess care quality and unwarranted care variation for children with intellectual disability in hospital. Finally, for a comprehensive understanding of the safety and quality of care for these children, and how to improve, it is critical that healthcare organizations partner with parents/carers and enable children with intellectual disability to voice their experiences of care. Children with intellectual disability have higher healthcare utilization than their peers; yet, their voice is rarely sought to optimize the safety and quality of their healthcare experience. Patient experience narratives enhance our understanding of the genesis of adverse events. By addressing these priorities, children with intellectual disability will be identified, and health services will measure and understand the problematic and beneficial variations in care delivery and can then effectively partner with children and their parents/carers to address the inequities in care quality and create safer healthcare.     

Parents' decision making and access to preventive healthcare for young children: applying Andersen's Model

Background and objective

Implementing preventive health care for young children provides the best chance of improving health and changing a child''s life course. In Australia, despite government support for preventive health care, uptake of preventive services for young children is low. Using Andersen''s behavioural model of health‐care utilization, we aimed to understand how parents conceptualized their children''s preventive health care and how this impacted on access to preventive health‐care services.

Design

Semi‐structured telephone interviews conducted between May and July 2011.

Setting and participants

Twenty‐eight parents of children aged 3–5 years from three diverse socio‐economic areas of Melbourne, Australia.

Results

Thematic analysis showed parents'' access to child preventive health care was determined by birth order of their child, cultural health beliefs, personal health practices, relationship with the health provider and the costs associated with health services. Parents with more than one child placed their own experience ahead of professional expertise, and their younger children were less likely to complete routine preventive health checks. Concerns around developmental delays required validation through family, friends and childcare organizations before presentation to health services.

Conclusions

To improve child preventive health requires increased flexibility of services, strengthening of inter‐professional relationships and enhancement of parents'' knowledge about the importance of preventive health in early childhood. Policies that encourage continuity of care and remove point of service costs will further reduce barriers to preventive care for young children. Recent reforms in Australia''s primary health care and the expansion of child preventive health checks into general practice present a timely opportunity for this to occur.     

‘We're responsible for the diagnosis and for finding help’. The help‐seeking trajectories of families of children on the autism spectrum

This article focuses on parents' process of seeking help for their child when a diagnosis of autism spectrum disorder is made or suspected. The study was conducted with 18 parents of children aged 4–10 years in Quebec (Canada). A trajectory‐network approach was applied in order to carry out an in‐depth analysis of family help‐seeking trajectories based on the relationships mobilised (or neglected) over time and on life course events that may have precipitated (or hindered) help‐seeking actions. Semi‐directed interviews based on a name generator were conducted. A qualitative analysis of the content of family narratives was done and followed by the production of a schematic representation of each families' help‐seeking trajectory. The results identified four constitutive phases during which relationships within the family, within associations, or with health and social services or education professionals helped or hindered the help‐seeking process. The results show the relevance of the proposed approach for analysing the help‐seeking process and better supporting families of children on the autism spectrum.     

Australian parents’ use of universal child and family health services: A consumer survey

This study aimed to explore Australian parents’ use of universally available well‐child health services. It used an online survey of 719 parents of children aged from birth to 5 years in all states and territories to examine patterns of service use and consumer preferences. In Australia, several health professional groups provide advice to pregnant women, infants, children, and parents, offering health promotion, developmental screening, parenting support, and referral to specialist health services if required. The survey examined parents’ use of different child and family health providers, and their preferences for support with several common parenting issues. The study indicated that families with young children obtain primary healthcare from a range of service providers, often more than one, depending on children's ages and needs. Parents frequently visit general practitioners for immunisation and medical concerns. They attend dedicated child and family health nurses for parenting advice and well‐child checks and prefer them as an information source for many health issues. However, a substantial proportion of parents (44.1%) do not currently visit a child and family health nurse, often because they not only do not perceive a need but also sometimes because these services are unknown, inaccessible, or considered unsuitable. They may seek advice from less qualified sources. There is potential for increased collaboration between child and family health providers to ensure effective resource use and consistency of parenting information and advice. Nursing services may need to address accessibility and appropriateness of care.     

Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners

Approaches to practice based on partnership and shared decision-making with patients are now widely recommended in health and social care settings, but less attention has been given to these recommendations in children's services, and to the decision-making experiences of non-medical practitioners and their patients or clients. This study explored children's, parents' and practitioners' accounts of shared decision-making in the context of community-based physiotherapy services for children with cerebral palsy. Semi-structured interviews were conducted with 11 children with cerebral palsy living in an inner city area of northern England, and with 12 of their parents. Two focus groups were conducted with 10 physiotherapy practitioners. Data were analysed using the constant comparative method. When asked explicitly about decision-making, parents, children and practitioners reported little or no involvement, and each party saw the other as having responsibility for decisions. However, when talking in more concrete terms about their experiences, each party did report some involvement in decision-making. Practitioners' accounts focused on their responsibility for making decisions about resource allocation, and thereby, about the usefulness and intensity of interventions. Parents indicated that these practitioner-led decisions were sometimes in conflict with their aspirations for their child. Parents and children appeared to have most involvement in decisions about the acceptability and implementation of interventions. Children's involvement was more limited than parents'. While parents could legitimately curtail unacceptable interventions, children were mostly restricted to negotiating about how interventions were implemented. In these accounts the involvement of each party varied with the type of issue being decided and decision-making appeared more unilateral than shared. In advocating shared decision-making, greater understanding of its weaknesses as well as its strengths, and greater clarity about the domains that are suitable for a shared decision-making approach and the roles of different parties, would seem a helpful step.     

Omid early intervention resource kit for children with autism spectrum disorders and their families

Omid early intervention resource kit containing information booklets on autism spectrum disorders (ASD) and related issues, five packs of tangible selected playthings and communication facilitating aids was developed and evaluated with 65 Iranian parents. Beside a pretest before the resource kit deliverance, parents in the control group took part in a two-day workshop. Parents in the control group were also visited at the middle of the study and re-evaluated three months after the resource kit usage. Post-testing comparison showed a statistically significant improvement for parents and their children in experimental group. Findings support usefulness of the resource kit as a practical approach to meeting the needs of parents after the diagnosis of ASD for their child in a country with scarce support and services.