Parent Support Groups Research Articles

Factors That Influence Women’s Symptoms of Postpartum Depression After Discharge of Their Preterm Infants From the NICU

ObjectiveTo examine resourcefulness, perception of child vulnerability, and stress in relation to symptoms of postpartum depression (PPD) in women after discharge of their preterm infants from the NICU. DesignCross-sectional, descriptive, correlational study. SettingAn urban NICU follow-up clinic, a pediatric office in the northeastern United States, and an online NICU parent support group. ParticipantsSeventy-four women who gave birth to preterm infants who were discharged home from the NICU. MethodsThe participants completed a demographic data questionnaire, the Resourcefulness Scale, Child Vulnerability Scale, Perceived Stress Scale, and Edinburgh Postnatal Depression Scale. I examined the relationships among these data using correlational analysis and hierarchical multiple linear regression analysis. ResultsPerception of child vulnerability and stress were predictors of symptoms of PPD; these variables accounted for 9% (p = .001) and 18% (p < .001) of the variation in symptoms of PPD, respectively. Although resourcefulness initially predicted PPD, it was no longer significant when controlling for demographic variables in the final regression analysis. ConclusionsThese results supported previously reported findings on the effects of women’s perceptions of their child’s vulnerability and stress on symptoms of PPD. However, the findings are not consistent with those of previous research regarding the inverse relationship between resourcefulness and symptoms of PPD. Nurses can implement interventions for women regarding perceptions of child vulnerability and stress to decrease symptoms of PPD after their preterm infant’s discharge from the NICU.

Supporting parents and healthy behaviours through parent-child meetings \u2013 a qualitative study in the Netherlands

BackgroundThe first 2 years of a child’s life have been found to be crucial to healthy growth and development. Parent support groups can help parents to promote health-related behaviours during this crucial period. The aim of this study was to explore the experiences of parents who participated in a parent support group (Parent-Child Meetings) which promoted health-related behaviours of their children, and to determine whether and how these meetings supported them in promoting these behaviours.MethodsWe used a qualitative study design. The parent support group consisted of weekly Parent-Child Meetings organized in a multi-ethnic, relatively low-income neighbourhood in Amsterdam, the Netherlands. Data on the experiences of parents was collected through participatory observations, informal conversations (n = 30 sessions) and semi-structured interviews (n = 13) between April 2019 and March 2020. The data was analysed using thematic content analysis.ResultsParents indicated that they experienced the parent-child meetings as enjoyable and as providing them with socio-emotional support. They reported that the meetings increased their parenting knowledge, skills and practices regarding healthy behaviours of their children and that they used this knowledge in their daily lives. They also appreciated the practical information and advice provided by experts in the meetings. Parents indicated that the positive attitude of the experts was crucial in accepting and adopting their advice. Additionally, parents valued the interactive and hands-on workshops, which integrated health-related behaviours and active play with children, as it enabled them to learn while they played with their children.ConclusionThis study indicated that parent-child meetings contributed to enhancing parental knowledge, skills and practices regarding healthy behaviours of their children. This could potentially benefit the health of children during the first 2 years of their lives. In particular, the peer support of other parents, the hands-on workshops, and the concrete advice and information provided in an informal setting were highly valued by parents. Future parent support groups could use these findings to improve their meetings or to start meetings that better suit the needs of parents with young children.

The feasibility of establishing parent support groups for children with congenital Zika syndrome and their families: a mixed-methods study

Background: The Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. We aimed to evaluate the feasibility of a 10-week support group, ‘Juntos’, as a community-based intervention for parents of children with congenital Zika syndrome (CZS) in Colombia. Methods: Two facilitators delivered ‘Juntos’ to four groups of 8-10 caregivers. One researcher observed each group. Data were collected from: observation notes from 40 sessions, focus group discussions held after each session, pre- post intervention questionnaires with 34 caregivers, and semi-structured interviews conducted with four facilitators, 12 caregivers and three stakeholders. We used the Bowen framework in data analysis. Results: Acceptability and demand for the intervention were high. ‘Juntos’ was largely delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Adaption requirements included additional organisational and social media support. Community health worker training may support integration and the established groups could facilitate programme expansion; however, participants perceived lack of prioritisation as a limitation. Participants’ knowledge and confidence to care for their child improved after programme enrolment. Conclusion: Acceptability, demand and practicality of ‘Juntos’ is high. Yet implementation is challenged by existing health systems gaps in support of children with CZS.

Autism spectrum disorder and language choice in Ghana

Abstract One of the most crucial decisions to make for parents of children with Autism in Ghana (just like for others in most bilingual and multilingual environments) is what language(s) to use with their children. This study was conducted to first investigate the state of Autism in Ghana and then to unravel the language choices that parents make for their children and the factors that influence the choices they make. Through interviews, the use of observation and questionnaires, members of Autism Action Ghana, a support group for parents with children on the spectrum, were studied as a Community of Practice, as well as using Bourdieu’s concept of Cultural Capital. Data analyzed both qualitatively and quantitatively revealed that Autism Spectrum Disorder (ASD) is still a generally unknown and misconceived condition that receives no major government attention, so that parents are left with finding very expensive and limited support for their children on their own. 77% of the 35 respondents use only English with their children because of the advice they receive from therapists, in addition to the fact that all therapies available are in English, the fear of further delaying speech in their non-verbal children should they use more than one language, and the belief that English has more currency and will take their children further in life as compared to their indigenous languages, among others. One of the implications of the choice of English is that the children will eventually become functionally monolingual in a multilingual country and thus will be left with no choice when it comes to language.

The contributions of careful clinical observations: A legacy.

Clinical Medicine is an Art which is learned, together with hard work, as an apprentice-observing how a master works, and improving with experience and exposure. Clinicians are performing multiple things at the same time-trying to make a diagnosis, providing best therapies and preventative strategies, and looking for the underlying mechanism(s). Families want to know what to expect over time-the natural history of their disorder. Rare disease networks and parent support groups are helping in this effort. Information technologies and international collaborative efforts are changing the way clinical genetics is provided.

A formal support group for esophageal atresia and/or tracheoesophageal fistula in South Africa may improve the outcome of these children and their families

The psychosocial aspect of various congenital anomalies like esophageal atresia (EA) with/or without a tracheoesophageal fistula (TEF) being the cause of Post-traumatic stress disorder (PTSD), depression, and anxiety in parents of these children, is often overlooked by medical professionals. Support groups may be useful to address a part of this problem and form an important aspect of emotional support for any rare or congenital disease. A cross-sectional descriptive study was conducted to assess the need for a formal support group for parents of patients born with EA and to emphasize the role of emotional support for these parents and children. A questionnaire was sent to members of an informal WhatsApp group which included participants with diverse demographics across private and public platforms, across South Africa. The questions focused on 3 main areas: demographic data, diagnosis and the surgery, and information about the participant’s emotional support. All the data were inserted in an excel datasheet and descriptive statistical analysis was used. Questions were sent to 14 members of an informal WhatsApp group. Eight were included in the study. All 8 participants were mothers of children born with an EA with a TEF. The questions about the need for emotional support focus on the time after the baby was born. The majority (87.5%) of the mothers felt that they could bond with their babies during pregnancy, but in contrast, 75% felt that they missed an opportunity to bond with their babies after birth, mainly because they were not allowed to hold their babies for up to 11 days after birth. Only 1 of the mothers were in contact with other families with children born with EA, and 6 of the remaining 7 agreed that this would have helped them during this emotionally challenging time. All 8 thought that sharing their stories with others could have helped them emotionally and all agreed that an EA/TEF support group was a good idea. The family, as another patient, ought to be treated and included in the overall treatment plan if we aim to improve the quality of life for both the patients and their families. Disease-specific support groups can play a major role in the emotional well-being of both the children born with EA and their families.

Order out of chaos? Autism spectrum disorder coordinators' impact on service delivery in New Zealand.

To evaluate the impact of autism spectrum disorder (ASD) coordinators (ASDCs) on key aspects of the experience of obtaining an ASD diagnosis and post-diagnostic supports in New Zealand. Members of New Zealand ASD parent support groups were surveyed. Of 516 parents, 41.3% had seen an ASDC. The majority were satisfied. Parents who saw ASDCs pre-diagnosis were more likely to be satisfied with the diagnostic process (p = .04) and saw fewer professionals before receiving a diagnosis (p = .04). Parents who had seen ASDCs post-diagnosis were more likely to be satisfied with post-diagnostic supports (p < .001) and their coordination (p < .001). ASDCs are well regarded by parents and improve key aspects of the process of obtaining an ASD diagnosis and post-diagnostic supports. Given the particularly low rates of parent satisfaction with post-diagnostic supports (23%) and their coordination (19%), ASDCs may be of most value when employed post-diagnosis to assist parents in navigating key supports and co-developing comprehensive individualised care plans.

Survivor and parent engagement in childhood cancer treatment in Iran.

In Iran (with a population of 83 million), 19,973 children were diagnosed with cancer from 2009 to 2019 (MAHAK Charity). This study was part of the International Society of Paediatric Oncology, Paediatric Oncology in Developing Countries Committee, ‘Patient, Family and Stakeholder Engagement Task Force’ engagement study in ten low- and middle-income countries in 2019. We documented childhood cancer survivors and parents’ experiences and quality of engagement, including perceptions and expectations, during their cancer treatment journey in Iran. Fourteen in-depth interviews and three focus group discussions were conducted by three Iranian qualitative researchers with 29 participants: recent adolescent/young adult survivors (12–20 years), long-term survivors (21–30 years) and parents [36–61 years (six mothers and four fathers)] from diverse socio-economic and ethnic backgrounds. Data were recorded, transcribed and analysed, and then translated from Farsi into English. Participants’ expectations included inter alia improved communication and information flow among the key stakeholders including doctors, nurses, parents and patients. A need for improved patterns of doctor–patient relationships and communication, more effective psychosocial support and the importance of peer support groups (for survivors and parents) were reported. Participants identified areas of satisfaction and dissatisfaction regarding their actual engagement and decision-making. The dominance of a medical-only approach instead of multidisciplinary approach in care, the shortage of psychosocial support, the lack of an integrated system for providing information and delivering a package of printed material about the treatment journey and the absence of patient navigator in childhood cancer care systems were among obstacles for successful engagement of patients and parents throughout their cancer journey.

When the context rows against. Voicing parents of transgender children and teenagers in Italy: A qualitative study

AbstractHaving a supportive family with a non‐binary vision of gender differences is a protective factor for transgender and gender‐variant (TGV) children and teenagers; however, the parents of TGV children find themselves alone when dealing with doubts and challenges, and this may hamper their capacity to provide support to their children. This study aimed to map/describe the needs of the parents of TGV children in Italy, their relationship with the health care and educational systems, and how they cope with the challenges of the context they live in. We used a qualitative approach based on thematic interviews with respondent validation, involving 13 parents of TGV children and teenagers. Our participants reported difficulties in accessing information, obstacles in finding adequate support from mental health professionals and in interactions with educational professionals, recognizing that these challenges are strongly embedded in the Italian socio‐cultural context and its widespread homobitransphobic culture. Nevertheless, they are personally committed to changing this situation through advocacy and affirmative action for their children, engaged in knowledge production on gender variance, and with parent support groups. Please refer to the Supplementary Material section to find this article'sCommunity and Social Impact Statement.

Ocena zachowań związanych z zaburzeniami odżywiania w grupie u osób chorych na mózgowe porażenie dziecięce

Introduction: Cerebral palsy (CP) is a group of symptoms that describes a variety of movement or posture disorders that result from permanent but non-progressive brain damage early in a child’s development. They have a direct impact on the patient’s quality of life and relationships in his close surroundings. Very often CP is accompanied by dysphagia and neophobia, where the former is a typical physical disorder resulting from difficulties in swallowing food, and the latter, depending on factors, may be a psychological nutritional barrier, due to the patient’s fear of eating unknown foods. In the group of eating disorders occurring in people with CP, anorexia and bulimia are usually overlooked. The aim of the study is to assess eating disorders in people with CP not mentally retarded and the impact of the environment on their occurrence, as well as to compare the frequency with the general population. Material and methods: The study uses the method of a diagnostic survey and a self-authored questionnaire. The research tool is a questionnaire consisting of 27 questions addressed to parents of children with CP whose intellectual development was normal. Parents of children suffering from CP were examined and their psychosocial development was not abnormal. The study group consisted of 50 people aged 18–50, participation in the study was voluntary and anonymous. The research group consists of people associated in a support group for parents and carers of people with CP. Results: Children suffering from CP very often suffer from eating disorders. There are many types of eating disorders that children with CP suffer from. The most common disturbing eating behavior was fear of eating food (42%), obsessive thoughts about eating (90%), difficulty in swallowing food (86%), perfect knowledge of the caloric content of food products (76%), lack of control over the amount of food consumed (38%), the use of restrictive diets (32%), weight change (24%), vomiting (18%) and reluctance to eat (14%). Conclusions: Directing attention only to the negative aspects of family relationships in people with CP is definitely insufficient. In the prevention of anorexia or bulimia in this group of patients, the need to stimulate and strengthen such forms of behavior of patients and adult caregivers towards children with CP should be taken into account. It is necessary to conduct further research on the coexistence of anorexia and bulimia in people with cerebral palsy.

P0468 / #674: PICU MOBILE APPLICATION FOR PARENTS: INSIGHTS FROM PARENT CONSULTATION QUESTIONNAIRE

Aims & Objectives: The Great Ormond Street Hospital (GOSH) parent support group highlighted that a mobile phone application (app) providing information during their child’s PICU stay would be helpful. To inform the desired content for such an app, we surveyed parents of past and present patients. Methods: A paper questionnaire was designed by the authors. The questionnaire was distributed to parents on GOSH PICU during a 3 week period in 2019 and disseminated at a past patient event. Results: Thirty-three of the 40 distributed questionnaires were completed (82% response rate). Thirty-two (97%) of parents said they would use a PICU app. Information about bedside equipment 32 (97%) and medications 29 (87.9%) were the most important content for parents. Information about specific conditions 24 (84.8%), the hospital 28 (84.8%), the surrounding area 26 (78.8%) and research undertaken on ICU 20 (60%) were also sought. The majority of parents would want to use the app to communicate with the clinical team in addition to the usual face-to-face contact. Twenty-four (75%) of parents would value a diary feature and the majority 30 (90.9%) would consider using the app to stay in touch with PICU following discharge. Conclusions: Parents would like access to a unit specific intensive care app to use both during their child’s stay and to maintain contact following discharge. Parents would like the app to both provide information and allow them to communicate with their clinical teams. The ability to document their child’s PICU journey was also of note.

Patient tracking during treatment of children with cancer in India - An exploratory study.

BackgroundAbandonment of treatment, a major cause of treatment failure in low‐ and middle‐income countries like India, is particularly high during the diagnostic and initial phase of treatment. Tracking of patients during this risk period may reduce treatment abandonment rates and increase quality of care.AimThe primary aim was to pilot the use and check the acceptability of a tool for tracking children with cancer in New Delhi during the initial part of their treatment. Secondary aim was to estimate abandonment rates among these patients.MethodsThis prospective study was carried out in two centers of North India in New Delhi and enrolled children less than 18 years diagnosed with cancer at these centers and who had registered with Cankids for social support. Parent support group (PSG) workers maintained contact with the child's family at least once a week for the first 12 weeks. Details of each contact and subsequent action were recorded in a customized book (called “You are not alone” or YANA Book). Descriptive analysis of these contacts was done in Microsoft Excel and presented in frequencies and percentages. The five‐point Likert scale was used to check the acceptability of the tool among the PSG workers.ResultsSeven PSG workers enrolled and tracked 81 patients (73% male with a median age of 6 years). During the 12‐week study period, 986 contacts were attempted and three (3.7%) patients had abandoned their treatment. All PSG workers strongly agreed that the YANA book was simple to understand and use, decreased their workload, and helped provide better assistance to patients.ConclusionThe tool for patient tracking was well accepted by the PSG workers and considered easy to use. We now plan to implement our model as a routine service at all the partnering hospitals in India.

Epilepsy in Nicolaides-Baraitser Syndrome: Review of Literature and Report of 25 Patients Focusing on Treatment Aspects.

Nicolaides-Baraitser syndrome (NCBRS), caused by a mutation in the SMARCA2 gene, which goes along with intellectual disability, congenital malformations, especially of face and limbs, and often difficult-to-treat epilepsy, is surveyed focusing on epilepsy and its treatment. Patients were recruited via "Network Therapy of Rare Epilepsies (NETRE)" and an international NCBRS parent support group. Inclusion criterion is NCBRS-defining SMARCA2 mutation. Clinical findings including epilepsy classification, anticonvulsive treatment, electroencephalogram (EEG) findings, and neurodevelopmental outcome were collected with an electronic questionnaire. Inclusion of 25 NCBRS patients with epilepsy in 23 of 25. Overall, 85% of the participants (17/20) reported generalized seizures, the semiology varied widely. EEG showed generalized epileptogenic abnormalities in 53% (9/17), cranial magnetic resonance imaging (cMRI) was mainly inconspicuous. The five most frequently used anticonvulsive drugs were valproic acid (VPA [12/20]), levetiracetam (LEV [12/20]), phenobarbital (PB [8/20]), topiramate (TPM [5/20]), and carbamazepine (CBZ [5/20]). LEV (9/12), PB (6/8), TPM (4/5), and VPA (9/12) reduced the seizures' frequency in more than 50%. Temporary freedom of seizures (>6 months) was reached with LEV (4/12), PB (3/8), TPM (1/5, only combined with PB and nitrazepam [NZP]), and VPA (4/12). Seizures aggravation was observed under lamotrigine (LTG [2/4]), LEV (1/12), PB (1/8), and VPA (1/12). Ketogenic diet (KD) and vagal nerve stimulation (VNS) reduced seizures' frequency in one of two each. This first worldwide retrospective analysis of anticonvulsive therapy in NCBRS helps to treat epilepsy in NCBRS that mostly shows only initial response to anticonvulsive therapy, especially with LEV and VPA, but very rarely shows complete freedom of seizures in this, rather genetic than structural epilepsy.

Parental Adherence to Home Activities in Early Intervention for Young Children With Delayed Motor Development.

The purpose of this study was to investigate the relationship between characteristics of home activities and coaching practices with the adherence of parents of children with motor delays to home activities provided by physical therapists and occupational therapists in early intervention. An online survey study was developed and distributed to physical therapists and occupational therapists across the United States. A survey flier was posted online in parent support groups, physical and occupational therapy groups, newsletters, and organizations supporting parents of children with disabilities. A total of 720 respondents participated in the survey, and 446 participants from 49 states met the inclusion criteria and were included in the analysis. Parents indicated that physical therapists and occupational therapists applied the 5 coaching practices (joint planning, observation, practice, reflection, and feedback). However, parents (63%) reported more time was needed on coaching. Parents stated that therapists' modeling the activities was the most helpful teaching technique that enhanced their adherence to home activities. Coaching practices, appropriateness of the home activities to daily routines and home environment, provision of home activities enjoyed by the child, and parent self-efficacy were all significantly associated with adherence to home activities. Parents' adherence to home activities is affected not only by the type of coaching used by the therapists but also by the characteristics of the home activities provided for young children with delayed motor development. The results of this study provide additional evidence supporting individualization of home activities to promote parents' continuous provision of learning opportunities to promote their children's development. There was also support of the therapists' use of the 5 coaching practices in early intervention to support the parent's application of home activities when the therapists are not present. This study explored the use of home activities from the parents' perspective and provided valuable recommendations to therapists to improve parents' adherence to the recommended home activities in early intervention.

Assessing the impact of a virtual support group on adoptive parent stress and competence: Results from an urban/rural pilot study

AbstractDespite the use of support groups among adoptive parents, few empirical works have assessed outcomes associated with participation in these groups, particularly those delivered via virtual platforms. The purpose of this study was to assess the impact of participation in a virtual, pilot‐phase 10‐week adoptive parent support group, on adoptive parent stress and parental competence. The pilot included support groups at two sites in one south‐eastern state, one urban and the other rural. Data were collected via a retrospective pre‐/post‐design and utilized the Parental Stress Scale and Parental Sense of Competency measures to assess variables of interest. Analyses indicate significant increases in adoptive parent competency and significant decreases in parental stress within support groups at the urban site. No such significant differences were detected for participants in the rural group. Overall, findings indicate that support groups can be beneficial in addressing challenges associated with caregiver stress and competency among adoptive parents. As well, data suggest the need to be attentive to support group structure and duration, among other factors. After a brief review of pertinent background information, this paper will outline findings from this study and discuss salient implications derived from this effort.

Intervention experiences among children with congenital and neonatal conditions impacting brain development: patterns of service utilization, barriers and future directions

Objective The current study examined reported patterns of utilization and barriers to early and school-age interventions, as well as directions for future care, among families of children with congenital or neonatal conditions with known-risk for poor neurocognitive development. The impact of the child’s severity of injury, condition and adaptive functioning, as well as family sociodemographic factors were considered. Methods The sample included 62 parents (53 mothers, 5 fathers, 4 mother-father pairs) of children diagnosed with neonatal stroke, hypoxia ischemic encephalopathy (HIE), and congenital heart disease (CHD) ranging in age between 3 to 9 years (mean age = 4.5 years, SD = 1.82). Results In this sample, approximately 80% of children were reported to have had utilized one or more therapies. The most frequent services utilized included: (a) speech and language therapy, (b) occupational therapy, and (c) physical therapy. Less than 10% of sample reported utilizing any psychological therapies. Common family barriers to all interventions included time off work, lack of childcare, and transportation. Parents of children with more severe injury or condition reported that their children were utilizing a greater number of interventions and also perceived a greater number of barriers. Over half of the parents expressed a need for more parent support groups, remote psychosocial services, and individualized psychological therapy for themselves or their family. Conclusions Findings highlight patterns of utilization and perceived gaps in early and school-age interventions for children with congenital or neonatal conditions that impact neurodevelopment. Direction for clinical care and improved intervention opportunities are discussed.

A CROSS-SECTIONAL SURVEY ON COPING BEHAVIOR OF PAKISTANI PARENTS WITH A CHILD DIAGNOSED AUTISM SPECTRUM DISORDER

BACKGROUND AND AIMS Number of studies reported that most of the parents of children with developmental disabilities such as Autism spectrum disorder (ASD) are suffering from stress, anger, guilt and depression Either they not aware of the coping strategies or are in denial with self-condition, this led to adverse effects on parent’s quality of life, relationship with each other and children. This study aims to discover the coping strategy that parents are following to overcome their emotional disturbance for being parent of child with ASD. METHODOLOGY A cross-sectional survey was responded by parents of children with ASD, enrolled via convenient sampling technique. The data was collected through a standardized questionnaire BREF-COPE, formulated in Google Docs, distributed via email or WhatsApp group. RESULTS A total number of 150 participants were enrolled in the study that included 74.2% of as primary care givers (mean age: 32.2±10.6 years) and their respective autistic children (mean age: 7.1±4.4 years). Results revealed 51.6% parents usually concentrate on their efforts with their children while 64.5% understand the reality of situation. Surprisingly, 12.9% consume alcohol or take antidepressant drugs while majority seeks emotional support from others to make them better. Overall, only 16.1% are able to implement coping strategies in their routines. CONCLUSION It was concluded that there is an intense need to introduce parent support group for better catharsis and inculcation of positive coping strategies among parents of children diagnosed with ASD.

Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents.

Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.

School-Based Services—Autism Toolkit

There are different levels of intervention that a teacher and school can provide to your child.To get a Section 504 plan or an IEP for your child, you or a teacher at your child’s school must make a written request. Your pediatrician can help you make this request by getting together information about your child or by helping you write a letter.Autism spectrum disorder (ASD) is covered by Part B of the Individuals with Disabilities Education Act (IDEA), which gives funding to schools to make IEPs for children with disabilities. If a child has ASD and it affects his functioning in school, he may qualify for school-based services. The school team and the family need to agree on what services your child should get in the IEP. Some children with ASD have fewer academic needs, and school districts may want the child to have a Section 504 plan instead of an IEP.A team of specialists in the school district will test your child to see which services might help her. If your child has enough delays in learning, she will be eligible for an IEP. The team—with your family—will write an IEP to help your child reach goals for the school year. The goal of an IEP is to give services in the “least restrictive environment” as much as possible. This means that your child should learn with typically developing children as much as she can.Your child may have extra help in a typical class; have services such as speech therapy, occupational therapy, physical therapy, or behavioral supports during the school day; or attend all or part of the day in a specialized classroom, depending on her needs. As part of the IEP, your child may get other services such as transportation and social work.You should help make goals for the coming academic year and work with the educational team in writing the IEP. It is important for the school district to give your family an interpreter if you need one to be part of the IEP process.If you do not agree with IEP recommendations, you have the right to request a second opinion. You also have the right to take legal action against your child’s school district if you feel the district is not following federal education law. The IEP is looked at yearly and may change as your child’s needs change.An IEP must includeIf you feel unsure about your child’s program for any reason, you have the right to take someone you trust with you to the IEP meeting. This could be anyone, from someone you know who is a teacher, to someone from a local parent-to-parent or parent support group, to a formal educational advocate.All children have a right to a free public education that meets their own learning needs. This means that children with disabilities can receive the education they need at no cost to their families. Students with developmental disabilities can have educational programs and services until they are 21 years old.The information contained in this resource should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances. Original resource included as part of Caring for Children With Autism Spectrum Disorder: A Practical Resource Toolkit for Clinicians, 3rd Edition.Inclusion in this resource does not imply an endorsement by the American Academy of Pediatrics (AAP). The AAP is not responsible for the content of the resources mentioned in this resource. Website addresses are as current as possible but may change at any time.The American Academy of Pediatrics (AAP) does not review or endorse any modifications made to this resource and in no event shall the AAP be liable for any such changes.

Attachment formation within adoptive families and post-adoption support

This study aims to explore the experience of the adoptive families related to the attachment formation with the adopted child. Existing post-adoption services are explored. The study design is qualitative and triangulated the data from interviews with 11 adoptive parents, with a wide range of attachment relationship experience, from observation within a support group for adoptive parents, from interviews with specialists working in the statutory and private sector in the adoption field, and from social documents. Data analysis made use of the thematic analysis and storytelling. The key factors facilitating the attachment process are discussed and several recommendations for post-adoption services are made.