The Function of Ritualized Acts of Memory Making after Death in the Neonatal Intensive Care Unit

(1) Background: Some infants die shortly after birth, leaving both parents and nurses in grief. In the specific setting where the data were collected, the bereaved parents receive a scrapbook made by the nursing staff in the NICU, and a box made by a local parent support group. Making a scrapbook and a box when an infant dies in the NICU can be regarded as ritualized acts. The aim of this study is to explore the functions of these ritualized acts of making a scrapbook and memory box when an infant dies in the NICU. (2) Methods: Focus group interviews were performed with experienced nurses in the NICU, and with members of a parent support group. Reflexive thematic analysis was used to interpret the data. (3) Three main themes were constructed: “Making memories”, “showing evidence of the infant’s life and of the parenthood”, and “controlling chaos”. (4) Conclusions: Through the ritualized acts of making scrapbooks and boxes, nurses and members of the parent support group collect and create memories and ascribe the infant with personhood, and the parents with the status of parenthood. In addition, the ritualizing functions to construct meaning, repair loss, relieve sorrow, and offer a sense of closure for the makers of these items.

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

Background The 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. Methods We 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. Results Parents 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. Conclusion This 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.

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.

770 Increasing Attendance in Parent Support Groups Through Creative Engagement

Introduction Engaging parents of pediatric burn survivors in support programs enhances children’s coping and self-esteem. A parent support group for pediatric burn survivors was created to address these issues, but participation was consistently low, with an average attendance of two. To increase attendance, the format of the program was modified to target the survivor as well as parental needs. Methods The program was created for burn survivors age 3 to 17 years and their parents. The pediatric module incorporated developmentally appropriate activities to engage pediatric burn survivors and siblings in therapeutic techniques to normalize their experience and provide expressive opportunities. Parents attended a parent support group, where facilitators encouraged expression of feelings connected to their child’s burn injury and developing strategies for supporting their child through daily life. The parent portion also fostered an opportunity for them to develop their own coping skills. A trained peer support volunteer attended the program to foster peer support. A survey gauging parental perception of their child’s coping and their own coping was developed and distributed to all parents at the end of the session. Results There were 29 attendees (11 adults and 18 children). Ten surveys were completed, but one was eliminated due to user error. The results were overwhelmingly positive and validated a need for parent support (see table). Most parent participants (78%) had never attended a burn survivor support program though all had previously attended survivor-related social events. All respondents indicated they wound attend this event again. Conclusions Engaging survivors and their families in recreational-based events appears to lead to higher attendance, as all participants had previously attended social events provided by the burn program. Parents may be more inclined to attend an event that focuses on their child’s needs rather than, or in addition to, their own. Additional programs are planned with a goal of quarterly meetings. Attendance and feedback will need to be tracked to corroborate the findings of this initial experience and foster the growth of a robust parental support program. Applicability of Research to Practice Providers of parent support groups need to be creative in developing formats that increase participation. Recreational activities alone do not foster coping skills and emotional support. Activities need to be created that support the psychosocial needs of pediatric burn survivors and their parents.

PENGASUHAN (GOOD PARENTING) BAGI ANAK DENGAN DISABILITAS

Setiap anak tidak terkecuali anak dengan disabilitas mempunyai hak untuk tumbuh dan berkembang, mendapatkan pendidikan, dan hak-hak lainnya. Akan tetapi jumlah anak disabilitas di Indonesia yang ternyata tidak sedikit harus diperhatikan bersama terutama oleh lingkungan terdekat atau orangtua. Hal ini dibuktikan dengan adanya jumlah anak penyandang disabilitas yang semakin meningkat dari tahun ke tahun menurut Pendataan Direktorat Rehabilitasi Sosial Penyandang Cacat Kementerian Sosial (2009) , terdapat 65.727 anak, yang terdiri dari 78.412 anak dengan kedisabilitasan ringan, 74.603 anak dengan kedisabilitasan sedang dan 46.148 anak dengan kedisabilitasan berat. Lalu berdasarkan Susenas Triwulan 1 Maret 2011, jumlah anak Indonesia sebanyak 82.980.000. Dari populasi tersebut, 9.957.600 anak adalah anak berkebutuhan khusus dalam kategori penyandang disabilitas. Anak dengan disabilitas memerlukan penanganan khusus, tetapi tidak semua orangtua yang tulus menerima anak dengan disabilitas dan memberikan kasih sayang secara penuh hal ini dapat terlihat dari penerimaan orangtua yang sedih, malu, dan terkejut. Dengan penerimaan tersebut, akan mengakibatkan orangtua tidak memperdulikan anak dengan disabilitas dan kurangnya perhatian atau kasih sayang orangtua kepada anak dengan disabilitas. Belum banyak orangtua yang menerima anak dengan disabilitas dengan hati yang tulus, yang mengakibatkan kurang terpenuhinya hak dan kebutuhan anak dengan disabilitas. Dalam hal ini, perlu adanya pengasuhan baik dari keluarga terutama kedua orangtua anak. Pengasuhan yang baik akan menghasilkan anak dengan disabilitas dapat memenuhi kebutuhan dan mendapatkan hak mereka sehingga dapat berfungsi secara sosial. Perlunya edukasi akan fungsi keluarga yang memang harus dipenuhi yaitu afeksi, keamanan, identitas,afiliasi, sosialisasi, kontrol harus diberikan orangtua kepada anak penyandang disabilitas. Pelayanan sosial bagi keluarga juga dapat diterapkan diadakan misalnya dengan pelayanan konseling keluarga, family life education (pendidikan kehidupan keluarga), dan parent support group dapat dilakukan oleh pekerja sosial dalam memberdayakan orangtua serta anak dengan disabilitas.

PENGASUHAN (GOOD PARENTING) BAGI ANAK DENGAN DISABILITAS

Setiap anak tidak terkecuali anak dengan disabilitas mempunyai hak untuk tumbuh dan berkembang, mendapatkan pendidikan, dan hak-hak lainnya. Akan tetapi jumlah anak disabilitas di Indonesia yang ternyata tidak sedikit harus diperhatikan bersama terutama oleh lingkungan terdekat atau orangtua. Hal ini dibuktikan dengan adanya jumlah anak penyandang disabilitas yang semakin meningkat dari tahun ke tahun menurut Pendataan Direktorat Rehabilitasi Sosial Penyandang Cacat Kementerian Sosial (2009) , terdapat 65.727 anak, yang terdiri dari 78.412 anak dengan kedisabilitasan ringan, 74.603 anak dengan kedisabilitasan sedang dan 46.148 anak dengan kedisabilitasan berat. Lalu berdasarkan Susenas Triwulan 1 Maret 2011, jumlah anak Indonesia sebanyak 82.980.000. Dari populasi tersebut, 9.957.600 anak adalah anak berkebutuhan khusus dalam kategori penyandang disabilitas. Anak dengan disabilitas memerlukan penanganan khusus, tetapi tidak semua orangtua yang tulus menerima anak dengan disabilitas dan memberikan kasih sayang secara penuh hal ini dapat terlihat dari penerimaan orangtua yang sedih, malu, dan terkejut. Dengan penerimaan tersebut, akan mengakibatkan orangtua tidak memperdulikan anak dengan disabilitas dan kurangnya perhatian atau kasih sayang orangtua kepada anak dengan disabilitas. Belum banyak orangtua yang menerima anak dengan disabilitas dengan hati yang tulus, yang mengakibatkan kurang terpenuhinya hak dan kebutuhan anak dengan disabilitas. Dalam hal ini, perlu adanya pengasuhan baik dari keluarga terutama kedua orangtua anak. Pengasuhan yang baik akan menghasilkan anak dengan disabilitas dapat memenuhi kebutuhan dan mendapatkan hak mereka sehingga dapat berfungsi secara sosial. Perlunya edukasi akan fungsi keluarga yang memang harus dipenuhi yaitu afeksi, keamanan, identitas,afiliasi, sosialisasi, kontrol harus diberikan orangtua kepada anak penyandang disabilitas. Pelayanan sosial bagi keluarga juga dapat diterapkan diadakan misalnya dengan pelayanan konseling keluarga, family life education (pendidikan kehidupan keluarga), dan parent support group dapat dilakukan oleh pekerja sosial dalam memberdayakan orang tua serta anak dengan disabilitas.