Group For Parents Of Children Research Articles

Mothers’ Internet Journeys Through Social, Health Care, and Virtual Systems When Congenital Anomalies Are Diagnosed In Utero

ObjectiveTo examine mothers’ internet usage, in conjunction with social, health care, and virtual peer support navigations, when congenital anomalies were diagnosed in utero. DesignQualitative descriptive, consisting of semistructured interviews. SettingInterview data were collected over Zoom; mothers participated from locations of their choosing. ParticipantsMothers of neonates discharged postoperatively from NICUs for uterine-diagnosed congenital anomalies. The sample was purposefully recruited from private Facebook groups for parents of children with congenital anomalies. Intervention/MeasurementsAnalysis was done with deductive coding using concepts from the third iteration of the systems engineering initiative for patient safety theory. The a priori codes were health care, social, journey–benefit, journey–risk, task, and technology. ResultsTwenty-two mothers signed up for an interview; 12 completed an interview, and 10 did not. The majority (n = 8, 66%) were White, had a bachelor’s or graduate degree (n = 7, 58%) and were between 24 and 33 years of age (n = 8, 66%). Nine themes emerged: (a) Providers cautioned searching for diagnosis information but encouraged private Facebook groups for peer support, (b) Mothers’ inquiries for their own care are lacking, (c) Search for information while recognizing parent-partner’s coping differences, (d) Pace information from friends and family with patience and appreciation, (e) Manage inquiries from friends and family with group sharing, (f) Private Facebook groups provide a means of receiving and giving peer support, (g) Exposure to difficult stories on Facebook is a risk of stress, (h) Select a NICU, learn about their children’s diagnoses, participate in virtual peer support, and (i) Device features frame search strategies. ConclusionMothers reflected on the internet as a burden and a source of support in their health care journeys. The ubiquity of internet access calls for mothers to include in their health care journeys the complexities of managing time spent on the internet.

장애 자녀를 둔 부모의 자조모임 관련 연구 동향

This study systematically analyzed domestic and foreign studies on self-help groups for parents of children with disabilities. This is performed in order to examine the characteristics and outcomes of parent self-help groups and to not only suggest directions for self-help groups in future, but also showcase implications for supporting these groups. A total of 17 articles dealing with self-help groups for parents or caregivers of children with disabilities published over the past 20 years were selected and analyzed in terms of overall research trends, characteristics, and outcomes of self-help groups. The results are as follows. First, four were quantitative studies and 13 were qualitative studies. The number of qualitative studies is more than three times higher than that of quantitative studies. Second, the most representative outcomes of self-help groups reported in four quantitative studies were the reduction of parenting stress and improvement of the quality of family life. Third, in 13 qualitative studies, parents shared their difficulties through self-help groups and provided emotional support to each other. During the process, parents gained confidence and began to support other parents who had similar difficulties. Based on these results, the directions and revitalization plan for self-help groups for parents of children with disabilities in Korea were proposed.

Virtual parent-led peer support groups for parents of children with eating disorders: A mixed methods feasibility study.

To examine the feasibility of a virtual parent-led peer support group (vPLPSG) intervention for parents of children with eating disorders (EDs). Forty-four parents were invited to attend 2-h-long vPLPSG sessions every other week for 6 months. A convergent mixed methods design was used to integrate quantitative survey data (collected at three timepoints and analyzed using repeated measures ANOVA) and qualitative interview data (collected at 6 months and analyzed using content analysis) to assess intervention feasibility. Feasibility was comprised of acceptability (e.g., recruitment and retention rates, desire to continue attending the groups) and preliminary effectiveness (e.g., change in parents' self-reported burden). The recruitment rate (67%), retention rate (77%), and attendance rate (60%) demonstrated adequate acceptability. All parents expressed their recommendation of this group to other parents, and most wanted to continue attending vPLPSG sessions. Participants qualitatively reported less isolation and burden as well as improvements in skills and confidence to manage their child's symptoms. These preliminary effectiveness findings were corroborated by quantitative data, with participants reporting a significant decrease in burden [mean difference (MD) = 6.61; p < .004], increase in confidence (MD = 11.17; p < .001), and decrease in unmet needs (MD = 5.03; p < .001) from baseline to 6-months. The vPLPSG intervention demonstrated feasibility with respect to acceptability and improvements in preliminary parental outcomes. Future research should evaluate the effectiveness of this intervention using a larger, more diverse sample. Dedicated efforts to support caregivers, such as through virtual parent-led peer support groups, have the potential to increase confidence and decrease burden for parents managing their child's eating disorder.

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

Background: The 2015 - 2016 Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. In response, we developed the 'Juntos' intervention, a 10 week community-based early intervention support group for parents of children with congenital Zika syndrome (CZS). The intervention's components include participatory learning sessions, practical skill acquisition, peer support, and psychological support, aiming to improve caregiver's knowledge and confidence in caring for their children. This study aimed to evaluate the feasibility of implementing 'Juntos' in Colombia. Methods: Two facilitators delivered 'Juntos' to four groups of 8-10 caregivers between 2017 and 2018. 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:The feasibility evaluation revealed that 'Juntos' was highly acceptable and in demand among the target population. The intervention was predominantly delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Additional organisational and social media support was required for successful implementation. Community health worker training may support integration and the established groups could facilitate programme expansion. However, participants perceived lack of prioritisation as a limitation within existing health systems. Participants' knowledge and confidence to care for their child improved after programme enrolment. Conclusion:The 'Juntos' intervention demonstrated high acceptability, demand, and practicality in supporting parents of children with CZS in Colombia. However, its implementation faces challenges due to existing gaps in health system support for children with CZS.

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

Background: The 2015 – 2016 Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. In response, we developed the ‘Juntos’ intervention, a 10 week community-based early intervention support group for parents of children with congenital Zika syndrome (CZS). The intervention's components include participatory learning sessions, practical skill acquisition, peer support, and psychological support, aiming to improve caregiver’s knowledge and confidence in caring for their children. This study aimed to evaluate the feasibility of implementing ‘Juntos’ in Colombia. Methods: Two facilitators delivered ‘Juntos’ to four groups of 8-10 caregivers between 2017 and 2018. 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: The feasibility evaluation revealed that 'Juntos' was highly acceptable and in demand among the target population. The intervention was predominantly delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Additional organisational and social media support was required for successful implementation. Community health worker training may support integration and the established groups could facilitate programme expansion. However, participants perceived lack of prioritisation as a limitation within existing health systems. Participants’ knowledge and confidence to care for their child improved after programme enrolment. Conclusion: The 'Juntos' intervention demonstrated high acceptability, demand, and practicality in supporting parents of children with CZS in Colombia. However, its implementation faces challenges due to existing gaps in health system support for children with CZS.

Effects of outsider witness practice on a support group for parents of children with autism spectrum disorder

ABSTRACT Purpose Providing effective support to parents of children with autism spectrum disorder (ASD) is an important part of clinical work. This study used outsider witnesses in group counselling for parents of children with ASD and explored the mechanism through which the therapeutic effects occurred. Method Parents of children diagnosed with ASD participated in an eight-session group activity. Two outsider witnesses were introduced into some of the sessions. The participants were interviewed to collect their experiences of and reflections on the outsider-witness practice. Texts were analysed using the categorical content approach. Results The intervention was effective because the participants shifted their subjective experiences to an objective position, leading them to reflect on their previous limited perspectives, thus resulting in self-redefinition. These therapeutic effects may arise due to physical displacement, experience resonance, and externalization of subjective experiences. The results of this study have important implications for parents and practitioners.

A comparison of the experiences, challenges and coping strategies for parents of children with autism residing in the United States and The Arab World

Most research on autism has targeted White Americans. Although challenges and coping mechanisms are present for all parents, some aspects are influenced by culture. This study aims to compare the experiences, challenges and coping strategies for parents of children with autism residing in the US and Arab countries. A survey, available in both English and Arabic, was posted electronically on social media support groups for parents of children with autism in Arab countries and the US. The survey covered experiences, challenges and coping strategies for raising a child with autism spectrum disorder. 165 surveys were collected from 15 Arab countries and 235 surveys were collected from 32 US states. On a scale from 1 to 5, with 5 being highest satisfaction, US parents reported a higher satisfaction for the overall diagnostic process with median score of 3.0 compared to 2.5 for parents in Arab countries. Parents in both countries reported information seeking/self-education about autism and acceptance and/or religion as the 2 most valuable coping strategies. Lower satisfaction with all aspects of the diagnosis process was found among parents in Arab countries compared to those residing in the US. Lack of community support for Arab parents was also a more significant challenge compared to US parents. With such poor community support for Arab parents, it is pivotal to expand upon initiatives that minimize the stigma and shame associated with an autism diagnosis to ultimately reduce challenges and allow for better parental experiences.

Are mindfulness groups more mindful face to face or online? A comparison of delivering a mindfulness based well-being group for parents of children with a chronic health condition.

Mindfulness has been shown to be an effective group intervention for adults and children living with a range of medical conditions. Recently, research has also explored the impact of mindfulness interventions offered to parents of children with health conditions. Few studies have examined whether the mode of delivery (face-to-face vs online) has an impact on outcomes. Four mindfulness based wellbeing courses for parents (MBWP) of children with a chronic medical condition were run (two face to face and two online). All parents (N=37) completed the WHO Well-being Questionnaire and Neff Self-Compassion Scale Questionnaire-Short Form at the beginning and end of each course. Parents' experience of the course was also explored using a semi-structured interview 6weeks after completing the course, with their responses analysed using Thematic analysis. The groups had a statistically significant positive impact on both parent well-being and self-compassion and were equally effective face-to-face or online. All parents reported incorporating informal mindfulness practices into their day-to-day lives 6weeks post-course The qualitative analysis highlighted improvements in present moment focus, kindness to self, and family relationships. Parents valued connecting with other parents of young people with both similar and different medical conditions, within both face-to-face and online groups, increasing the accessibility of MBWP.

Parental experiences of caring for children who have learning disabilities and procedural anxiety in hospital: An interpretive phenomenological study.

BackgroundChildren with learning disabilities (LD) are more likely to have health conditions that require hospital attendance than children without LD. Like all children, they can experience fear and distress related to procedural anxiety. Parents play a key role in managing procedural anxiety in children with LD. No previous published qualitative studies have explored parental experiences of caring for a child with LD and procedural anxiety in hospital.ObjectivesTo explore how parents experienced caring for their child with LD and procedural anxiety in hospital.MethodsA purposive sample of six participants were recruited through a Facebook group for parents of children with LD. Remote semi‐structured interviews were conducted via telephone, Microsoft Teams or Whatsapp. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis.ResultsFive key themes were generated: (1) Emotional toll: parents characterized their experiences as highly emotional; reporting feeling stressed, anxious and worried. (2) Restraint and holding: parents spoke of their experiences of restraint which was largely viewed as negative and sometimes inappropriate. (3) Advocacy: parents articulated their responsibility as advocates for their children. (4) Going it alone: parents were extremely proactive in managing their child's anxieties but some also felt highly‐pressurized and isolated. (5) Inconsistency and uncertainty: parents experienced inconsistency and uncertainty in their children's care from healthcare professionals which led to anxiety and frustration.ConclusionParents of children with both LD and procedural anxiety experienced many challenges. Parents' expertise must be utilized by clinicians when caring for children with LD and procedural anxiety whilst ensuring appropriate support for parents. Nurses require specific training in psychosocial interventions to enhance care for children with LD and procedural anxiety. Further research identifying effective nursing strategies to enhance parental experiences would be beneficial to improve care to this patient group.

Impact of COVID-19 lockdown on children with type 1 diabetes and their families in Al-Madinah

Background: Control of type 1 diabetes mellitus (T1DM) in children is very difficult due to non-adherence to therapy. Children with T1DM appear to have a higher prevalence of anxiety and depression than their healthy peers in regular situations, which is likely due to the challenges given by their medical illnesses. This study aimed at assessing the effect of the 2019 coronavirus disease (COVID-19) lockdown on children with T1DM in the Al-Madinah region of Saudi Arabia regarding their adherence to medications, effects on lifestyle, and development of diabetic complications. Methods: A cross-sectional qualitative study was conducted using a questionnaire filled out by parents that were distributed through the WhatsApp group for parents of children with T1DM receiving regular follow-up at the Maternity and Children&amp;apos;s Hospital. The questionnaire assessed the children&amp;apos;s adherence to medication and healthy lifestyles before and during the lockdown. Results: A total of 200 children with T1DM were included in the study, 117 females and 83 males. In terms of the average duration of diabetes, 103 of the participants (51.5%) had diabetes for between 1 and 5 years. There was a significant change in adherence to medication and healthy lifestyle before and during lockdown (14.74 ± 3.09 vs. 14.35 ± 3.24) (p = 0.044). A significant difference (p &amp;lt; 0.001) in the average daily blood glucose before and during the quarantine was also observed (208.95 ± 61.71 mg/dl vs. 231.38 ± 73.83 mg/dl). Conclusion: The COVID-19 pandemic lockdown had a significantly negative impact on children with T1DM.

Children's Behavior and Maternal Parenting Stress in Young Children With Sex Chromosome Trisomies.

Children and adolescents with sex chromosome trisomies (SCTs) usually show a higher frequency of behavioral problems than typically developing (TD) children. However, little is known about the presence of behavioral issues in toddlers with SCT. This study aimed at investigating their behavioral profile in the second year of life and its impact on maternal stress. Participants were 87 children ranging in age from 18 to 26 months: 63 children with SCTs (all diagnosed prenatally) and 24 TD children. Their psychomotor and language development and their behavioral profile were assessed. In addition, the level of maternal parenting stress was evaluated. Both psychomotor and language development were significantly lower in children with SCTs than in TD children. Conversely, no significantly greater behavioral problems emerged in children with SCTs. However, a significantly higher level of parenting stress related to a dysfunctional interaction with the child emerged in the mothers of children with SCTs. In this population, maternal stress seemed positively related to their children's emotional problems and pervasive disorders and negatively related to their children's psychomotor and linguistic competence. Although no significant behavioral issues emerged in the second year of life, the relationships found between children's behavioral profiles and maternal parenting stress highlight the importance of prenatal counseling and support groups for parents of children with SCTs. This might help them recognize the first signs of behavioral problems and become aware of their influence on parenting stress.

Potencjał intelektualny uczniów z zespołem Downa i orzeczoną niepełnosprawnością intelektualną w opinii ich rodziców

Research was conducted to find out about the parents’ opinions on the intellectual potential of their children with Down syndrome and diagnosed intellectual disability studying in 4–8 grades of common, integration and special schools. Additionally, the factors determining the respondents’ opinions were analyzed. The paper uses the author’s questionnaire was placed on groups for parents of children with Down syndrome on the social network site Facebook. In addition, surveys were sent by e-mail to the primary school districts and non-governmental organizations that help children with Down syndrome. Fifty two questionnaires were collected. The results indicate that, despite intellectual disability, parents recognize the intellectual potential of their children. It can be assumed that assessments of the intellectual potential of students with Down syndrome and diagnosed intellectual disability are determined by their siblings in the intellectual norm, gender, using verbal speech, communication skills, social skills and opinions of their parents about their successes in school and progress as a result of the therapy.

Intellectual potential of pupils with Down syndrome and diagnosed intellectual disability in the opinion of their parents

Research was conducted to find out about the parents’ opinions on the intellectual potential of their children with Down syndrome and diagnosed intellectual disability studying in 4–8 grades of common, integration and special schools. Additionally, the factors determining the respondents’ opinions were analyzed. The paper uses the author’s questionnaire was placed on groups for parents of children with Down syndrome on the social network site Facebook. In addition, surveys were sent by e-mail to the primary school districts and non-governmental organizations that help children with Down syndrome. Fifty two questionnaires were collected. The results indicate that, despite intellectual disability, parents recognize the intellectual potential of their children. It can be assumed that assessments of the intellectual potential of students with Down syndrome and diagnosed intellectual disability are determined by their siblings in the intellectual norm, gender, using verbal speech, communication skills, social skills and opinions of their parents about their successes in school and progress as a result of the therapy.

Bullying Victimization among Children with Food Allergies and Parental Mental Health

Children with food allergies are bullied at higher rates than the general population. Little research, however, has considered how parents of children with food allergies may be affected by the bullying victimization of their children. This research examines if having a child with food allergies who is bullied relates to parental levels of stress, anxiety, and depression. Data were collected by administering surveys in several online support groups for parents of children with food allergies ( N = 623). Results showed that having a food-allergic child bullied is related to higher levels of stress, anxiety, and depression among parents. Policy implications for health care and school professionals are discussed, with an emphasis on broadening treatment services to include the families of victims of bullying.

Effects of COVID-19 related restrictive measures on parents of children with developmental difficulties

Purpose Social distancing and school closures have changed the lives of many parents around the globe. In addition to these problems, parents of children with developmental difficulties (DD) have faced additional stressors that make them even more susceptible to higher stress levels and the onset or worsening of anxiety or depression. Consequentially, these stressors may have an indirect effect on parental functioning and children with DD owing to the spillover effect. Design/methodology/approach The purpose of this paper is to draw attention to parents of children with DD through an overview of possible additional stressors that have appeared during the coronavirus pandemic in Croatia. In writing this viewpoint paper, three sources were consulted: official state documents, communication with professionals (e.g. speech therapists) and online support groups for parents of children with DD. Findings Restrictive measures during the lockdown led to a lack of both formal and informal support for parents of children with DD. Moreover, the possibility of infection led to higher levels of fear among these parents; children with DD also encountered problems coping with both the restrictive measures and the demands of distance learning. Practical implications This paper may present a good starting point for both governments and NGOs when discussing and planning further advancement in the quality of response to the COVID-19 pandemic and a “recovery” response after the crisis. This overview may provide better insight into COVID-19–related consequences among parents of children with DD, which is vital to increasing the effectiveness of future measures and actions. Originality/value Although some negative effects of the pandemic on children have already been discussed by several authors, little attention has been paid to parents, and even less so to parents of children with DD. This paper may even represent a pioneering work in exploring the consequences of the COVID-19 pandemic on this population group.

The Socialization of People with Muscle-Skeleton Disorders in Rehabilitation Centres

The article considers the people with muscle-skeleton disorders (hereinafter “MSDs”) who suffer from the effects cerebral palsy, myopathy and spinal diseases. The article aims to determine, theoretically justify and experimentally verify the pedagogical conditions for the socialization of people with MSDs in rehabilitation centres. All the respondents had MSDs, namely: 76 respondents – pediatric cerebral palsy; 19 respondents – myopathy; 10 respondents – spinal diseases. It must be noted that 11 respondents, apart from MSDs, had intellectual disabilities (F 71). The experiment involved 59 males and 46 females. The age requirement was the following: 56 respondents aged between 14 and 17; 49 respondents aged between 18 and 19. The socialization programme, verified during the formative experiment, involved working with people with MSDs based on all socialization components; methodological work with the teaching staff of rehabilitation centres; parents. The programme included such specialized courses as Human Rights, Gardenotherapy; dance therapy; photography classes; a support group for parents of children with MSDs. Before the beginning of the experiment, only 11.55% of persons with MSDs had a high level of socialization. After the formative experiment, the number increased to 30.45%. Besides, 44.1% of people have a sufficient level of social skills. The implementation of the designed programme as a condition for the socialization of people with MSDs has made it possible to significantly increase the level of social skills in people with MSDs in the experimental group.

Maternal input to children with sex chromosome trisomies.

Although language difficulties are one of the most distinctive characteristics of the neuropsychological profile of children with sex chromosome trisomies (SCT), the analysis of the maternal input addressed to them is a neglected topic. The present study aims to analyse the lexical, morphosyntactic, and functional features of the input addressed to children with SCT comparing them with those of the input directed to typically developing children (TD). Participants were 38 mothers and their 8-month-old children, 19 with SCT and 19 TD children. Maternal utterances, collected during video-recorded play sessions, have been transcribed and coded. No significant differences between groups have been found in the lexical and syntactic characteristics of maternal input. However, considering the input functional features, the proportion of directives and questions was significantly higher in the maternal input addressed to children with SCT than in the input addressed to TD children whereas the opposite pattern was found in the proportion of affect-salient speech. The awareness of a possible delay in their children's language development could influence the way the mothers speak to them. In particular, the functional features of maternal input could be affected. Support groups for parents of children with SCT at the preverbal stage could be useful to reassure the mothers about their role in their children's language development. What this paper adds What is already known on the subject Studies in the literature identified a high percentage of language delays or impairments in children with SCT. To date, according to our knowledge, there are no studies that analyse the linguistic input addressed to these children. What this study adds The lexical and syntactic features of maternal input addressed to 8-month-old children with SCT are adequate to the children's communicative skills. However, the mothers of children with SCT seem to provide additional scaffolding in their verbal input, using a lower proportion of affect-salient speech and a higher proportion of questions. In addition, a higher proportion of directives suggests the use of a more demanding style. Clinical implications of this study The awareness of possible language delays could influence the functional features of input leading mothers to use a more supportive and demanding input. Support groups for parents of children with SCT at the preverbal stage could be useful to reassure the mothers about their role in their children's language development.

The feasibility of an adapted parenting group for parents of children with moderate to severe intellectual disability

This service evaluation aims to describe an adapted parenting programme for parents of children with intellectual disability.

Memorable Messages Parents of Children with Vascular Birthmarks Receive from Others: Implications for Stigma and Identity

ABSTRACTParents of children with visible illnesses and physical differences, such as vascular birthmarks (VBs), often fear that their child will be stigmatized by others. Despite their use of various strategies to minimize this stigma, parents still frequently receive comments and questions from others about their child’s condition. In the current study, we explore the source, content, and valence of these messages using a memorable messages framework. We also examine how parents react to messages from others and why those messages are considered memorable. To collect data, we administered a cross-sectional online survey through the website and social media pages of a national support group for parents of children with vascular birthmarks. A total of 70 parents completed the survey and, altogether, recalled 92 memorable messages. Our analyses revealed that the significance of the memorable messages coalesced around identity. Specifically, the messages described carried implications for a) participants in terms of their identities as parents, and b) participants’ children in terms of their identities as stigmatized individuals. When messages were directed at parents, parents appraised them negatively or positively to the extent that they made parents feel judged or validated as parents of children with VBs. When messages were directed at children, parents appraised them negatively or positively to the extent that they labeled children and their VB as abnormal, unattractive, and undesirable, or accepted and complimented children as unique, special, and beautiful. The current research extends previous research exploring the role of memorable messages in negotiating identity.

The Internet as an additional source of Information on rare illness. A Facebook support group for parents of children with craniosynostosis as a case study

Introduction Empirical studies show that belonging to a support group contributes to patient and caretaker empowerment. They also show that support groups significantly help parents and caretakers of ill children reduce stress and better handle the illness. Aim The aim of the study is to expand knowledge of how social media support groups function, and what impact they have on members. Material and methods Data was collected using online surveys conducted on 54 respondents. Results and discussion In particular, the respondents experienced empowerment in terms of ‘exchanging information’ and ‘finding recognition.’ Thanks to the online group, they felt better prepared to meet with their doctors. They identified with other members of the group, and considered the information posted thereby to be understandable and valuable. The stories of other parents helped them realize they were not alone. Conclusions (1) Most group members were mothers. (2) Above all, the members were seeking information, not emotional support. (3) Doctors were the main source of information on the disease. (4) Analysis indicated that ‘exchanging information’ was most strongly correlated with empowering outcomes, while ‘helping others’ was least correlated. (5) It was difficult for members to evaluate empowering outcomes.