Lived Experiences Of Parents Research Articles

A parent-sibling dyadic interview to explore how an individual with Autism Spectrum Disorder can impact family dynamics

BackgroundAutism Spectrum Disorder (ASD) is a life-long condition which affects the individual and their family system. Little research understands the impact of an ASD upon families, how this may change over time and how COVID-19 has impacted these dynamics. AimsTo explore the impact of an ASD on the lived experiences of parents and neurotypical adult siblings, including during the UK COVID-19 lockdown. MethodsEight parent-sibling dyads (16 individuals) completed semi-structured interviews discussing their family before, during and after receiving the ASD diagnosis, and in relation to the first UK lockdown. Interview transcripts were analysed using Interpretative Phenomenological Analysis. ResultsThree super-ordinate themes were identified: Dominated by ASD; Family Cohesion; and the Need for Support. ConclusionsThe data suggested a closeness within the families and an adoration towards the individual with ASD (IWA). Dyads were, to an extent, consumed by the diagnosis both presently and in the future, implicating the need for a stretch in services to support parents and neurotypical siblings. In terms of the first UK lockdown, the IWA added an extra layer of difficulty to the dyads work-life balance yet there was an essence of family cohesion. Future research should consider longitudinal methods and explore the impact of ASD co-morbidities upon family dynamics.

Education Inequality Revisited Through the Lived Experiences of Parents During Virtual Learning

The purpose of this study was to investigate the lived experiences of parents who providing support for their children during virtual learning to better understand whether virtual learning was potentially exacerbating or soothing access of children of various socio-economic statuses to education. For this purpose, an online survey was passed into all e-channels of parents of children enrolled in primary schools accessible by the researchers. A total of 87 respondents constituted the research sample. Quantitative data was analyzed using SPSS 21.0 for windows, while qualitative data was analyzed using thematic analysis. Post to this, 3 e-focus group interviews were held with a total of 18 parents who volunteered to participate to better understand their view points. Findings show that parents are highly frustrated in relation to virtual schooling offered to their children. The underlying reasons for such exasperation have been attributed to the time that it requires them to put into their children learning; the money they needed to spend on technology; the lack of proficiency they suffered from using digital technologies; the preparedness of their children’s teachers in terms of using technologies; the competency of their children using digital technologies; and the internet connectivity in the country. It can be therefore concluded that student access to education in light of Covid-19 is getting more linked to higher levels of socio-economic statuses thus advancing education inequality even more.

Parental contributions and assessment for learning as a component of mathematics homework

ABSTRACT Assessment for Learning (AfL) has long been identified as effective in supporting teachers to modify their teaching and learning with the aim of improving attainment but AfL practices are rarely applied to mathematics homework. Parental involvement in learning is also a key ingredient to success. This paper explores the benefits of using AfL strategies within mathematics homework that harnessed the involvement of parents. Nine English primary schools piloted the use of mathematics homework projects that were based in the lived experiences of parents and children. A designated classroom changeover session was introduced to provide an opportunity for children, teachers and parents to practice AfL strategies within the context of mathematics homework. Findings suggest that changing the nature of the homework provided more opportunities for discussion in the home which resulted in higher quality engagement. Parents commented that there was reduced tension over homework as they were able to use their own calculation methods and children were more willing to see them as experts with this type of activity. Children more readily accepted feedback from parents and peers on how to improve their approaches.

Separate Sunday School for Some Children with Special Needs: A Teaching Model

A qualitative study was conducted to explore the lived experiences of parents of children with special needs who had a desire for their children to learn about Jesus in a separate Sunday school classroom but did not have a church home. Twenty-one separate Sunday school classes for children with special needs were taught and observed. The ten parents of children with disorders were asked questions to explore their perceptions of spiritual needs and concerns regarding their children.

Lived Experiences of Parents with Children Diagnosed with Cancer in Trinidad: Challenges and Coping Strategies

Aim: The aim of this study is to explore the lived experiences of parents pertaining to how cancer in their family affected their lives. In particular the study detailed the participants’ challenges and the strategies they adopted in dealing with the challenges. Methodology: An exploratory phenomenology method was used to guide the study. The participants were selected from the Paediatric Oncology Clinic at The Wendy Fitzwilliam’s Paediatric Hospital. Triangulation of different strategies namely, a focus group interview and four key informant interviews were utilized to collect data from ten parents. The data was audiotaped, transcribed and organized into codes and themes. Results: In the main, findings revealed three main themes: reliance on spirituality to cope, psychosocial challenges, and social support system. This study revealed that the lived experiences of parents who care for their children diagnosed with Cancer, are like a never-ending struggle. Discussion: Regardless of the substantial progress in the treatment of Cancer, childhood Cancer is still emotionally, physically, and psychologically challenging for parents and nurses. This was discussed vis a vis literature. Recommendation: The themes highlighted offer opportunities for additional qualitative and quantitative research in the field of oncology and its impact on Trinidadian parents and the Trinidad family system and dynamics. However, further research is needed from the nursing perspective to focus on paediatric oncology.

Ontological Thought for the Educational Meaning of the Life World: Focusing on the Lived-Experience of Parents of Autistic Children

Ontological Thought for the Educational Meaning of the Life World: Focusing on the Lived-Experience of Parents of Autistic Children

Experiences of parents and carers in managing asthma in children: a qualitative systematic review protocol.

The overarching objective of this review is to enhance understanding of the lived experiences of parents and carers in managing a child with asthma. Enablers and barriers encountered by parents will be examined and findings of the review will be used to develop recommendations for enhancing policy and practice aimed at improving asthma management for children and their families.The specific objective of this review is to critically appraise and synthesize the best available evidence based on qualitative studies exploring the experiences of parents and carers in managing their child's asthma.The primary question to be addressed is:Secondary questions to be addressed include.

Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study

In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a ‘good parent’, parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life.Conclusion: Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened.What is Known:• In paediatric palliative care, parents are confronted with increasing caregiving demands.• Parenting is often approached from the perspective of stress.What is New:• Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance.• Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life.• Professionals need insight into the parents’ aims and tasks from the parental perspective to strengthen parents’ resilience.

How do we get our Daughter back? Parents' Perspectives on Recovery from Anorexia Nervosa

Background: Anorexia Nervosa is a severe mental illness most commonly occurring during adolescence. As a parent, caring for a child with Anorexia Nervosa can quickly consume all aspects of family life, leading to frustration, feelings of burden and increased levels of anxiety and depression. Despite the impact of the illness on parents, there is a surprising lack of literature drawing on parents perspectives of recovery, particularly during adolescence. Objective: To gather the lived experience of parents caring for an adolescent daughter throughout recovery from Anorexia Nervosa. Method: Eight participants, seven mothers and one father, were recruited from two specialist outpatient eating disorder services. All parents had an adolescent daughter between the ages of fourteen and eighteen in recovery from Anorexia Nervosa. The study used a qualitative design and the research lead completed semi structured interviews with each of the eight parents. The interviews were transcribed and analysed using Interpretative Phenomenological Analysis. Results: Analysis of the data revealed one overarching super-ordinate theme, ‘a journey to recovery’ encompassing a further four super-ordinate themes. The four super-ordinate themes included “a secret exposed,” “anorexia is tearing our family apart,” “how do we get our daughter back?” and “accessing help.” The results of the analysis are discussed in line with relevant theory and ideas for clinical practice are highlighted. Conclusion: The current study highlighted the invasion of Anorexia Nervosa and its ability to tear the family apart. The study emphasises the adolescents need for emotional support throughout recovery but highlights the difficulties for parents due to the adolescents stage of development, their strive for independence and reluctance to accept their difficulties.

The lived experience of parents of children with mucopolysaccharidosis (MPS)

The lived experience of parents of children with mucopolysaccharidosis (MPS)

How mothers experience their adolescents’ first year in high school

ABSTRACTTransitions can have a profound impact on the person, their environment, and their occupations. Entering high school is a transition that has implications not only for the adolescent, but also for their family members. A greater understanding from an occupation perspective of how people and groups adapt to life transitions of one person is critical to understanding transition. The study objective was to gain an in-depth understanding of the lived experiences of parents whose adolescent child had recently transitioned into high school. This included exploring the parents’ experiences of transition on their role, routines and occupations when their child is in transition. This descriptive phenomenological study used semi-structured interviews to collect data from five mothers with a child in his or her first year of public high school in Vancouver, Canada and surrounding areas. Four themes were identified: 1) Venturing into the Known and Unknown, 2) Navigating Changing Occupational Demands, 3) Redesigning Parent-Child Communication, and 4) Collective Transition. This study demonstrates how this transition influences a change and has the potential to disrupt mothers’ routines and occupations (including family co-occupations). This study highlights the theme of meaningful connections in the study of occupation, and contributes to a growing body of evidence on life transitions by exploring the lived experience of a predictable life transition on roles, routines, and occupations of mothers with a child in his or her first year of high school.

Conclusion for Part 1 and Part 2 of the Special Issue: Multicultural Perspectives of Intergenerational Transmission of Trauma

This two-part special issue addressed the effects of intergenerational transmission of trauma (ITT) affecting diverse communities. The authors provided insight into the lived experiences of parents...

Adaptation in families raising children with fetal alcohol spectrum disorder. Part I: What has helped

ABSTRACTBackground There is limited research investigating the lived experiences of parents raising children with fetal alcohol spectrum disorder (FASD). The aim of this paper is to use qualitative analysis to identify how parents have adapted to the experience of raising their child with FASD.Method Eighty-four parents and caregivers of children with FASD in Ontario, Canada, participated in in-depth, semistructured interviews employing a basic interpretive approach.Results Parents of children with FASD report a number of strategies, supports, and transformational outcomes. Using interpretative phenomenological analysis, 5 themes were identified: understanding FASD and advocating on their child's behalf, day-to-day adaptation, transformational outcomes, as well as the importance of informal and formal supports.Conclusions Understanding what families do in order to facilitate adaptation is important when assisting families who may not be adapting as successfully. Continued research looking at the family experience of raising a child with a developmental disability, such as FASD, is necessary.

No Excuses or No Equity?: Narrative and Counternarrative Themes within Educational Discourse in New Orleans

This article uses a research framework based in critical race methodology to analyze and emplot narrative and counternarrative themes in public discourse around education reform in New Orleans. It examines narratives from research literature, popular media, and teacher recruitment materials, including the theme of the open-access charter school system as an innovative solution to the failures of pre-Katrina neighborhood schools. It finally argues for the necessity of counternarratives grounded in the testimonies and lived experiences of parents, teachers and students navigating and surviving within a rapidly evolving pedagogical landscape.

Estilos parentales de enseñanza en familias con niños con necesidades educativas especiales en samacá-boyacá

El presente artículo de investigación surge de la pesquisa denominada “Estilos parentales de enseñanza en familias con niños con necesidades educativas especiales de Samacá”, cuyo objetivo es indagar los estilos parentales de enseñanza en las familias con niños que presentan necesidades educativas especiales en la Institución Educativa La Libertad del municipio de Samacá en Boyacá, a través de la metodología de la investigación cualitativa, con un enfoque crítico-social partiendo del método de la etnografía crítica. La población para el presente estudio estuvo compuesta por 15 familias del municipio. La estrategia de recolección de información se basó en la aplicación de entrevista, relatos de vidas, talleres investigativos y diarios de campo. El análisis de resultados se realizó desde el sistema categorial, el cual permitió ver que los estilos parentales de enseñanza de la población están establecidos como consecuencia de factores culturales y a partir de las experiencias vividas de los padres en su infancia, además se evidenció que los padres no comparten un mismo estilo parental, puesto que la figura paterna muestra negligencia en el cuidado y educación de sus hijos, mientras que la figura materna se considera la única responsable del cuidado de los hijos y de las demás responsabilidades del hogar.

How Do We Live With a Chronic Condition Without Expectations? A Family’s Story of Thriving With Dravet Syndrome

Abstract Date Presented 4/17/2015 This research aims to increase awareness of the lived experiences of parents and siblings of a family member with Dravet syndrome (DS) and the impact of DS on the family’s engagement of meaningful occupations for the development of family-centered and occupation-based occupational therapy interventions.

Lived Experiences of Parents’ of Children with Disabilities in Swaziland

Raising a child with disability is a challenge to most parents. The study explored the lived experiences of parents of children with disabilities in Swaziland. The specific objective was to determine the challenges which parents of children with disability encounter at home, school and community, which may hinder them to work collaboratively with educators for the betterment of the children. A phenomenological design was adopted. Participants were parents (female =16; Males=4) who were purposively sampled from a rural setting (Maphalaleni area) whose children attended in 20 primary schools in the same area. Data were collected using semi structured interview guides and were thematically analyzed. The findings revealed that the parents encounter challenges at work, at home, school and in the community such as emotional stress, failure to cope with the children’s disability and financial challenges. The study also indicated that the parents were not sure of what was expected of them in making educational decisions on behalf of their children. It also reported that parents of children with disabilities were not trained on how to cope with their children’s disability and how to work with educators. The findings suggest the need for the development of training programmes which will empower parents with knowledge to better partner with educators for the benefit of the child. To address these challenges, government will need to put in place policies which will look at the needs of parents of the children with disabilities.

Parents, providers partner in ‘co‐learning’ for children's well‐being

Through a “co‐learning” approach, parents and providers are working as peers and partnering to jointly plan and create culturally and linguistically responsive trainings, practices, events and resources. This relatively new model is considered critical for engaging knowledge and the lived experience of parents and pivotal in support of young children's well‐being, according to a new report by the creators of this initiative.

The lived experience of US parents of children with autism spectrum disorders: a systematic review and meta-synthesis.

Current US statistics indicate that 1 in 68 children is diagnosed with an autistic spectrum disorder (Centers for Disease Control (2014) Prevalence of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network, 11 Sites, United States, 2010. Morbidity and Mortality Weekly Report (MMWR)). The lived experience of parents with children diagnosed with autism spectrum disorder is important to know since quantitative studies have indicated that higher rates of mental disorders exist in this population as compared to parents of typically developing children (Yirmiya and Shaked (2005) Psychiatric disorders in parents of children with autism: a meta-analysis. Journal of Child Psychology and Psychiatry 46: 69-83). This study was a meta-synthesis of the qualitative literature in this area embedded within a systematic review. A comprehensive search and review yielded 14 studies. A total of six major themes were identified: (a) emotional stress and strain; (b) adaptation; (c) impact on the family; (d) services; (e) stigmatization; and (f) appreciating the little things. Implications of these results are discussed.

From Every Direction: Guilt, Shame, and Blame Among Parents of Adolescents with Co-occurring Challenges

This article explores the results of a qualitative inquiry into guilt, blame, and shame as experienced by parents of children with co-occurring mental health and substance use challenges. These interviews represent both the lived experience of parents, as well as the perspective of clinicians who work with these families. The parent–clinician alliance is taken as a central context for considering how these experiences may affect the dynamics of the helping relationship. Analyses of these results suggest that guilt, blame, and shame are often experienced by parents and have important implications for engagement and therapeutic processes. Parents associate feelings of blame with interactions from a number of helping professionals and connect personal characteristics, parenting behaviors, and relationship issues with experiences of shame and guilt surrounding their children’s behavioral health challenges. Finally, the information that is shared across these interviews is used to guide the development of a number of practice guidelines for social workers who work with families of adolescents that experience co-occurring mental health and substance use issues.