Lived Experiences Of Families Research Articles

Designing a Community Health Worker (CHW) Certificate Training that Centers Marginalized Youth’s Health and Wellness

The genesis of the youth Community Health Worker (CHW) and Citizen/Community Science (CS) training is rooted in interdisciplinary research and the lived experiences of families in Chicago and Urbana-Champaign. Dr. Mendenhall and colleagues’ (Drs. Robinson, Roberts and Rodriquez-Zas) South Chicago’s Black Mothers’ Resiliency Project provide dinsights into Black women’s experiences with genomics, trauma, and community science. Black women’s testimonies highlighted the health impacts of living in neighborhoods with high levels of gun violence and the resilience strategies they employ. This led to the development of a youth-centered CHW and CS training program, aimed at addressing health disparities. The program trained high school students and young adults (up to age 24) as CHWs and CSs, focusing on the objectives of (1) embedding culturally competent health workers in marginalized communities; (2) amplifying community voices; (3) collecting, analyzing, and quantifying observational data to inform policy decision-making; (4) amplifying community voices in healthcare discussions and (5) creating community health care worker training certification for youth. Over three years, the program trained over 50 participants, incorporating elements of wellness, art, and entrepreneurship.Based on ethnographic notes participants reported increases in wellness such as reduced anxiety and increased empowerment. The program’s long-term goals include creating employment opportunities for graduates and contributing to improved community health outcomes. This initiative represents a step towards addressing racial trauma and promoting community healing through youth-led innovation and empowerment.

Crossed Wires: The Disconnect Between Christian Leaders’ Perceptions of Parents and the Lived Experiences of Contemporary Families

This study explored the spiritual needs of Christian families by surveying and holding focus groups with parents and congregational leaders. We discovered a disconnect between what congregational leaders think is happening with families and the lived experience of families. Congregational leaders often perceive the lack of church engagement from families as disinterest or devaluing of spirituality and faith over and against other pursuits. However, our data revealed that parents deeply value spirituality and issues of faith. This research highlights the need for deep listening on the part of congregational leaders coupled with empathy for the pressures parents are currently feeling.

Teaching family law in neoliberal times

AbstractAcross scholarship and legal practice, family law is widely recognised as a subject that is inextricable from the social and cultural forces that shape our understanding of how families work and how they are positioned within society. This paper argues that it is now time to build upon this by integrating an explicit awareness of political context into how we teach family law. This is because teachers of family law are now faced with an urgent challenge: the encroachment of neoliberal governance into all corners of family justice. Neoliberal ideas are far from new, but they are increasingly shaping dominant ideas about what family law is for, who should be entitled to use it and, even in some circumstances, questioning the very legitimacy of family law or legal processes as means for supporting families experiencing breakdown. In response to this challenge, this paper advocates the importance of guiding students to look beyond family law doctrine in order to consider how political initiatives, trends and debates have the power to shape the procedures and processes through which family disputes are resolved. It will argue that drawing this contextual awareness into family law studies is crucially important to ensure that the future development of family law as both a scholarly discipline and an area of practice is centred on the needs and lived experiences of families who need it.

Family-centred service in paediatric acquired brain injury rehabilitation: perspectives of children and adolescents and their families

Purpose Family-centred service is considered best practice in paediatric acquired brain injury (ABI) rehabilitation. However, there is no universal model to guide clinicians and services in implementing this approach with a lack of research evidence informed by the lived experience of families. This study explored experiences of family-centred service during rehabilitation from the perspectives of parents/caregivers, siblings, and children/adolescents with ABI. Materials and methods Semi-structured interviews were conducted with participants from eight families, and included 10 parents/caregivers, five siblings, and four children/adolescents with moderate to severe ABI. Interview transcripts and additional data were analysed using constructivist grounded theory methods. Results Two themes and five sub-themes were developed: (1) Working together as a team: Valuing clinicians’ expert knowledge; Doing rehabilitation together; and Sharing family knowledge; and (2) Navigating rehabilitation as a family: Recognising family needs; Juggling family life; and Making rehabilitation work for the family. Participants reflected on the centrality of the child/adolescent with ABI during rehabilitation, and the ways that family needs, life, and involvement in rehabilitation change over time. Conclusions These findings highlight the importance of clinicians actively seeking to understand families’ unique contexts, needs, and priorities during rehabilitation through two-way information sharing with families. Through developing a greater understanding of families’ unique contexts, clinicians can be better placed to tailor rehabilitation according to their unique circumstances and needs. Implications for rehabilitation Rehabilitation involves active collaboration between families and clinicians that is responsive to changing needs over time. Family involvement in rehabilitation is shaped by family life, and families have unique needs following paediatric acquired brain injury. It is important that clinicians strive to develop an understanding of families’ unique needs, values, preferences, and lives to determine how to best support and involve them in rehabilitation.

Coproduced resources to support parents caring for children with gastrostomies

ObjectiveTo describe and disseminate a package of support for parents who care for children with gastrostomies, consisting of a library of videos and resources to support families from referral for...

Benefits and Challenges of Assistance Dogs for Families of Children on the Autism Spectrum: Mothers' Perspectives.

Assistance dogs are a potential intervention for families of children on the autism spectrum to support participation. However, the lived experience of families with new assistance dogs has not previously been explored. This study described the expectations, benefits, and challenges of assistance dog ownership for families of children on the autism spectrum. Data were collected from four mothers through semi-structured interviews and photovoice prior to assistance dog placement and following 6months of ownership. Findings indicated assistance dog ownership enhanced the child's self-regulation and socialization, and increased participation in daily routines. Having an assistance dog also enhanced participation in family outings and activities. Challenges included the adjustment period and the lack of public awareness of autism assistance dogs.

The National Disability Insurance Scheme Act 2013: experiences of family members in a regional community in New South Wales, Australia

The National Disability Insurance Scheme in Australia is projected to deliver individualised support to 475,000 people with a disability at the cost of $AUS22bil per annum. The actual experiences of Australian families supporting family members to engage with newly introduced individualised funding arrangements are critical considerations in any evaluation of the Scheme’s impact. This study aimed to understand and describe the experiences of family members beginning engagement with the National Disability Insurance Scheme in a regional area, and whether implementation of the National Disability Insurance Scheme reflected key principles and objects of the National Disability Insurance Scheme Act 2013 of the Commonwealth of Australia (NDIS Act 2013) in the lived experience of families. Thematic qualitative findings were drawn from semi-structured interviews with 72 family members new to the Scheme and living in regional New South Wales, Australia. Participants’ experiences of supports were linked to fundamental principles and objects of the NDIS Act 2013 and provide new insights into patterns of change in independence, participation, and social inclusion, and how these patterns of change might be operationalised in the NDIS Act 2013.

Anxiety, Knowledge and Lived Experiences of Families with COVID-19 Patients: A Mixed-Method Multi-Center Study in Iran.

Background: During community-wide outbreaks, patients and their families may suffer from anxiety after making behavioral changes. This study aimed to investigate the anxiety, knowledge, and lived experiences of families with COVID-19 patients admitted to medical centers.Methods: The present multi-center study was conducted by a mixed method using convenient sampling in hospitalized COVID-19 patients in Firoozgar and Rajaie Hospitals between May and July 2020. Anxiety was measured using a short form of the State-Trait Anxiety Inventory. The participants’ level of knowledge was assessed by an online questionnaire. The lived experiences of the families were explained through semi-structured interviews. Data were analyzed by Chi square, ANOVA, independent-samples t test, Kruskal Wallis, and Mann–Whitney tests in SPSS 16. P values≤0.05 were considered statistically significant.Results: The mean age of the 324 family members, who participated in the study was 45.1±13.3 years. The mean anxiety score of the subjects was 13.5±4.1, and 63.6% of the participants had moderate to severe anxiety. The subjects’ mean score for knowledge on COVID-19 was 7.15±1.32. The highest mean percentage of data received by the subjects on COVID-19 (42.7%) was obtained through radio and television broadcasting. A total of 251 important phrases were obtained from interview analysis and code extraction, out of which five main themes and 17 sub-themes were extracted.Conclusion: Our findings showed that anxiety was relatively high in families with COVID patients during the pandemic, and it was associated with age, sex, income, and familial relationships. The level of knowledge on the COVID-19 disease in families was moderate. Therefore, relevant interventions and raising people’s awareness are recommended.

Engaging with the Richmond Community to Reduce Pediatric Asthma Disparities: Findings from a Community-engaged Needs Assessment.

Childhood asthma disparities persist, with children living in low-income areas experiencing worse morbidity. We partnered with a community-academic research team and stakeholders to conduct a needs assessment to understand barriers and supports to asthma treatment. We convened a community advisory board, comprised of parents of children with asthma, youth with asthma, and members of key community organizations. Two focus groups with parents of children with asthma and four focus groups with youth with asthma were conducted, and a survey was administered to 100 parents. A visual mapping process was used to gather qualitative data about barriers, strategies, and outcomes, and allowed advisory board members to interpret focus group and survey data within the lived experiences of families. Focus group themes included parent stress/anxiety, concerns about school nurses, and lack of trust in providers. Findings from focus groups and surveys suggested that emergency department visits were not perceived negatively by families, although health providers and researchers generally view them as such. Public health implications include systemic changes that allow the healthcare system to address families' acute needs and worry. A community program focused on education and coordination among families, schools, and medical homes might improve asthma outcomes at the population level.

Lived Experiences of Fragile X Syndrome Caregivers: A Scoping Review of Qualitative Studies.

Fragile X Syndrome (FXS) is the most common x-linked monogenic cause of Intellectual Disability (ID) and Autism Spectrum Disorder (ASD). Taking care of children with ID is challenging and overwhelming due to the multiple facets of caregiving. This scoping review aimed at summarizing the qualitative literature on the experiences of families living with FXS, identify key themes and determine the gaps in the extant literature. We conducted a literature search in May 2019 using four databases; PubMed, Web of Science, African-Wide-Information, and Scopus. The keywords used in our search strategy were associated with caregivers, lived experiences, FXS, and qualitative research. All English language articles with full-text reporting were included. Studies associated with other neurodevelopmental conditions and quantitative studies were excluded. We identified 12 out of 203 articles that described the lived experiences of families with FXS. Most articles originated from the United States of America and mothers were the main caregivers. We summarized our findings into four major themes which are; grief experiences, challenges of living with FXS, coping mechanisms and the need to plan for future outcomes. This scoping review highlights the scarcity of qualitative FXS literature in the African population and frustrations endured by families with FXS due to the low knowledge of FXS by healthcare workers. More research is needed to evaluate the impact of living with FXS in males and fathers.

“They Come from Chaos:” Considering the Power of Stories in Home-School Relationships

Complex depictions of home-school relationships examine the often-present gap between teacher perceptions and the lived experiences of families. One way to address this gap in understanding is by constructing narratives that detail the nuances of families’ involvement, countering potential misperceptions and narrow views. In addition to using tools such as counter-narrative to speak-back to deficit-laden stories told about marginalized families, researchers must also attempt to deeply understand all stories in order to think through what teachers’ stories mean for how they understand their work. Thus, this paper presents a case study of a Head Start prekindergarten teacher, showing how her stories about families are related to her identity as a Head Start teacher. The stories show how power, stereotypes, and perceptions of families relate to her ideas about home-school relationships. Further, her particular stories ask educators to consider who is responsible for creating chaotic images of families’ lives and what impact do stories characterized by chaos have when they are the ones told about families who live in poverty.

Vulnerable Self

A sense of personal vulnerability in the face of death is the motivation behind this article. The focus of the research is first, on the lived experience of families facing bereavement in a children’s hospital. Using a qualitative hermeneutic phenomenological approach, the findings identify three key issues: Hope and struggle with God; A new experience of Community; A changed relationship with the child – Continuing bonds. Then drawing on theological resources, the author outlines a response to the emerging issues describing how a theological lens can bring a unique and appreciated contribution to the families’ experiences of loss, namely Theodicy: Sustaining faith and hope; Community: Being in community with God and people and Continuing Bonds: Facilitating expressions of remembrance, mystery and afterlife. Finally, consideration is given to the unique role of healthcare chaplains within the multidisciplinary team in a contemporary healthcare environment which is still negotiating the delivery of spiritual and religious care. The research confirms the valued and unique theological and pastoral contribution of healthcare chaplaincy within healthcare.

The Continued Lived Experience of the Unexpected Death of a Child

The purpose of this qualitative study was to further examine the lived experiences of families that faced the sudden loss of a child. Six mothers that had previously participated approximately 9 years ago in the study entitled "The Lived Experience of the Unexpected Death of a Child" were interviewed. All of the mothers were Caucasian and had achieved a high school or greater level of education. Taped interviews and field notes were transcribed for data display. Together, two raters completed data reduction and coding for theme identification and categorization. Six themes were revealed that described helpful coping behaviors used by the mothers: positive beliefs, faith beliefs, everlasting love, pleasant remembrances, social engagement, and staying connected. Two themes, avoidance and rumination, described the behaviors that did not help the mothers cope with their loss. Finally, answers to the questions regarding acceptance and healing time were also revealed.

Family experiences of palliative care in the acute hospital setting.

The study described in this article sought to gain understanding and insights into the lived experience of families who journeyed with their loved one through the palliative phase of illness as inpatients in the acute hospital setting. The study was carried out in a district general hospital which did not have the services of a palliative care team. A descriptive phenomenological approach was used as the researcher wanted the participants to describe their experience of palliative care in the acute hospital setting as they experienced it. This approach is described in detail. A purposive sample of eight family members was interviewed and data were analysed using Colaizzi's (1978) seven stages of data analysis. The results showed that the acute hospital environment had many shortcomings as a place to deliver palliative care and family members were at times left feeling isolated and helpless. The limitations of the study are discussed along with recommendations that could enhance outcomes of care for family members during this difficult period in their loved one's illness.