28 Childhood Burn Injuries: The Uninjured Sibling Perspective

2020 ◽  
Vol 41 (Supplement_1) ◽  
pp. S21-S21
Author(s):  
Dana R Dillard
Keyword(s):  
Narrative Inquiry ◽  
Family System ◽  
Burn Injury ◽  
Meaning Making ◽  
Program Planning ◽  
Service Development ◽  
Structured Interviews ◽  
Injured Child ◽  
The Family ◽  
The Impact

Abstract Introduction When considering burn-injured children as part of a larger family unit, it is expected their injury will stress the system; yet the focus has mainly been on the injured child and treated as incidental for the family. Though research on the family is evolving, less is known from the uninjured sibling perspective. Sibling relationships have a unique impact on development. This study aimed to understand the experience of growing up with a burn-injured sibling in childhood, with attention to how identity was shaped. Acquiring knowledge from uninjured siblings will facilitate a more integrative understanding and holistic approach to aid families. Thus, this exploratory study fills a gap by engaging the uninjured sibling’s perspective with implications for program enhancement/development. Methods Narrative inquiry was utilized to explicate the narratives of adults who grew up with a burn-injured sibling in childhood via semi-structured interviews (N=7). The research questions were: 1) What are the experiences, or stories, of identified adults whose sibling experienced a burn injury? 2) What do the narratives of identified adults whose sibling experienced a burn injury reveal about how their identities were shaped? 3) What are the implications for program/service development and/or enhancement elucidated by identified adults whose sibling experienced a burn injury? A purposeful criterion sampling method was used, but challenges accessing participants resulted in sequential and emergence-driven strategies. Participants’ self-identified as Caucasian (n=7), female (n=4), and male (n=3). Age ranged from 20 to 57 (M=33.14, SD=14.32) at the time of the interview and 0 to 13 (M=5.25, SD=4.25) at the time of their siblings’ injury. Interviews queried the burn incident, family relations, communication, and support received. Riessman’s thematic approach to narrative inquiry was employed for analysis. Results Findings supported five themes: 1) separation and alternative caregiving, 2) altered interactions and ambivalent roles, 3) (r)evolving emotional pain, 4) communication concerns, and 5) identity through autobiographical reasoning. The data suggest uninjured siblings have their own unique narratives that have failed to be acknowledged in research and practice, though identity clarity and meaning-making were articulated in their reflections. Moreover, findings support consideration of many experiences as a primary trauma. Conclusions The needs of uninjured siblings—specifically related to inclusion, identity, and resource acquisition—should be addressed to mitigate the impact of burn trauma. The family system remains a critical area for research and program enhancement/development. Applicability of Research to Practice Findings can contribute to program planning for the family with increased attention to the uninjured sibling’s experience and concern for their specific needs.

578 Childhood Burn Injuries: The Parent Perspective

2020 ◽  
Vol 41 (Supplement_1) ◽  
pp. S131-S131
Author(s):  
Dana R Dillard ◽  
Stacey R Kolomer
Keyword(s):  
Family System ◽  
Burn Injury ◽  
Emotional Health ◽  
Research Question ◽  
Program Planning ◽  
Family Members ◽  
Emotional Impact ◽  
Structured Interviews ◽  
The Family ◽  
The Impact

Abstract Introduction Interventions for burn-injured children (BIC) largely focus on the child with the physical injury while consideration for family systems appears incidental. This study aimed to gain insight into the perspectives and needs of parents/caregivers of pediatric burn patients (PPBP). When considering BIC within the context of a family system, it is reasonable to expect the injury to engulf everyone. The literature emphasizes the acute and lasting physical and emotional impact of burns. Moreover, research suggests PPBP experience an emotional response to the incident that is often complicated by physical absence from their other uninjured children. Thus, this exploratory study fills a gap by engaging the unique perspective of the PPBP and posits direct implications for essential program enhancement/development. Methods PPBP attending a family program participated in semi-structured interviews (N=11) guided by the research question: What are the experiences of PPBP? Participants’ self-identified as African American (n=4), Caucasian (n=5), and Latino (n=2). Age ranged from 29 to 48 (M=38.36, SD=6.14). Interviews involved queries regarding the burn incident, from injury to present (M=7.12 years, SD=4.61), including support received, what they wish people understood about the experience, and ideas for programming. Interviews were recorded and transcribed. Data were analyzed using van Manen’s hermeneutic phenomenological approach. Results Findings supported PPBP’s unique experience coalescing into one theme—the never-ending trip from hell—conceptualized as, “I didn’t mean to get here—none of this is familiar and I can’t find anyone I know. What’s going on and when will it be over?” Mutual painful insights were parental guilt, sensory experiences related to the acute incident and aftercare, unknown prognosis and medical treatment expectations, physical/emotional health problems, family members insensitivity, managing the cruelty of others, isolation, marital strains, and sibling tensions. Families also reported positive outcomes: strength of informal support networks, empowerment through educating others, and creating new allies. PPBP emphasized the benefits associated with meeting other families who also endured a burn injury and the importance of mutual support. Conclusions Programs should address the needs of all family members, not just BIC. In order to mitigate the impact of burn trauma, the family system impact remains a critical primary consideration for research and interventions. Applicability of Research to Practice Findings can contribute to program planning with increased consideration of the family system. As a result of findings from this study, siblings are now included in a summer camp program historically serving only BIC.

scholarly journals Exploring the lived experience of the Social ABCs parent-mediated intervention study

2021 ◽  
Author(s):  
Melanie Elizabeth Fenwick
Keyword(s):  
Early Intervention ◽  
Young Children ◽  
Lived Experience ◽  
Family System ◽  
Autism Spectrum ◽  
Structured Interviews ◽  
The Social ◽  
The Family ◽  
Intervention Impact ◽  
The Impact

In light of the paucity of research investigating the impact on the family of parent-inclusive models of intervention for young children with Autism Spectrum Disorder (ASD), this study explored the lived experience of families involved in the Social ABCs parent-mediated intervention for toddlers with ASD. Influenced by phenomenological inquiry, semi-structured interviews were conducted with seven parents from six families. Parents were asked a range of broad open-ended questions, some of which were guided by the literature on family outcomes of early intervention for children with disabilities. Using thematic analysis, the findings revealed several themes that highlighted the impact of the Social ABCs intervention on the child, the parent, and the family as a system. Five themes are discussed as they provide insight into the lived experience of families involved in the intervention: impact on child, impact on parents, impact on the family system, feasibility of implementation, and reflections on the Social ABCs experience. These findings may be useful for informing practice, policy and program development related to early intervention for young children with ASD and their families.

scholarly journals Exploring the lived experience of the Social ABCs parent-mediated intervention study

2021 ◽  
Author(s):  
Melanie Elizabeth Fenwick
Keyword(s):  
Early Intervention ◽  
Young Children ◽  
Lived Experience ◽  
Family System ◽  
Autism Spectrum ◽  
Structured Interviews ◽  
The Social ◽  
The Family ◽  
Intervention Impact ◽  
The Impact

In light of the paucity of research investigating the impact on the family of parent-inclusive models of intervention for young children with Autism Spectrum Disorder (ASD), this study explored the lived experience of families involved in the Social ABCs parent-mediated intervention for toddlers with ASD. Influenced by phenomenological inquiry, semi-structured interviews were conducted with seven parents from six families. Parents were asked a range of broad open-ended questions, some of which were guided by the literature on family outcomes of early intervention for children with disabilities. Using thematic analysis, the findings revealed several themes that highlighted the impact of the Social ABCs intervention on the child, the parent, and the family as a system. Five themes are discussed as they provide insight into the lived experience of families involved in the intervention: impact on child, impact on parents, impact on the family system, feasibility of implementation, and reflections on the Social ABCs experience. These findings may be useful for informing practice, policy and program development related to early intervention for young children with ASD and their families.

Experience and impact of the 1-2-3 magic parent programme for children with ADHD on the family unit from the mothers’ perspectives: A narrative analysis

2021 ◽  
pp. 136749352110399
Author(s):  
Stephanie Allen ◽  
Stephen K Bradley ◽  
Eileen Savage
Keyword(s):  
Narrative Analysis ◽  
Family Members ◽  
Study Data ◽  
Unintended Consequences ◽  
Structured Interviews ◽  
Children With Adhd ◽  
Family Unit ◽  
The Family ◽  
Narrative Constructions ◽  
The Impact

Parent programmes are often used in the clinical management of children with ADHD. Research into parent programmes has predominantly been concerned with their effectiveness and much less attention has been paid to the impact that they may be having on the family and the inter-relationships between family members. This study explores the perspectives and experiences of parents of children with ADHD, who participated in a parent programme, including its impact on the family unit. A purposive sample of six mothers of children with ADHD who completed a 1-2-3 Magic parent programme in Ireland was invited to take part in this qualitative study. Data were collected by means of individual in-depth, semi-structured interviews and a narrative inquiry approach further informed analysis of the interview data. Two major narrative constructions of experience: ‘parent programme as positive’ and ‘parent programme as negative’ were identified. Outcomes from this study illustrated some unintended consequences caused by the parent programme (i.e. sibling rivalry and conflict arising between family members). Mothers believed that the parent programme was a beneficial intervention, but it was not without its flaws and they felt it was helpful for their family when used in conjunction with other supports and mediations.

Family Estrangement

2013 ◽  
Author(s):  
Kylie Agllias
Keyword(s):  
Family System ◽  
Family Systems Theory ◽  
Structural Factors ◽  
Bowen Family Systems Theory ◽  
Political Awareness ◽  
Parental Alienation ◽  
Factors Affecting ◽  
The Family ◽  
Grief Responses ◽  
The Impact

Family estrangement—a concept similar to emotional cutoff in Bowen family systems theory—is the unsatisfactory physical or emotional distancing between at least two family members. It is attributed to a number of biological, psychological, social, and structural factors affecting the family, including attachment disorders, incompatible values and beliefs, unfulfilled expectations, critical life events and transitions, parental alienation, and ineffective communication patterns. Family estrangement is often experienced as a considerable loss; its ambiguous nature and social disenfranchisement can contribute to significant grief responses, perceived stigma, and social isolation in some cases. The social-work profession has a role to play in raising social and political awareness of the prevalence of, contributors to, and effects of estrangement on the intergenerational family, with clinicians working to assess and address the impact of estrangement on individuals and the family system.

The Impact of Intrafamilial Homicide on the Family System

2021 ◽  
Author(s):  
Corrie L. Jackson ◽  
Sam Margolius ◽  
Julie Stout ◽  
Scott Browning
Keyword(s):  
Family System ◽  
The Family ◽  
The Impact

Money, power, and inequality within marriage among Palestinian families in Israel

2019 ◽  
Vol 68 (3) ◽  
pp. 623-640 ◽  
Author(s):  
Tal Meler
Keyword(s):  
Financial Management ◽  
Gender Relations ◽  
Family System ◽  
Economic Behavior ◽  
Equal Rights ◽  
Structured Interviews ◽  
Financial Independence ◽  
Factors Affecting ◽  
Financial Autonomy ◽  
The Family

A key factor in promoting egalitarian gender relations is financial independence for women. Palestinian women citizens of Israel (PWCI) serve as a case study for gender relations in a patriarchal society. The financial identity of these women develops alongside general institutional discrimination, dual judicial systems (civil and religious), civil status, and cultural norms. However, factors affecting family budget allocation and financial autonomy of women in this society are not well understood. The present qualitative study used in-depth, semi-structured interviews to analyze patterns of financial allocation in the family system. The findings reveal that the financial independence of most PWCI is limited, although the spectrum ranges from partially autonomous financial management to economic violence. Most couples keep separate accounts, where the wife receives an allowance from her husband, and the wife’s relative financial autonomy is determined by the magnitude of this allowance. Under such conditions, gender relations and power relations are unequal. Most PWCI are unemployed or working in low-paid jobs, and consequently, their contribution to the family budget is considered negligible. However, this meager contribution enables women to participate in financial decision-making, from which they are often excluded by their husband. Furthermore, the ability of women to save money is limited as well, and some must do so in a clandestine manner. The findings shed light on economic autonomy of women, and will allow policy makers to establish criteria for determining when normative economic behavior becomes violent, to promote legislation ensuring equal rights for women.

scholarly journals PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS

2016 ◽  
Vol 25 (4) ◽  
Author(s):  
Geisa dos Santos Luz ◽  
Mara Regina Santos da Silva ◽  
Francine DeMontigny
Keyword(s):  
Rare Disease ◽  
Social Services ◽  
Rare Diseases ◽  
Healthcare Services ◽  
Strong Impact ◽  
Structured Interviews ◽  
The Family ◽  
Priority Needs ◽  
The Impact ◽  
The Relationship

ABSTRACT Rare diseases cause strong impact in families and generate needs beyond those associated with the most frequent diseases. Some of these needs are the inclusion of new responsibilities and the relationship with the healthcare and social services. This study is aimed at identifying the priority needs of families of rare disease patients as perceived from the time of diagnosis. This is a qualitative study conducted with 16 relatives of rare disease patients who live in the state of Rio Grande do Sul. Data were collected from November 2012 to March 2013, through semi-structured interviews and submitted to content analysis, based on the bioecological system of human development. The results indicated the following priority needs: access to social and healthcare services; knowledge about rare diseases; social support structures; acceptance and social integration; preservation of personal and family life. It was concluded that (re)organizing services and meeting the specific needs are preconditions to qualify nursing care and soften the impact the rare disease has on the family.

Sign in / Sign up

Export Citation Format

Share Document