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Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective

Introduction: Foetal alcohol spectrum disorder (FASD) is a neurodevelopmental impairment that may result in individuals experiencing poor development, cognitive issues and disruptive behaviours. In Australia, the prevalence of FASD is unknown; however, two studies have revealed the prevalence of FASD in high risk populations in Western Australia.

Tue, 01/17/2023 - 15:31

Parenting in Serious Pediatric Illness: A Mixed Methods Study (GP768)

Objectives: Describe how parents prioritize parenting tasks and goals for their seriously ill and healthy children Illustrate how the process of trading-off one child's needs to meet those of another can contribute to parents' distress in serious pediatric illness.

Tue, 01/17/2023 - 09:06

Challenges Following Hospital Discharge for Children With Medical Complexity

Objectives: The transition from hospital to home is a period of risk, particularly for children with medical complexity. Our aim was to identify and address discharge challenges through execution of postdischarge phone calls.

Mon, 01/16/2023 - 13:54

The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

Background: Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home.MethodsWe conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home.

Mon, 01/16/2023 - 11:29

Children With Acute Lymphoblastic Leukemia And Families: Focus Group Study Of Their Unmet Needs

Background: The impact of pediatric oncology is psychosocially and physically profound. Children and their families have problems coping with the stresses of treatment, surgery, chemotherapy, and radiation. However, qualitative research incorporating the phenomenological experiences of children and their caregivers and professionals dealing with such cases in explaining the fabrics of trauma they handle especially in Indian socio-cultural set up is needed.

Fri, 01/06/2023 - 16:35

Challenges and contributors to self-efficacy for caregivers of toddlers with autism

In this qualitative study, 11 mothers of toddlers with autism participated in interviews to investigate how they perceived their roles and their competency to support toddlers' social learning in the context of both professional-implemented and parent-mediated early intervention models. The authors conducted a thematic analysis with multiple layers of independent coding. Four resulting themes highlighted challenges and contributors to parent self-efficacy.

Thu, 01/05/2023 - 18:59

Involvement of Jordanian Patients and Their Families in Decision Making Near End of Life, Challenges and Recommendations

Objectives: This study aims to explore the challenges in involving patients and their families in decision making near end of life and to provide recommendations to overcome these challenges. Methods: A qualitative descriptive phenomenological approach was used with a purposive sample of 8 patients, 7 family caregivers, 7 nurses, and 6 physicians from 2 institutions that provide palliative and end-of-life care services in Jordan. Data were collected using interviews with patients and family caregivers and focus group discussions with nurses and physicians.

Sat, 09/03/2022 - 11:51

Self-Directed Female Migration in Ghana: Health and Wellness of Elderly Family Caregivers Left Behind. An Ethnographic Study

Driven by the global economic crisis, families are developing strategies for survival, including self-directed female migration. Female migration has negative and positive impacts on families in rural areas. The purpose of the project was to explore the health and wellness experiences of elderly family caregivers who have female family members who have migrated to improve the status of their families. In this focused ethnographic study, we interviewed elderly family members who had a female family member who migrated outside their community for employment.

Wed, 04/07/2021 - 15:33

Living with Alzheimer Disease and Other Types of Dementia: Stories from Caregivers

This symposium includes twelve personal narratives from people who have provided care to a spouse, parent, another relative, or friend with Alzheimer disease or related dementias (ADRD). People with ADRDs often face years of cognitive decline with memory and thinking that eventually require help from others to assist with their daily activities. Most people caring for older adults in the US are unpaid family members, friends, or other informal caregivers. People providing care often experience emotional and physical stress, or financial burdens.

Fri, 12/11/2020 - 16:54

The Lived Experiences of Family Caregivers of Persons Dying in Home Hospice: Support, Advocacy, and Information Urgently Needed

Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care.

Mon, 08/03/2020 - 14:51

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