Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups
Bulletin Board Focus Group; Case Studies; Complexity; Disability/Disabled Persons; End-Of-Life Issues; Focus Groups; Illness and Disease; Young Adults
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population is difficult because of the complexity of their conditions, the extensive personal and equipment supports that limit feasibility for travel, and divergent communication abilities. Therefore, we undertook a descriptive case study using an asynchronous modification of an online focus group, a bulletin board focus group (BBFG). The greatest strengths of the BBFG are the appeal of this methodology for young adults and the multi day focus group becomes both a community and an intervention. An important limitation of this method was participant follow through on discussion threads. This BBFG provided rich and varied types of data, and very positive participant experiences. Keywords: Bulletin Board Focus Group, Case Studies, Complexity, Disability/Disabled Persons, End-Of-Life Issues, Focus Groups, Illness and Disease, Young Adults
Cook K; Jack S; Siden H; Thabane L; Browne G
The Qualitative Report
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://nsuworks.nova.edu/tqr/vol19/iss39/1/" target="_blank" rel="noreferrer">tqr/vol19/iss39/1</a>
Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences
Collaboration; Child; Female; Male; Palliative Care; Denmark; Adolescence; Content Analysis; Qualitative Studies; Home Health Care; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Pediatric Care; Semi-Structured Interview; In Infancy and Childhood; Cancer Patients; Case Studies; Oncologic Care
Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.
Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M
Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener">10.1177/02692163221135350</a>