Exploring the Use of Arts-Based Interventions and Research Methods in Families of Seriously Ill Children: A Scoping Review
bereavement; family nursing; nursing practice; pediatric nursing; article; child; Child; family health; female; human; human experiment; male; nurse; Only Child; wellbeing
Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families' experiences. Our purpose was to examine the nature of arts-based interventions and research methods used with, and the experiences of families of children facing life-limiting and life-threatening illnesses, and those families who are bereaved. Academic peer-reviewed sources published between January 1999 and May 2022 were retrieved via four databases using key search terms. Twenty-five articles were analyzed, resulting in three multifaceted categories including Social, Emotional, and Family Health. Critical strengths and limitations were also identified. Art making has been incorporated into interventions and research studies due to its benefits for family well-being. Understanding the potential of art making can inspire nurses to implement such activities to enhance family nursing practice and research.
Bally JMG; Burles M; Spurr S; McGrath J
Journal of Family Nursing
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/10.1177/10748407231165119" target="_blank" rel="noreferrer noopener">10.1177/10748407231165119</a>
The Effect of FAmily-CEntered (FACE(®)) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families
pediatrics; advance care planning; family intervention; Hiv
Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE(®)) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE(®) (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE(®) intervention than control (β = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (β = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (β = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE(®) pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.
Lin CJ; Cheng YI; Garvie PA; D'Angelo LJ; Wang J; Lyon ME
Journal of Family Nursing
2020
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/10.1177/1074840720964093" target="_blank" rel="noreferrer noopener">10.1177/1074840720964093</a>
The Evolutionary Nature of Parent-Provider Relationships at Child's End of Life With Cancer
grief; cancer; end-of-life care; parents; bereavement; family nursing; child care; professional family relations
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their bereavement. Therefore, the purpose of this study was to understand parental experiences about their relationships with providers at their child's end of life with cancer and describe the manifestations of their grief. In this hermeneutic study, data were collected through interviews with bereaved parents and observation of families and health care providers in the hospital setting. Parents variously experienced complex relationships characterized by support, collaboration, trust, silence, deterioration, hierarchy, and tolerating, which were interchangeable and varied overtime, as new meanings were incorporated into their experiences. Through better understanding of the nature of these relationships, nurses can provide leadership in research and practice for identifying consequences of their care.
Dos Santos M R; Szylit R; Deatrick J A; Mooney-Doyle K; Wiegand D L
Journal of family nursing
2020
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/10.1177/1074840720938314" target="_blank" rel="noreferrer noopener">10.1177/1074840720938314</a>
How Grandparents Experience the Death of a Grandchild With a Life-Limiting Condition
bereavement; palliative care; hospice care; grief; child; family nursing; grandparents
Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiting conditions, in particular. Interpretative phenomenological analysis was used as the methodological framework for the study. Seven bereaved grandparents participated in this study. Semistructured, individual, face-to-face interviews were conducted. A number of contextual factors affected the experience of bereaved grandparents, including intergenerational bonds and perceived changes in role following the death of their grandchild. The primary motivation of grandparents stemmed from their role as a parent, not a grandparent. The breadth of pain experienced by grandparents was complicated by the multigenerational positions grandparents occupy within the family. Transition from before to after the death of a grandchild exacerbated the experience of pain. These findings about the unique footprint of grandparent grief suggest the development of family nursing practice to better understand and support grandparents during the illness of a grandchild, in addition to bereavement support.
Tatterton MJ; Walshe C
Journal of family nursing
2018
<a href="http://doi.org/10.1177/1074840718816808" target="_blank" rel="noreferrer noopener">10.1177/1074840718816808</a>
Gradually Disengaging: Parent-Health care Provider Relationships After a Child's Death in the Pediatric Intensive Care Unit
When a child dies in the intensive care unit, many bereaved parents want relationships with their child's health care staff to continue in the form of follow-up care. However, the nature of these relationships and how they change across the parents' bereavement journey is currently unknown. This article explores early and ongoing relationships between parents and health care staff when a child dies in intensive care. Constructivist grounded theory methods were used to recruit 26 bereaved parents from four Australian pediatric intensive care units into the study. Data were collected via audio-recorded, semistructured interviews and analyzed using the constant comparative methods and theoretical memoing. Findings show that these relationships focus on Gradually disengaging, commonly moving through three phases after the child dies: Saying goodbye, Going home, and Seeking supports. These findings provide guidance to health care staff on what families need as they leave the intensive care unit and move through bereavement.
Butler AE; Hall H; Copnell B
Journal of Family Nursing
2018
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/10.1177/1074840718783470" target="_blank" rel="noreferrer noopener">10.1177/1074840718783470</a>
The search for social safety and comfort in families raising children with complex chronic conditions
Child; Female; Humans; Male; United States; Adult; Interpersonal Relations; Social Adjustment; Family Nursing; Preschool; Adaptation; Psychological; Family/psychology; Parent caregivers; Chronic Disease/nursing/psychology; Developmental Disabilities/nursing/psychology; Leisure Activities
Social consequences of raising children who were medically fragile and developmentally delayed (MF/DD) were explored in an ethnographic study of 20 families with school-age children. The overarching theme was the families' search for safety and comfort in social situations. Major categories comprising this theme included the need to anticipate and plan for the child's care; overcoming environmental, child-related, and attitudinal barriers; and finding social activities that were comfortable for all members of the family. When this search was successful, families could relax, and all members could participate in a variety of social encounters and activities; but when safety and comfort could not be achieved, families were likely to limit social activities or split the family so that the child who was MF/DD could be cared for while other family members participated in social events.
2005
Rehm RS; Bradley JF
Journal Of Family Nursing
2005
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).
Journal Article
<a href="http://doi.org/10.1177/1074840704272956" target="_blank" rel="noreferrer">10.1177/1074840704272956</a>
Building a new world: habits and practices of healing following the death of a child
Child; Female; Humans; Male; Adult; Parent-Child Relations; Attitude to Death; Ceremonial Behavior; Family Relations; Qualitative Research; Spirituality; Burial; Preschool; Adaptation; Psychological; bereavement; Interviews; infant; SSHRC CURA; Habits
The goal of this interpretive phenomenological study is to describe and understand significant habits and practices developed by families bereaved from the sudden and unexpected loss of their children. Data were primarily collected through the interviewing of 15 family members in seven families. At least four interviews were conducted with each family. Family members were interviewed both together and separately. The analysis of the data illuminated the development of significant and meaningful family practices. These practices acknowledged the death of the children, integrated their loss into the everyday lives of these families, allowed for continuing connection, and were of utter importance as they contributed to family healing.
2006
Gudmundsdottir M; Chesla CA
Journal Of Family Nursing
2006
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).
Journal Article
<a href="http://doi.org/10.1177/1074840706287275" target="_blank" rel="noreferrer">10.1177/1074840706287275</a>
Telehealth: connecting with families to promote health and healing
Family; Telemedicine; home care services
Telehealth is defined as the provision of health care via telecommunications wherever individuals are geographically separated. In this literature review, we explore the role of telehealth in family care. Telehealth has not been fully examined for its potential to support health and healing in families. Moreover, technological innovation, such as telehealth, presents an opportunity to question concepts and approaches to family care.
2001
Siden H; Young L; Tredwell S; Starr E
Journal Of Family Nursing
2001
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).
Journal Article
<a href="http://doi.org/10.1177/107484070100700401" target="_blank" rel="noreferrer">10.1177/107484070100700401</a>