Feasibility of a child life specialist program for oncology patients with minor children at home: Qualitative analysis.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 30-30
Author(s):  
David Lysecki ◽  
Daryl Bainbridge ◽  
Tracy Akitt ◽  
Georgia Georgiou ◽  
Ralph M. Meyer ◽  
...  
Keyword(s):  
Focus Group ◽  
Psychosocial Support ◽  
Value Added ◽  
Child Life ◽  
Child Life Specialist ◽  
360 Degree Feedback ◽  
Centered Care ◽  
Support Team ◽  
Minor Children ◽  
Family Centered

30 Background: Up to 24% of adult oncology patients have minor children at home, who may experience negative short- and long-term health outcomes as a result. Typical support networks often fail to meet the needs of these families. To address this, an innovative Child Life Specialist (CLS) program was embedded within the psychosocial support team at a tertiary oncology center. The program provided direct consultation to families (adults and children) including guidance on talking with children, provision of resources, diagnostic teaching, end-of-life support, grief support, and emotional expression. Methods: To understand the feasibility of this program (including acceptability, demand, implementation, practicality, adaptation, integration, expansion, and preliminary measures of impact), we collected 360-degree feedback from impacted stakeholders. At least two months following an encounter with the CLS, families were offered participation in a semi-structured interview (via purposive selection to capture multiple perspectives, including patients, non-patient parents/family members, and children aged 10-17). At the end of the pilot, two focus groups were held consisting of clinicians who engaged with the program. A thematic analysis was completed from the interview/focus group discussion transcripts. Results: 15 interviews were completed with adults (ten with patients, five with non-patient parents/other family members). Emergent themes were: Establishing comfort, Allaying parent apprehension, Coaching and reassurance, Value added, Integration, Impact of Covid-19, and Areas for development. In three interviews with children, the emergent themes were: Building rapport, Developmentally appropriate approaches, Understanding and managing emotions, Improving communication, and Areas for development. The first focus group included the CLS and two clinical leads of the psychosocial support team. Emergent themes from this discussion were: Promotion of the program, Accessibility, Role of social work, Impact of Covid-19, and Adopting a virtual approach. The second focus group consisted of three inpatient social workers, and the emergent themes were: Expertise, Accessibility, Allaying parent apprehension, Value added, Impact of Covid-19, and Areas for development. Synthesis of data identified five overall key themes: Awareness, Integration, Value added, Family-centered care, and Impact of Covid-19. Conclusions: This study conducted qualitative analysis of 360-degree feedback on the CLS pilot program. The analysis demonstrated that program was felt to add value, integrate well with current systems, and represent high-quality, family-centered care. This pilot occurred during the Covid-19 pandemic, the impacts of which were represented in this study.

Neonatal Continuing Education That Powers Family-Centered Care Like Never Before

2021 ◽  
Vol 40 (1) ◽  
pp. 46-49
Author(s):  
Deborah Discenza
Keyword(s):  
Continuing Education ◽  
Psychosocial Support ◽  
Family Care ◽  
Care Program ◽  
Daily Basis ◽  
Family Centered Care ◽  
Long Term Outcomes ◽  
Centered Care ◽  
Family Centered

Families in the NICU struggle on a daily basis and they are at high risk for mental health challenges ongoing due to the trauma inflicted at birth and during the NICU and beyond. Starting parents down a path of psychosocial support is key at bedside and can have a major impact on that infant and family's long-term outcomes. This is the most powerful family-centered care program in existence thanks to the collaboration of three well-respected organizations—National Perinatal Association, NICU Parent Network, and Patient + Family Care.

Hospital leadership perspectives on the contributions of Ronald McDonald Houses

2015 ◽  
Vol 29 (3) ◽  
pp. 381-392 ◽  
Author(s):  
Paula M Lantz ◽  
Nicole Rubin ◽  
D Richard Mauery
Keyword(s):  
Value Added ◽  
International Study ◽  
Chief Executive ◽  
Family Centered Care ◽  
Family Accommodation ◽  
Content Type ◽  
Centered Care ◽  
Hospital Leaders ◽  
Family Centered ◽  
Seriously Ill

Purpose – The purpose of this paper is to describe an international survey of hospital executives and administrators’ perspectives on the contributions of their affiliation with a Ronald McDonald House (RMH) as an example of accommodation in family-centered care to the hospital’s mission, operations and patient experience. Design/methodology/approach – RMHs worldwide provided the names and e-mail addresses of the people holding key leadership positions in their main hospital partner, who in turn were invited to complete an internet-based survey (530 participants; response rate of 54.5 percent). Findings – Hospital leaders reported very positive opinions about the contributions of their RMHs affiliation to their ability to serve seriously ill children and their families. This included such important outcomes as increasing family integrity and family participation in care decisions; and decreasing psychosocial stress and hospital social work resource burdens associated with lodging, food, transportation and sibling support. Hospital chief executive offices (CEOs) and medical directors reported very strong and positive opinions regarding the value-added of their RMHs affiliation in many areas, including enhanced marketing of hospital specialty services and reduced length of stay. Research limitations/implications – Survey response bias is a limitation, although the results are still useful in terms of identifying multiple ways in which RMHs are perceived as contributing to hospitals’ operations and provision of family-centered care. Practical implications – Overall, the results suggest that, internationally, hospital leaders believe that RMHs play a key and valued role in their provision of family-centered care to seriously ill children and their families. Social implications – Family accommodation is more than the simple provision of lodging and plays an integral role how hospitals approach family-centered care. Originality/value – This international study contributes to the general literature on the role of family accommodation in hospitals’ provision of family-centered care and the specific and very sparse literature on RMHs in particular.

scholarly journals Development and implementation of a novel child life protocol to enhance psychosocial support for pediatric awake craniotomies: technical note

2020 ◽  
Vol 48 (2) ◽  
pp. E5
Author(s):  
Michael M. McDowell ◽  
Daniela Ortega Peraza ◽  
Taylor J. Abel
Keyword(s):  
Prospective Studies ◽  
Positive Reinforcement ◽  
Psychosocial Support ◽  
Patient Experiences ◽  
Technical Note ◽  
Awake Craniotomy ◽  
Child Life ◽  
Child Life Specialist ◽  
Patient Tolerance ◽  
Eloquent Cortex

Awake craniotomies are a crucial tool for identifying eloquent cortex, but significant limitations frequently related to patient tolerance have limited their applicability in pediatric cases. The authors describe a comprehensive, longitudinal protocol developed in collaboration with a certified child life specialist (CCLS) in order to enhance patient experiences and develop resiliency related to the intraoperative portion of cases. This protocol includes preoperative conditioning, intraoperative support, and postoperative positive reinforcement and debriefing. A unique coping plan is developed for each prospective patient. With appropriate support, awake craniotomy may be applicable in a wider array of preadolescent and adolescent patients than has previously been possible. Future prospective studies are needed to validate this approach.

Feasibility of a child life specialist program for oncology patients with minor children at home: Demand and implementation.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 28-28
Author(s):  
David Lysecki ◽  
Daryl Bainbridge ◽  
Tracy Akitt ◽  
Georgia Georgiou ◽  
Ralph M. Meyer ◽  
...  
Keyword(s):  
End Of Life ◽  
Life Support ◽  
Direct Interaction ◽  
Child Life ◽  
Child Life Specialist ◽  
Oncology Patients ◽  
Phone Calls ◽  
Common Diagnosis ◽  
Minor Children ◽  
At Home

28 Background: Up to 24% of adult oncology patients have minor children at home. Children may experience emotional problems, somatic complaints, social isolation, depression, and post-traumatic stress as a result. Typical support networks often fail to meet the needs of these families. To address this gap, an innovative Child Life Specialist (CLS) program for patients with minor children at home was offered at a tertiary oncology center. Methods: To understand the feasibility of this program, we examined the demand for and implementation of the CLS program over its initial 10 months. Demand was characterized using administrative data (referred patient/family demographics, referral details, and disease/treatment characteristics). Implementation was described through encounter data (audience, type of visit, interventions provided, time for preparation, and time of direct interaction for each encounter). Results: The program received 100 referrals, 93 of whom accessed the program. Patients were most often female (66%) with a median age of 45 years (range: 19 to 72). 81% were parents of minor children, 10% grandparents, and 9% other. Families predominantly had multiple children (98%), most commonly school-aged (ages 5-9, 39%; 10-14, 37%). 53% of families had two birth parents co-parenting in the same household; the remainder had alternate parent/living scenarios. Most referrals came from social work (57%). Median time from diagnosis to referral was 79 days (range: 9d-6.5y). Breast cancer (26%) was the most common diagnosis, followed by gastrointestinal (19%) and hematologic (16%). Cancer phase at referral was defined as at new diagnosis (within 30d, 18%), undergoing treatment with curative intent (20%), undergoing treatment with palliative intent (39%), at end of life (within 30d, 16%) and after death/bereavement (5%). 1 patient (1%) did not have cancer. The CLS recorded 257 unique encounters. 55% of encounters included patients, 40% non-patient parents, 21% children, and 21% others. 75% were individual encounters, while 25% were group encounters. 95% of encounters that included children also included an adult. Phone calls were the most frequent encounter type (43%), but hospital visits consumed the largest proportion of recorded CLS time (38%). Mean encounter time (all visit types) included 20min for preparation and 51min of direct interaction. CLS interventions included: guidance on talking with children (67% of encounters), providing resources (37%), diagnostic teaching (21%), end-of-life support (18%), discussing change in status (10%), grief (8%), and emotional expression (4%). Conclusions: This study characterized the demand for this program and described its implementation over the pilot period. This period occurred during the Covid-19 pandemic, which dramatically altered healthcare and family visitation, likely influencing the results of this study.

scholarly journals Nurses' Perception of Family-Centered Care in Neonatal Intensive Care Units

2019 ◽  
Vol 09 (01) ◽  
pp. 016-020
Author(s):  
Haydeh Heidari ◽  
Marjan Mardani-Hamooleh
Keyword(s):  
Intensive Care ◽  
Data Analysis ◽  
Intensive Care Units ◽  
Neonatal Intensive Care ◽  
Neonatal Intensive Care Units ◽  
Family Centered Care ◽  
Face To Face ◽  
Centered Care ◽  
Conventional Content Analysis ◽  
Family Centered

AbstractFamily-centered care (FCC) is one of the important elements of care in neonatal intensive care units (NICUs). The aim of this study was to understand the nurses' perception of FCC in NICUs. This qualitative study was performed using conventional content analysis. Participants in this study included 18 nurses who were selected by a purposeful method. Semistructured, in-depth and face-to-face interviews were conducted with the participants. All interviews were written down, reviewed, and analyzed. Two categories were identified after the data analysis: (1) prerequisite for providing FCC and (2) parents' participation. Prerequisite for providing FCC consisted of two subcategories namely suitable facilities and adequate personnel. Parents' participation included subcategories of parents: neonate's attachment and parents' training. Nurses' perception of FCC in NICUs can facilitate an appropriate condition for the participation of family members in the care of neonates.

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