The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care
pediatric; burnout; resilience; pediatric palliative care; Covid-19; SARS-CoV-2; global
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of healthcare systems throughout the world. Although the value of life-affirming palliative care (PC) has been shown across many domains, funding and acceptance of palliative care teams have been variable: some hospital systems have free-standing, dedicated interdisciplinary teams while, in many instances, palliative care services are provided "pro bono" by individuals with a special interest in the discipline, who provide PC in addition to other responsibilities. In this article, we hope to highlight some of the observations on the early effects of the COVID-19 pandemic on the provision of PC in children.
Bustamante LM; Okhuysen-Cawley R; Downing J; Connor SR; Muckaden MA; Phillips M; Icaza A; Garzon N; Nakashima Y; Morgan K; Mauser D; Grunauer M
Children (Basel)
2022
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/10.3390/children9050642" target="_blank" rel="noreferrer noopener">10.3390/children9050642</a>
Protective and risk factors associated with psychological distress in cancer-bereaved parents: A cross-sectional study
Bereaved families; Bereavement; Childhood cancer; Grief; Mental health problems; Resilience
Purpose Research shows that knowledge about mental health status, both protective and risk factors, is limited in cancer-bereaved parents. The study aimed to investigate (1) the extent of psychological distress in bereaved parents 2–8 years after the loss of a child to cancer compared to non-bereaved parents, and (2) psychological distress in association with resilience, the extent of having coped with the grief, time since the loss, and past psychological distress in cancer-bereaved parents. Design Retrospective, cross-sectional study. Methods A Norwegian nationwide study-specific questionnaire was completed by 162 parents who had lost a child to cancer, and 77 matched non-bereaved parents. We used the Cohort Norway-Mental Health Index and Resilience Scale for Adults to measure psychological distress and resilience, respectively. The extent of having coped with grief was also measured. Results Bereaved parents experienced significantly more symptoms of psychological distress, albeit not clinical psychological distress, compared to non-bereaved parents. The bereaved parents who have coped with their grief or had higher resilience reported lower psychological distress. Positive “Perception of self” and well “Planned future” were the strongest predictors of psychological distress in both bereaved fathers and mothers. Conclusion Both fathers and mothers experience more psychological distress symptoms 2–8 years after losing a child to cancer than non-bereaved parents. The findings also highlight the need for long-term support to bereaved parents in order to help to improve their resilience and to better cope with their grief.
Rasouli O; Aarseth BM; Reinfjell T; Moksnes UK; Eilertsen MEB
European Journal of Oncology Nursing
2021
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<a href="http://doi.org/10.1016/j.ejon.2021.101929" target="_blank" rel="noreferrer noopener">10.1016/j.ejon.2021.101929</a>
Perinatal Palliative Care in the Neonatal Intensive Care Unit
Hospice and Palliative Care Nursing; Infant Newborn Diseases; Child; Female; Humans; Infant; Infant Newborn; Intensive Care Units Neonatal; Memory making; Neonatal palliative care; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Resilience
With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse requires education and training to proficiently contribute to the care planning and delivery of care and facilitate memory-making activities. The provision of perinatal palliative care may precipitate moral distress and needs to be addressed with education and resilience-fostering activities. To further perinatal palliative care effectiveness, research needs to be conducted.
Maher-Griffiths C
Critical Care Nursing Clinics of North America
2022
<a href="http://doi.org/10.1016/j.cnc.2021.11.008" target="_blank" rel="noreferrer noopener">10.1016/j.cnc.2021.11.008</a>
Exploring the Impact of the Coronavirus Pandemic on Pediatric Palliative Care Clinician Personal and Professional Well-Being: a qualitative analysis of U.S. Survey Data
Burnout; Covid-19; Pediatric; Professional; Resilience; Well-being; Work-life balance
CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on pediatric palliative care clinicians' personal and professional wellbeing. METHODS: The Palliative Assessment of Needed DEvelopments &Modifications In the Era of Coronavirus (PANDEMIC) cross-sectional online survey was posted on 7 professional listservs between May and June, 2020. We conducted a conventional content analysis of written responses to three open-ended questions regarding the lasting impact of COVID-19. RESULTS: Of 207 multidisciplinary respondents from 80 U.S. cities, 148 (71%) provided written responses to open-ended questions and 62 responses (42%) were related to personal, professional, or existential well-being. These responses were sorted into 4 major categories: personal burdens, professional burdens, personal benefits, and professional benefits. Respondents described burdens more commonly than they did benefits (67% versus 33% of comments, respectively). Personal burdens related to increased fear and uncertainty, fear of bringing the virus home, and a sense of collective grief. Professional burdens included a sense of exhaustion, a challenge with work-life balance, personal experiences with colleagues infected with the virus, and considerations of leaving healthcare altogether. Personal benefits included lessons-learned, an evolving sense of what matters, and improved work-life balance. Professional benefits included opportunities for professional development and a sense of professional purpose. CONCLUSION: Pediatric palliative care clinicians perceive a breadth of impacts from the COVID-19 pandemic. Ongoing clinician assessment is important as the pandemic continues.
Rosenberg A R; Weaver M S; Fry A; Wiener L
Journal of pain and symptom management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.09.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.09.037</a>
Resilience as a predictive factor towards a healthy adjustment to grief after the loss of a child to cancer
bereavement; grief; oncology; resilience
INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss. METHODS: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss. RESULTS: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief. CONCLUSION: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.
Vegsund H K; Reinfjell T; Moksnes U K; Wallin A E; Hjemdal O; Eilertsen M B
PLoS One
2019
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<a href="http://doi.org/10.1371/journal.pone.0214138" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0214138</a>
Evaluation of a staff well-being program in a pediatric oncology, hematology, and palliative care services group
burnout; resilience; self-care; staff well-being; vicarious trauma
Purpose: Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to improve the well-being and resilience of oncology staff, enabling them to cope with stressors and critical incidents inherent in their everyday work and to flourish. The program included education, on-site counselors, mindfulness sessions, debriefing, well-being resources, and improved engagement, support, and communication. Methods: Evaluation of the program in the first year examined program participation, staff feedback following education workshops and mindfulness sessions, staff retention rates, and the results of an annual organizational staff survey and a program outcome survey. Results: Approximately 76% of staff attended the Introduction to Well-being workshop, and 98% of responses to survey questions were positive. Staff also provided positive feedback on the other well-being workshops and sessions embedded within existing education programs. Employee Assistance Program counseling sessions had an 81% uptake, with a wide variety of presenting issues, 62% related to work. All participants in mindfulness sessions agreed that it was a valuable tool to improve clinical practice, 94% said it had an immediate positive impact on their well-being, and 70% agreed that they were applying mindfulness principles outside the sessions. Staff retention and turnover improved. Staff reported a positive effect on awareness of self-care, addressing risks to resilience, seeking support from trusted colleagues, coping with critical incidents, and the ability to interact positively with patients and families. Conclusion: The evaluation showed a positive impact on staff well-being. Although there was a wide variety of successful interventions reported in the literature, sustainability needs to be considered. Feedback on this program found that staff appreciated being listened to, valued, and supported through the strategies, and the ongoing program will continue to monitor staff needs and be responsive in building their resilience and well-being.
Slater P J; Edwards R M; Badat A A
Journal of Healthcare Leadership
2018
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<a href="http://doi.org/10.2147/jhl.s176848" target="_blank" rel="noreferrer noopener">10.2147/jhl.s176848</a>
Needs analysis and development of a staff well-being program in a pediatric oncology, hematology, and palliative care services group
burnout; resilience; self-care; staff well-being; vicarious trauma
Purpose: Around 170 multidisciplinary staff of the Oncology Services Group at Queensland Children's Hospital, Brisbane, care for children with oncology, hematology, and palliative care needs from throughout Queensland and northern New South Wales. A series of challenges impacted staff resilience and retention, and strategies were needed to improve staff well-being and enable them to flourish despite the inherent work stressors. Methods: A needs analysis was conducted using themes from Discovery Interviews with 51 staff, surveys related to "The Work Stressors Scale - Pediatric Oncology" and "The Work Rewards Scale - Pediatric Oncology" completed by 59 staff, and an organizational staff survey responded to by 51 staff. Results: The needs analysis informed the development of a customized Oncology Staff Well-being Program with a range of strategies aligned to a PERMA framework for flourishing (positive emotion, engagement, relationships, meaning, and accomplishment). Positive emotion areas included education on topics such as well-being, resilience, responding to escalating behaviors, grief and loss, and self-care. Staff attended the available mindfulness sessions, debriefing and counselors on site, developed self-care plans, and followed a well-being Facebook Group. Engagement was supported through exploring character strengths, improving communication, supporting innovation, and addressing frustrations and safety concerns. Relationships within the team were addressed through team building and social events. Meaning of the work was emphasized through sharing family updates and end of treatment celebrations. Accomplishments of staff were acknowledged in newsletters and meetings. Conclusion: The needs analysis drove a multifaceted approach to staff well-being with the development of strategies which aligned to a framework that would empower staff to flourish at work. Implementation and evaluation are ongoing and will be reported in a subsequent paper.
Slater P J; Edwards R M
Journal of Healthcare Leadership
2018
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<a href="http://doi.org/10.2147/jhl.s172665" target="_blank" rel="noreferrer noopener">10.2147/jhl.s172665</a>
Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
adaptation; Adaptation; Adolescent; Anthropology; Brain Neoplasms/*psychology; cancer; Child; children; coping; Cultural; enduring; experiences; Female; health; Humans; illness and disease; Infant; lived experience; Male; meta-ethnogrpahy; metasynthesis; Method: interpretive methods; Parents/*psychology; Preschool; Psychological; psychosocial aspects; Qualitative Research; qualitative. Geographic: Taiwan; quality of life; Quality of Life/*psychology; resilience; Resilience; resistance; survivorship; Young Adult
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time.
Beecham E; Langner R; Hargrave D; Bluebond-Langner M
Qualitative Health Research
2019
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<a href="http://doi.org/10.1177/1049732318786484" target="_blank" rel="noreferrer noopener">10.1177/1049732318786484</a>
Burnout and posttraumatic stress in paediatric critical care personnel: Prediction from resilience and coping styles
Burnout; Coping strategies; Paediatric intensive care; Posttraumatic stress; Professional stress; Resilience
INTRODUCTION: Our aims were (1) to explore the prevalence of burnout syndrome (BOS) and posttraumatic stress disorder (PTSD) in a sample of Spanish staff working in the paediatric intensive care unit (PICU) and compare these rates with a sample of general paediatric staff and (2) to explore how resilience, coping strategies, and professional and demographic variables influence BOS and PTSD. MATERIALS AND METHODS: This is a multicentre, cross-sectional study. Data were collected in the PICU and in other paediatric wards of nine hospitals. Participants consisted of 298 PICU staff members (57 physicians, 177 nurses, and 64 nursing assistants) and 189 professionals working in non-critical paediatric units (53 physicians, 104 nurses, and 32 nursing assistants). They completed the Brief Resilience Scale, the Coping Strategies Questionnaire for healthcare providers, the Maslach Burnout Inventory, and the Trauma Screening Questionnaire. RESULTS: Fifty-six percent of PICU working staff reported burnout in at least one dimension (36.20% scored over the cut-off for emotional exhaustion, 27.20% for depersonalisation, and 20.10% for low personal accomplishment), and 20.1% reported PTSD. There were no differences in burnout and PTSD scores between PICU and non-PICU staff members, either among physicians, nurses, or nursing assistants. Higher burnout and PTSD rates emerged after the death of a child and/or conflicts with patients/families or colleagues. Around 30% of the variance in BOS and PTSD is predicted by a frequent usage of the emotion-focused coping style and an infrequent usage of the problem-focused coping style. DISCUSSION AND CONCLUSIONS: Interventions to prevent and treat distress among paediatric staff members are needed and should be focused on: (i) promoting active emotional processing of traumatic events and encouraging positive thinking; (ii) developing a sense of detached concern; (iii) improving the ability to solve interpersonal conflicts, and (iv) providing adequate training in end-of-life care.
Rodriguez-Rey R; Palacios A; Alonso-Tapia J; Perez E; Alvarez E; Coca A; Mencia S; Marcos A; Mayordomo-Colunga J; Fernandez F; Gomez F; Cruz J; Ordonez O; Llorente A
Australian Critical Care
2018
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<a href="http://doi.org/10.1016/j.aucc.2018.02.003" target="_blank" rel="noreferrer noopener">10.1016/j.aucc.2018.02.003</a>
Posttraumatic growth in parents and pediatric patients
Child; Humans; Adult; Patients; Parents; Life Change Events; Spirituality; Adaptation; Psychological; Stress Disorders; Resilience; Post-Traumatic
BACKGROUND: Pediatric medical experiences are potentially traumatic but may lead to psychological growth. OBJECTIVE: The study objective was to synthesize the published literature regarding posttraumatic growth (PTG) in parents and patients with serious pediatric illness (SPI) into a conceptual model. METHODS: We systematically searched MEDLINE, CINAHL, PsychInfo, and Sociological Abstracts in December 2012 to identify articles on stress or trauma caused by medical events with PTG as an outcome, reviewing articles pertaining to the pediatric population. We additionally reviewed articles outside pediatric medicine that described a model of PTG. RESULTS: Of the 605 articles identified, 55 met inclusion criteria, 26 of which examined parents or pediatric patients. Parents and children may experience PTG following medical trauma through a combination of cognitive and affective processing of their subjective experience. Components of SPI-PTG are unclear, but may include greater appreciation of life, improved interpersonal relationships, greater personal strength, recognition of new possibilities in one's life course, spiritual or religious growth, and reconstruction of a positive body image. Individual characteristics, and the level of social support, may affect the likelihood that SPI-PTG will occur. SPI-PTG in siblings and other family members has not been well studied. CONCLUSIONS: SPI-PTG is an important but understudied and inadequately understood phenomenon affecting children with SPI and their family members. Research should focus on clarifying SPI-PTG domains, creating measurement instruments, assessing SPI-PTG across the pediatric age range and among family members, and improving our understanding of and ability to positively intervene regarding the cognitive processes of rumination, sense making, and benefit finding.
2014-02
Picoraro JA; Womer JW; Kazak AE; Feudtner C
Journal Of Palliative Medicine
2014
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Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0280" target="_blank" rel="noreferrer">10.1089/jpm.2013.0280</a>
Children's experiences of cystic fibrosis: a systematic review of qualitative studies
adolescent; Child; Humans; Young Adult; Prognosis; Health Services Needs and Demand; social support; Qualitative Research; Social Isolation; Sick Role; Social Adjustment; Cystic Fibrosis; Activities of Daily Living; Self Care; Cost of Illness; Internal-External Control; Defense Mechanisms; Disability Evaluation; Hope; Power (Psychology); quality of life; Preschool; Adaptation; Psychological; Resilience
BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children and adolescents with CF to direct care toward areas that patients regard as important. METHODS: MEDLINE, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature were searched from inception to April 2013. We used thematic synthesis to analyze the findings. RESULTS: Forty-three articles involving 729 participants aged from 4 to 21 years across 10 countries were included. We identified 6 themes: gaining resilience (accelerated maturity and taking responsibility, acceptance of prognosis, regaining control, redefining normality, social support), lifestyle restriction (limited independence, social isolation, falling behind, physical incapacity), resentment of chronic treatment (disempowerment in health management, unrelenting and exhausting therapy, inescapable illness), temporal limitations (taking risks, setting achievable goals, valuing time), emotional vulnerability (being a burden, heightened self-consciousness, financial strain, losing ground, overwhelmed by transition), and transplant expectations and uncertainty (confirmation of disease severity, consequential timeliness, hope and optimism). CONCLUSIONS: Adolescents and children with CF report a sense of vulnerability, loss of independence and opportunities, isolation, and disempowerment. This reinforces the importance of the current model of multidisciplinary patient-centered care that promotes shared decision-making, control and self-efficacy in treatment management, educational and vocational opportunities, and physical and social functioning, which can lead to optimal treatment, health, and quality of life outcomes.
2014-06
Jamieson N; Fitzgerald D; Singh-Grewal D; Hanson CS; Craig JC; Tong A
Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1542/peds.2014-0009" target="_blank" rel="noreferrer">10.1542/peds.2014-0009</a>
Psychological resilience, pain catastrophizing, and positive emotions: perspectives on comprehensive modeling of individual pain adaptation
Female; Humans; Male; Pain; Pain Measurement; Emotions; Cognition; Catastrophization; Motivation; Adaptation; Psychological; Models; Resilience
Pain is a complex construct that contributes to profound physical and psychological dysfunction, particularly in individuals coping with chronic pain. The current paper builds upon previous research, describes a balanced conceptual model that integrates aspects of both psychological vulnerability and resilience to pain, and reviews protective and exacerbating psychosocial factors to the process of adaptation to chronic pain, including pain catastrophizing, pain acceptance, and positive psychological resources predictive of enhanced pain coping. The current paper identifies future directions for research that will further enrich the understanding of pain adaptation and espouses an approach that will enhance the ecological validity of psychological pain coping models, including introduction of advanced statistical and conceptual models that integrate behavioral, cognitive, information processing, motivational and affective theories of pain.
2013-03
Sturgeon JA; Zautra AJ
Current Pain And Headache Reports
2013
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Journal Article
<a href="http://doi.org/10.1007/s11916-012-0317-4" target="_blank" rel="noreferrer">10.1007/s11916-012-0317-4</a>
Promoting resilience among parents and caregivers of children with cancer
Child; Female; Humans; Male; Young Adult; bereavement; Neoplasms; Terminal Care; Adult; Parents; Aged; Middle Aged; caregivers; Qualitative Research; Hospitals; Washington; Preschool; Psychological; Parent caregivers; Resilience; Urban
BACKGROUND: Promoting resilience is an aspect of psychosocial care that affects patient and whole-family well-being. There is little consensus about how to define or promote resilience during and after pediatric cancer. OBJECTIVES: The aims of this study were (1) to review the resilience literature in pediatric cancer settings; (2) to qualitatively ascertain caregiver-reported perceptions of resilience; and (3) to develop an integrative model of fixed and mutable factors of resilience among family members of children with cancer, with the goal of enabling better study and promotion of resilience among pediatric cancer families. METHODS: The study entailed qualitative analysis of small group interviews with eighteen bereaved parents and family members of children with cancer treated at Seattle Children's Hospital. Small-group interviews were conducted with members of each bereaved family. Participant statements were coded for thematic analysis. An integrative, comprehensive framework was then developed. RESULTS: Caregivers' personal appraisals of the cancer experience and their child's legacy shape their definitions of resilience. Described factors of resilience include baseline characteristics (i.e., inherent traits, prior expectations of cancer), processes that evolve over time (i.e., coping strategies, social support, provider interactions), and psychosocial outcomes (i.e., post-traumatic growth and lack of psychological distress). These elements were used to develop a testable model of resilience among family members of children with cancer. CONCLUSIONS: Resilience is a complex construct that may be modifiable. Once validated, the proposed framework will not only serve as a model for clinicians, but may also facilitate the development of interventions aimed at promoting resilience in family members of children with cancer.
2013-06
Rosenberg AR; Baker KS; Syrjala KL; Back AL; Wolfe J
Journal Of Palliative Medicine
2013
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Journal Article
<a href="http://doi.org/10.1089/jpm.2012.0494" target="_blank" rel="noreferrer">10.1089/jpm.2012.0494</a>
Promoting Resilience in Stress Management: A Pilot Study of a Novel Resilience-Promoting Intervention for Adolescents and Young Adults With Serious Illness
cancer; coping; psychosocial outcomes; health outcomes; adolescent young adult; AYA; Diabetes; Intervention; Resilience
Objective To examine the feasibility and format of the Promoting Resilience in Stress Management (PRISM) intervention among two groups of adolescents and young adults (AYAs) at-risk for poor outcomes: those with Type 1 diabetes (T1D) or cancer. Methods PRISM consists of two long or four short skills-based modules. English-speaking patients 12–25 years old were eligible if they had T1D for >6 months or cancer for >2 weeks. Feasibility was defined as an 80% completion rate and high satisfaction. Ongoing monitoring shaped iterative refinement of disease-specific approach. Results 12 of 15 patients with T1D (80%) completed the two-session intervention. 3 of 15 patients with cancer declined to complete the two-session version, citing prohibitive length of individual sessions. 12 (80%) completed the four-session version. Patient-reported satisfaction was high across groups. Conclusions The PRISM intervention is feasible and well-accepted by AYAs with cancer or T1D. Differences in patient populations warrant differences in approach.
2015-02
Rosenberg AR; Yi-Frazier JP; Eaton L; Wharton C; Cochrane K; Pihoker C; Baker KS; McCauley E
Journal of Pediatric Psychology
2015
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsv004" target="_blank" rel="noreferrer">10.1093/jpepsy/jsv004</a>
Crisis, trauma, and challenge: a relational resilience approach for healing, transformation, and growth
Growth; Resilience; Traumatic; coping; Crisis; Healing; Transformation; Trauma
2003
Walsh F
Smith College Studies In Social Work
2003
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Journal Article
<a href="http://doi.org/10.1080/00377310309517704" target="_blank" rel="noreferrer">10.1080/00377310309517704</a>
Spirituality, resilience, and narrative: coping with parental death
Grief; Parents; Death; Spirituality; Resilience; coping; Parental Death
1998
Angell GB; Dennis BG; Dumain LE
Families In Society
1998
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Journal Article
<a href="http://doi.org/10.1606/1044-3894.865" target="_blank" rel="noreferrer">10.1606/1044-3894.865</a>
Indicators of family resilience after the death of a child
Child; Female; Humans; infant; Male; Adult; Parent-Child Relations; Parents; Anecdotes as Topic; Middle Aged; Self Concept; Attitude to Death; social support; Social Adjustment; Survivors; Self-Help Groups; Belgium; Preschool; Adaptation; Psychological; Newborn; Grief; sibling bereavement; Resilience; Object Attachment
The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in 89 Belgian families. The results indicate that family strengths in general, and commitment to the family in particular, helped the families' adaptation after the loss. In addition, the adaptation process after the loss was aided if the family members viewed the crisis as a challenge. Both the siblings and the parents indicated that the extent to which a family experienced support from the community was directly related to family adaptation after the loss. Redefining the situation and utilizing social support from friends and family were underlined as effective family coping strategies. The findings could be used in interventions to promote family resilience, thereby affirming the reparative potential of families.
Greeff AP; Vansteenwegen A; Herbiest T
Omega
2011
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Journal Article
<a href="http://doi.org/10.2190/om.63.4.c" target="_blank" rel="noreferrer">10.2190/om.63.4.c</a>
Methods to Assess Adverse Childhood Experiences of Children and Families: Toward Approaches to Promote Child Well-being in Policy and Practice
Adverse Childhood Experiences; Child Health; Measurement; Resilience
BACKGROUND: Advances in human development sciences point to tremendous possibilities to promote healthy child development and well-being across life by proactively supporting safe, stable and nurturing family relationships (SSNRs), teaching resilience, and intervening early to promote healing the trauma and stress associated with disruptions in SSNRs. Assessing potential disruptions in SSNRs, such as adverse childhood experiences (ACEs), can contribute to assessing risk for trauma and chronic and toxic stress by asking about ACEs can help with efforts to prevent and attenuate negative impacts on child development and both child and family well-being. Many methods to assess ACEs exist but have not been compared. The National Survey of Children's Health (NSCH) now measures ACEs for children, but requires further assessment and validation. METHODS: We identified and compared methods to assess ACEs among children and families, evaluated the acceptability and validity of the new NSCH-ACEs measure, and identified implications for assessing ACEs in research and practice. RESULTS: Of 14 ACEs assessment methods identified, 5 have been used in clinical settings (vs public health assessment or research) and all but 1 require self or parent report (3 allow child report). Across methods, 6 to 20 constructs are assessed, 4 of which are common to all: parental incarceration, domestic violence, household mental illness/suicide, household alcohol or substance abuse. Common additional content includes assessing exposure to neighborhood violence, bullying, discrimination, or parental death. All methods use a numeric, cumulative risk scoring methodology. The NSCH-ACEs measure was acceptable to respondents as evidenced by few missing values and no reduction in response rate attributable to asking about children's ACEs. The 9 ACEs assessed in the NSCH co-occur, with most children with 1 ACE having additional ACEs. This measure showed efficiency and confirmatory factor analysis as well as latent class analysis supported a cumulative risk scoring method. Formative as well as reflective measurement models further support cumulative risk scoring and provide evidence of predictive validity of the NSCH-ACEs. Common effects of ACEs across household income groups confirm information distinct from economic status is provided and suggest use of population-wide versus high-risk approaches to assessing ACEs. CONCLUSIONS: Although important variations exist, available ACEs measurement methods are similar and show consistent associations with poorer health outcomes in absence of protective factors and resilience. All methods reviewed appear to coincide with broader goals to facilitate health education, promote health and, where needed, to mitigate the trauma, chronic stress, and behavioral and emotional sequelae that can arise with exposure to ACEs. Assessing ACEs appears acceptable to individuals and families when conducted in population-based and clinical research contexts. Although research to date and neurobiological findings compel early identification and health education about ACEs in clinical settings, further research to guide use in pediatric practice is required, especially as it relates to distinguishing ACEs assessment from identifying current family psychosocial risks and child abuse. The reflective as well as formative psychometric analyses conducted in this study confirm use of cumulative risk scoring for the NSCH-ACEs measure. Even if children have not been exposed to ACEs, assessing ACEs has value as an educational tool for engaging and educating families and children about the importance of SSNRs and how to recognize and manage stress and learn resilience.
Bethell CD; Carle A; Hudziak J; Gombojav N; Powers K; Wade R; Braveman P
Academic Pediatrics
2017
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10.1016/j.acap.2017.04.161