Living through liminality? Situating the transitional experience of parents of children with mucopolysaccharidoses
children; liminality; mucopolysaccharidoses; parents; rare diseases; transition
BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in subsequent years. The severity of the condition varies according to the specific type, ranging from very mild symptoms to, in most cases, complex healthcare needs, including mental and physical disabilities. AIMS: This study aimed to elucidate the meanings of the transition experience of being a parent of a child with MPS. Van Gennep's three-stage rite of passage theory and Turner's theory of liminality were utilised to understand these families' transition experiences are learning to live with their child's ongoing progressive illness trajectory. METHOD(S): A qualitative design utilising hermeneutic phenomenology was used. Longitudinal qualitative in-depth interviews were carried out with eight parents at a three-time point over 17-months period. RESULT(S): This study provided an interpretation of the lived experience of parents of children and young adults with MPS. As such, it embraces a liminal experience of living with a rare life-limiting illness and the unique passage to becoming a parent of a child with MPS. Parents reported their experience of transition from being the parent of a normal healthy child to be the parent of a child with MPS. They described their transition experience as multi-faceted and complex, neither linear nor time-bound, but rather cyclical. CONCLUSION(S): The rites of passage conceptual framework helped to identify specific and significant unmet supportive and social care needs of these families and their children. This information will enhance the development of a substantial support system to meet the family's emotional, psychological and social needs during the illness transitions from diagnosis and throughout their illness journey. Copyright © 2021 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.
Somanadhan S; Brinkley A; Larkin PJ
Scandinavian Journal of Caring Sciences
2021
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/10.1111/scs.13026" target="_blank" rel="noreferrer noopener">10.1111/scs.13026</a>
The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol
adolescents; transition; young adults; case study; complex care; qualitative research; transfer
Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process. Methods Informed by the Life Course Health Development framework, this study will use a qualitative explanatory case study design. The sample will include 10–15 families (1–3 participants per family) of youth with medical complexity (aged 16–30 years) who have lived experience with the youth’s transition to adulthood and transfer to adult services. Data sources will include semi-structured interviews and resources participants identified as supporting the youth’s transition. Reflexive thematic analysis will be used to analyze interview data; directed content analysis will be used for documentary evidence. Discussion While previous studies report that families experience significant challenges and emotional toll during transition, it is not known how they adapt to these challenges. Through this study, we will identify what is currently working for families, what they continue to struggle with, and what their most urgent needs are in relation to transition. The anticipated findings will inform both practice solutions and policy changes to address the needs of these families during transition. This study will contribute to the evidence base needed to develop novel solutions and advance policies that will meaningfully support successful transitions for families of youth with medical complexity.
Li L; Carter N; Ploeg J; Gorter JW; Strachan PH
Journal of Transition Medicine
2021
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/10.1515/jtm-2021-0005" target="_blank" rel="noreferrer noopener">10.1515/jtm-2021-0005</a>
Living through liminality? Situating the transitional experience of parents of children with mucopolysaccharidoses
children; liminality; mucopolysaccharidoses; parents; rare diseases; transition
BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in subsequent years. The severity of the condition varies according to the specific type, ranging from very mild symptoms to, in most cases, complex healthcare needs, including mental and physical disabilities. AIMS: This study aimed to elucidate the meanings of the transition experience of being a parent of a child with MPS. Van Gennep's three-stage rite of passage theory and Turner's theory of liminality were utilised to understand these families' transition experiences are learning to live with their child's ongoing progressive illness trajectory. METHOD(S): A qualitative design utilising hermeneutic phenomenology was used. Longitudinal qualitative in-depth interviews were carried out with eight parents at a three-time point over 17-months period. RESULT(S): This study provided an interpretation of the lived experience of parents of children and young adults with MPS. As such, it embraces a liminal experience of living with a rare life-limiting illness and the unique passage to becoming a parent of a child with MPS. Parents reported their experience of transition from being the parent of a normal healthy child to be the parent of a child with MPS. They described their transition experience as multi-faceted and complex, neither linear nor time-bound, but rather cyclical. CONCLUSION(S): The rites of passage conceptual framework helped to identify specific and significant unmet supportive and social care needs of these families and their children. This information will enhance the development of a substantial support system to meet the family's emotional, psychological and social needs during the illness transitions from diagnosis and throughout their illness journey. Copyright © 2021 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.
Somanadhan S; Brinkley A; Larkin PJ
Scandinavian journal of caring sciences.
2021
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/10.1111/scs.13026" target="_blank" rel="noreferrer noopener">10.1111/scs.13026</a>
Evaluation of a pilot service to help young people with life-limiting conditions transition from children's palliative care services.
Day hospice; Palliative; Respite care; Transition; Young people
BACKGROUND: When young people with life-limiting diagnoses become too old for children's hospice services, they often experience challenges transitioning into adult services. A two-year pilot project was developed to try to aid transitioning, which involved a day service with occasional overnight trips. AIM: To evaluate the pilot project. METHOD: Three focus groups made up of key stakeholders (young people, their parents and staff) were set up and analysed using an adopted thematic analysis framework. RESULTS: The participants consisted of three young people, seven parents and six staff members. Participants described the transition period as a difficult time for both young people and their families, with a perceived lack of adult services available. All groups agreed that the pilot had a positive impact on young people and their families and all were keen for the project to continue. CONCLUSION: This pilot models a service that could be adopted by other organisations in order to aid the transition between child and adult hospice services, with further potential for application in mental health and special needs services.
Hutcheson S; Maguire H; White C
International journal of palliative 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/10.12968/ijpn.2018.24.7.322" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2018.24.7.322</a>
Transitions to and from the Acute Inpatient Care Setting for Children with Life-Threatening Illness
Hospitalization; Children; transition; Life Threatening illness
Children with life-threatening illnesses (LTIs) are hospitalized more often and spend more days in the hospital than children without LTIs. Hospitalizations may be associated with changes in health status of children with LTIs and thus alter their care needs significantly. Transitional care is particularly relevant for this population. Pediatric palliative care clinicians and teams are well-positioned to improve transitional care of children with LTIs by facilitating communication between clinicians and educating clinicians about issues related to children with LTIs.
2014-08
Nageswaran S; Radulovic A; Anania A
Pediatric Clinics Of North America
2014
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.04.008" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.008</a>
Supporting Adolescents and Young Adults With Cancer Through Transitions: Position Statement From the Canadian Task Force on Adolescents and Young Adults With Cancer
transition
OBJECTIVE:: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide recommendations on how to help the AYA regain a sense of control over their lives as they adjust to these transition experiences. METHODS:: We reviewed and synthesized a heterogeneous sample of studies and recommendations, ranging from well-designed case-controlled investigations to opinions of respected authorities based on clinical experience, and reports of expert committees. RESULTS:: We describe the key factors that have an impact on different transitions during the cancer journey, and the need for developmentally appropriate services for AYA with cancer that consider both the system issues and individual transition issues. Our recommendations are not intended to be prescriptive, but they are broad enough to be applicable in different types of settings (eg, family doctor, cancer center, specialty service) and systems beyond health care (eg, school system, social system). CONCLUSIONS:: The Task Force urges health care providers, parents, and AYA with cancer to work together in planning and implementing strategies that will enable individuals to navigate the transitions they encounter along the cancer journey successfully, and strive for meaningful participation in life situations, achieving their potential as fully functional members of society.
2014-01
Wilkins KL; D'Agostino NM; Penney AM; Barr RD; Nathan PC
Journal Of Pediatric Hematology/oncology
2014
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Journal Article
<a href="http://doi.org/10.1097/MPH.0000000000000103" target="_blank" rel="noreferrer">10.1097/MPH.0000000000000103</a>
Examining factors associated with self-management skills in teenage survivors of cancer
transition; Childhood cancer survivor; Self-management skills
BACKGROUND: Monitoring long-term health of teenage cancer survivors is dependent on successful transition from pediatric to adult long-term follow-up (LTFU) care. This study identified factors associated with self-management skills (SMSs), an important correlate of successful transition. METHODS: Data were collected from a cross-sectional survey conducted at three Canadian hospitals between July 2011 and January 2012. The sample included 184 childhood cancer survivors aged between 15 and 19 years. Independent factors included demographic- and illness-related factors. The outcome of interest was SMSs, measured using the SMSs scale, with higher scores indicating more SMSs. RESULTS: More SMSs were associated positively with older age (β = 1.2, 95 % confidence interval (CI) = 0.1 to 2.4), being female (β = 4.6, 95 % CI = 1.9 to 7.4), and having a non-married parent (β = 5.2, 95 % CI = 0.04 to 10.4). There was a negative association between SMSs and having had a central nervous system tumor (CNS) compared to having leukemia (β = -7.9, 95 % CI = -13.5 to -2.2). CONCLUSIONS: Younger, male, and CNS tumor survivors lack SMSs. Future research is needed to explore the extent and nature of associations between SMSs and parents' marital status. IMPLICATIONS FOR CANCER SURVIVORS: Younger, male, and CNS tumor survivors should be targeted for interventions in order to ensure that adequate SMSs are attained before completion of transition.
2016-08
Syed IA; Nathan PC; Barr R; Rosenberg-Yunger Zahava RS; D'Agostino NM; Klassen AF
Journal Of Cancer Survivorship: Research And Practice
2016
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Journal Article
<a href="http://doi.org/10.1007/s11764-016-0514-y" target="_blank" rel="noreferrer">10.1007/s11764-016-0514-y</a>
Transition to adulthood as a parent-youth project: Governance transfer, career promotion, and relational processes.
Parents; Adolescent Transitions; transition; Youth; ADULTHOOD; Conversation; Developmental Stages; Dyads; Life Changes; Parent-Child Relations; project
2008
Young RA; Marshall SK; Domene JF; Graham M; Logan C; Zaidman-Zait A; Mart Amy; Lee CM
Journal Of Counseling Psychology
2008
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Journal Article
Stories of life transition: subjective well-being and ego development in parents of children with down syndrome
Growth; narrative; Down Syndrome; Parent caregiving; Subjective Well-Being; transition; Well Being; Well Being
Eighty-seven parents of children with Down Syndrome (DS; 63 women, 24 men) wrote narratives about finding out that their child had DS and completed questionnaire measures of subjective well-being (SWB) and stress-related growth and completed the Sentence Completion Test as a measure of ego development. Forty-two of these individuals participated in a follow-up 2 years later. Foreshadowing and happy endings in the stories were related to heightened SWB at both time periods. Evidence of accommodative change—actively experiencing a paradigmatic shift—was related to stress-related growth and ego development at both time periods. A high sense of closure and accommodation in the stories was associated with the highest levels of stress-related growth. Implications for research on well-being and personal growth are discussed.
2000
King LA; Scollon CK; Ramsey C; Williams T
Journal Of Research In Personality
2000
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/10.1006/jrpe.2000.2285" target="_blank" rel="noreferrer">10.1006/jrpe.2000.2285</a>
Looking back to move forward: Reflections and lessons learned about transitions to adulthood for youth with disabilities.
Adolescence; Child Development; Disability; Health Services Research; Transition
BACKGROUND: Transition to adulthood is a significant development process experienced by all youth. Since the mid 1990s, researchers at the CanChild Centre for Childhood Disability Research have been studying this process to assist transitioning youth with disabilities and their families. The objective of this narrative review is to reflect on the work conducted by CanChild researchers, in collaboration with stakeholders, about transitions to adulthood for youth and young adults with disabilities since the publication of the best practice guidelines in 2009. METHODS: A narrative review was undertaken through a reflective approach to critically review and summarize all the transition studies completed at CanChild since 2009. The following data were systematically extracted from articles and research reports: study (authors and year of publication), purpose, methods, sample, and lessons learned. RESULTS: Five studies were identified. An analysis of the findings revealed five key themes that represented lessons learned since the publication of the Ontario-based best practice guidelines: promoting a noncategorical and lifecourse approach to care; active collaboration among stakeholders involved in transition; capacity building through peer mentorship; greater understanding of the significance of opportunities and experiences; as well as the significance of information, education, and research. CONCLUSIONS: This is the first review to provide perspective on trends in transition research since the publication of the best practice guidelines in 2009. It is hoped that this reflection will assist in the ongoing work of researchers, service providers, policy makers, communities, and families in the area of adult transitions for youth with disabilities.
Nguyen T; Stewart D; Gorter JW
Child: Care, Health And Development
2017
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<a href="https://doi.org/10.1111/cch.12534" target="_blank" rel="noreferrer">10.1111/cch.12534</a>
End-of-life Transitions And Hospice Utilization For Adolescents: Does Having A Usual Source Of Care Matter?
Adolescent; End-of-life; Hospice; Pediatric; Transition
Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes at the end-of-life for adolescents. The purpose of this study was to determine the relationship between having a usual source of primary care on hospice utilization and end-of-life transitions among adolescents between 15-20 years with a life-limiting illness. A retrospective cohort design used 2007-2010 California Medicaid claims data (n=585). Our dependent variables were hospice utilization (i.e., hospice enrollment, hospice length of stay) and the independent variable was usual source of primary care. Multivariate regression techniques including least squares regression, multivariate logistic regression, and negative binomial regression were used in the analysis of the relationship between usual source of primary care and hospice utilization and end-of-life transitions. Ten percent of our sample utilized hospice services. Having a usual source of primary care was associated with an increase in hospice enrollment, hospice length of stay, and end-of-life transitions. Adolescents with a cancer diagnosis were more likely to enroll in hospice services. For adolescents at the end of life, having a usual source of primary care had a significant impact on hospice enrollment and length of stay. This study is among the first to demonstrate a relationship between primary care and hospice use among this vulnerable population.
Keim-Malpass J; Lindley LC
Journal Of Hospice And Palliative Nursing
2017
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DOI: 10.1097/NJH.0000000000000361
Integrating Pediatric Palliative Care Into The School And Community.
Chronic Illness; Hospice; Life-limiting; Life-threatening; Pediatric Palliative Care; Quality Of Life; School; Transition
Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with peers, including school, places of worship, sports, activities, and organizations. Partnerships between PPC professionals in health care settings and teachers, coaches, spiritual leaders, activity directors, and others, may lead to greater health and well-being. Children near the end of life or those with out-of-hospital do-not-resuscitate orders may also find palliation in their community. Cooperation between all caregivers benefit the child and family.
Davis KG
Pediatric Clinics Of North America
2016
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Pediatr Clin North Am.
Short Break And Emergency Respite Care: What Options For Young People With Life-limiting Conditions?
Adolescent; Adult; Emergency Medical Services; Focus Groups; Humans; Interviews As Topic; Respite Care; Terminally Ill; Young Adult
Life-limiting Conditions; Palliative Care; Respite Care; Short Breaks; Transition; Young People
BACKGROUND:
Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.
OBJECTIVE:
To explore alternative short break and emergency respite care options to children's hospice care.
METHODS:
A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only.
RESULTS:
There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria.
CONCLUSION:
Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.
Mitchell TK; Knighting K; O’Brien MR; Jack BA
International Journal Of Palliative Nursing
2016
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Investing In Uncertainty: Young Adults With Life-limiting Conditions Achieving Their Developmental Goals.
Disabilities; Transition; Adolescent; Policy; Perspectives; Health-care; Palliative Care; Health Care Sciences & Services; Youth
BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describes the monumental efforts required for YAs with LLCs to achieve their goals in an abbreviated life.
OBJECTIVES:
The experiences and aspirations of YAs with LLCs to achieve their goals are relatively unknown. This report focuses on their experiences of living with uncertainty and its impact on achieving developmental goals.
DESIGN:
This study is one component of a larger descriptive study using an innovative bulletin board focus group to examine life experiences of YAs with LLCs.
RESULTS:
YAs with LLCs share the aspirations and goals of all YAs. Some participants demonstrated a striking capacity to navigate system barriers and achieve their goals, whereas others "got stuck" resulting in lost opportunities. Successful personal life investments were possible if resources were made available, coordinated, navigable, and responsive to new and special requests. Transformative changes to health, social care, and community services are necessary to support their YA ambitions.
CONCLUSIONS:
This study gave voice to those who were previously unheard and demonstrates the monumental hurdles YAs with LLCs face to achieve their goals. A palliative approach to care can mitigate unnecessary hardships and support their goals.
Cook KA; Jack SM; Siden H; Thabane L; Browne G
Journal Of Palliative Medicine
2016
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).