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1.
J Affect Disord ; 351: 746-754, 2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38290589

RESUMEN

BACKGROUND: Prior studies on Prolonged Grief Disorder (PGD) primarily employed classical approaches to link bereaved individuals' characteristics with PGD symptom levels. This study utilized machine learning to identify key factors influencing PGD symptoms during the COVID-19 pandemic. METHODS: We analyzed data from 479 participants through an online survey, employing classical data exploration, predictive machine learning, and SHapley Additive exPlanations (SHAP) to determine key factors influencing PGD symptoms measured with the Traumatic Grief Inventory - Self Report (TGI-SR) from 19 variables, comparing five predictive models. RESULTS: The classical approach identified eight variables associated with a possible PGD (TGI-SR score ≥ 59): unexpected causes of death, living alone, seeking professional support, taking anxiety and/or depression medications, using more grief services (telephone or online supports) and more confrontation-oriented coping strategies, and higher levels of depression and anxiety. Using machine learning techniques, the CatBoost algorithm provided the best predictive model of the TGI-SR score (r2 = 0.6479). The three variables influencing the most the level of PGD symptoms were anxiety, and levels of avoidance and confrontation coping strategies used. CONCLUSIONS: This pioneering approach within the field of grief research enabled us to leverage the extensive dataset collected during the pandemic, facilitating a deeper comprehension of the predominant factors influencing the grieving process for individuals who experienced loss during this period. LIMITATIONS: This study acknowledges self-selection bias, limited sample diversity, and suggests further research is needed to fully understand the predictors of PGD symptoms.


Asunto(s)
Aflicción , COVID-19 , Trastornos por Estrés Postraumático , Humanos , Pandemias , Trastorno de Duelo Prolongado , Pesar , Inteligencia Artificial , Trastornos por Estrés Postraumático/epidemiología
2.
Illn Crises Loss ; 31(3): 467-487, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-37323654

RESUMEN

On July 6, 2013, a train with 72 crude oil tank cars derailed in the heart of Lac-Mégantic, a small municipality of 6,000 inhabitants located in Québec (Canada). This tragedy killed 47 people. Technological disasters are rarely studied in bereavement research, and train derailments even less. The goal of this article is to increase our understanding of the bereavement consequences of technological disasters. Specifically, we aim to identify the factors that lead to the experience complicated grief and distinguish from the protective factors. A representative population-based survey was conducted among 268 bereaved people, three and a half years after the train accident. Of these, 71 people (26.5%) experienced complicated grief. People with complicated grief (CG) differ significantly from those without CG in terms of psychological health, perception of physical health, alcohol use and medication, as well as social and professional relationships. Hierarchical logistic regression analysis identified four predictive factors for CG: level of exposure to the disaster, having a negative perception of the event, as well as having a paid job and low-income increase the risk of CG. The importance of having health and social practitioners pay attention to these factors of CG are discussed along with future directions for research.

3.
Death Stud ; 47(4): 430-439, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-35686539

RESUMEN

The Traumatic Grief Inventory Self-Report (TGI-SR), which aims to assess both Persistent Complex Bereavement Disorder and Prolonged Grief Disorder, has been validated in several languages. This study sought to validate the French-Canadian version. We conducted an online survey exploring the impact of the COVID-19 pandemic on grief. With data from 728 participants, the scale demonstrated high internal consistency, correlated significantly with three other scales known to measure similar concepts, and distinguished between groups known to be different. This study supports the use of the TGI-SR French-Canadian version by clinicians and researchers to assess complications of grief.


Asunto(s)
Aflicción , COVID-19 , Humanos , Autoinforme , Trastorno de Duelo Prolongado , Pandemias , Canadá , Pesar , Lenguaje
4.
Soc Work Health Care ; 61(4): 218-242, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35924348

RESUMEN

The COVID-19 pandemic has profoundly affected the world. In Canada, the impact has been worrisome. Canada is a large, sparsely populated country with a system of universal health care that is decided nationally and enacted by each province and territory. There are variations in health care, as well as in the provision of social work, throughout the country. The aim of this survey is to examine the impact of the COVID-19 pandemic on social workers employed in health care. Participants were recruited for an online survey via social media, professional associations, and social work education programs. Three hundred and seventy-six social workers participated. Analyses were performed to: (1) investigate the changes in workplace conditions indicated by social workers as a result of the COVID-19 pandemic; (2) examine reported levels of distress, social support, quality of professional life, resilience, and posttraumatic growth among respondents during this time; and (3) contextualize these findings by exploring similarities and differences across geographic locations. Many respondents were deemed essential workers. Significant differences across regions were not found. The knowledge generated has important implications for all sectors of the social work profession in Canada.


Asunto(s)
COVID-19 , COVID-19/epidemiología , Canadá/epidemiología , Atención a la Salud , Humanos , Pandemias , SARS-CoV-2 , Servicio Social
5.
Can Rev Sociol ; 59(3): 348-368, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35713006

RESUMEN

COVID-19 has led to unprecedented health and social measures in several countries, including major restrictions on funeral rituals. These restrictions concerned pre-mortem, peri-mortem and post-mortem rites. Based on a longitudinal study of 955 French-speaking Canadians bereaved of a loved one during the pandemic, this article describes the reality of these impediments. Through an analysis of the quantitative and qualitative data collected, it is possible to identify the gap between desired and realized funeral rituals during the first year of the COVID-19 pandemic. The results show important hindrances to the various desired rituals, yet some ritual and symbolic creativity by the bereaved.


La Covid-19 a entraîné dans plusieurs pays des mesures sociosanitaires inédites, notamment des restrictions majeures aux rituels funéraires. Ces empêchements ont concerné tant les rites pré-mortem, péri-mortem que post-mortem. À partir d'une étude longitudinale débutée en mars 2021 auprès de 955 personnes francophones canadiennes endeuillées d'un proche pendant la pandémie, cet article propose de décrire la réalité vécue de ces empêchements. Par une analyse des données quantitatives et qualitatives recueillies, il est possible d'identifier l'écart entre les rituels funéraires souhaités et réalisés pendant la première année de la pandémie de Covid-19. Les résultats montrent d'importantes privations des différents rites souhaités, mais également une certaine créativité rituelle et symbolique de la part des personnes endeuillées.


Asunto(s)
COVID-19 , Pandemias , Canadá , Humanos , Estudios Longitudinales
6.
Death Stud ; 46(1): 132-139, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-31994454

RESUMEN

A memorial tattoo is a tattoo that honors a person who has died. We aimed to understand how memorial tattoos could be an expression of a bereaved person's continuing relationship with the deceased person that the tattoo memorializes. We interviewed 41 people and used qualitative description grounded in a symbolic interactionist framework to analyze the transcripts. This research expands on continuing bonds theory by showing that memorial tattoos are an expression of the bond with the deceased as well as a way to communicate with others about their ongoing connection and to challenge stigma.


Asunto(s)
Tatuaje , Humanos , Estigma Social
7.
Death Stud ; 46(2): 425-433, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-32189580

RESUMEN

The compassionate communities movement challenges the notion that death and dying should be housed within clinical and institutional contexts, and works to normalize conversations about death and dying by promoting death literacy and dialogue in public spaces. Community-based practices and conversations about grief remain marginal in this agenda. We aimed to theorize how grief could be better conceptualized and operationalized within the compassionate communities movement. We develop the concept of Grief Literacy and present vignettes to illustrate a grief literate society. Grief literacy augments the concept of death literacy, thereby further enhancing the potential of the compassionate communities approach.


Asunto(s)
Pesar , Alfabetización , Empatía , Humanos
8.
BMJ Open ; 11(11): e053959, 2021 11 03.
Artículo en Inglés | MEDLINE | ID: mdl-34732499

RESUMEN

INTRODUCTION: The COVID-19 pandemic has brought tremendous changes in healthcare delivery and exacerbated a wide range of inequities. Social workers across a broad range of healthcare settings bring an expertise in social, behavioural and mental healthcare needed to help address these health inequities. In addition, social workers integrate policy-directed interventions and solutions in clinical practice, which is a needed perspective for recovery from the COVID-19 pandemic. It remains unclear, however, what the most pressing policy issues are that have emerged during the COVID-19 pandemic. In addition, many social workers in health settings tend to underuse policy in their direct practice. The objectives of this scoping review are to: (1) systematically scope the literature on social work, COVID-19 pandemic and policy; and (2) describe the competencies required by social workers and the social work profession to address the policy issues emerging during the COVID-19 pandemic. METHODS AND ANALYSIS: The scoping review follows Arksey and O'Malley's five-stage framework. Identification of literature published between 1 December 2019 and the search date, 31 March 2021, will take place in two stages: (1) title and abstract review, and (2) full-text review. In partnership with a health science librarian, the research team listed keywords related to social work and policy to search databases including Medline, Embase, PsycINFO, CINAHL, Social Services Abstract and Social Work Abstracts. Two graduate-level research assistants will conduct screening and full-text review. Data will then be extracted, charted, analysed and summarised to report on our results and implications on practice, policy and future research. ETHICS AND DISSEMINATION: Results will help develop a policy practice competence framework to inform how social workers can influence policy. We will share our findings through peer-reviewed publications and conference presentations. This study does not require Research Ethics Board approval as it uses publicly available sources of data.


Asunto(s)
COVID-19 , Trabajadores Sociales , Creación de Capacidad , Política de Salud , Humanos , Pandemias/prevención & control , Proyectos de Investigación , Literatura de Revisión como Asunto , SARS-CoV-2
9.
J Relig Health ; 60(3): 1475-1493, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-33759072

RESUMEN

COVID-19 has led to the implementation of various social and sanitary measures, impacting populations' quality of life. Aims: Documenting the spiritual quality of life (SQoL) of university employees and students in Quebec, Canada. A survey of 2,202 employees and students was conducted using health measurement tools, including the short version of the WHOQoL-SRPB. We ran a multiple linear regression to determine which variables promote the SQoL. SQoL was very low (2.92/5). Positive mental health, religion, and age are the main predictors of the SQoL. Some dimensions of spirituality contribute more than others to the respondents' quality of life and health during the COVID-19 pandemic.


Asunto(s)
COVID-19 , Calidad de Vida , Canadá , Humanos , Análisis Multivariante , Pandemias , Psicometría , SARS-CoV-2 , Espiritualidad , Encuestas y Cuestionarios
10.
J Interprof Care ; 32(6): 752-761, 2018 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-30160548

RESUMEN

Collaboration in healthcare implies that health providers share responsibility and partner with each other in order to provide comprehensive patient care. A review of the empirical literature on teamwork in healthcare settings suggests that the relationships between service providers remain conflictual and variable in commitment to interprofessional collaboration. Recently, social psychologists have given considerable attention to the possibility that empathy could be used to improve intergroup attitudes and relations. Although empathy may be referred to as a means to humanize healthcare practices, few published studies from the healthcare literature focus on the nature of interprofessional empathy. Understanding frameworks different from your own and empathizing with other members of the team is fundamental to collaborative practice. The aim of this study was to understand the nature of empathy among members of interprofessional teams within a hospital environment. This study followed the lived experience of 24 health professionals with their perspective of empathy on interprofessional teams. A two-step procedure was used consisting of semi-structured interviews and depth interviews. Phenomenological data analysis was used to identify common themes and meanings across interviews. From the findings, a four-stage developmental model of interprofessional empathy emerged: Stage 1 is engaging in conscious interactions; Stage 2 requires using dialogical communication; Stage 3 is obtained when healthcare professionals consolidate understanding through negotiating differences between each other; and Stage 4 shows mastery of nurturing the collective spirit. Knowledge of this stage model will provide clinicians with the information necessary to develop awareness of how day-to-day activities within their interprofessional teams influence the development of interprofessional empathy.

11.
J Soc Work End Life Palliat Care ; 14(1): 110-123, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29482461

RESUMEN

Parenting a child with chronic kidney disease has a profound impact on the parental caregivers across social, emotional, and physical functioning. As the survival rates for children with chronic kidney disease increase, the demands on parents caring for these children intensify. The aim of this study was to understand the lived experience of being a mother of a child who has undergone kidney transplantation. Seven mothers caring for children with chronic kidney disease in Ontario, Canada participated in in-depth interviews that were analyzed according to the principles of hermeneutic phenomenology. The present study presents the findings concerning post-traumatic growth: personal strength, new possibilities, enhanced relationships, appreciation of life and spiritual change. Recognizing positive aspects of stressful situations and the potential for growth can impact the practice of social workers and other health-care professionals. Ultimately the assistance that is provided to parent caregivers can be improved with a better understanding of the whole experience.


Asunto(s)
Adaptación Psicológica , Cuidadores/psicología , Trasplante de Riñón/psicología , Padres/psicología , Insuficiencia Renal Crónica/psicología , Adulto , Femenino , Humanos , Trasplante de Riñón/métodos , Ontario , Insuficiencia Renal Crónica/cirugía , Espiritualidad , Estrés Psicológico/psicología
12.
Death Stud ; 42(3): 184-194, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-28541834

RESUMEN

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.


Asunto(s)
Aflicción , Acontecimientos que Cambian la Vida , Relaciones entre Hermanos , Hermanos/psicología , Adolescente , Niño , Femenino , Humanos , Masculino , Estudios Prospectivos , Investigación Cualitativa
13.
BMC Health Serv Res ; 17(1): 709, 2017 Nov 09.
Artículo en Inglés | MEDLINE | ID: mdl-29121916

RESUMEN

BACKGROUND: The unpaid care provided by informal caregivers allows care recipients to live longer in their homes, which often results in fewer unnecessary long term care home (LTCH) admissions. Although the relationship between care recipient's health characteristics and institutionalization is well known, the influence of caregiver distress and caregiving coresidence and relationship on this outcome is less clear. This study examines the association of care recipient care needs, caregiver distress and caregiving coresidence and relationship with care recipient long term care home admission. METHODS: A total of 94,957 resident assessment instruments-home care (RAI-HC), completed between April 01st 2013 and April 01st, 2014 as part of a clinical practice by 14 Local Health Integration Networks (LHINs) in Ontario, Canada, were linked to LTCH admissions within 1 year after completion of the first RAI-HC assessment. Cox models were used to examine whether care recipient health care needs, caregiver distress and caregiving characteristics such as coresidence and relationship were associated with LTCH admission. Age, marital status and gender of the care recipient were included as covariates in the model. RESULTS: Care recipient health care needs and age were the strongest predictors of LTCH admission followed by caregiver distress and caregiving coresidence and relationship. Care recipient marital status was not significant in the survival model. Interestingly, care recipients who were cared for by a coresiding adult child caregiver were less likely to be admitted to a LTCH than care recipients cared for by a spouse caregiver coresiding or not with care recipient. Hazard rates (HR) of admission for care recipients cared for by caregivers coresiding and with other type of relationship with care recipient were not significantly different than HR of care recipients cared for by coresiding child caregivers. CONCLUSIONS: These results emphasize the influence of caregiver distress in LTCH admission and highlight the impact of caregiving relationship and coresidence on this outcome. Policy and decision makers should consider these findings when developing and evaluating interventions aiming to avoid LTCH admissions. Moreover, caregiving coresidence and relationship should be explored in future studies with similar aims, as this information has been neglected in past research.


Asunto(s)
Cuidados Posteriores , Cuidadores , Estado de Salud , Casas de Salud , Admisión del Paciente/tendencias , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Cuidados a Largo Plazo , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Ontario , Modelos de Riesgos Proporcionales
14.
J Pediatr Psychol ; 42(1): 104-113, 2017 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-28173141

RESUMEN

Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.


Asunto(s)
Trastornos de la Conducta Infantil/diagnóstico , Enfermedad Crónica/psicología , Problema de Conducta/psicología , Hermanos/psicología , Adolescente , Niño , Conducta Infantil/psicología , Trastornos de la Conducta Infantil/psicología , Femenino , Humanos , Masculino , Madres , Autoinforme
15.
Qual Health Res ; 27(3): 406-420, 2017 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-27557925

RESUMEN

In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.


Asunto(s)
Niño Hospitalizado/psicología , Comunicación , Personal de Salud/psicología , Afecciones Crónicas Múltiples/psicología , Padres/psicología , Relaciones Profesional-Familia , Adulto , Niño , Femenino , Grupos Focales , Teoría Fundamentada , Hospitales para Enfermos Terminales , Humanos , Unidades de Cuidado Intensivo Pediátrico , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Investigación Cualitativa
17.
Work ; 50(3): 511-26, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25248540

RESUMEN

BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss. OBJECTIVE: The purpose of this study was to reflect upon the ways labour policies and practices respond to parental bereavement. METHODS: Critical discourse analysis was used to examine labour policies and practices related to employment leave for bereaved parents in Canada. Results were compared to international labour standards. RESULTS: Universally, employment policies provide only for the practical issues of bereavement. Commonly, leave is three days, unpaid, and meant to enable ceremonial obligations. Policies do not acknowledge the long-term suffering caused by grief or the variable intensity of different kinds of loss. Managerial, moral, normative and neoliberal values embedded in these policies efface the intensely personal experience of grief, thereby leaving employees at risk for serious health and workplace safety issues. CONCLUSIONS: Bereavement leave currently understands grief as a generic, time-limited state with instrumental tasks and ceremonial obligations. In contrast, research characterizes responses to child loss as intense, highly personal experiences for which healing and recovery can take years. This disconnect is especially problematic when viewed through the lens of employee wellbeing, reintegration and workplace productivity.


Asunto(s)
Pesar , Política Organizacional , Padres/psicología , Salarios y Beneficios , Lugar de Trabajo/legislación & jurisprudencia , Adaptación Psicológica , Aflicción , Canadá , Niño , Muerte , Humanos , Legislación como Asunto , Factores de Tiempo , Lugar de Trabajo/organización & administración
18.
J Palliat Med ; 17(7): 788-96, 2014 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-24871891

RESUMEN

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.


Asunto(s)
Investigación Biomédica , Servicios de Salud del Niño , Padres/psicología , Adolescente , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad , Cuidados Paliativos , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios , Adulto Joven
19.
Am J Orthopsychiatry ; 84(2): 123-33, 2014 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-24826928

RESUMEN

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.


Asunto(s)
Cuidadores/psicología , Niños con Discapacidad/psicología , Desarrollo Humano , Padres/psicología , Adulto , Anciano , Niño , Humanos , Masculino , Persona de Mediana Edad , Modelos Psicológicos , Cuidados Paliativos/psicología , Adulto Joven
20.
Arch Dis Child ; 99(8): 754-62, 2014 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-24833792

RESUMEN

BACKGROUND: Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities. AIM: To describe these children's symptoms, as well as how the children's condition affects them physically. DESIGN: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families. SETTING/PARTICIPANTS: Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated. RESULTS: The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms. CONCLUSIONS: These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.


Asunto(s)
Evaluación de la Discapacidad , Enfermedades Genéticas Congénitas/diagnóstico , Trastornos Mentales/diagnóstico , Enfermedades Metabólicas/diagnóstico , Adaptación Psicológica , Adolescente , Niño , Preescolar , Estudios Transversales , Progresión de la Enfermedad , Trastornos de Ingestión y Alimentación en la Niñez/diagnóstico , Femenino , Enfermedades Genéticas Congénitas/fisiopatología , Humanos , Lactante , Estudios Longitudinales , Masculino , Trastornos Mentales/fisiopatología , Enfermedades Metabólicas/fisiopatología , Evaluación de Resultado en la Atención de Salud , Dolor/diagnóstico , Padres/psicología , Trastornos del Sueño-Vigilia/diagnóstico , Adulto Joven
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