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1.
BMC Geriatr ; 23(1): 133, 2023 03 08.
Artículo en Inglés | MEDLINE | ID: mdl-36882719

RESUMEN

BACKGROUND: Nursing home (NH) residents' experiences are embedded within their relationships to others. Our objectives were to describe how residents and care partners (family or staff members) jointly construct, discuss, and act on care priorities. METHODS: We used Action-Project Method, a qualitative method focused on action within social context. We recruited 15 residents and 12 care partners (5 family and 7 staff members) from 3 urban NHs in Alberta, Canada. Residents and care partners participated in a video-recorded conversation about their experiences in the NH, then individually reviewed the video-recording to add context to the conversation. Following transcription, preliminary narrative construction, and participant feedback, the research team conducted in-depth analysis to identify participant actions, goals, and projects, including those jointly shared by dyad members. RESULTS: All participants' intentions could be broadly described as "making time in the NH as good as possible" and projects were grouped into five categories: resident identity, relationships (both presence and absence), advocacy, positivity, and respectful care. Participants often raised issues of short-staffing as a significant barrier to respectful care. Care partners, especially staff, used positivity to redirect residents from difficult topics. Joint projects could be identified in some, but not all, cases. CONCLUSIONS: We found that maintaining a sense of identity, fostering relationships, and receiving respectful care were important to residents but that short-staffing created barriers. Methods to capture these aspects of the resident experience are needed but should not be influenced by care partners' tendency towards positivity in resident interactions.


Asunto(s)
Cuidadores , Medio Social , Humanos , Recursos Humanos , Alberta , Casas de Salud
2.
J Adolesc ; 95(3): 437-453, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36437557

RESUMEN

OBJECTIVE: Although nonsuicidal self-injury is a public health concern, there is little information on how it changes across adolescence or what contributes to stability or change. We aimed to identify trajectories of stability and change in self-injury from ages 13 to 17 years, and to identify interpersonal and intrapersonal correlates that differentiate between trajectories of stability and change. METHOD: We used five annual waves of cohort-sequential data, targeting 7th and 8th graders attending all public schools in three municipalities in central Sweden. The data were gathered via questionnaires, using a multi-item measure of non-suicidal self-injury and assessing negative experiences at home, in school, with peers, and in romantic settings, as well as intrapersonal issues (internalizing symptoms and difficulties with emotional, and behavioral regulation). The analytic sample was 3195 adolescents (51.7% boys, 48.3% girls; ages 12-16 years at T1, M = 13.61; SD = 0.66), most of whom were born in Sweden (88.6%) to at least one parent of Swedish origin (77.4%). RESULTS: Latent growth curve modeling revealed three self-injury trajectories: a stable-low, a low-increasing, and an increasing-decreasing trajectory. Adolescents in the stable-low class reported the best overall adjustment at ages 13 and 16. Comparatively, adolescents in the other two classes reported similar levels of difficulty interpersonally and intrapersonally. Where they differed, the increase-decrease class fared worse than the low-increasing class. CONCLUSIONS: This study suggests the need to frame self-injury as having multiple directions of development during adolescence and develop theory that aligns with differential patterns of self-injury development.


Asunto(s)
Conducta del Adolescente , Conducta Autodestructiva , Masculino , Femenino , Humanos , Adolescente , Niño , Conducta Autodestructiva/psicología , Depresión/psicología , Grupo Paritario , Conducta del Adolescente/psicología , Emociones , Estudios Longitudinales
3.
Br J Clin Psychol ; 61(4): 983-997, 2022 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-35411630

RESUMEN

OBJECTIVE: Although self-compassion has been shown to facilitate eating disorder (ED) remission, significant barriers to acquiring this skill have been identified. This is particularly true for tertiary care populations, where ED behaviours provide a valued identity and readiness issues are highly salient. In this research, the voices and perspectives of patients who have recovered as well as those in later stages of tertiary care treatment were captured using qualitative methods. METHODS: Seventeen individuals with a lengthy ED history (seven fully recovered, 10 currently in recovery-focused residential treatment) participated in audio recorded interviews. Using a visual timeline, participants described the development of their understanding of self-compassion, barriers to self-compassion and how these barriers were overcome. RESULTS: Three processes were identified, reflecting different levels of readiness. Challenging my beliefs involved overcoming cognitive barriers to the concept of self-compassion (i.e. coming to see self-compassion as helpful), and set the stage for dealing with the world around me and rolling up my sleeves, which reflected preparatory (i.e. freeing oneself from difficult life circumstances) and active (i.e. having the courage to do the work) change efforts, respectively. CONCLUSIONS: These findings may help patients embarking on tertiary care treatment to envision a roadmap of supportive processes and help clinicians tailor interventions to patient level of readiness for self-compassion.


Asunto(s)
Empatía , Trastornos de Alimentación y de la Ingestión de Alimentos , Trastornos de Alimentación y de la Ingestión de Alimentos/terapia , Humanos , Autoimagen , Autocompasión
4.
Br J Clin Psychol ; 61(4): 1119-1133, 2022 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-35876265

RESUMEN

OBJECTIVES: The current study was conducted to further understand the experiences of youths with an eating disorder with accessing services and receiving treatment. Participants' perceptions of the role of gender in eating disorder treatment was also assessed. DESIGN: A prospective mixed methods design was used, with the current report focusing on qualitative interviews. METHODS: Youths who were receiving services in a specialized paediatric eating disorder program completed a semi-structured interview in combination with a visual lifeline upon their discharge. A process of interpretative induction was employed to derive high-level concepts from the interviews. RESULTS: A total of 28 youths (15 males and 13 females) completed an interview. Four high-level concepts were identified: (1) unwanted/non-collaborative support, (2) conflicting views, (3) dynamics in relationships (with sub-concepts relating to peers and health professionals), and (4) changing mindset. Although many participants viewed treatment as universal, a subset of participants noted that treatment was tailored towards females. CONCLUSIONS: Youths shared several challenges that they encountered in their journey to accessing specialized eating disorders treatment, including disagreement with their parents/caregivers and health professionals about treatment plans. Interactions with peers and health professionals represented both a facilitator (e.g., feeling supported and inspired by peers) and a challenge (e.g., negative interactions with professionals). Some youths shared concerns about the female-centric nature of treatment. The results of this study highlight the importance of collaborative care for paediatric eating disorders, and consideration for gender inclusivity in eating disorders treatment.


Asunto(s)
Trastornos de Alimentación y de la Ingestión de Alimentos , Adolescente , Cuidadores , Niño , Trastornos de Alimentación y de la Ingestión de Alimentos/terapia , Femenino , Personal de Salud , Humanos , Masculino , Padres , Estudios Prospectivos
5.
Health Promot Int ; 36(2): 570-580, 2021 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-32596730

RESUMEN

Information is lacking on the role shared decision making plays in the care of transgender (trans) youth. This qualitative, descriptive study explored how trans youth, parents and health care providers engaged or did not engage in shared decision-making practices around hormone therapy initiation and what conditions supported shared decision-making approaches in clinical practice. Semi-structured interviews were conducted with 47 participants in British Columbia, Canada, and analyzed using a constructivist grounded theory approach. While formal shared decision-making models were not used in practice, many participants described elements of such approaches when asked about their health care decision-making processes. Others described health care interactions that were not conducive to a shared decision-making approach. The key finding that emerged through this analysis was a set of five conditions for supporting shared decision making when making decisions surrounding initiation of hormone therapy with trans youth. Both supportive relationships and open communication were necessary among participants to support shared decision making. All parties needed to agree regarding what decisions were to be made and what role each person would play in the process. Finally, adequate time was needed for decision-making processes to unfold. When stakeholders meet these five conditions, a gender-affirming and culturally safer shared decision-making approach may be used to support decision making about gender-affirming care. Implications for clinical practice and future research are discussed.


Asunto(s)
Toma de Decisiones Conjunta , Personas Transgénero , Adolescente , Canadá , Toma de Decisiones , Humanos , Investigación Cualitativa
6.
J Adolesc ; 79: 136-147, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31972534

RESUMEN

INTRODUCTION: This study explored how transgender (trans) youth and parents of trans youth made decisions around hormone therapy initiation as well as trans youth experiences of barriers to care. METHODS: Participants included 21 trans youth (ages 14-18) and 15 parents of trans youth who resided in British Columbia, Canada. Data for this grounded theory research consisted of transcripts and lifeline drawings collected through semi-structured interviews conducted August 2016 through February 2017. RESULTS: The decision-making processes of youth and of parents are illustrated in three-phase temporal models, starting with discovery, leading to (inter)action while seeking care, and reflection after hormone therapy initiation. Youth who sought hormone therapy were clear about their decision to access this care. Throughout these processes, youth experienced numerous parent- and system-related barriers to care. Youth with the lowest levels of parent support experienced more system barriers, with non-binary/genderfluid youth experiencing greater barriers and less support for hormone therapy than youth with binary genders. A new barrier identified in this study was health care provider imposed requirements for parental involvement and/or approval, which rendered some youth unable access to hormone therapy. CONCLUSIONS: Health care providers should be aware of the deliberation and information-seeking in which youth engage prior to seeking care as well as the temporally misaligned decision-making processes of youth and parents. Understanding the challenges trans youth experience due to insufficient parental support and system barriers can provide important context for health care providers striving to provide accessible, gender-affirming care and decision-making support for trans youth.


Asunto(s)
Toma de Decisiones , Terapia de Reemplazo de Hormonas/psicología , Padres/psicología , Aceptación de la Atención de Salud/psicología , Personas Transgénero/psicología , Adolescente , Adulto , Colombia Británica , Femenino , Hormonas/administración & dosificación , Humanos , Conducta en la Búsqueda de Información , Masculino , Investigación Cualitativa
7.
Curr Psychiatry Rep ; 21(11): 107, 2019 10 15.
Artículo en Inglés | MEDLINE | ID: mdl-31617014

RESUMEN

PURPOSE OF REVIEW: This scoping review includes recent literature on eating disorder diagnoses and evaluation of eating disorder symptom presentation among transgender youth (ages 8-25). RECENT FINDINGS: A total of 20 publications from the previous 5 years were identified, including case reports, retrospective chart reviews, and surveys. Significantly higher rates of eating disorder symptoms were documented in transgender youth compared to cisgender youth. Similarly, some studies reported transgender youth were more likely to be diagnosed with an eating disorder than cisgender youth, though the proportion of youth with eating disorder diagnoses varied across studies. A consistent theme across case studies was engagement in food restriction and/or compensatory eating behaviors to prevent puberty onset or progression, suggesting that for some transgender youth, these behaviors may be understood as a means of coping with gender-related distress. Clinical care could be enhanced through establishment of best practices for screening in settings offering eating disorder treatment and gender-affirming care, as well as greater collaboration among these programs. Research is needed to validate eating disorder measures for use with transgender youth and evaluate the effects of eating disorder treatment and gender-affirming medical interventions on the well-being of transgender youth.


Asunto(s)
Trastornos de Alimentación y de la Ingestión de Alimentos/diagnóstico , Trastornos de Alimentación y de la Ingestión de Alimentos/psicología , Personas Transgénero/psicología , Conducta Alimentaria , Identidad de Género , Humanos
8.
J Adolesc ; 75: 163-174, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-31400556

RESUMEN

INTRODUCTION: Depressive symptoms and non-suicidal self-injury not only increase in prevalence during adolescence, but they can also occur together. Both psychological problems seem to have similar precipitating conditions, suggesting they have transdiagnostic conditions-personal or contextual characteristics that contribute to co-occurrence. We sought to understand when these two problems co-occur and what is related to their co-occurrence. METHODS: Using a pattern-centered approach and two waves of longitudinal data collected annually, we examined latent profiles of depressive symptoms and self-injury among a Swedish sample of adolescents aged 12 to 16 (MageT1 = 13.65 years, SD = 0.64), 53.7% boys and 47.3% girls. Most of the adolescents were Swedish (89%), with parents who were married or cohabitating (68%). We also examined the transitions between profiles over time. RESULTS: Our results suggest that during this time frame, depressive symptoms and self-injury tend to emerge and stabilize or abate together. We also examined a broad array of predictors, including individual characteristics, emotion dysregulation, experiences with friends, parents' negative reactions to behavior, and school stress. The significant unique predictors suggest that adolescents who reported being subjected to relational aggression, having negative experiences while drinking, and low self-esteem had a greater probability of moving from moderate to high levels or maintaining high levels of depressive symptoms and self-injury, compared to adolescents classified in the other statuses. CONCLUSIONS: Focusing on negative interpersonal experiences and selfesteem as transdiagnostic conditions may guide research and aid clinicians in supporting adolescents who feel depressed and engage in self-injury.


Asunto(s)
Depresión/epidemiología , Conducta Autodestructiva/epidemiología , Adolescente , Consumo de Bebidas Alcohólicas/epidemiología , Consumo de Bebidas Alcohólicas/psicología , Niño , Depresión/psicología , Femenino , Humanos , Relaciones Interpersonales , Análisis de Clases Latentes , Estudios Longitudinales , Masculino , Autoimagen , Conducta Autodestructiva/psicología , Suecia/epidemiología
9.
J Adolesc ; 63: 142-152, 2018 02.
Artículo en Inglés | MEDLINE | ID: mdl-29310007

RESUMEN

Little is known about the transition to adulthood in traditional, developing countries such as Saudi Arabia. Previous research in other countries has revealed the importance of considering parents' support during the transition to adulthood. Thus, the purpose of this research was to examine how two generations negotiated the transition to adulthood. We asked the research question, What are the joint projects in which parents and youth plan and act on their plans for the youth's future? We used the action project method, an established qualitative approach, to answer these questions by observing the joint conversations of 14 parent and youth dyads. Our results provided evidence of an overarching higher level goal, or intentional framework, of crafting generational change and continuity within which participants' joint projects were embedded. Joint projects were organized into three groups: (a) negotiating educational and career futures, (b) promoting gender roles and marriage, and (c) shaping independence.


Asunto(s)
Desarrollo Humano , Relaciones Padres-Hijo , Adolescente , Desarrollo del Adolescente , Adulto , Factores de Edad , Femenino , Humanos , Masculino , Responsabilidad Parental , Arabia Saudita
10.
J Appl Res Intellect Disabil ; 31 Suppl 2: 224-233, 2018 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-28834118

RESUMEN

INTRODUCTION: Parents have found the transition to adulthood for their sons or daughters with intellectual and/or developmental disabilities (IDD) particularly challenging. The literature has not examined how parents work together and with others in face of this transition nor has it highlighted parental goals in this process. This study used a perspective based on joint, goal-direct action to describe the projects that Canadian parents engaged in together and with others relative to this transition. METHODS: Using the qualitative action-project method, joint projects between parents and with others were identified from their conversations and followed for 6 months. FINDINGS: Three groups of projects were described: equipping the young adult for adult life, connecting for personal support and managing day-to-day while planning for the future. CONCLUSIONS: Parents act together and with others relative to the transition to adulthood of their young adult children with IDD. These projects are complex and differ in goals, steps, resources and emotional regulation and motivation.


Asunto(s)
Discapacidades del Desarrollo/enfermería , Discapacidad Intelectual/enfermería , Padres/psicología , Grupos de Autoayuda , Apoyo Social , Adolescente , Adulto , Canadá , Femenino , Estudios de Seguimiento , Humanos , Masculino , Investigación Cualitativa , Grupos de Autoayuda/organización & administración , Adulto Joven
11.
J Adolesc ; 54: 9-17, 2017 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-27838546

RESUMEN

Prospection is cognitive processes that involve constructing, encoding, and remembering the future. Less is known about the how these processes are evident in the prospective content of conversations. This study sought to identify and describe evidence of the prospective content in the conversations of friends as they transition to adulthood. The present secondary content analysis of the videotaped conversations of 15 young adult friendship dyads (n = 30, 16 females, 14 males, mean age = 21.3 years) in Canada examined these conversations based the following characteristics of prospection: simulation, reasoning about counterfactuals, constructing multiple possible futures, and episodic memory of the past. Four categories of prospective content were evident in these conversations, these processes were used sparingly in all but one conversation, and relatively few of them were collaborative in that dyad partners did not appear to serve to augment, clarify, or disconfirm prospective content.


Asunto(s)
Comunicación , Memoria Episódica , Grupo Paritario , Adulto , Femenino , Humanos , Masculino , Grabación en Video , Adulto Joven
12.
J Adolesc ; 37(7): 1031-42, 2014 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-25134071

RESUMEN

Leisure research to date has generally overlooked planning and organizing of leisure time and activities between parents and adolescents. This investigation examined how a sample of Canadian adolescents and their parents jointly constructed and acted on goals related to adolescents' leisure time during the move from elementary to high school. Using the Qualitative Action-Project Method, data were collected over an 8-10 month period from 26 parent-adolescent dyads located in two urban sites, through video-taped conversations about leisure time, video recall interviews, and telephone monitoring interviews. Analysis of the data revealed that the joint projects of the 26 dyads could be grouped into three clusters: a) governance transfer or attempts to shift, from parent to adolescent, responsibility over academic demands, organizing leisure time, and safety with peers, b) balancing extra-curricular activities with family life, academics, and social activities, and c) relationship adjustment or maintenance.


Asunto(s)
Actividades Recreativas/psicología , Relaciones Padres-Hijo , Adolescente , Adulto , Padre/psicología , Femenino , Humanos , Entrevistas como Asunto , Masculino , Madres/psicología , Estudiantes/psicología
13.
J Eat Disord ; 12(1): 83, 2024 Jun 17.
Artículo en Inglés | MEDLINE | ID: mdl-38886837

RESUMEN

OBJECTIVE: Models of treatment for adults with severe and enduring eating disorders focus on harm reduction and improving quality of life. However, there is a notable gap in the pediatric literature in this area. The current study set out to assess the perspectives of health professionals regarding clinical care for young people (e.g., ages 10-25 years) with severe and enduring eating disorders, and to explore perceptions about appropriate treatment options for these presentations. METHODS: Health professionals were invited to complete a two-stage online survey about their experiences with clinical care for pediatric eating disorders through Canadian and Australian professional eating disorder networks. Survey 1 included questions about their experiences in supporting individuals with severe and enduring presentations. Participants who completed Survey 2 reviewed clinical vignettes and shared their perspectives about treatment recommendations and models of care, including for a severe and enduring presentation. RESULTS: A total of 85 clinicians responded to questions on Survey 1 about severe and enduring eating disorder presentations. A portion of these respondents (n = 25) also participated in Survey 2. The majority of respondents to Survey 1 reported providing clinical care for pediatric severe and enduring eating disorder presentations. Amongst respondents to Survey 2, there was low consensus amongst respondents for the clinical care that would be most appropriate for young people with a severe and enduring eating disorder presentation. Numerous challenges in models of care for severe and enduring presentations in pediatric settings were raised in responses on Survey 2, with clinicians sharing their awareness of models focusing on quality of life, while also raising concerns about the appropriateness of these models for young people. CONCLUSIONS: The preliminary results of this study demonstrate that the majority of clinicians report that they have provided care to young people with severe and enduring presentations. There is a clear need for establishing guidance for clinicians working in pediatric eating disorder settings around models of care focused on quality of life. Engagement with interested parties, including those with lived experience, can clarify the development of terminology and clinical pathways for severe and enduring presentations of pediatric eating disorders.


Treatment models focusing on harm reduction and quality of life (as opposed to eating disorder recovery) are available for adults with severe and enduring eating disorders. However, these models are not widely available for young people. In fact, there is very limited research on severe and enduring eating disorder presentations in pediatric populations. We assessed the views of health professionals regarding clinical care for young people with severe and enduring eating disorder presentations, and asked professionals about what treatment options might be most appropriate for these presentations. Most participants reported providing clinical care for pediatric severe and enduring eating disorder presentations. However, clinicians had diverse views about the treatment that would be most appropriate for a severe and enduring eating disorder presentation in a young person. Further research and engagement with clinicians and those with lived experience is needed to clarify the terminology and clinical pathways for severe and enduring presentations of pediatric eating disorders.

14.
Int J Adolesc Med Health ; 36(1): 25-35, 2024 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-38298033

RESUMEN

OBJECTIVES: Mindful Awareness and Resilience Skills for Adolescents (MARS-A) is a mindfulness-based intervention adapted for the adolescent population. While previous studies have explored the benefits of MARS-A in various single-diagnosis populations, the aim of this study was to assess MARS-A for a heterogenous clinical adolescent population with mental health and/or chronic diagnoses, focusing on the underlying suffering present in all these conditions rather than its effects on a single diagnosis itself. METHODS: Qualitative data was collected through interviews to understand post-intervention participant perspectives and experiences. Quantitative data was collected through measures to investigate preliminary secondary outcomes. RESULTS: After participating in MARS-A, participants reported qualitative benefits in enhanced well-being, including coping with difficult emotions and managing sleep and/or pain. Quantitative results showed a reduction in functional disability, psychological distress, perceived stress, and depressive symptoms; increase in positive affect; and benefit in coping with pain and chronic conditions. CONCLUSIONS: MARS-A shows great potential in a heterogeneous clinical adolescent population.


Asunto(s)
Atención Plena , Resiliencia Psicológica , Humanos , Adolescente , Atención Plena/métodos , Emociones , Habilidades de Afrontamiento , Dolor
15.
J Youth Adolesc ; 42(8): 1234-42, 2013 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-23371004

RESUMEN

Previous research has shown a consistent positive association between non-suicidal self-injury and depressive symptoms. However, the direction of the effects has not been examined. To understand whether non-suicidal self-injury predicts depressive symptoms or vice versa, we examined the relations between non-suicidal self-injury and depressive symptoms across three waves of self-report data collected 1 year apart from 506 Swedish adolescents (47% girls; M age = 13.21; SD = .57) who were attending 7th grade at the onset of the study. The results suggest that depressive symptoms predict increases in non-suicidal self-injury 1 year later between the first and second waves of the study. Between the second and third waves of the study depressive symptoms and non-suicidal self-injury were significantly correlated indicating co-occurrence with no direction of effect rather than depressive symptoms predicting non-suicidal self-injury or vice versa. Group comparisons revealed no differences for boys and girls. The findings help clarify the relationships between non-suicidal self-injury and depressive symptoms during middle adolescence.


Asunto(s)
Conducta del Adolescente/psicología , Depresión/epidemiología , Relaciones Interpersonales , Autoimagen , Conducta Autodestructiva/epidemiología , Adolescente , Depresión/psicología , Femenino , Humanos , Estudios Longitudinales , Masculino , Grupo Paritario , Pronóstico , Factores de Riesgo , Conducta Autodestructiva/psicología , Suecia
16.
Int J Dev Disabil ; 68(4): 538-546, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35937164

RESUMEN

Problem and Objective: Transition to adulthood for young people with (IDD) is challenging for both youth and parents. Prospection, an important human adaptive tool and critical for independent living, involves constructing, encoding, and remembering the future. It may be jointly enacted between parents and young people as they discuss the future. This study identified and described evidence of prospective content in parent-youth conversations about the transition to adulthood. Method: This study involved the content analysis is of eight parent-youth conversations about this transition. Two mother-daughter, three father-daughter, and three mother-son dyads, representing a range of IDD diagnoses, provided 790 min of joint conversations and reflection on them. These conversations were examined for the following characteristics of prospection: simulation, reasoning about counterfactuals, constructing multiple possible futures, and episodic memory of the past. Findings: Among the four characteristics, simulation and episodic memory of the past were used most frequently and reasoning about counterfactuals the least. Giving advice and scaffolding were additional strategies that emerged from the data. Conclusion: Identifying how prospection may be fostered in joint parent-youth conversations provides a step toward future research.

17.
JAMA Pediatr ; 176(2): 185-195, 2022 02 01.
Artículo en Inglés | MEDLINE | ID: mdl-34807246

RESUMEN

Importance: The number of adolescents who are diagnosed with a genetic disorder is increasing as genome sequencing becomes the standard of clinical diagnostic testing. However, the experience of receiving a diagnosis of a genetic condition has not been extensively studied in adolescents. Objective: To identify how adolescents with a genetic condition engage with genetic or genomic counseling services as well as interpret, adapt to, and experience their diagnosis. Evidence Review: A literature search of MEDLINE, Embase, CINAHL, and PsycINFO was undertaken. Articles (primary literature, knowledge syntheses, and gray literature) in English that investigated the experiences of adolescents between 10 and 19 years of age who received genetic or genomic counseling were included. Data were extracted from 45 eligible articles and analyzed descriptively. Findings: A total of 45 studies were included, most of which were quantitative in nature (21 of 45 [47%]) and conducted in the US (n = 13), followed by the UK (n = 8), Australia (n = 8), and Canada (n = 6). A total of 29 distinct monogenic disorders were investigated. Sample sizes ranged from 1 to 930, with a median of 23 participants, and the year of publication ranged from 1977 to 2019. Included studies addressed all aspects of genetic counseling, but a preponderance of articles assessed knowledge about genetic conditions (n = 17) and challenges of communication within families (n = 16). Fewer articles addressed the experiences of adolescents adapting to their genetic conditions (n = 8) and the genetic counseling process (n = 4). Only 1 study addressed any aspect of genetic counseling in relation to genome sequencing. Conclusions and Relevance: This scoping review found that most of the included studies focused on adolescents' knowledge about their genetic condition and communication about genetic risks, whereas fewer studies explored their adaptation to the condition and the genetic counseling process. A systematic reconsideration of the genetic counseling process may be undertaken to provide an evidence-informed health care service that is tailored to the needs of this adolescent population.


Asunto(s)
Asesoramiento Genético , Enfermedades Genéticas Congénitas/diagnóstico , Pruebas Genéticas , Adolescente , Comunicación , Femenino , Humanos , Masculino
18.
J Youth Adolesc ; 40(2): 207-20, 2011 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-20013350

RESUMEN

This study examined reciprocal relationships between adolescents' perceptions of parental nurturance and two types of adolescent aggressive behaviors (indirect and direct aggression) using a transactional model. Three waves of longitudinal data were drawn from the Canadian National Longitudinal Survey of Children and Youth. The sample included 1,416 (735 female) adolescents who were 10- and 11-year-olds at Time 1 and became 14-and 15-year-olds at Time 3. The findings failed to support reciprocal effects, but confirmed parental effects at different ages for girls and boys. For girls, perceptions of parental nurturance at age 10 were negatively associated with both indirect and direct aggression at age 12. For boys, perceptions of parental nurturance at age 12 were negatively associated with both aggressive behaviors at age 14. Future research should continue to investigate reciprocal effects in parent-adolescent relationships to identify developmental periods where the effect of adolescents' or their parents' behavior may be stronger.


Asunto(s)
Conducta del Adolescente/psicología , Agresión/psicología , Apego a Objetos , Relaciones Padres-Hijo , Padres/psicología , Adaptación Psicológica , Adolescente , Factores de Edad , Canadá/epidemiología , Niño , Emociones , Femenino , Estudios de Seguimiento , Humanos , Control Interno-Externo , Masculino , Grupo Paritario , Valores Sociales
19.
J Eat Disord ; 9(1): 92, 2021 Jul 27.
Artículo en Inglés | MEDLINE | ID: mdl-34315529

RESUMEN

BACKGROUND: Parents are integral in the treatment of pediatric eating disorders. The current study was conducted to further understand the barriers and facilitators that parents experience in accessing specialized, tertiary level eating disorder treatment for children and adolescents. The goals of the study were to understand the processes leading to diagnosis and treatment, perceived barriers and facilitators to accessing care, and parents' experiences over the course of their child's eating disorder treatment. METHODS: Ten parents whose children were admitted to a Canadian tertiary level specialized pediatric eating disorders program took part in an exit interview upon their child's completion of treatment in the program. In-depth semi-structured interviews were combined with a visual timeline. Interpretive induction was performed to generate high-level concepts that emerged from the interviews. RESULTS: Five high-level concepts were identified: (1) delays in identifying eating disorder symptoms, (2) challenges in accessing eating disorder services, (3) the right treatment at the right time, (4) emotional impact on parents, and (5) parental expertise and involvement. CONCLUSIONS: Several barriers were identified by parents that interfered with treatment, including system-related challenges when accessing specialized eating disorder treatment, concerns about a lack of appropriate mental health support for their child, and difficulties with transitioning between community and tertiary level care. Negative emotions, including guilt and self-blame, were common early in the treatment journey. Themes of parental involvement throughout treatment, and parents taking charge of their child's recovery, emerged across interviews. The results of this study suggest the importance of early identification of eating disorder symptoms, facilitating smoother transitions between levels of care (e.g., community services and hospital-based eating disorder care), and improving clinical decision-making to ensure children and adolescents with eating disorders receive the most appropriate treatment based on their clinical presentation.


Parents play a central role in pediatric eating disorder treatment. To further understand parents' experiences over the course of their child's eating disorder treatment, interviews were conducted with ten parents whose children were admitted to a specialized pediatric eating disorders program. Five major themes emerged across the interviews with parents: delays in identifying eating disorder symptoms, challenges with accessing eating disorders care, the right treatment at the right time, emotional impact on parents, and parental expertise and involvement. Parents shared several barriers that interfered with their child's treatment, including challenges with transitions between their home community and specialized eating disorder treatment. Parents also commonly spoke about guilt and self-blame when their child was first diagnosed with an eating disorder, though many parents felt relief and improved confidence after being connected with specialized eating disorder treatment. Research is needed to understand how to provide the right treatment at the right time for each child and adolescent with an eating disorder, to ultimately improve clinical care and reduce the barriers experienced by families.

20.
J Eat Disord ; 9(1): 113, 2021 Sep 15.
Artículo en Inglés | MEDLINE | ID: mdl-34526146

RESUMEN

BACKGROUND: To address the gaps in the literature examining eating disorders among males and gender minority youths, a prospective study was designed to assess gender differences in eating disorder symptom presentation and outcomes. Muscularity concerns may be particularly relevant for male youths with eating disorders, and were included in assessment of eating disorder symptom presentation. METHODS: All cisgender male youths who presented for specialized eating disorder treatment at one of two sites were invited to participate, along with a group of matched cisgender females, and all youths who did not identify with the sex assigned to them at birth. Youths completed measures of eating disorder symptoms, including muscularity concerns, and other psychiatric symptoms at baseline and end of treatment. RESULTS: A total of 27 males, 28 females and 6 trans youths took part in the study. At baseline, Kruskal-Wallis tests demonstrated that trans youths reported higher scores than cisgender male and female youths on measures of eating pathology (Eating disorder examination-questionnaire (EDE-Q) and the body fat subscale of the male body attitudes scale (MBAS)). These analyses demonstrated that there were no differences between cisgender male and female youths on eating disorder symptoms at baseline. However, repeated measures ANOVA demonstrated that males had greater decreases in eating pathology at discharge than did females, based on self-reported scores on the EDE-Q, MBAS, and Body Change Inventory. CONCLUSIONS: Gender differences in eating pathology appeared at baseline, with trans youths reporting higher levels of eating pathology than cisgender youths, though no differences between cisgender males and females emerged at baseline for eating disorder symptom presentation. Contrary to expectations, there were no gender differences in measures of muscularity concerns. Males demonstrated greater eating disorder symptom improvements than females, suggesting that male adolescents may have better treatment outcomes than females in some domains.


Research in the field of eating disorders has focused on females, and less is known about the symptom presentation and treatment outcomes in males and gender minority youths. This prospective study set out to assess gender differences in eating pathology and treatment outcomes. Muscularity concerns may be particularly relevant for male youths with eating disorders, yet there is limited research on gender differences in muscularity concerns in treatment-seeking youths with eating disorders. Participants include cisgender male youths, matched cisgender females, and gender diverse youths who did not identify with the sex assigned to them at birth. Youths completed measures of eating disorder symptoms, including muscularity concerns, and other psychiatric symptoms at baseline and end of treatment. Some gender differences in eating pathology appeared at baseline, with trans youths reporting higher levels of eating pathology than cisgender youths. There were no differences between cisgender males and females in eating disorder symptom presentation at baseline, and contrary to expectations, there were no gender differences in measures of muscularity concerns. However, males demonstrated greater eating disorder symptom improvements than females.

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