Experiencias de vivir con cáncer para los adolescentes, adultos jóvenes y sus familias: revisión narrativa y síntesis / Experiences of living with cancer of adolescents and young adults and their families: A narrative review and synthesis

Introducción: La adolescencia es una etapa crítica de la vida, marcada por cambios físicos, psicológicos y sociales considerables. El diagnóstico del cáncer durante la adolescencia altera profundamente esta experiencia para los adolescentes, adultos jóvenes y sus familiares, con un impacto que continúa a lo largo de la vida. Es importante comprender estas experiencias para garantizar la prestación de cuidados adecuados y de apoyo de gran calidad. Esta revisión narrativa evalúa críticamente y sintetiza la literatura cualitativa que explora las experiencias de los adolescentes, adultos jóvenes con cáncer y sus familiares. Método: Revisión narrativa y síntesis de la investigación cualitativa de las experiencias de los adolescentes, adultos jóvenes con cáncer y sus familiares. Se realizó una búsqueda en Medline, CINAHL y PsycINFO entre febrero de 2000 y septiembre de 2019, utilizando términos de búsqueda tales como «adolescente», «gente joven», «adulto joven», «cáncer», «familiar» y «cualitativo». Se evaluó y sintetizó la literatura utilizando el marco de Popay et al.1 Resultados: Se recuperaron 3.016 artículos (Medline n = 1.298; CINAHL n = 1.632 y PsycINFO n = 86). De ellos se eliminaron 151 duplicados. Se cribaron 2.865 documentos, considerándose elegibles para su inclusión 121 resúmenes. Dieciocho documentos cumplieron los criterios de inclusión. Se identificaron tres temas interrelacionados: ser diagnosticado de cáncer, incertidumbre/aferrarse a la vida y brechas en la prestación de cuidados. Discusión y recomendaciones: Pocos estudios abordan el impacto del cáncer en los familiares de los adolescentes y adultos jóvenes con cáncer. La investigación futura deberá explorar esta experiencia. Al hacerlo, se comprenderá mejor el impacto relacional, como base de los cuidados de apoyo centrados en la familia.(AU)

Introduction: Adolescence is a critical life stage marked by significant physical, psychological, and social change. Cancer diagnosis during adolescence profoundly affects this experience for adolescents and young adults (AYA) and their families with an impact that continues throughout life. It is important to understand these experiences to ensure delivery of appropriate and high-quality supportive care. This narrative review critically appraised and synthesised qualitative literature that explored the experiences of AYAs and their families living with cancer. Method: Narrative review and synthesis of qualitative research of AYAs’ and their families’ experiences of cancer. MEDLINE, CINAHL and PsycINFO were searched between February 2000 and September 2019 using search terms including «adolescent», «young people», «young adult», «cancer», «family», and «qualitative». Literature was appraised and synthesised using Popay et al.1 framework. Results: 3016 articles were retrieved (Medline n = 1298, CINAHL n = 1632, PsycINFO n = 86). Of these, 151 duplicates were removed. 2865 papers were screened with 121 abstracts considered for eligibility for inclusion. Eighteen papers met the inclusion criteria. Three inter-related themes were identified: being diagnosed with cancer; uncertainty - holding on to life and gaps in care delivery. Discussion and recommendations: Few studies discuss the impact of cancer on the families of AYA living with cancer. Future research should explore this experience. By doing so the relational impact of cancer will be better understood as the basis of supportive family-centred care.(AU)

Life Interrupted: Experiences of adolescents, young adults and their family living with malignant melanoma.

AIM: Melanoma is one of the most common human malignancies; yet, it is often thought of as a disease of adulthood rather than one affecting adolescents and young adults. This study sought to understand the experiences of adolescents, young adults and their family living with malignant melanoma. DESIGN: A qualitative study using Interpretive Phenomenological Analysis, through a multi-perspective design. METHODS: Data collection was conducted between January and August 2018 in each participant's Primary Care Centre when they were attending for an outpatient appointment. Each young person and a nominated family member were interviewed (n = 10) either individually (n = 4) or as a dyad (n = 6) according to their personal choice. In-depth semi-structured interviews were conducted and audio-recorded with the participant's consent. Interview data were transcribed verbatim and analysed. FINDINGS: The metanarrative 'Life Interrupted' was the core conceptual thread woven throughout the findings. It represents the interconnections and interrelationships between the adolescent or young adult and their family. Being able to recognize the disease and seek support was challenging with often limited physical, emotional or social support resulting in feelings of fear and isolation. Four super-ordinate themes were identified: (a) 'Is it Serious', (b) 'Too Much too Young', (c) 'Not the Same' and (d) 'Time to Live'. CONCLUSIONS: With the rising incidence of MM in the adolescents and young adults population globally, there are demands to improve healthcare professionals and nurse's knowledge and understanding of MM. As young people with MM experience their journey outside specialist cancer services, the care delivery for this patient group and their families require stronger links between services. IMPACT: This study will inform the improvement of care delivery for MM in order that this patient group is provided with the same access to service delivery as other adolescents and young adults with cancer.

Experiences of living with cancer of adolescents and young adults and their families: A narrative review and synthesis.

INTRODUCTION: Adolescence is a critical life stage marked by significant physical, psychological, and social change. Cancer diagnosis during adolescence profoundly affects this experience for adolescents and young adults (AYA) and their families with an impact that continues throughout life. It is important to understand these experiences to ensure delivery of appropriate and high-quality supportive care. This narrative review critically appraised and synthesised qualitative literature that explored the experiences of AYAs and their families living with cancer. METHOD: Narrative review and synthesis of qualitative research of AYAs' and their families' experiences of cancer. MEDLINE, CINAHL and PsycINFO were searched between February 2000 and September 2019 using search terms including "adolescent", "young people", "young adult", "cancer", "family", and "qualitative". Literature was appraised and synthesised using Popay et al.'s1 framework. RESULTS: 3016 articles were retrieved (Medline n=1298, CINAHL n=1632, PsycINFO n=86). Of these, 151 duplicates were removed. 2865 papers were screened with 121 abstracts considered for eligibility for inclusion. Eighteen papers met the inclusion criteria. Three inter-related themes were identified: being diagnosed with cancer; uncertainty - holding on to life and gaps in care delivery. DISCUSSION AND RECOMMENDATIONS: Few studies discuss the impact of cancer on the families of AYA living with cancer. Future research should explore this experience. By doing so the relational impact of cancer will be better understood as the basis of supportive family-centred care. PROSPERO Registration: CRD42017084148.

Experiences of living with cancer of adolescents and young adults and their families: A narrative review and synthesis.

INTRODUCTION: Adolescence is a critical life stage marked by significant physical, psychological, and social change. Cancer diagnosis during adolescence profoundly affects this experience for adolescents and young adults (AYA) and their families with an impact that continues throughout life. It is important to understand these experiences to ensure delivery of appropriate and high-quality supportive care. This narrative review critically appraised and synthesised qualitative literature that explored the experiences of AYAs and their families living with cancer. METHOD: Narrative review and synthesis of qualitative research of AYAs' and their families' experiences of cancer. MEDLINE, CINAHL and PsycINFO were searched between February 2000 and September 2019 using search terms including "adolescent", "young people", "young adult", "cancer", "family", and "qualitative". Literature was appraised and synthesised using Popay et al.'s1 framework. RESULTS: 3016 articles were retrieved (Medline n=1298, CINAHL n=1632, PsycINFO n=86). Of these, 151 duplicates were removed. 2865 papers were screened with 121 abstracts considered for eligibility for inclusion. Eighteen papers met the inclusion criteria. Three inter-related themes were identified: being diagnosed with cancer; uncertainty - holding on to life and gaps in care delivery. DISCUSSION AND RECOMMENDATIONS: Few studies discuss the impact of cancer on the families of AYA living with cancer. Future research should explore this experience. By doing so the relational impact of cancer will be better understood as the basis of supportive family-centred care. PROSPERO Registration: CRD42017084148.

The Counterintuitive Relationship between Telomerase Activity and Childhood Emotional Abuse: Culture and Complexity.

BACKGROUND: A burgeoning literature has found relationships between telomere length, telomerase activity, and human health and longevity. Although some research links a history of childhood adversity with shortened telomere length, our review found no prior research on the relationship between child maltreatment history and telomerase activity in adulthood. We hypothesized a negative relationship between child maltreatment and telomerase activity and hypothesized that the association would be moderated by sex. METHODS: These relationships were tested on a sample of 262 Hong Kong Chinese adults (200 females versus 62 males) with mild to moderate depression. RESULTS: Counterintuitively, emotional abuse was positively associated with telomerase activity, while other maltreatment types were non-significant. The positive relationship between emotional abuse and telomerase activity was significantly moderated by the sex of the participant. CONCLUSIONS: We advance two possible explanations for this finding (1) a culturally informed resilience explanation and (2) a homeostatic complexity explanation. The two explanations are not mutually exclusive. This trial is registered under Hong Kong Clinical Trial Register number HKCTR-1929. SIGNIFICANCE STATEMENT: Emotional abuse was significantly positively associated with telomerase activity. There are at least two non-mutually exclusive explanations for the findings. Simply put, either (1) in the cultural context of Hong Kong emotional abuse was not a risk factor, and/or (2) the conceptualization of telomerase activity as a straightforward indicator of longevity is overly simplistic. The first story we might term a "resilience explanation" while the second we might call a "homeostatic complexity" story.

Working in the Field of Complex Psychological Trauma: A Framework for Personal and Professional Growth, Training, and Supervision.

The aim of this article is to explore the positive and negative impacts of working therapeutically in complex psychological trauma (CPT), particularly the field of gender-based violence (GBV) and childhood sexual abuse (CSA), from the clinicians' perspective. The focus was on the prospect of positive gains and growth for therapists. Twenty-one clinicians (n = 21; counselors/psychotherapists and psychologists) from National Health Service (NHS) specialist trauma services, a community mental health team, and specialist sexual assault counseling organization participated. Interpretative phenomenological analysis (IPA) was utilized to conduct single one-off interviews and analysis. Six themes were identified: Called to the work; Connection, Separation, and Oneness; Into and out of the darkness; Chaos into meaning; Reparation not repetition; and Expansion and growth. The first "Therapist Led Framework of Growth in Trauma Work" is presented. Vicarious posttraumatic growth (VPTG) was a key finding, with CPT therapists experiencing a "challenge/benefit/change" growth process. Adoption of actively relational strategies to enhance clinicians' growth process through trauma work is being proposed. The benefits of conceptualizing both the positive and negative impacts of such work for supervision, training, shaping the formal curricula, service management, and continuing professional development (CPD) are being discussed. The need for good practice guidelines on self-care internationally is highlighted.

Experiences of diagnosis, stigma, culpability and disclosure in male patients with hepatitis C virus: An interpretative phenomenological analysis.

The current study aimed to explore the lived experience of patients with hepatitis C virus infection. Semi-structured interviews were conducted with seven male participants living with hepatitis C virus and were analysed using interpretative phenomenological analysis. Two master themes were identified: (1) diagnosis and the search for meaning and (2) impact of stigma on disclosure. Participants reported fears of contaminating others, feelings of stigma and concerns of disclosing the condition to others. Response to diagnosis, stigma and disclosure among the participants appeared to be interrelated and directly related to locus of blame for virus contraction. More specifically, hepatitis C virus transmission via medical routes led to an externalisation of culpability and an openness to disclosure. Transmission of hepatitis C virus as a direct result of intravenous drug use led to internalised blame and a fear of disclosure. The inter- and intra-personal consequences of hepatitis C virus explored in the current study have potential implications for tailoring future psychological therapy and psychoeducation to the specific needs of the hepatitis C virus population.

Trust as a mediator in the relationship between childhood sexual abuse and IL-6 level in adulthood.

Childhood sexual abuse (CSA) has been shown to predict the coupling of depression and inflammation in adulthood. Trust within intimate relationships, a core element in marital relations, has been shown to predict positive physical and mental health outcomes, but the mediating role of trust in partners in the association between CSA and inflammation in adulthood requires further study. The present study aimed to examine the impact of CSA on inflammatory biomarkers (IL-6 and IL-1ß) in adults with depression and the mediating role of trust. A cross-sectional survey data set of adults presenting with mood and sleep disturbance was used in the analysis. CSA demonstrated a significant negative correlation with IL-6 level (r = -0.28, p<0. 01) in adults with clinically significant depression, while trust showed a significant positive correlation with IL-6 level (r = 0.36, p < .01). Sobel test and bootstrapping revealed a significant mediating role for trust between CSA and IL-6 level. CSA and trust in partners were revealed to have significant associations with IL-6 level in adulthood. Counterintuitively, the directions of association were not those expected. Trust played a mediating role between CSA and adulthood levels of IL-6. Plausible explanations for these counterintuitive findings are discussed.

Therapeutic Change in Group Therapy For Interpersonal Trauma: A Relational Framework for Research and Clinical Practice.

Our understanding of therapeutic change processes in group therapy for complex interpersonal trauma has been limited. The present study aimed at addressing this gap by developing a framework of therapeutic change in this field from a survivor and therapist perspective. This is a qualitative study, which utilized semistructured individual interviews. Transcripts were analyzed using interpretative phenomenological analysis (IPA) to identify recurrent themes. A final sample of n = 16 patients and n = 5 facilitators completed the interview. Main change processes identified by survivors were as follows: self versus others, trust versus threat, confrontation versus avoidance, and "patching up" versus true healing. Therapeutic processes identified by therapist facilitators included managing group dynamics, unpredictability and uncertainty, and process versus content. The proposed framework explains therapeutic change in group therapy in relational terms, that is, therapeutic dissonance, the dynamic interaction of self and experience as well as building empathic trusting relations. The importance of managing dissonance to aid personally meaningful recovery was highlighted. These findings have implications for the usefulness of relational and person-centered approaches to clinical practice in the area of interpersonal and complex trauma, especially in the early identification, prevention, and management of dropouts.

Transitions from child to adult health care for young people with intellectual disabilities: A systematic review.

AIMS: To examine the experiences of health transitions for young people with intellectual disabilities and their carers and identify the implications for nursing practice. DESIGN: A systematic review and critical appraisal of qualitative, quantitative, and mixed methods studies. DATA SOURCES: A search of the relevant literature published 2007-2017 was carried out in AMED, ASSIA, CINAHL, MEDLINE, PsycINFO, PubMed, and Science Direct Sociological Abstracts databases. REVIEW METHODS: A total of 12 of 637 papers identified in the search met the inclusion criteria for this review. A narrative review of the papers was undertaken by synthesizing the key findings and grouping them into concepts and emergent themes. RESULTS: Four main themes were identified: (a) becoming an adult; (b) fragmented transition process and care; (c) parents as advocates in emotional turmoil; and (d) making transitions happen. CONCLUSION: The range of issues that have an impact on the transition from child to adult health services for young people with intellectual disabilities and their carers raise important implications for policy development, nursing practice, and education.

Suicide risk assessment in the emergency department: An investigation of current practice in Scotland.

BACKGROUND: Suicide is a global public health issue. Approximately one third of individuals who complete suicide have attended an emergency department in the year preceding their death. The aim of this study was to investigate current suicide risk assessment practices across emergency department clinicians in Scotland. METHODS: A mixed-methods design was employed. A total of 112 surveys for emergency department clinicians were posted to 23 emergency departments in Scotland between March and September 2016. Follow-up semi-structured interviews were also conducted exploring clinician's experiences of suicide risk assessment. Interviews were analysed using thematic analysis. RESULTS: Fifty-one emergency department clinicians across 17 emergency departments completed the survey. Thirty-five (68.6%) participants were currently using a suicide risk assessment tool; with most using locally developed tools and proformas (n = 20, 62.5%) or the SAD PERSONS scale (n = 13, 40.6%). Remaining participants (n = 16, 31.4%) did not use suicide risk assessment tools during assessment. Variation in practice was found both across and within emergency departments. Six clinicians participated in follow-up interviews, which identified four major themes: Clinician Experiences of Suicide Risk Assessment; Components of Suicide Risk Assessment; Clinical Decision-Making; and Supporting Clinicians. CONCLUSIONS: There is substantial variation in current practice, with around two-thirds of clinicians using a variety of empirically and locally developed tools, and a third using their judgement alone. Clinicians find suicide risk assessment a challenging part of their role and discuss the need for increased training, and appropriate and helpful guidelines to improve practice.

Protective Factors of Suicide and Suicidal Behavior Relevant to Emergency Healthcare Settings: A Systematic Review and Narrative Synthesis of Post-2007 Reviews.

Suicide is a major public health concern and, with recent societal changes, such as economic and technological changes, there may be emerging protective factors that mitigate suicide risk that are unrecognized in emergency healthcare. This systematic review aims to identify protective factors for suicide that can feasibly be assessed in time-limited emergency healthcare settings. A systematic review of reviews was conducted via PsycINFO, CINAHL and Medline (2007-2015). Reviews were assessed for methodological quality using AMSTAR. A total of 24 reviews met the inclusion criteria and 8 were assessed as high quality and included in a narrative synthesis. Known protective factors were identified (e.g., social support), along with emerging protective factors (e.g., internet support). The review synthesizes recent research evidence on protective factors and discusses their relevance to emergency healthcare.

'It's been a long haul, a big haul, but we've made it': hepatitis C virus treatment in post-transplant patients with virus recurrence: An interpretative phenomenological analysis.

The lived experience of both interferon-based and new interferon-free treatments in patients with hepatitis C virus remains understudied. To explore their journey through hepatitis C virus treatment, we interviewed seven post-transplant patients with recurrent hepatitis C virus. Three themes were identified using interpretative phenomenological analysis. Participants reported an ongoing sense of ontological uncertainty characterized by lack of control over their condition and treatment. Furthermore, an apposition of scepticism and hope accompanying each stage of hepatitis C virus treatment was described. A staged approach to psychological intervention tailored to the needs of the patient and their associated 'stage' of hepatitis C virus treatment was recommended.

Risk Factors for Suicide and Suicidal Behavior Relevant to Emergency Health Care Settings: A Systematic Review of Post-2007 Reviews.

Suicide is a global public health problem, and with recent economic and societal changes, there may be emerging risk factors unrecognized by health care professionals. The aim of this systematic review was to update existing suicide risk factor literature applicable to emergency health care settings. A total of 35 articles identified from PsycINFO, CINAHL, and Medline met the inclusion criteria. Results supported the significance of existing suicide risk factors and identified emerging risk factors. The review provides a high-quality update of risk factor literature that could be applied to emergency health care settings; however, further research is needed to confirm emerging risk factors.

The perspectives of stakeholders of intellectual disability liaison nurses: a model of compassionate, person-centred care.

AIMS AND OBJECTIVES: To investigate the experiences of patients with intellectual disabilities, family and paid carers regarding the role of liaison nurses and the delivery of compassionate, person-centred care. From this to propose a model of person-centred care embedded in these experiences. BACKGROUND: People with intellectual disabilities have a high number of comorbidities, requiring multidisciplinary care, and are at high risk of morbidity and preventable mortality. Provision of compassionate, person-centred care is essential to prevent complications and avoid death. DESIGN: A qualitative design was adopted with Interpretative Phenomenological Analysis for data analysis. METHODS: Semistructured interviews and focus groups were conducted. Data were analysed with a focus on compassionate, person-centred care elements and components. Themes were modelled to develop a clinically meaningful model for practice. RESULTS: Themes identified vulnerability, presence and the human interface; information balance; critical points and broken trust; roles and responsibilities; managing multiple transitions; 'flagging up' and communication. CONCLUSIONS: The findings provide the first 'anatomy' of compassionate, person-centred care and provide a model for operationalising this approach in practice. The applicability of the model will have to be evaluated further with this and other vulnerable groups. RELEVANCE TO CLINICAL PRACTICE: This is the first study to provide a definition of compassionate, person-centred care and proposes a model to support its application into clinical practice for this and other vulnerable groups.

The experience of specialist inpatient treatment for anorexia nervosa: A qualitative study from adult patients' perspectives.

This qualitative study aimed to explore experiences of women currently undergoing specialist inpatient treatment for anorexia nervosa. Interviews were carried out with 21 women with a diagnosis of anorexia nervosa from a specialist adult inpatient eating disorder unit. Five master themes emerged using thematic analysis: (1) shifts in control, (2) experience of transition, (3) importance of supportive staff relationships, (4) sharing with peers and (5) process of recovery and self-discovery. Findings suggest that patients experience a process of change and adjustment in relation to levels of perceived personal control, attachment to the treatment environment and a sense of self-identity.

Effectiveness and acceptability of group psychoeducation for the management of mental health problems in survivors of child sexual abuse (CSA).

There has been limited published research on the effectiveness of manualized psychoeducational approaches for the mental health and behavioral problems of child sexual abuse (CSA) survivors. The present study aims to add to the evidence base for the effectiveness and acceptability of such interventions. A total of 37 enrolled into a brief psychoeducation program (i.e., 10 sessions) aiming to help stabilize mental health and behavioral outcomes (e.g., self-harm), while on the waiting list for mental health services. Participants completed a set of self-rated measures at baseline, pre-intervention, post-intervention and 3-month follow-up. Although there was no change over time with regard to general distress, traumatic symptomatology, depression, anxiety, self-esteem, and life satisfaction, completers were less likely to report self-harm and presented with decreased rates of smoking, alcohol and substance misuse, and involvement in illegal and antisocial behaviors at post-treatment and follow-up. Qualitative data also suggested that overall the program is well tolerated by participants, despite the high attrition rate (43%). Although further research is required to establish the efficacy of this intervention, preliminary results indicate that the new intervention may be useful for stabilizing behavioral problems at post-treatment and follow-up. Strategies to improve attrition rates in future research and clinical practice are discussed.

Life satisfaction in people with post-traumatic stress disorder.

BACKGROUND/AIMS: There is limited research on the association between post-traumatic stress disorder (PTSD) and life satisfaction in community samples. We set out to investigate levels of life satisfaction and its demographic, trauma related and clinical predictors in a sample of people with PTSD (n = 46). METHODS: Participants completed a battery of standardised self-report measures including Satisfaction with Life Scale, the PTSD Checklist and The Hospital Anxiety and Depression Scale. RESULTS: Our results indicated that people with moderately severe PTSD in the community are likely to experience lower levels of life satisfaction compared with those with other psychiatric conditions or those without any diagnoses. Multivariate analysis revealed that marital status and trauma symptoms were the only significant predictors of life satisfaction. In specific, being married and presenting with less severe posttraumatic symptomatology were both significantly associated with higher levels of life satisfaction in people with PTSD. CONCLUSIONS: The strong association between traumatic symptomatology and life satisfaction may indicate that routine assessment for life satisfaction or similar positive constructs in people with PTSD, referred for psychological therapies might be useful. Information on positive psychology constructs may facilitate capitalising on clients' strengths and not just on pathology.

A controlled comparison of the effectiveness and efficiency of two psychological therapies for posttraumatic stress disorder: eye movement desensitization and reprocessing vs. emotional freedom techniques.

The present study reports on the first ever controlled comparison between eye movement desensitization and reprocessing (EMDR) and emotional freedom techniques (EFT) for posttraumatic stress disorder. A total of 46 participants were randomized to either EMDR (n = 23) or EFT (n = 23). The participants were assessed at baseline and then reassessed after an 8-week waiting period. Two further blind assessments were conducted at posttreatment and 3-months follow-up. Overall, the results indicated that both interventions produced significant therapeutic gains at posttreatment and follow-up in an equal number of sessions. Similar treatment effect sizes were observed in both treatment groups. Regarding clinical significant changes, a slightly higher proportion of patients in the EMDR group produced substantial clinical changes compared with the EFT group. Given the speculative nature of the theoretical basis of EFT, a dismantling study on the active ingredients of EFT should be subject to future research.