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)

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.

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.

Development of a cross-cultural HPV community engagement model within Scotland.

OBJECTIVE: To examine cultural barriers and participant solutions regarding acceptance and uptake of the human papillomavirus (HPV) vaccine from the perspective of Black African, White-Caribbean, Arab, Indian, Bangladeshi and Pakistani young people. METHODS: In total, 40 young people from minority ethnic communities in Scotland took part in a qualitative study, involving seven focus groups and four paired interviews, to explore their views and experiences of the HPV vaccine. Using critical discursive psychology, the analysis focused on young people's accounts of barriers and enablers to information, access and uptake of the HPV vaccination programme. RESULTS: Participants suggested innovative strategies to tackle intergenerational concerns, information design and accessibility, and public health communications across diverse contexts. A cross-cultural community engagement model was developed, embracing diversity and contradiction across different ethnic groups. This included four inter-related strategies: providing targeted and flexible information for young people, vaccine provision across the life-course, intergenerational information and specific cross-cultural communications. CONCLUSION: This is the first HPV cross-cultural model inductively derived from accounts of young people from different ethnic communities. We recommend public health practitioners and policymakers consider using the processes and strategies within this model to increase dialogue around public engagement, awareness and receptivity towards HPV vaccination.

Fluid role boundaries: exploring the contribution of the advanced nurse practitioner to multi-professional palliative care.

AIMS AND OBJECTIVES: To evaluate the introduction of Advanced Nurse Practitioners in a specialist, multi-professional palliative care context. The objective is to explore the core domains and competencies of the advanced nurse practitioner role in a multi-professional palliative care context. BACKGROUND: New models of health care and service delivery are emerging alongside expanded levels of autonomy, skills and decision-making for nurses and midwives. This has resulted in some confusion in the health service community internationally about the professional role and scope of the advanced nurse practitioner. DESIGN: A qualitative evaluation study (n = 21). METHODS: Three phases of data collection were conducted over 10 months. Twenty-one participants took part from a specialist palliative care unit in one health board in a U.K. region spanning ANPs (n = 2) multi-professional staff (n = 14) and patients/carers (n = 5). Data collection methods included individual and focus group interviews with key stakeholders and observation of the advanced nurse practitioners at work and their reflexive diaries. RESULTS: The findings of this evaluation demonstrate that if the advanced nurse practitioner role can flourish it has the potential to shape 'new identities', re-construct the boundaries of nursing roles and emphasise the relationship based elements of excellent nursing work. CONCLUSIONS: The advanced nurse practitioner has the potential to enhance specialist palliative care service delivery through fluid role boundaries. The context in which advanced nurse practitioner roles are developed is important as acceptance of the role is linked to the co-construction of a different nursing identity. Our findings support the need to define, defend and name the work of advanced nursing roles. RELEVANCE TO CLINICAL PRACTICE: The advanced nurse practitioner roles were regarded as providing a unique contribution to service delivery and were characterised by fluid role boundaries which crossed the traditional disciplinary boundaries between nursing and medicine.

Negotiating parental accountability in the face of uncertainty for attention-deficit hyperactivity disorder.

Despite extensive research into attention-deficit hyperactivity disorder (ADHD), parents' constructions of their children's behaviors have received limited attention. This is particularly true outside North American contexts, where ADHD is less established historically. Our research demonstrates how United Kingdom parents made sense of ADHD and their own identities postdiagnosis. Using discourse analysis from interviews with 12 parents, we show that they drew from biological and social environmental repertoires when talking about their child's condition, paralleling repertoires found circulating in the United Kingdom media. However, in the context of parental narratives, both these repertoires were difficult for parents to support and involved problematic subject positions for parental accountability in the child's behavior. In this article we focus on the strategies parents used to negotiate these troublesome identities and construct accounts of moral and legitimate parenting in a context in which uncertainties surrounding ADHD existed and parenting was scrutinized.

'Just that little bit of doubt': Scottish parents', teenage girls' and health professionals' views of the MMR, H1N1 and HPV vaccines.

BACKGROUND: Parental decision making about childhood vaccinations is complex and the vaccination schedule ever-changing. Vaccination may be controversial even in countries with historically high vaccination rates such as Scotland. Health behaviour models have aided understanding of individual vaccine intentions for specific vaccines. These are limited in explaining actual behaviours and are divorced from the impact of socio-cultural contexts on vaccination decision making. PURPOSE: To explore vaccination views in Scotland amongst parents, teenage girls and health professionals across three controversial vaccines: the Measles, Mumps, Rubella (MMR), the Human Papilloma virus (HPV) and the Influenza A (H1N1) vaccine. METHOD: We used qualitative interviews and focus group discussions in a purposive sample of health professionals (n = 51), parents (n = 15) and teenage girls aged 12-15 years (n = 8) about their views of these vaccines. Discussions were analysed using thematic analysis. RESULTS: Two main themes are highlighted: 'vaccine risks revisited' in which we explored how the MMR legacy resurfaced and how worries about vaccine safety permeated the data. 'Vaccine responsibilities' indicated tensions regarding roles and responsibilities for vaccines. An overarching notion of 'just that little bit of doubt' referred to lingering doubts and uncertainties interwoven across the vaccines. CONCLUSIONS: Public health authorities should remain alert towards pervasive vaccine concerns. It is important for authorities to clarify vaccine roles and responsibilities in the face of new and existing vaccines and to acknowledge public concerns regarding vaccine safety.

Young women's constructions of the HPV vaccine: a cross-cultural, qualitative study in Scotland, Spain, Serbia and Bulgaria.

BACKGROUND: Following international trends, the HPV (human papilloma virus) vaccine was introduced in Europe for protection against infection from common strands of the HPV virus which can lead to cervical cancer. Young women aged 18-26 years are at greatest risk of infection by the HPV virus yet have been neglected in research, policy, and practice. PURPOSE: To explore young women's constructions of the HPV vaccine in four European countries with different implementation policies ranging from national school-based programmes, regarded as the gold standard, to regional on-demand and private provision. METHOD: Qualitative methods comprising 11 focus group discussions with 54 young women aged 18-26, in Scotland (n = 10), Spain (n = 25), Serbia (n = 9) and Bulgaria (n = 10). A discursive analysis was conducted, following an initial thematic analysis. RESULTS: Two competing discursive constructions were considered: the 'responsible young woman' discourse was constructed as someone with individual rights to health, choice and discretion along with responsibilities to protect health and make rational decisions. In 'the HPV vaccine: a discourse of exclusion', access to the vaccine, wider health promotion and knowledge was controlled by others which had the potential to undermine the young woman's health. We consider how young women managed this tension through recourse to being health vigilant. CONCLUSION: Qualitative, cross-cultural research highlighted common concerns amongst young European women towards being responsible citizens in the face of their health and highlighted socio-cultural constraints to knowledge and resources. We highlight cross-cultural implications particularly between Western and Eastern European contexts.