Supportive use of digital technologies during transition to adult healthcare for young people with long-term conditions, focusing on Type 1 diabetes mellitus: A scoping review.

Type 1 diabetes mellitus (T1DM) is the second most common chronic or long-term condition (LTC) affecting young people (YP); when transitioning from paediatric to adult healthcare, young people with LTCs such as T1DM are expected to self-manage medication, diet and clinical appointments. This scoping review aimed to analyse research examining ways digital health technologies were used to support YP with LTCs during transition from paediatric to adult healthcare and to establish YP's needs, experiences and challenges when transitioning. We aimed to identify knowledge gaps and inform development of a novel chatbot with components such as avatars and linked videos to help YP with T1DM gain self-management confidence and competence during transition. Nineteen studies identified through searching five electronic databases were included in this review. A combination of digital health technologies was used to support transition of YP with LTCs to adult healthcare. Barriers to successful transition were reported and YP described the importance of social relationships and transition readiness and expressed the need for individualised interventions that acknowledge social factors such as work and college. No supportive chatbots with components to help YP with T1DM were identified. This contribution will inform future development and evaluation of such a chatbot.

'It is easier to not allow them to see your disability straight away, to see you as a person': An Interpretative Phenomenological Analysis of video gaming from the perspectives of men with Duchenne Muscular Dystrophy.

BACKGROUND: Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. AIM: To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy. DESIGN: Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy. SETTING/PARTICIPANTS: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study. RESULTS: Five themes were developed; 'gamer as a shared and accepted identity', 'an existential and bodily escapism', 'introspection through video gaming', 'video gaming as a release' and 'when life gives you few choices-video game'. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy. CONCLUSIONS: An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy.

Help-Seeking for Mental Health Issues in Professional Rugby League Players.

BACKGROUND: Despite the prevalence and negative consequences of mental health issues among elite athletes, studies suggest many do not seek professional help. Understanding barriers and facilitators to help-seeking is imperative to reduce the burden of mental health symptoms and disorders. AIMS: This study aimed to elucidate factors associated with actual help-seeking behavior in professional rugby football league (RFL) players in England and one club in France. DESIGN: A mixed-methods cross-sectional online survey design was used, and completed by 167 professional RFL players. METHODS: The survey consisted of measures of mental health, perceived psychological stress, athletic identity, knowledge of player welfare, and actual help-seeking. Additionally, one open-ended question allowed free-text comments about barriers to help-seeking. RESULTS: Those who had sought help reported significantly higher psychological stress compared to those who had not sought help. Help-seeking was associated with better mental health literacy and higher perceived psychological stress in a multivariate analysis. The qualitative analysis revealed a number of perceived barriers to help-seeking, of which lower mental health literacy and stigma were the most prominent. CONCLUSION: In one of the first studies to examine actual help-seeking behavior, professional rugby players who had sought help for mental health and personal issues were characterized by having greater mental health literacy and experiencing greater psychological stress. Players also identified feelings of embarrassment, pride, fear and shame act as barriers to seeking help for mental health issues. These results suggest focusing on increasing mental health literacy and reducing stigma may increase help-seeking behavior for mental health symptoms.

Grief among Neonatal Intensive Care Nurses.

BACKGROUND: Nurses working in the high-stress environment of the neonatal intensive care unit (NICU) are at high risk of experiencing grief after death of a baby. DESIGN: Using a quantitative cross-sectional design, a convenience sample of nurses working in a Level IV NICU in Northern California, United States completed online surveys. Level of grief among NICU nurses, perceptions of grief support available at their institution, and past and future grief coping methods were assessed. PARTICIPANTS: A diverse sample of 55 NICU nurses, mean age 45.5 (SD = 11.7) years. SETTING: A high-acuity NICU in one large Northern California hospital. METHODS: Participant demographic data and the Revised Grief Experience Inventory were completed online. RESULTS: Total grief scores ranged between 22 and 82 with a mean of 46.9 (SD = 17.4). Sixty percent (n = 33) moderately/strongly disagreed on adequacy of current grief support services at their institution and 81% (n = 45) reported hospital staff could benefit from additional grief support. Nurses' past grief support included family, friends, and church. Future grief resources would include family, friends, and co-workers. Participants indicated need for debriefing and additional nurse staffing resources at the time of a patient death. CONCLUSIONS: Neonatal intensive care unit nurses in our study reported experiencing grief. Debriefing and bereavement support may be helpful for nurses working in high-stress environments where there is a higher likelihood of patient death.

Meaning making And Generativity In Children and Young people with Life limiting conditions (MAGICYL).

EBN engages readers through a range of Online social media activities to debate issues important to nurses and nursing. EBN Opinion papers highlight and expand on these debates.

Social media use in adolescents and young adults with serious illnesses: an integrative review.

OBJECTIVES: Adolescents and young adults with life-limiting or life-threatening conditions are often socially isolated because of the demands of their illness. Although adolescents and young adults have a noticeable online and social media presence, their motivations for using social media remain unclear. This article aims to summarise empirical research undertaken about how and why social media is used by adolescents and young adults with life-limiting or life-threatening conditions. METHODS: An integrative literature review was undertaken. Key healthcare research databases including CINHAL, MEDLINE and PSYCHINFO were searched for empirical studies reporting the use of social media by adolescents and young adults with life-limiting or life-threatening conditions. Fifteen articles met the inclusion criteria; included articles were quality appraised and a thematic synthesis undertaken to identify key themes. RESULTS: The reasons why adolescents and young adults with life-limiting or life-threatening conditions use social media are diverse, with differences relating to age and gender. However, this population in general uses social media to connect with others who have similar lived experiences. CONCLUSION: Social media platforms can be useful adjuncts to the care of adolescents and young adults with life-limiting or life-threatening conditions. However, current evidence is dominated by studies on social media use by adolescents and young adults with cancer. More research is required to gain a holistic understanding of how and why social media is used by this population and its perceived benefits and limitations.

Dignity therapy interventions for young people in palliative care: a rapid structured evidence review.

BACKGROUND: Dignity therapy is becoming established in adult settings, with research supporting its effectiveness. AIMS: This article aims to summarise and synthesise the research that has explored dignity therapy and related meaning-making interventions in palliative care with young people. METHODS: A rapid structured review was undertaken. Quality appraisal was based on the randomised control trial or cohort study Critical Appraisals Skills Programme (CASP) tool. RESULTS: Four studies met the inclusion criteria; one focused on young people (7-17 years), the other three included young people but mean ages were 50-70 years. Dignity therapy was found to improve aspects of wellbeing for the patient and was perceived as helpful for the family. CONCLUSIONS: Dignity therapy is well received, with improvements in measures of wellbeing. However, few studies have included young people (24 years and below). This highlights a clear gap in the literature, suggesting the need to develop and evaluate a dignity therapy or related meaning-making intervention to support young people.

Mobilising identity through social media: psychosocial support for young people with life-limiting conditions.

EBN engages readers through a range of Online social media activities to debate issues important to nurses and nursing. EBN Opinion papers highlight and expand on these debates.

There will be times when nurses can respond.

The spiritual or existential side of palliative care is recognised as one of the most important and least understood aspects ( Baird 2016 ) of this type of care. It is also regarded as one of the most difficult areas to communicate about ( Hexem et al 2011 ).

The experiences of patients and carers in the daily management of care at the end of life.

BACKGROUND: Home is the preferred location for most people with an advanced disease and at the end of life. A variety of care professionals work in community settings to provide support to this population. Patients and their spouses, who also care for them (spouse-carers), are rarely accompanied by these sources of support at all times, and have to manage independently between their contact with care professionals. AIM: To explore how patients and spouse-carers manage their involvement with care professionals in the community setting. METHOD Interpretive phenomenology informs the design of the research, whereby 16 interviews were conducted with the patients and spouse-carers. Interviews were recorded and transcribed verbatim. Data were analysed using phenomenological techniques including template analysis. FINDINGS: Patients and spouse-carers were interdependent and both parties played a role in co-ordinating care and managing relationships with professional care providers. The patients and spouse-carers actively made choices about how to manage their situation, and develop and modify managing strategies based on their experiences. CONCLUSIONS: When daily management is effective and care professionals acknowledge the dyadic nature of the patient and spouse-carer relationship, people have confidence in living with advanced disease.

Sharing the care: the key-working experiences of professionals and the parents of life-limited children.

AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric palliative care professionals, and interviews were conducted with 20 parents of children with LLCs. FINDINGS: Parents' expectations for support were raised by the diagnosis, but the reality could disappoint, which put pressures on professionals. Current service designs with respect to key working did not always coincide with family preferences. Both parents and professionals found that the care journey required them to shift personas to respond to different contexts. CONCLUSIONS: The findings are limited by the sample characteristics, but they provide insight for current policy and practice initiatives. The key worker needs to be mindful of historical care arrangements and be prepared to step into the family 'team' arrangements.

Centrosomal protein of 192 kDa (Cep192) promotes centrosome-driven spindle assembly by engaging in organelle-specific Aurora A activation.

Centrosomes are primary microtubule (MT)-organizing centers (MTOCs). During mitosis, they dramatically increase their size and MT-nucleating activity and participate in spindle assembly from spindle poles. These events require the serine/threonine kinase, Aurora A (AurA), and the centrosomal protein of 192 kDa (Cep192)/spindle defective 2 (Spd-2), but the underlying mechanism remains unclear. We have found that Cep192, unlike targeting protein for Xklp2 (TPX2), a known MT-localizing AurA activator, is an AurA cofactor in centrosome-driven spindle assembly. Cep192, through a direct interaction, targets AurA to mitotic centrosomes where the locally accumulating AurA forms homodimers or oligomers. The dimerization of endogenous AurA, in the presence of bound Cep192, triggers potent kinase activation that, in turn, drives MT assembly. Depletion of Cep192 or specific interference with AurA-Cep192 binding did not prevent AurA oligomerization on MTs but abrogated AurA recruitment to centrosomes and its activation by either sperm nuclei or anti-AurA antibody (αAurA)-induced dimerization. In these settings, MT assembly by both centrosomes and αAurA-coated beads was also abolished or severely compromised. Hence, Cep192 activates AurA by a mechanism different from that previously described for TPX2. The Cep192-mediated mechanism maximizes AurA activity at centrosomes and appears essential for the function of these organelles as MTOCs.

The lived experience of parenting a child with a life-limiting condition: a focus on the mental health realm.

OBJECTIVE: As medical technology has improved, there has been a marked increase in the numbers of children with life-limiting conditions being managed in the community. Few studies have evaluated the life worlds of the parents of these children. However, there have been studies that have reported feelings of isolation and depression among mothers. This article reports a study that highlights the mental health implications of the lived experience of parenting a child with a life-limiting condition. METHOD: Semistructured interviews were conducted with 10 parents of children with life-limiting conditions and analyzed using a phenomenological method. RESULTS: The essential meaning of the phenomenon "the lived experience of parenting a child with a life limiting condition" is understood as a full-time emotional struggle involving six continuous constituents: inner drive, feeling responsible, psychological effects, threatened self image, social withdrawal, and a fear of reaching the bottom line. SIGNIFICANCE OF RESULTS: Very little clinical attention is focused upon the wider issues that affect parents dealing with caring for a child with a life-limiting condition.