Publications by authors named "Anna Roach"

Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.

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Background And Aims: Low-intensity psychological interventions are effective for children and young people (CYP) with mental health difficulties and can help bridge the demand-capacity gap. Despite increasing awareness, training and use of low-intensity psychological interventions, it is not yet understood what is being implemented in clinical practice in the UK and the associated evidence base.

Method: This paper presents two studies; first, a national survey (=102) of practitioners to identify low-intensity psychological interventions currently delivered in practice and second, an exploration of the availability and the strength of empirical support (characterised as 'gold', 'silver' and 'bronze') of low-intensity CBT interventions for CYP.

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Background: Despite the high prevalence of mental health difficulties in children and young people with long-term health conditions (LTCs), these difficulties and experiences are often overlooked and untreated. Previous research demonstrated the effectiveness of psychological support provided via a drop-in mental health centre located in a paediatric hospital. The aim of this prospective non-randomised single-arm multi-centre interventional study is to determine the clinical effectiveness of drop-in mental health services when implemented at paediatric hospitals in England.

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Article Synopsis
  • The study explores how to effectively implement person-centred outcome measures in palliative care for children with life-threatening or life-limiting conditions, as current evidence is limited compared to adult care.
  • Interviews with 26 children, 40 parents, 13 siblings, 15 healthcare professionals, and 12 health commissioners revealed strong support for such measures, highlighting benefits like improved communication and prioritization of patient needs.
  • Identified challenges include potential increased staff workload, risks around data usage, and barriers such as privacy concerns and the need for child-friendly language, while facilitators include clear communication of benefits and trusted professional support during the process.
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Article Synopsis
  • Children and young people with life-limiting conditions express their experiences using a mix of medical terms and personal language, indicating a deep understanding of their health.
  • A study involving 26 participants aged 5-17 revealed that they describe their condition through comparisons and metaphors, highlighting feelings of loss and isolation compared to peers.
  • By focusing on how these young individuals articulate their experiences, healthcare professionals can have more meaningful discussions that address their unique needs and concerns.
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A recent national survey of bereaved partners found high levels of complicated grief and psychological distress, with evidence that loneliness and isolation may contribute to these outcomes. However, the mechanisms of action for this have not been explored. To advance grief theory this paper reports analysis of the survey free-text data to examine the relationship between social support and emotional responses to bereavement.

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Siblings of children with long-term conditions (LTCs) can have significantly elevated mental health needs, but these are often overlooked. A pragmatic single-arm feasibility pilot assessed feasibility, acceptability and preliminary effectiveness of a drop-in centre in a paediatric hospital addressing mental health needs of patients with LTCs, their carers and siblings. The drop-in centre accepted self-referral and supplemented existing provision offering a suite of interventions, including signposting, diagnostic assessments and/or guided self-help.

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Objectives: To systematically review 1-year recovery rates for young people experiencing depression and/or anxiety who are not receiving any specific mental health treatment.

Design: Systematic review and meta-analysis.

Data Sources: MEDLINE, Embase, PsycINFO, Web of Science and Global Health were searched for articles published from 1980 through to August 2022.

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Background: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities.

Objectives: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members.

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Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer.

Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions.

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Introduction: Many children fail to receive the mental health treatments they need, despite strong evidence demonstrating efficacy of brief and low-intensity psychological interventions. This review identifies the barriers and facilitators to their implementation.

Sources Of Data: PsycInfo, EMBASE and Medline were searched and a systematic approach to data extraction using Normalization Process Theory highlighted key mechanisms and contextual factors.

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Background: Healthcare organisations have legal and ethical duties to reduce inequalities in access to healthcare services and related outcomes. However, lesbian, gay, bisexual and/or transgender (LGBT+) people continue to experience and anticipate discrimination in health and social care. Skilled communication is vital for quality person-centred care, but there is inconsistent provision of evidence-based clinician education on health needs and experiences of LGBT+ people to support this.

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Background: Support from social networks is vital after the death of a partner. Lesbian, gay, bisexual and/or transgender (LGBT+) people can face disenfranchisement and isolation in bereavement. The Acceptance-Disclosure Model (of LGBT+ bereavement) posits that experiences are shaped by the extent to which individuals feel able to disclose their bereavement to others, and whether that loss is acknowledged appropriately.

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Unlabelled: This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK.

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The endoplasmic reticulum (ER) houses sensors that respond to environmental stress and underly plants' adaptative responses. These sensors transduce signals that lead to changes in nuclear gene expression. The ER to nuclear signaling pathways are primarily attributed to the unfolded protein response (UPR) and are also integrated with a wide range of development, hormone, immune, and stress signaling pathways.

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Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been further amplified by the coronavirus disease 2019 pandemic. Online breathlessness interventions have been proposed to fill this gap, but need development and evaluation based on patient preferences and choices.

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Background: Data suggest poorer bereavement outcomes for lesbian, gay and bisexual people, but this has not been estimated in population-based research. This study compared bereavement outcomes for partners of same-gender and different-gender decedents.

Methods: In this population-based, cross-sectional survey of people bereaved of a civil partner or spouse 6-10 months previously, we used adjusted logistic and linear regression to investigate outcomes of interest: (1) positive screen on Inventory of Complicated Grief (ICG), (2) positive screen on General Health Questionnaire (GHQ), (3) grief intensity (ICG) and (4) psychiatric symptoms (GHQ-12).

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Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations.

Objectives: To explore the impact of the COVID-19 pandemic and lockdowns on this population.

Methods: Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes.

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Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related disability. Breathlessness support services are effective; however, reach and access are limited. Delivering online breathlessness interventions may build capacity and resilience within health systems to tackle chronic breathlessness through supported self-management.

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Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research.

Aim: To plan and deliver a Young People's Advisory Group in palliative care and health research at a secondary school.

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Importance: Eating disorders are serious mental disorders with increasing prevalence. Without early identification and treatment, eating disorders may run a long-term course.

Objective: To characterize any associations among disordered eating behaviors (DEBs) and other mental health disorders and to identify early associations with the development of symptoms over time.

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