Grief and loss in people living with dementia: a review and metasynthesis of qualitative studies.

OBJECTIVES: This review seeks to synthesise qualitative studies that focus on the experience of grief and loss in people living with dementia. METHODS: Included studies were quality appraised, synthesised and analysed using inductive thematic analysis. RESULTS: 19 studies were selected for inclusion in the final review and metasynthesis, including 486 participants (115 participants living with dementia, 152 family carers, 219 professionals). Five key dimensions of grief in people living with dementia were identified during the analysis process: grieving for the person I used to be, grieving for how others see me, grieving for the person I will become, grieving for those who have died and what helps me with my grief. CONCLUSION: It is evident that people living with dementia can experience grief related to a range of previous, current and anticipated losses. Many of the studies included in this review did not directly include people living with dementia in their research and did not ask participants directly about their experience of grief and loss. As grief is a highly personal and individual experience, further research addressing the experience of grief that directly includes participants living with dementia is required, in order to improve awareness of grief-related needs and to develop and deliver support to meet these needs.

Effectiveness of primary care psychological therapy services for treating depression and anxiety in autistic adults in England: a retrospective, matched, observational cohort study of national health-care records.

BACKGROUND: Autistic adults report a higher prevalence of anxiety and depression than adults without identified autism but have poorer access to appropriate mental health care. Evidence-based psychological therapies are recommended in treatment guidelines for autistic adults, but no study has investigated their effectiveness in large samples representative of the autistic population accessing routine care. This study aimed to examine therapy outcomes for autistic adults in a primary care service. METHODS: In this retrospective, matched, observational cohort study of national health-care records, we used the MODIFY dataset that used linked electronic health-care records, including national data, for individuals who accessed psychological therapy in primary care in Improving Access to Psychological Therapies (IAPT) services in 211 clinical commissioning group areas in England, UK. All adults aged 18 years or older who had completed a course of IAPT in 2012-19 were eligible, and were propensity score matched (1:1) with a comparison group without identified autism. Exact matching was used, when possible, for a range of sociodemographic factors. Primary outcomes were routine metrics that have been nationally defined and used to evaluate IAPT treatments: reliable improvement, reliable recovery, and reliable deterioration. Secondary outcomes were calculated pre-post treatment changes in scores for Patient Health Questionnaire-9, Generalised Anxiety Disorder Assessment-7, and Work and Social Adjustment Scale measures. Subgroup analyses investigated differential effects across a range of sociodemographic factors. FINDINGS: Of 2 515 402 adults who completed at least two sessions of IAPT in 2012-19, 8761 had an autism diagnosis (5054 [57·7%] male and 3707 [42·3%] female) and 1 918 504 did not (631 606 [32·9%] male and 1 286 898 [67·0%] female). After propensity score matching, 8593 autistic individuals were matched with an individual in the comparison group. During IAPT treatment, symptoms of depression and generalised anxiety disorder decreased for most autistic adults, but symptoms were less likely to improve in the autism group than in the comparison group (4820 [56·1%] of 8593 autistic adults had reliable improvement vs 5304 [61·7%] of 8593 adults in the matched group; adjusted odds ratio [ORadj] 0·75, 95% CI 0·70-0·80; p<0·0001) and symptoms were more likely to deteriorate (792 [9·2%] vs 619 [7·2%]; ORadj 1·34, 1·18-1·48; p<0·0001). In the comparison group, improved outcomes were associated with employment and belonging to a higher socioeconomic deprivation category, but this was not the case for autistic adults. INTERPRETATION: Evidence-based psychological therapy for depression or anxiety might be effective for autistic adults but less so than for adults without identified autism. Treatment moderators appear different for autistic individuals, so more research is needed to allow for better targeted and personalised care. FUNDING: Alzheimer's Society.

Endings and the end of treatment bell in paediatric cancer treatment for acute lymphoblastic leukaemia: An interpretative phenomenological analysis of children's perspectives.

Advancements in paediatric oncology have made quality of life after cancer increasingly clinically important. Little is currently known about children's experiences of treatment completion and its management. AIM: The current study explores children's experience of ending treatment for Acute Lymphoblastic Leukaemia (ALL), and the meaning it is given, particularly how endings are signified and marked. METHOD: Semi-structured interviews were conducted with seven children who had completed cancer treatment for ALL with good prognoses. Interviews were analysed using Interpretative Phenomenological Analysis. RESULTS: Five superordinate themes were generated: 'the end is always there', 'the punctuation of endings', 'that which is remembered, that which is forgotten', 'the voiced and the unvoiced', and 'freedom from cancer.' CONCLUSION: Children highlighted the importance of punctuating and celebrating the end of their treatment, and the need for doing this in ways that helped them process the complexity of ending active treatment and provides space for their voices.

Self-help interventions to reduce self-stigma in people with mental health problems: A systematic literature review.

People with mental health problems often experience self-stigma, whereby they internalise stereotypic or stigmatising views held by others. Self-stigma is known to have negative effects on self-esteem and self-efficacy and a continuing impact on psychological wellbeing. Self-help interventions designed to reduce self-stigma may have an important contribution to make. This review aimed to provide an overview and critical appraisal of the literature on self-help interventions that target self-stigma related to mental health problems. A systematic review of five electronic databases (PsycINFO, MEDLINE, CINAHL Plus, Scopus and EMBASE) was carried out to identify articles published between January 2007 and July 2019. Eight articles that reported on self-help interventions for self-stigma were identified and evaluated using a combination of quality appraisal and narrative synthesis.