We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.
To save content items to your account,
please confirm that you agree to abide by our usage policies.
If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account.
Find out more about saving content to .
To save content items to your Kindle, first ensure no-reply@cambridge.org
is added to your Approved Personal Document E-mail List under your Personal Document Settings
on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part
of your Kindle email address below.
Find out more about saving to your Kindle.
Note you can select to save to either the @free.kindle.com or @kindle.com variations.
‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi.
‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.
Caregivers can play an important role in supporting and caring for people with progressive, life-threatening, or debilitating conditions. However, this supportive role can expose caregivers to various detrimental financial, physical, and psychosocial issues. When evaluating medical technologies for reimbursement decisions, health technology assessment (HTA) agencies typically focus on the treatment’s impact on patients and ignore or downplay the impact on caregivers. Including caregiver impacts within a wider societal perspective may better enable health systems to maximize health benefits from available resources. However, the lack of clear guidance or methodological recommendations from decision makers on the inclusion of caregiver impacts limits the number of HTA submissions that consider these effects. We outline a conceptual framework based on intensity and duration of caregiving to guide researchers, industry, and decision makers when developing policies for the inclusion of caregiver outcomes and justify their inclusion based on expected caregiver burden in identified circumstances.
Various studies have highlighted the increased incidence and symptoms of depression and anxiety in paediatric cancer survivors (PCS). Yet no meta-analysis has focused on post-traumatic stress disorder (PTSD) or post-traumatic stress symptoms (PTSS) in PCS and their family nucleus.
Aims
To evaluate the overall risk of PTSD and severity of PTSS in PCS and their family nucleus. Secondary objectives include identifying potential risk factors of PTSD and high PTSS.
Method
We systematically searched PubMed, Embase and PsycINFO for studies comparing the risk of PTSD and PTSS severity among PCS, their family nucleus and non-cancer controls. PRISMA reporting guidelines were followed. Random effects meta-analyses and meta-regressions were conducted.
Results
From 1089 records, we included 21 studies. PCS have an increased risk of PTSD (risk ratio 2.36, 95% CI 1.37–4.06) and decreased PTSS severity (standardised mean difference −0.29, 95% CI −0.50 to −0.08). Subgroup analyses of other categorical study-level characteristics revealed that female PCS who were older at diagnosis and data collection had a significantly higher risk of PTSD. Meta-regression were insignificant. Family nucleus did not show a significantly increased risk of PTSD (risk ratio 1.13, 95% CI 0.59–5.00) and PTSS severity (standardised mean difference 0.53, 95% CI −0.00 to 1.06). Systematically reviewing studies on the family nucleus found that the majority reported a significantly increased risk of psychological trauma compared with the comparator. Lower education, income and social status were also risk factors.
Conclusions
Timely identification and interventions are imperative for policy makers and healthcare providers to prevent trauma from worsening in this population group.
Child and adolescent mental health service in-patient beds are unevenly spread throughout England. Where demand outstrips bed availability, young people may be admitted at-distance or to adult psychiatric wards. The COVID-19 pandemic added pressures to already overstretched services. Understanding experiences during this period is vital to inform strategies for future emergencies.
Aims
To investigate the impact of the COVID-19 pandemic on admissions to local, at-distance or adult psychiatric units, from the perspectives of young people, parents/carers and healthcare professionals.
Method
Multi-methods data were collected from February 2021 to September 2022, as part of the Far Away from Home research programme. A 13-month national surveillance study collected information about admissions to general adolescent units >50 miles from home, out-of-region or to adult psychiatric units. Free-text data from respondents (n = 51) were analysed using content analysis. Interviews with young people (n = 30), parents/carers (n = 21) and healthcare professionals (n = 68) were analysed using thematic analysis.
Results
Restrictions during the COVID-19 pandemic affected young people's contact with others; the requirement to self-isolate on admission and following overnight leave felt distressing, and visiting was limited. This disincentivised overnight leave, leading to some discharges being delayed and others feeling rushed and high risk. The COVID-19 pandemic also accelerated the introduction of virtual meetings, enabling community teams and families to be more involved in therapies, meetings and decision-making.
Conclusions
Restrictions imposed during the COVID-19 pandemic were often negatively perceived. However, the increased use of technology was felt to be positive, widening inclusion and mitigating some negative effects of distance on admissions.
Why is it so difficult for older women in our society to feel that they are seen and heard? What matters in our society is not the quality of a woman’s mind, but her appearance of aging. Yet older women are still trying to find meaning in life, despite the impact on their mental and physical health of the menopause, children leaving home, retirement from work, problems in relationships, caring for others and coping with chronic ill health. Women carry a heavy burden of intergenerational caring – for partners, parents, children and grandchildren. As they age, women experience sequential losses in life, of roles that have been important to us. Suicide rates are rising in older women for reasons unknown, and depression can be more severe. Electroconvulsive therapy (ECT) can be life-saving. Alzheimer’s disease is twice as common in women, but we do not know why. Given the massive impact of dementia on women, research is still inadequately funded. Together with younger women we must consider what a feminist old age might look like and, as we age, work at staying engaged with the world. There are things older women can both share with, and learn from, younger women.
The COVID-19 pandemic significantly impacted the mental health of adults with intellectual and developmental disabilities (IDD). During this period of uncertainty and need for up-to-date information, various virtual training programmes demonstrated the role of tele-mentoring programmes.
Aim
The aim of this paper is to describe the educational evaluation of the National Extension for Community Healthcare Outcomes – Adults with Intellectual and Developmental Disabilities (ECHO-AIDD), a programme for service providers working with adults with IDD during COVID-19.
Method
The programme consisted of six sessions, conducted weekly, over two cycles. Each session included didactic teaching by hub team members, COVID-19 news updates, wellness check-ins and a brief mindfulness activity, followed by a 30 to 45 min case-based discussion. The hub structure had an inter-professional approach to team expertise. Those with lived experience were an integral part of the content experts’ hub. Pre-, post- and follow-up evaluation data were collected.
Results
Care providers from health and social care sectors (n = 230) participated in the programme. High levels of engagement and satisfaction were reported. Self-efficacy ratings improved from pre- to post-, and were maintained at 8-week follow-up; improvement from pre- to post- was significant (P < 0.0001).
Conclusion
Exposure to National ECHO-AIDD educational intervention led to improvement in perceived competencies. This study also shows the valuable role of people with lived experience in fostering adaptive expertise in learners. The outreach and scalability support the feasibility of building a national virtual community of practice for IDD service providers. Future studies should focus on studying the impact of these programmes on the health outcomes of people with IDD.
The primary aim of this research was to use a taxonomy of behavior change techniques (BCTTv1) to identify, map, and describe the active components of intervention and comparator groups in studies evaluating the psychological well-being (PWB) of motor neuron disease (MND) carers. Secondary aims were to (a) identify absent active ingredients and (b) explore whether variability in the effectiveness of interventions targeting the PWB of MND carers could be better explained through improved characterization of the active content of these interventions.
Methods
Mixed-methods systematic review based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Content-coding of interventions targeting the PWB of MND carers using BCTTv1 was conducted.
Results
Sixteen manuscripts describing 14 studies were included. Forty-one of the possible 93 behavior change techniques (BCTs, 44%) were identified as active ingredients, while 52 BCTs (56%) were absent. BCTs were identified in all 14 intervention groups and 4 control groups. Four of the 16 overall BCTTv1 categories were absent. Eleven of the 14 studies demonstrated PWB benefits from their interventions.
Significance of results
Identified and absent BCTs and BCTTv1 categories were mapped for all study groups, enabling a transparent characterization of active intervention content associated with positive PWB outcomes. Directions to improve interventions in this nascent field of research included the investigation of relevant untested BCTs in this population and the management of reporting and methodological quality issues.
Supporting a relative living with a psychotic disorder can be uniquely challenging when compared to other health conditions, leaving many family carers isolated and struggling with questions: Why us? How do others cope? Is it my fault? How much more can I take? This collection of personal accounts provides family carers with a helpful framework to make sense of their individual experiences and support their own coping and wellbeing. It details the myriad of positives, challenges and life-changing experiences that families encounter following the development of a psychotic illness in a loved one. The authors of these accounts are varied and include the parents, partners, siblings and children of those experiencing psychosis. This book will also serve as an excellent resource for psychiatrists, psychiatric nurses, psychologists, social workers, GPs and students who should find the book relevant both for their own practice and for those families they support.
Antipsychotics are commonly prescribed to manage the behavioural and psychological symptoms of dementia (BPSD) despite their modest efficacy and significant adverse effects. Psychosocial interventions are recommended as the first-line approach in treating BPSD before considering pharmacological options. A Cochrane Review by Lühnen et al (2023) evaluated the effects of psychosocial interventions on reducing antipsychotic prescription in care homes, and found that no generalisable recommendations can be made based on the currently available evidence. This commentary attempts to critically appraise and add context to the review.
Constipation is overrepresented in people with intellectual disabilities. Around 40% of people with intellectual disabilities who died prematurely were prescribed laxatives. A quarter of people with intellectual disabilities are said to be on laxatives. There are concerns that prescribing is not always effective and appropriate. There are currently no prescribing guidelines specific to this population.
Aims
To develop guidelines to support clinicians with their decision-making when prescribing laxatives to people with intellectual disabilities.
Method
A modified Delphi methodology, the RAND/UCLA Appropriateness Method, was used. Step 1 comprised development of a bespoke six-item, open-ended questionnaire from background literature and its external validation. Relevant stakeholders, including a range of clinical experts and experts by experience covering the full range of intellectual disability and constipation, were invited to participate in an expert panel. Panel members completed the questionnaire. Responses were divided into ‘negative consensus’ and ‘positive consensus’. Members were then invited to two panel meetings, 2 weeks apart, held virtually over Microsoft Teams, to build consensus. The expert-by-experience group were included in a separate face-to-face meeting.
Results
A total of 20 people (ten professional experts and ten experts by experience, of whom seven had intellectual disability) took part. There were five main areas of discussion to reach a consensus i.e. importance of diagnosis, the role of prescribing, practicalities of medication administration, importance of reviewing and monitoring, and communication.
Conclusions
Laxative prescribing guidelines were developed by synthesising the knowledge of an expert panel including people with intellectual disabilities with the existing evidence base, to improve patient care.
Carers of people who are involuntarily admitted to hospital report feeling isolated and unsupported by services. The Independent Review of the Mental Health Act (MHA) recommended that carers be supported. However, no research has directly explored what type of support carers would find most helpful when a relative/friend is involuntary admitted.
Aims
To explore carers’ experiences and views around the support they want to receive when their relative/friend is involuntarily admitted under the MHA.
Method
A total of 22 one-to-one interviews with carers were conducted online at three sites across England. Audio recordings of the interviews were transcribed, and data were analysed with thematic analysis.
Results
Four main themes were identified: (a) heterogeneity in the current support for carers, (b) information about mental health and mental health services, (c) continuous support, and (d) peer support and guidance. Carers reported receiving support from professionals, peers and relatives, but this was unstructured, and the extent of support varied across carers. Carers reported wanting more information about mental health services, and for this information to be consistent. Carers also reported wanting emotional support from a single, continuous person, helping them establish a more personal and sincere connection. Peers were also identified as important in the provision of carer support, allowing carers to feel reassured and understood in their experience.
Conclusions
The support received by carers is currently unstructured. To meet the MHA review recommendations, carers of patients who are involuntarily admitted should be allocated a named contact person, ideally with lived experience, to offer information and personal continuity of support.
Good communication lies at the heart of health care. It is key to preventing hospital admission, providing appropriate treatment, and facilitating early discharge. Physical, physiological, sensory, psychological, and social changes associated with ageing impact on communicatio,n so that more time and patience may be needed in encounters with older adults.
This chapter explores factors related to communication: factors that affect the professional, factors that affect the patient, environmental factors, factors in the social context, and non-verbal communication. We examine the impact of advancing age and the needs of particular populations, including people with protected characteristics and people with dementia. Language and communication are a major concern in providing services for black and minority ethnic elders. We explore the need to approach people with sensitivity and understanding.
Older people often present with multiple comorbidities. There is a dynamic interaction between physical and mental health; the two may be impossible to separate. Integrated working and effective liaison between professionals and agencies facilitate person-centred care. In direct communication with older people and their family carers, listening is as important as sharing information.
We include two reflective cases to aid personal learning and conclude with tips to improve communication with older adults and with people with dementia.
Informal carers of people with dementia work with the person with dementia and with professionals to form a secure triangle of care. They make a huge contribution to the health and well-being of individuals and to the economics of care. They have rights recognised in legislation.
Unfortunately, they are often dismayed by the care received by individuals with dementia when admission to a general hospital becomes necessary. This can be avoided and much better outcomes achieved for all concerned if professionals work with informal carers throughout the process of considering admission, effecting admission, and living through admission to discharge or death. Informal carers do not constitute a homogenous group: they have a range of characteristics, strengths, and needs.
Some are old; many have pathology of their own and multiple responsibilities. They need to be listened to and to be respected.
Caregivers are integral to health and social care systems in South Asian countries yet are themselves at higher risk of mental illness. Interventions to support caregiver mental health developed in high-income contexts may be contextually inappropriate in the Global South. In this mixed-methods study, we evaluated the implementation and scaling of a locally developed mental health group intervention for caregivers and others in Uttarakhand, India. We describe factors influencing implementation using the updated Consolidated Framework for Implementation Research, and selected implementation outcomes. Key influencing factors we found in common with other programs included: an intervention that was relevant and adaptable; family support and stigma operating in the outer setting; training and support for lay health worker providers, shared goals, and relationships with the community and the process of engaging with organisational leaders and service users within the inner setting. We identified further factors including the group delivery format, competing responsibilities for caregivers and opportunities associated with the partnership delivery model as influencing outcomes. Implementation successfully reached target communities however attrition of 20% of participants highlights the potential for improving outcomes by harnessing enablers and addressing barriers. Findings will inform others implementing group mental health and caregiver interventions in South Asia.
Severe mental disorders – such as schizophrenia, bipolar disorder, and substance use disorders – exert a negative impact not only on affected people but also on their carers. To support carers of people with severe mental disorders, several psychosocial interventions have been developed.
Methods
This systematic review and meta-analysis aimed to assess whether psychosocial interventions for carers of persons with schizophrenia, bipolar disorder, or substance use disorders produce benefit/harm with respect to a series of outcomes – including subjective and objective burden, depressive symptoms, well-being/quality of life, sleep, skills/knowledge, self-efficacy, physical health – as compared to standard support/support as usual or other control conditions.
Results
In carers of persons with schizophrenia, psychoeducational interventions were associated with significant improvement in personal burden, well-being, and knowledge about the illness; and a supportive-educational intervention with an improvement in personal burden. In carers of persons with bipolar disorder, psychoeducational interventions were associated with significant improvement in personal burden and depressive symptoms; family-led supportive interventions with an improvement in family burden; family-focused intervention and online “mi.spot” intervention with a significant reduction in depressive symptoms. Psychosocial interventions used for carers of persons with substance use disorders were found to be overall effective on the level of well-being, but the low number of trials did not allow detection of differences between the various psychosocial interventions.
Conclusions
The quality of the evidence ranged from very low to moderate, suggesting the need for further better-quality research.
As someone who has researched the effects on carers living with people with severe psychiatric disorders, the author describes her own recent experience of being a carer. The article serves as a companion piece to her psychiatrist husband's account of his cognitive decline in Alzheimer's disease.
John Bowlby's ‘Attachment and Loss’ trilogy set the scene for half a century of attachment research and theorising. This article picks out the key themes of his work – the attachment dynamic, the impact of trauma and life events, defensive exclusion, loss and bereavement, and internal working models – and points to their continuing relevance.
Bowlby remained attached to his psychoanalytic roots and conceptualised treatment in terms of one-to-one relationships, albeit acknowledging the need for a family formulation. Bowlby's five therapeutic tasks were never adapted to the current understanding of working with the relationships fostering the development and maintenance of children's attachment strategies. This paper goes through each of Bowlby's five tasks and adapts them to our current understanding of development, with consequences for prioritising family approaches, rather than a secure base alone with a therapist. In doing so I will review the process of achieving security, seeing it as more similar to an allostatic process than a state of homeostasis.
Parent and child mental health has suffered during the pandemic and transition phase. Structured and shared parenting may be intervention targets beneficial to families who are struggling with parent or child mental health challenges.
Aims
First, we investigated associations between structured and shared parenting and parent depression symptoms. Second, we investigated associations between structured and shared parenting and depression, hyperactivity/inattention and irritability symptoms in children.
Method
A total of 1027 parents in two-parent households (4797 observations total; 85.1% mothers) completed online surveys about themselves and their children (aged 2–18 years) from April 2020 to July 2022. Structured parenting and shared parenting responsibilities were assessed from April 2020 to November 2021. Symptoms of parent depression, child depression, child hyperactivity and inattention, child irritability, and child emotional and conduct problems were assessed repeatedly (one to 14 times; median of four times) from April 2020 to July 2022.
Results
Parents who reported higher levels of shared parenting responsibilities had lower depression symptoms (β = −0.09 to −0.32, all P < 0.01) longitudinally. Parents who reported higher levels of shared parenting responsibilities had children with fewer emotional problems (ages 2–5 years; β = −0.07, P < 0.05), fewer conduct problems (ages 2–5 years; β = −0.09, P < 0.01) and less irritability (ages 13–18 years; β = −0.27, P < 0.001) longitudinally. Structured parenting was associated with fewer conduct problems (ages 2–5 years; β = −0.05, P < 0.05).
Conclusions
Shared parenting is beneficial for parent and child mental health, even under chaotic or inflexible life conditions. Structured parenting is beneficial for younger children.
This introductory chapter outlines how children are active agents with motives and intentions, and what practitioners can do to support children’s learning, development and well-being in different age periods. It is therefore relevant for adults who work with children from birth to late adolescence, both within and beyond formal institutions. We also intend it to be useful to researchers and other professionals concerned with children and young people.
Our aim is to look forward toward children’s futures and how they can be supported to benefit from and contribute to what society has to offer. We argue that, by taking children’s intentions and emotions seriously, we can create an education that benefits children across the age periods. When children move through the institutional practices that society creates for them, they will learn, acquire new motives and develop. Therefore, the tools that we offer will allow carers and practitioners to tailor their support to children in different age periods. These ideas underpin a caring relational form of pedagogy, which is particularly but not only, important when children are dealing with changes in society’s expectations for them. These changes occur as they move, for example, between family, day-care or school, and when new challenges arise in familiar situations.
We aimed to establish cut-off scores to stage dementia on the Addenbrooke's Cognitive Examination-III (ACE-III) and the Mini-Addenbrooke's Cognitive Examination (M-ACE) compared with scores traditionally used with the Mini-Mental State Examination (MMSE). Our cross-sectional study recruited 80 patients and carers from secondary care services in the UK.
Results
A score ≤76 on the ACE-III and ≤19 on the M-ACE correlated well with MMSE cut-offs for mild dementia, with a good fit on the receiver operating characteristic analysis for both the ACE-III and M-ACE. The cut-off for moderate dementia had lower sensitivity and specificity. There were low to moderate correlations between the cognitive scales and scales for everyday functioning and behaviour.
Clinical implications
Our findings allow an objective interpretation of scores on the ACE-III and the M-ACE relative to the MMSE, which may be helpful for clinical services and research trials.