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BACKGROUND: Adverse childhood experiences (ACEs) have been implicated in the aetiology of a range of health outcomes, including multimorbidity. In this systematic review and meta-analysis, we aimed to identify, synthesise, and quantify the current evidence linking ACEs and multimorbidity. METHODS: We searched seven databases from inception to 20 July 2023: APA PsycNET, CINAHL Plus, Cochrane CENTRAL, Embase, MEDLINE, Scopus, and Web of Science. We selected studies investigating adverse events occurring during childhood (< 18 years) and an assessment of multimorbidity in adulthood (≥ 18 years). Studies that only assessed adverse events in adulthood or health outcomes in children were excluded. Risk of bias was assessed using the ROBINS-E tool. Meta-analysis of prevalence and dose-response meta-analysis methods were used for quantitative data synthesis. This review was pre-registered with PROSPERO (CRD42023389528). RESULTS: From 15,586 records, 25 studies were eligible for inclusion (total participants = 372,162). The prevalence of exposure to ≥ 1 ACEs was 48.1% (95% CI 33.4 to 63.1%). The prevalence of multimorbidity was 34.5% (95% CI 23.4 to 47.5%). Eight studies provided sufficient data for dose-response meta-analysis (total participants = 197,981). There was a significant dose-dependent relationship between ACE exposure and multimorbidity (p < 0.001), with every additional ACE exposure contributing to a 12.9% (95% CI 7.9 to 17.9%) increase in the odds for multimorbidity. However, there was heterogeneity among the included studies (I2 = 76.9%, Cochran Q = 102, p < 0.001). CONCLUSIONS: This is the first systematic review and meta-analysis to synthesise the literature on ACEs and multimorbidity, showing a dose-dependent relationship across a large number of participants. It consolidates and enhances an extensive body of literature that shows an association between ACEs and individual long-term health conditions, risky health behaviours, and other poor health outcomes.
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Experiências Adversas da Infância , Multimorbidade , Humanos , Experiências Adversas da Infância/estatística & dados numéricos , Criança , Prevalência , Adulto , AdolescenteRESUMO
BACKGROUND: Multiple long-term conditions-the co-existence of two or more chronic health conditions in an individual-present an increasing challenge to populations and healthcare systems worldwide. This challenge is keenly felt in hospital settings where care is oriented around specialist provision for single conditions. The aim of this scoping review was to identify and summarise published qualitative research on the experiences of hospital care for people living with multiple long-term conditions, their informal caregivers and healthcare professionals. METHODS: We undertook a scoping review, following established guidelines, of primary qualitative research on experiences of hospital care for people living with multiple long-term conditions published in peer-reviewed journals between Jan 2010 and June 2022. We conducted systematic electronic searches of MEDLINE, CINAHL, PsycInfo, Proquest Social Science Premium, Web of Science, Scopus and Embase, supplemented by citation tracking. Studies were selected for inclusion by two reviewers using an independent screening process. Data extraction included study populations, study design, findings and author conclusions. We took a narrative approach to reporting the findings. RESULTS: Of 8002 titles and abstracts screened, 54 papers reporting findings from 41 studies conducted in 14 countries were identified as eligible for inclusion. The perspectives of people living with multiple long-term conditions (21 studies), informal caregivers (n = 13) and healthcare professionals (n = 27) were represented, with 15 studies reporting experiences of more than one group. Findings included poor service integration and lack of person-centred care, limited confidence of healthcare professionals to treat conditions outside of their specialty, and time pressures leading to hurried care transitions. Few studies explored inequities in experiences of hospital care. CONCLUSIONS: Qualitative research evidence on the experiences of hospital care for multiple long-term conditions illuminates a tension between the desire to provide and receive person-centred care and time pressures inherent within a target-driven system focussed on increasing specialisation, reduced inpatient provision and accelerated journeys through the care system. A move towards more integrated models of care may enable the needs of people living with multiple long-term conditions to be better met. Future research should address how social circumstances shape experiences of care.
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Cuidadores , Pessoal de Saúde , Humanos , Atenção à Saúde , Pesquisa Qualitativa , HospitaisRESUMO
INTRODUCTION: Delirium and multiple long-term conditions (MLTC) share numerous risk factors and have been shown individually to be associated with adverse outcomes following hospitalisation. However, the extent to which these common ageing syndromes have been studied together is unknown. This scoping review aims to summarise our knowledge to date on the interrelationship between MLTC and delirium. METHODS: Searches including terms for delirium and MLTC in adult human participants were performed in PubMed, EMBASE, Medline, Psycinfo and CINAHL. Descriptive analysis was used to summarise findings, structured according to Synthesis Without Meta-analysis reporting guidelines. RESULTS: After removing duplicates, 5256 abstracts were screened for eligibility, with 313 full-texts sought along with 17 additional full-texts from references in review articles. In total, 140 met inclusion criteria and were included in the final review. Much of the literature explored MLTC as a risk factor for delirium (n = 125). Fewer studies explored the impact of MLTC on delirium presentation (n = 5), duration (n = 3) or outcomes (n = 6) and no studies explored how MLTC impacts the treatment of delirium or whether having delirium increases risk of developing MLTC. The most frequently used measures of MLTC and delirium were the Charlson Comorbidity Index (n = 98/140) and Confusion Assessment Method (n = 81/140), respectively. CONCLUSION: Existing literature largely evaluates MLTC as a risk factor for delirium. Major knowledge gaps identified include the impact of MLTC on delirium treatment and the effect of delirium on MLTC trajectories. Current research in this field is limited by significant heterogeneity in defining both MLTC and delirium.
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Delírio , Adulto , Feminino , Humanos , Masculino , Envelhecimento/psicologia , Doença Crônica , Comorbidade , Delírio/diagnóstico , Delírio/epidemiologia , Delírio/terapia , Delírio/psicologia , Medição de Risco , Fatores de Risco , Fatores de Tempo , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou maisRESUMO
OBJECTIVE: We aimed to describe the prevalence of unmet rehabilitation needs among a sample of Canadians living with long-term conditions or disabilities during the first wave of the COVID-19 pandemic. DESIGN: Cross-sectional survey. SETTING: Individuals residing in Canada during the first wave of the COVID-19 pandemic. PARTICIPANTS: Eligible participants were Canadians living with long-term conditions or disabilities, 15 years or older living in 1 of the 10 provinces or 3 territories (n=13,487). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: We defined unmet rehabilitation needs as those who reported needing rehabilitation (ie, physiotherapy/massage therapy/chiropractic, speech, or occupational therapy, counseling services, support groups) but did not receive it because of the COVID-19 pandemic. We calculated the national, age, gender, and province/territory-specific prevalence and 95% confidence interval of unmet rehabilitation needs. RESULTS: During the first wave of the pandemic, the prevalence of unmet rehabilitation needs among Canadians with long-term conditions or disabilities was 49.3% (95% confidence interval [CI]; 48.3, 50.3]). The age-specific prevalence was higher among individuals 15-49 years old (55.6%; 95% CI [54.2, 57.1]) than those 50 years and older (46.0%; 95% CI [44.5, 47.4]). Females (53.7%; 95% CI [52.6, 54.9]) had higher unmet needs than males (44.1%; 95% CI [42.3, 45.9]). Unmet rehabilitation needs varied across provinces and territories. CONCLUSIONS: In this sample, almost 50% of Canadians living with long-term conditions or disabilities had unmet rehabilitation needs during the first wave of the COVID-19 pandemic. This suggests that a significant gap between the needs for and delivery of rehabilitation care existed during the early phase of the pandemic.
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COVID-19 , Necessidades e Demandas de Serviços de Saúde , Pandemias , Reabilitação , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Canadá/epidemiologia , COVID-19/epidemiologia , Estudos Transversais , População Norte-Americana , PrevalênciaRESUMO
BACKGROUND: Long Covid is an emerging long-term condition, with those affected raising concerns about lack of healthcare support. OBJECTIVE: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. SETTING AND PARTICIPANTS: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE-ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. RESULTS: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient-HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient-centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. DISCUSSION: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. CONCLUSIONS: This study highlights that despite these interviews being conducted two years after the start of the COVID-19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. PATIENT OR PUBLIC CONTRIBUTION: People with Long Covid advised on all stages of this research.
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COVID-19 , Síndrome de COVID-19 Pós-Aguda , Humanos , COVID-19/epidemiologia , COVID-19/terapia , Pandemias , Serviços de Saúde , Acessibilidade aos Serviços de Saúde , Pesquisa QualitativaRESUMO
BACKGROUND: Young people (YP) with long-term conditions (LTCs) are at greater risk of psychological distress than those without LTCs. Despite this, there is a scarcity of quality digital interventions designed to help improve mental wellbeing in this population. The aim of this study was to determine what YP, parents and health professionals preferred for future interventions. METHODS: Twenty-six YP with asthma, diabetes and/or epilepsy (the three most common LTCs in YP), 23 parents of YP with LTCs and 10 health professionals mainly in paediatric specialisms (total n = 59) took part in an online Delphi study to gain consensus (set at 75% agreement) on four questions across three rounds. Participants ordered psychological themes that may be experienced by YP with LTCs by importance and ranked digital intervention types and delivery modes by importance or usefulness. The most common results were reported if no consensus was reached by round 3. RESULTS: Participants preferred a mobile phone app (73% agreement) and a mixture of one-on-one and group support for an intervention (75% agreement). The two highest ranked psychological themes were anxiety (44%) and wanting to appear 'normal' (38%), and the top intervention type was 'general counselling' (54% agreement). CONCLUSION: There was a clear desire for an app to help with the psychological aspects of living with LTCs and for a combination of one-to-one and group intervention elements. Anxiety and wanting to appear 'normal' might be two closely linked psychological challenges that could be addressed by a single intervention. IMPLICATIONS: The results will be important to consider for a future intervention, although further consultation will be needed for app development. PATIENT OR PUBLIC CONTRIBUTION: Two YP with a LTC provided feedback on the study protocol including the aims and procedures of the project. Another six YP with LTCs were consulted on an early draft of the study questionnaire (the four questions), which was subsequently revised. Once the project began, a patient and public involvement group consisting of two YP with LTCs and one parent of a YP with an LTC gave feedback on the research process, lay report of the results and dissemination plan.
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Emoções , Saúde Mental , Criança , Humanos , Adolescente , Consenso , Técnica Delphi , Ansiedade/terapiaRESUMO
BACKGROUND: Globally, it is estimated that one in three adults live with two or more long-term conditions (multiple long-term conditions, MLTCs), that require self-management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient-healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self-managing MLTCs, amongst people who experience socioeconomic deprivation. METHODS: Semistructured one-to-one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. FINDINGS: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self-management, including social isolation, area-based and economic exclusion, and health-related stigma and (4) adapting self-management strategies, including cost-effective, and culturally/lifestyle appropriate strategies. CONCLUSIONS: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self-management of MLTCs are of great importa. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data.
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Autogestão , Adulto , Humanos , Pesquisa Qualitativa , Reino Unido , Área Carente de Assistência Médica , Fatores SocioeconômicosRESUMO
BACKGROUND: People living with human immunodeficiency virus (HIV) are disproportionately impacted by socioeconomic deprivation and are at increased risk of developing other long-term conditions (LTCs). These illnesses require transformative action to tackle the adverse effects on their health. Data on lived experiences of LTCs among people living with HIV of Black African and Black Caribbean ethnicities are sparse, and how people with LTCs are impacted by social determinants of health (SDoH). METHODS: Through a phenomenological study design this qualitative study, conducted in 2022, comprised four focus group discussions (FGDs) with 20 people of Black ethnicities living with HIV were purposively invited from a community organisation (CO) in London, including four semistructured interviews with CO staff. Following transcription, qualitative data were analysed thematically and measures to validate the findings were implemented. RESULTS: The findings are presented in terms of the following four levels of SDoH: (1) individual determinants (such as the impact of SDoH on lifestyle modification and self-management); (2) interpersonal determinants (such as positive experiences of accessing healthcare for LTCs); (3) clinical determinants (such as care pathway barriers) and (4) systemic determinants (such as systemic barriers related to race/ethnicity). CONCLUSIONS: It is necessary to provide ongoing and interactive education to community members who live with HIV, focusing on risks and management of LTCs. Additionally, individuals would benefit from support to navigate increasingly complex and fragmented health services. Health Service staff require cultural competence when caring for patients of Black African and Black Caribbean ethnicities with complex health and psychosocial needs. PATIENT OR PUBLIC CONTRIBUTION: The research team collaborated with an HIV CO in South London from the very start of the project to agree the study design and learn about the realities of their daily lived experiences. Community collaborators helped to develop the semistructured interview and FGD topic guides, and were directly involved in the data gathering, analysis and validation.
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População Negra , Grupos Focais , Infecções por HIV , Pesquisa Qualitativa , Determinantes Sociais da Saúde , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , População Negra/psicologia , Região do Caribe/etnologia , Doença Crônica/etnologia , Acessibilidade aos Serviços de Saúde , Infecções por HIV/etnologia , Infecções por HIV/psicologia , Londres , Determinantes Sociais da Saúde/etnologia , África/etnologiaRESUMO
BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. RESULTS: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. CONCLUSION: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.
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Cuidadores , Transtornos Mentais , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Doença Crônica , Adulto , Grupos Focais , Inglaterra , Entrevistas como Assunto , IdosoRESUMO
INTRODUCTION: This work describes a secondary analysis of a qualitative data set originally used to understand parent participants' preferences for the design and implementation of a screening programme for paediatric Type 1 diabetes (T1D). From this, their spontaneous preferences for peer support emerged, described here in the context of existing peer support programmes for the newly diagnosed alongside suggestions for their incorporation into screening programmes for T1D and a range of other conditions. METHODS: Data were collected from semi-structured interviews conducted with parents of children aged 3-13 years to explore their expectations, perceptions and preferences of a T1D paediatric screening programme. A secondary analysis of interviews from participants who spontaneously raised preferences for peer support was used to populate a novel framework informed by NHS England's key principles for the same, namely, Shared experiences and reciprocated support, Accessibility and inclusivity and Person-centred and integrated peer support. RESULTS: Parents in 29 of 33 interviews spontaneously described the potential value of peer support if receiving a result indicating a positive (presymptomatic T1D result) from a screening programme. Specifically, the value of 'Shared experiences and reciprocated support' in terms of emotional support and reassurance, and access to more directly interpretable and relevant information related to the condition; 'Accessibility and inclusivity' relating to access to a community of similar individuals, whether in person or online; 'Person-centred and integrated peer-support' and the need for support reflecting the changing need of the child and the integration of peer support with clinical care. CONCLUSIONS: The needs of peer support described by parents involved in T1D paediatric screening appear to be shared with those of families with children diagnosed with a range of life-altering conditions. Although the needs of peer support for paediatric screening may differ across conditions, our findings are a valuable starting point for its design both in T1D and other examples of similar population screening programmes. PATIENT OR PUBLIC CONTRIBUTION: Patients and the public have been involved throughout the design of the ELSA study and have worked with us to inform the study process. They contributed to the design and content of patient-facing materials, the content of our topic guides and the analysis and interpretation of our findings.
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Diabetes Mellitus Tipo 1 , Entrevistas como Assunto , Programas de Rastreamento , Pais , Grupo Associado , Pesquisa Qualitativa , Apoio Social , Humanos , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/diagnóstico , Criança , Pais/psicologia , Masculino , Adolescente , Feminino , Pré-Escolar , InglaterraRESUMO
INTRODUCTION: Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long-term health conditions around the time of pregnancy. METHODS: Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long-term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. RESULTS: Fifty-seven women and 51 healthcare professionals participated. Five themes were identified. Women with long-term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long-term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. CONCLUSION: Pregnant women with long-term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. PATIENT OR PUBLIC CONTRIBUTION: Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.
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Entrevistas como Assunto , Humanos , Feminino , Gravidez , Adulto , Reino Unido , Pesquisa Qualitativa , Múltiplas Afecções Crônicas/terapia , Gestantes/psicologia , Pessoal de Saúde/psicologia , Complicações na GravidezRESUMO
BACKGROUND: Managing a long-term condition requires higher health literacy. Social networks may play a crucial role for self-management. However, the pathway is not entirely understood. This study aimed to examine whether the association between social support and self-rated health is mediated by health literacy among individuals with a long-term condition. METHODS: This cross-sectional study used data from the "How are you?" 2021 survey in Central Denmark Region. Social support was assessed using a single question, health literacy with two dimensions from the Health Literacy Questionnaire (HLQ): 'Understanding health information' and 'Engaging with healthcare providers', and self-rated health with a single question from SF-36. Multiple logistic regression analyses were used to examine the associations, and multiple mediation analyses were performed using the Karlson-Holm-Breen method. RESULTS: A total of 10,787 individuals with a long-term condition were included in the study, whereas 6% (n = 595) reported a low level of social support. Both health literacy scales mediated the association between social support and self-rated health, particularly the ability to engage with healthcare providers, accounting for 25% of the variance. After adjustment for sociodemographic factors, individuals with a low level of social support had significantly higher odds of reporting difficulties in understanding health information (OR 2.53 (95% CI: 1.84-3.48)) and engaging with healthcare providers (OR 3.77 (95% CI: 2.96-4.79)). CONCLUSIONS: Health literacy, particularly the ability to engage with healthcare providers, was a mediator between social support and self-rated health. Additionally, a low level of social support was associated with higher odds of reporting lower health literacy. These findings suggest that strategies to enhance health literacy, improve health outcomes, and reduce health inequities may benefit from strengthening individuals' social network, particularly focusing on those with limited support.
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Letramento em Saúde , Apoio Social , Humanos , Letramento em Saúde/estatística & dados numéricos , Dinamarca , Masculino , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Idoso , Adulto , Doença Crônica , Inquéritos e Questionários , Adulto Jovem , Autorrelato , Nível de SaúdeRESUMO
BACKGROUND: Physical inactivity is a global public health priority. There are known health and well-being consequences of being inactive, and the benefits of being physically active are well established. However, there are persistent inequalities when it comes to how physically active people are, with disabled people, people living with long-term health conditions, and people residing in areas of socio-economic deprivation being particularly affected. Methods such as whole system approaches (WSAs), which are dynamic, multifaceted, and engage all relevant stakeholders, have gained momentum as an approach to address such complex public health problems. However, evidence relating to the implementation of WSAs to address physical inactivity is lacking. The aim of the Prevention and Enablement Model (PEM) was to take a whole system approach in Essex to encourage and support disabled people and/or individuals living with long-term health conditions to be more active, happier, and to live more independently. METHODS: The aim of this study was to explore the enablers, challenges, and reflections associated with the process of designing and implementing the PEM. Semi-structured interviews (n = 12) were used to collect data from people involved in the PEM's design, implementation and/or delivery. Data was analysed using Braun and Clarke's reflexive thematic analysis. RESULTS: Four themes were identified: (1) Working collaboratively: Specific enablers of time and space were identified as important in the planning and implementation of a WSA (2) Leadership and planning: Distributed and flexible leadership was identified as central to successful implementation (3) Re-orientating practice: Highlighted the transformative potential of a whole system approach and how it contrasts with conventional work practices, and (4) Reflection and learning: Informing ongoing refinements and further implementation of successful system change. CONCLUSIONS: These findings highlight the challenge and complexity of implementing a WSA that involves diverse stakeholders from across adult social care, the NHS, and the third sector. Several important enablers are identified, such as leadership and planning, and the challenges and discomfort that can arise whilst changing systems. Ongoing efforts are required to ensure that different elements of the system collaborate effectively to address inequalities in physical activity participation, through the implementation of a WSA.
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Pessoas com Deficiência , Comportamento Sedentário , Adulto , Humanos , Saúde Pública , Análise de SistemasRESUMO
OBJECTIVE: The objective of this systematic review and meta-analysis was to evaluate the effectiveness of social prescribing interventions in the management of long-term conditions in adults. DATA SOURCES: Eleven electronic databases were searched for randomised and quasi-randomised controlled trials. REVIEW METHODS: Outcomes of interest were quality of life, physical activity, psychological well-being and disease-specific measures. Bias was assessed with the Cochrane Risk of Bias 2 tool. A narrative synthesis and meta-analysis were performed. RESULTS: Twelve studies (n = 3566) were included in this review. Social prescribing interventions were heterogeneous and the most common risks of bias were poor blinding and high attrition. Social prescribing interventions designed to target specific long-term conditions i.e., cancer and diabetes demonstrated significant improvements in quality of life (n = 2 studies) and disease-specific psychological outcomes respectively (n = 3 studies). There was some evidence for improvement in physical activity (n = 2 studies) but most changes were within group only (n = 4 studies). Social prescribing interventions did not demonstrate any significant changes in general psychological well-being. CONCLUSION: Social prescribing interventions demonstrated some improvements across a range of outcomes although the quality of evidence remains poor.
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Qualidade de Vida , Humanos , Doença Crônica , Adulto , Exercício Físico , Ensaios Clínicos Controlados Aleatórios como Assunto , Apoio SocialRESUMO
BACKGROUND: Interventions that use the Health Action Process Approach (HAPA) model show promise for increasing PA frequency, duration, and intensity. However, there is limited understanding of how HAPA model variables have been operationalized for PA interventions in chronic disease to promote behavior change and sustained PA or whether the phase or continuous form of the HAPA model was used. The aim of this scoping review is to describe how the HAPA model variables for PA interventions were operationalized and provide details of implementation. METHOD: We searched five databases to identify studies published between January 1992 and March 2024. We aimed to describe (1) the characteristics of interventions including setting, delivery mode, duration, and content; (2) which HAPA variables were operationalized and the strategies used; and (3) the physical activity measures and outcome effects. RESULTS: The search identified 23 interventions in 30 papers (12 protocols, 3 quasi-experimental studies, and 15 randomized controlled trials (RCTs)). Seven of the 15 RCTs reported significant positive effects of the HAPA model on PA behavior outcomes. Interventions operationalized between three and nine HAPA constructs showed significant variability in how the HAPA model is used in intervention research. PA measures varied from self-report to validated objective instruments. CONCLUSION: We found a lack of clarity in decisions about which HAPA constructs were included in interventions. The wide variability in operationalized HAPA constructs made it challenging to compare interventions. Researchers should provide more detail about intervention design and implementation procedures to enhance transparency.
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OBJECTIVES: To examine the relationship between ethnicity and experiences of primary care for people with multiple long-term conditions (MLTCs) and assess the relative importance of demographic, practice, and area-level factors as influences on primary care experiences across ethnic groups. STUDY DESIGN: A retrospective study using 2018-19 GP Patient Survey data linked to General Practice Workforce data and small area data published by the Office for National Statistics. METHODS: We conducted multilevel regression analysis to assess the relationship between ethnicity and experience of accessing primary care and interacting with healthcare professionals. We built separate regression models for each outcome and included (i) each covariate separately, (ii) demographic factors and (iii) demographic, practice, and area-level factors. RESULTS: Upon full adjustment Arab, Bangladeshi, Chinese, Indian, Pakistani, other Asian, mixed white and Asian, and other white people with MLTCs have lower levels of satisfaction with primary care access and interacting with healthcare professionals compared with white British people. The influence of demographic, practice and area-level factors is not uniform across ethnic groups; demographic factors account for the inequalities in levels of satisfaction with access to primary care between white British people and Black other, mixed other, mixed white & Black Caribbean and Gypsy & Irish Travellers. However, practice and area-level factors strengthen inequalities in the experience of accessing primary care for Bangladeshi, Indian and Pakistani people. CONCLUSIONS: Given the link between patient satisfaction and patient-related health outcomes, the lower levels of satisfaction with accessing primary care and interacting with healthcare professionals among the aforementioned minoritised ethnic groups are concerning and require further scrutiny. Qualitative studies are required to understand and address the sources of poor experiences in primary care for minoritised people with MLTCs to improve patient-centred healthcare and outcomes.
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Innovative ways of working are emerging in health care to meet the complex needs of people living with multiple long-term conditions. While these initiatives are often measured for their health and economic outcomes, few studies prioritize the patient experience. This qualitative descriptive study is one of a few studies exploring the patient experience of attending a dedicated long-term conditions annual review clinic in a primary care setting in England. The service model aims to provide a person-centered, holistic approach to the management and support of people living with multiple long-term conditions. The study presents findings from in-depth interviews with 12 participants. Data analyzed through framework analysis revealed four themes relating to the patient experience: the clinic as a place, continuity, staying healthy, and partnership opportunities. Results highlight the challenges to providing personalized care. We found that attendance at the clinic prompted self-care behaviors, however, patients wanted a more holistic, integrated, and consistent service that provided continuity of therapeutic relationships that involved them in decision-making and care planning. We conclude that the experience of patients in this study suggests this service model can enable patients to manage their health and improve well-being, however, while a person-centered philosophy may underpin service models, our research shows that ensuring this philosophy is born out in service delivery and recognized by patients is problematic. Therefore, service providers need to recognize the values and perspectives of patients, aligning these with the design and delivery of services.
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BACKGROUND: Where available, Parkinson's Nurse Specialists (PNS) provide a range of care, support, guidance, and advocacy for people with Parkinson's (PwP), and, where appropriate, their care partners (CP). Parkinson's is a complex and progressive condition. Consequently, evaluating health outcomes is not a reliable method to understand the value and impact of PNS. Previous research has identified PNS can improve the subjective well-being of PwP in the community, also that barriers to care include heavy caseloads and a lack of time. Yet little is known about the value of the role of the PNS, particularly about the impact of pharmacological management and review. This research aims to close this research gap by providing explanatory theories of the impact and value of PNS to PwP, their CP, and other professionals. METHODS: A social constructivist grounded theory approach was used. Semi-structured interviews were conducted with three groups, PNS, PwP, and CP. Interviews were analysed using NVivo for coding and categorising and Word for memo-writing. Data was analysed inductively and iteratively to identify contexts, social processes, actions, and behaviours, before final emergent theories were identified. RESULTS: 46 semi-structured interviews (PNS 18, PwP 19, CP 9) led to four data categories and 13 sub-categories that delineated PNS value. (1) Expert Counsel; provision of emotional support, education, and lifestyle guidance; CP inclusion; provision from diagnosis; and across all stages of Parkinson's. (2) Conduit of Care; signposting, referral, and connection to PwP, CP, others; PNS barriers and facilitators; (3) Team/Partnership; continuity and partnership, 'working together'; (4) Pharmacological Support, PNS prescribing; concordance; speed of treatment. Where PNS were accessible they could offer personalised support and partnership, so providing person-centred care that improves health and well-being. CONCLUSION: Where a PNS is accessible due to service availability and manageable caseloads, to provide person-centred care, they deliver several benefits to PwP and CP which improve health and perceived well-being. Where PNS are not available, PwP and CP often struggle to manage their Parkinson's with negative impacts on health and well-being.
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The UK has a growing ageing population with increased prevalence of long-term conditions. It has the potential to overwhelm the country's healthcare system. The COVID-19 pandemic and its risk of transmission provided an opportunity for people with long-term conditions to focus on self-care and for district nurses to promote self-management. Self-management strategies, such as digital technology, motivational interviewing, social prescribing and shared decision-making can assist them in planning a whole-population approach towards managing physical and mental wellbeing. For this to become a reality, investment is needed to educate the patients, their carers, district nurses, multidisciplinary teams and to ensure the sustainability of self-care methods for future practice.
Assuntos
COVID-19 , Enfermagem em Saúde Comunitária , Participação do Paciente , Autogestão , Humanos , Reino Unido , Doença Crônica , SARS-CoV-2 , Autocuidado , PandemiasRESUMO
BACKGROUND: The COVID-19 pandemic caused rapid changes in primary care delivery in the UK, with concerns that certain groups of the population may have faced increased barriers to access. This study assesses the impact of the response to the COVID-19 pandemic on primary care consultations for individuals with multimorbidity and identifies ethnic inequalities. METHODS: A longitudinal study based on monthly data from primary care health records of 460,084 patients aged ≥18 years from 41 GP practices in South London, from February 2018 to March 2021. Descriptive analysis and interrupted time series (ITS) models were used to analyse the effect of the pandemic on primary care consultations for people with multimorbidity and to identify if the effect varied by ethnic groups and consultation type. RESULTS: Individuals with multimorbidity experienced a smaller initial fall in trend at the start of the pandemic. Their primary care consultation rates remained stable (879 (95% CI 869-890) per 1000 patients in February to 882 (870-894) March 2020), compared with a 7% decline among people without multimorbidity (223 consultations (95% CI 221-226) to 208 (205-210)). The gap in consultations between the two groups reduced after July 2020. The effect among individuals with multimorbidity varied by ethnic group. Ethnic minority groups experienced a slightly larger fall at the start of the pandemic. Individuals of Black, Asian, and Other ethnic backgrounds also switched from face-to-face to telephone at a higher rate than other ethnic groups. The largest fall in face-to-face consultations was observed among people from Asian backgrounds (their consultation rates declined from 676 (659-693) in February to 348 (338-359) in April 2020), which may have disproportionately affected their quality of care. CONCLUSIONS: The COVID-19 pandemic significantly affected primary care utilisation in patients with multimorbidity. While there is evidence of a successful needs-based prioritisation of multimorbidity patients within primary care at the start of the pandemic, inequalities among ethnic minority groups were found. Strengthening disease management for these groups may be necessary to control widening inequalities in future health outcomes.