RESUMO
BACKGROUND: Informal, often family carers play a vital role in supporting people living with dementia in the community. With ageing populations, the part played by these carers is increasing making it important that we understand what motivates them to take on the role. This systematic review aimed to identify and synthesise qualitative literature describing what motivates people to care for someone with dementia. METHODS: The review followed the Centre for Reviews and Dissemination (CRD) guidelines. Six electronic databases were searched from their first records until August 2018. Synthesis was narrative. RESULTS: Twenty-six studies fitting the inclusion criteria were identified. Carers described multiple, inter-related motives for caring for someone with dementia. Caring was generally described as a reflection of long-standing family relationships between carers and the care recipients, whether by blood or marriage. Commonly offered motivations included love, reciprocity, filial piety, duty and obligation. CONCLUSIONS: Perhaps the most striking finding was the similarity in these motivations irrespective of gender or relationship with the care recipient. Family relationship and shared history underlay most motivations. Future research should include more longitudinal studies incorporating within study comparisons between different demographic groups to give greater confidence in identifying similarities and differences between demographic groups.
Assuntos
Cuidadores/psicologia , Demência/psicologia , Demência/terapia , Motivação/fisiologia , Pesquisa Qualitativa , Cuidadores/normas , HumanosRESUMO
BACKGROUND: Research regarding speech and language therapy (SLT) for patients in prolonged disorders of consciousness (PDOC) is very limited. The Royal College of Physicians' (RCP) PDOC guideline provides recommendations regarding best practice, but does not give detail about many aspects of assessment and management. As a result, SLTs have little information regarding best practice for this complex patient group. AIMS: To ascertain the degree of consensus amongst expert SLTs regarding SLT best practice for patients in PDOC in order to inform the future development of SLT guidelines. METHODS & PROCEDURES: A two-round modified Delphi technique was used. Participants were recruited from major trauma centres and neurorehabilitation units in England and national SLT clinical excellence networks. To participate, SLTs had to be working on neurosciences, neurosurgery or neurorehabilitation wards that treat adult PDOC patients, or have ≥ 3 years' experience of working with PDOC. The Round 1 questionnaire was developed from the RCP's PDOC guideline and from existing research literature. It included ratings of statements regarding SLT best practice using Likert or temporal scales, with optional written justifications/comments and opportunities for participants to suggest additional statements. The percentage agreement amongst participants was calculated for each Round 1 statement. Written justifications for views were analysed using content analysis. The Round 2 questionnaire contained both quantitative and qualitative feedback from Round 1, allowing participants to reappraise their views. The final degree of consensus was then calculated after completion of both rounds. OUTCOMES & RESULTS: A total of 40 SLTs completed Round 1, with 36 completing Round 2 (90% response rate). Consensus was achieved for 87% (67/77) of statements regarding best practice on a variety of topics including communication, tracheostomy, dysphagia and oral hypersensitivity. The statements represented assessment, management and service delivery components of SLT practice. CONCLUSIONS & IMPLICATIONS: A total of 67 best practice statements were created. The statements provide a useful starting point for the creation of SLT guidelines to support best practice, and also have the potential to be used to advocate for the provision of SLT services for patients in PDOC. Future studies should focus on whether the expert opinion generated here can be borne out in experimental research.
Assuntos
Terapia da Linguagem/normas , Estado Vegetativo Persistente/terapia , Fonoterapia/normas , Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos de Deglutição/diagnóstico , Atenção à Saúde/métodos , Atenção à Saúde/organização & administração , Atenção à Saúde/normas , Técnica Delphi , Humanos , Terapia da Linguagem/métodos , Guias de Prática Clínica como Assunto , Fonoterapia/métodos , Inquéritos e QuestionáriosAssuntos
Demência , Qualidade de Vida , Humanos , Adaptação Psicológica , Estresse Psicológico , Cônjuges , CuidadoresRESUMO
BACKGROUND: Unpaid, informal carers or caregivers play an important role in supporting people living with dementia but the role can be challenging and carers themselves may benefit from support. Alzheimer's, dementia or memory cafés are one such form of support . These cafés are usually provided in the voluntary sector and are a place where people with dementia and those supporting them, usually family carers, can meet with others in similar situations. METHODS: Using semi-structured interviews, this qualitative study explored the experiences of 11 carers from five dementia cafés in and around London, England. RESULTS: Thematic analysis resulted in the identification of four key themes. Cafés provide a relaxed, welcoming atmosphere where carers can go where they feel supported and accepted. Café attendance often brought a sense of normality to these carers' lives. Carers and those they care for look forward to going and often enjoy both the activities provided and socialising with others. Other highlighted benefits included peer support from other carers, information provision and support from the volunteer café coordinators. Despite diversity in how the cafés were run and in the activities offered, there were many reported similarities amongst carers in the value ascribed to attending the cafés. CONCLUSIONS: Dementia cafés appear to be a valuable, perhaps unique form of support for carers giving them brief respite from their caring role. Future research incorporating mixed methods is needed to understand the perspectives of those living with dementia.
Assuntos
Cuidadores/psicologia , Cuidadores/normas , Demência/psicologia , Demência/terapia , Pesquisa Qualitativa , Apoio Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Aconselhamento/métodos , Inglaterra/epidemiologia , Feminino , Humanos , Londres/epidemiologia , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Dementia in younger people, known as young (YOD) or early onset dementia (EOD), can pose significant challenges. YOD is often diagnosed in those in paid employment who have relatively young children, leading to different challenges to those for older people. It is therefore very important to provide support tailored to their specific needs. This systematic review aimed to synthesize the literature investigating the impact of psychosocial interventions for people with YOD and their family carers. METHOD: Eight electronic databases were searched and three key journals were also hand searched. Narrative synthesis of the selected articles was undertaken. RESULTS: Of the 498 records identified, 495 were ineligible after application of the exclusion criteria. The final sample included three studies, all of which were employment-based. Two were qualitative and one used mixed methods. Study quality was mixed. People with YOD and their carers reported benefits from participating in work-based interventions designed for those with YOD, including improved self-esteem and sense of purpose. Social contact was highlighted. Despite cognitive decline, maintenance in well-being was also reported. Carers described benefits for people with YOD, which extended outside the intervention, e.g. enhanced sleep and mood. The impact of the interventions on carers was not assessed. CONCLUSIONS: This review suggests work-based interventions providing supported, meaningful work outside the home can be beneficial. However, the dearth of studies, the lack of focus on family carers and their mixed quality demonstrate the need for better quality, mixed methods research with larger sample sizes.
Assuntos
Cuidadores/psicologia , Demência/enfermagem , Qualidade de Vida/psicologia , Idade de Início , Demência/diagnóstico , Humanos , Apoio SocialRESUMO
BACKGROUND: Particularly with ageing populations, dementia and stroke and their resultant disability are worldwide concerns. Much of the support for people with these conditions comes from unpaid carers or caregivers. The carers' role is often challenging and carers themselves may need support. General practice is often the first point of contact for people with these conditions and their carers, making it potentially an important source of support. This systematic review therefore synthesised the available evidence for the impact of supportive interventions for carers provided in general practice. METHODS: PRISMA guidelines were adopted and the following databases were searched: MEDLINE; EMBASE; the Cochrane Library; PsycINFO; CINAHL Plus; Applied Social Sciences Index and Abstracts and Healthcare Management Information Consortium. RESULTS: Two thousand four hundred eighty nine results were identified. Four studies, involving 447 carers, fitted the inclusion criteria. Three of these came from the United States of America. None investigated supportive interventions for carers of people with stroke. Primarily by the provision of information and educational materials, the interventions focussed on improving carer mental health, dementia knowledge, caregiving competence and reducing burden, difficulties and frustrations. Overall the evidence suggests that these interventions may improve carer well-being and emotional health but the impact on physical health and social variables was less clear. However, the diversity of the carer outcomes and the measures used means that the findings must be viewed with caution. CONCLUSIONS: Unpaid carers pay an essential role in caring for people with stroke and dementia and the dearth of literature investigating the impact of supportive interventions for these carers of is surprising. The available evidence suggests that it may be possible to offer support for these carers in general practice but future research should consider focussing on the same outcome measures in order to allow comparisons across interventions.
Assuntos
Cuidadores/psicologia , Demência/enfermagem , Medicina Geral/métodos , Apoio Social , Estresse Psicológico/terapia , Acidente Vascular Cerebral/enfermagem , Humanos , Estresse Psicológico/psicologiaRESUMO
BACKGROUND: Patients with tracheostomy tubes are at risk of aspiration and swallowing problems (dysphagia), and because of their medical acuity, complications in this patient population can be severe. It is well recognized that swallow screening in stroke significantly reduces potential complications by allowing early identification and appropriate management of patients at risk (by health professionals), thereby reducing delays in commencing oral intake and preventing unnecessary, costly interventions by speech and language therapists (SLTs). However, there is no standardized swallow screen for the tracheostomised population and there is a paucity of literature regarding either current or best practice in this area. AIMS: To investigate current UK practice for dysphagia screening in adult patients with tracheostomy tubes and to explore and describe health professionals' perceptions of their current practice or current systems used. METHODS & PROCEDURES: A mixed-methods approach was adopted comprising a semi-structured online questionnaire and recorded follow-up telephone interviews. Participants were SLTs, nurses and physiotherapists working with patients with tracheostomies. Responses were analysed to determine current practice with regard to swallow screening. Thematic analysis of interviews allowed further exploration and clarification of the questionnaire findings. OUTCOMES & RESULTS: A total of 221 questionnaires were completed. Approximately half (45%) the participants worked in trusts with formal swallow screens, whilst the remainder used a variety of other approaches to identify patients at risk, often relying on informal links with multidisciplinary teams (MDT). In line with current evidence, patients with neurological diagnoses and a tracheostomy were consistently referred directly to speech and language therapy (SLT). Only one-quarter of questionnaire participants thought their current system was effective at identifying patients at risk of swallowing problems. Eleven questionnaire participants were interviewed. They highlighted the important role of MDT team working here, emphasizing both its strengths and weaknesses when working with these patients. CONCLUSIONS & IMPLICATIONS: Current practice in the UK for screening patients with a tracheostomy for swallow problems is varied and often suboptimal. Despite the evidence for enhancing outcomes, MDT working is still perceived as problematic. A swallow screening tool for use with this population, to enhance MDT working whilst also ensuring that practice fits in line with current evidence, may improve patient safety and care.
Assuntos
Transtornos de Deglutição/diagnóstico , Programas de Rastreamento , Aspiração Respiratória/diagnóstico , Traqueostomia/efeitos adversos , Adulto , Atitude do Pessoal de Saúde , Humanos , Entrevistas como Assunto , Equipe de Assistência ao Paciente , Fatores de Risco , Medicina Estatal , Inquéritos e Questionários , Reino UnidoRESUMO
Interprofessional teamwork is seen in healthcare policy and practice as a key strategy for providing safe, efficient and holistic healthcare and is an accepted part of evidence-based stroke care. The impact of interprofessional teamwork on patient and carer experience(s) of care is unknown, although some research suggests a relationship might exist. This study aimed to explore patient and carer perceptions of good and poor teamwork and its impact on experiences of care. Critical incident interviews were conducted with 50 patients and 33 carers in acute, inpatient rehabilitation and community phases of care within two UK stroke care pathways. An analytical framework, derived from a realist synthesis of 13 'mechanisms' (processes) of interprofessional teamwork, was used to identify positive and negative 'indicators' of teamwork. Participants identified several mechanisms of teamwork, but it was not a subject most talked about readily. This suggests that interprofessional teamwork is not a concept that is particularly important to stroke patients and carers; they do not readily perceive any impacts of teamwork on their experiences. These findings are a salient reminder that what might be expected by healthcare professionals to be important influences on experience may not be perceived to be so by patients and carers.
Assuntos
Cuidadores/psicologia , Relações Interprofissionais , Equipe de Assistência ao Paciente/organização & administração , Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Comportamento Cooperativo , Feminino , Processos Grupais , Humanos , Masculino , Pessoa de Meia-Idade , Percepção , Reino UnidoRESUMO
BACKGROUND: Focus groups are commonly used to explore participants' experiences in health and social care research. Although it is suggested that having demographically homogenous groups may help put participants at ease, the evidence is sparse.The aims of the paper are to: explore the impact of relative ethnic homogeneity and heterogeneity of focus group participants on the group discussions; improve understanding of homogeneity and heterogeneity in focus groups; suggest ways to operationalise concepts such as being 'more comfortable' with other focus group participants. METHOD: Digitally recorded focus groups were undertaken with family carers of stroke survivors and were later transcribed and analysed using framework analysis. Groups were designated as more or less ethnically homogenous. More homogenous groups included, for example, only White British or Asian Indian participants whilst more heterogeneous groups comprised a mixture of, for example, Asian, White British and Black Caribbean participants. RESULTS: Forty-one carers participated in seven focus groups. Analysis revealed differences in discussions around ethnicity between the more or less ethnically homogenous groups. For example, participants in more ethnically homogenous focus groups were more likely to say ethnicity might influence perceptions of social care services. On the other hand, more heterogeneous groups emphasised similarity in carers' experiences, irrespective of ethnicity. Participants in the more homogenous groups were also more likely to make potentially controversial comments relating to ethnic differences. Additionally they appeared to be more at ease with each other discussing the topic. For example, they spontaneously mentioned ethnic differences earlier in these groups.In contrast, analysis of topics not specifically related to ethnicity, such as the difficult experiences of being a carer, produced no discernible patterns when comparing more and less homogenous focus groups. CONCLUSION: Considerations around focus group participant demographic homogeneity and heterogeneity are complex and these terms may be most usefully applied only in relative terms.Data derived from more homogenous groups complement data from more heterogeneous groups providing different perspectives. Depending on the focus of the discussion, having characteristics in common, such as being a carer can override other differences.
Assuntos
Cuidadores/psicologia , Etnicidade/psicologia , Grupos Focais , Comportamento Social , Idoso , Povo Asiático , População Negra , Diversidade Cultural , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Acidente Vascular Cerebral , População BrancaRESUMO
The majority of people with dementia live in their own homes. Difficulties with using the toilet and incontinence can lead to them moving into care homes. This report summarises a systematic review by Drennan et al (2012) that investigated the evidence for conservative interventions for the prevention or management of incontinence in people with dementia living at home.
Assuntos
Enfermagem em Saúde Comunitária/métodos , Demência/enfermagem , Incontinência Urinária/enfermagem , Demência/complicações , Habitação para Idosos , Humanos , Incontinência Urinária/complicaçõesRESUMO
AIM: The aim of this paper is to inform and advise researchers on the practical issues associated with involving stroke patients and their carers in research. BACKGROUND: The involvement of patients and carers in research is increasingly recognised as important, yet researchers are often unclear on how to do this in practice. This is particularly evident in the field of stroke care, where there is limited information available about how to involve stroke patients and their carers in research effectively, or about the difficulties associated with this. DATA SOURCE: Experience of developing a patient and carer advisory group. REVIEW METHODS: This paper reflects on the process the authors undertook when developing a stroke patient and darer advisory group as part of a research study exploring the effect of interprofessional team working on the experiences and outcomes after stroke of patients and carers. DISCUSSION: This paper discusses the challenges and the benefits of deveong a stroke patient and carer and advisory group, and offers advice to other researchers undertaking a similar process. It aims to provide some practical suggestions that may aid researchers wishing to involve stroke patients and carers in their research. CONCLUSION: Stroke patients are likely to be older and have long-term physical disabilities or communication problems that may make their involvement in research more challenging to implement. However, with planning and consideration and the allocation of sufficient time and resources, stroke patients and their carers can be effectively involved, resulting in benefits to the research process and output, and to researchers, patients and carers. IMPLICATIONS FOR PRACTICE/RESEARCH: Pay attention to planning and the practical details of involving stroke patients and their carers in research, ensuring that meetings are arranged in an accessible venue. Use straightforward language in all forms of communication. Listen carefully to their views and perspectives and be prepared to make changes to the study and revise methods if appropriate.
Assuntos
Comitês Consultivos , Pesquisa Biomédica , Cuidadores , Acidente Vascular Cerebral/terapia , Humanos , Acidente Vascular Cerebral/enfermagem , Reino UnidoRESUMO
PURPOSE: The impact of a stroke is particularly evident during the transition home, with reported unmet needs. However, little is known about post-stroke adaptation in Portugal. This study aimed to understand how Portuguese people with stroke and their informal carers/family adapt over time, and how health professionals support their adaptation. METHODS: A multi-perspective, longitudinal qualitative study was conducted using in-depth semi-structured interviews one and six months after inpatient discharge. A purposive sample of 24 participants (8 triads) participated. Thematic and narrative analysis strategies were used. RESULTS: Three themes were identified: Managing change over time; Balancing support over time; Changing priorities. These suggest the importance of time and gradual adjustment of health professionals' approach throughout the rehabilitation process tailored to people with stroke' and carers' needs. Both valued positive thoughts and support from others to adjust life goals and find a balance between a mutual/bidirectional support and time for themselves. CONCLUSIONS: Findings show that the manner in which changes after a stroke are approached may be positively transformed to provide strength. As a result of the deeper understanding gained from this study, health professionals may be better placed to acknowledge the needs of people with stroke and carers and find effective ways of supporting them.
Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Portugal , Transição do Hospital para o Domicílio , Pesquisa Qualitativa , CuidadoresRESUMO
BACKGROUND: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers' experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions. METHOD: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically. RESULTS AND DISCUSSION: Respite sometimes alleviated carers' constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for's needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise. CONCLUSIONS: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for's quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.
Assuntos
Cuidadores/psicologia , Assistência Domiciliar/métodos , Assistência Domiciliar/psicologia , Percepção , Cuidados Intermitentes/métodos , Cuidados Intermitentes/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Dementia is a distressing and disabling illness with worldwide estimates of increased numbers of people with the condition. Two thirds of people with dementia live at home and policies in many countries seek to support more people for longer in this setting. Incontinence both contributes to carer burden and is also a significant factor in the decision to move into care homes. A review was conducted for evidence of effectiveness for conservative interventions, which are non-pharmacological and non-surgical interventions, for the prevention or management of incontinence in community dwelling people with dementia. METHOD: Fourteen electronic databases were searched, including MEDLINE, EMBASE and CINAHL (from inception to 2012). Assessments of risk of bias were made. Meta-analysis was inappropriate due to the heterogeneity of the interventions and outcome measurements. A narrative analysis was undertaken. RESULTS: From 427 identified abstracts, 56 studies were examined but only three met the inclusion criteria, all more than a decade old. All three focused on urinary incontinence. Two studies were exploratory or pilot studies. All had a control arm. The interventions were of advice for the carer to implement. Two included toileting education of prompted voiding or an individualised toileting schedule. There was insufficient evidence to support or rule out effectiveness of any of these interventions. Some interventions were unacceptable for some carers. None specifically reported the perspective of the person with dementia. CONCLUSIONS: There was insufficient evidence from any studies to recommend any strategies. There remains an urgent need for both research and also clinical guidance for health professionals tailored to community settings where the majority of people with dementia live.
Assuntos
Transtornos Cognitivos/terapia , Demência/terapia , Intervenção Médica Precoce/métodos , Serviços de Assistência Domiciliar , Incontinência Urinária/terapia , Transtornos Cognitivos/epidemiologia , Demência/epidemiologia , Humanos , Incontinência Urinária/epidemiologiaRESUMO
AIM: To describe the relationship between self-appraised problem-solving abilities and psychological distress, burden and perceived social support in informal, family stroke caregivers. BACKGROUND: Previous research suggests that self-appraised problem-solving abilities play a significant role in the well-being of family caregivers of patients with chronic illness. However, little is known about its role in caregivers of stroke survivors. DESIGN: Prospective correlational study. METHODS: One week before discharge, 103 family caregivers of survivors of a first stroke were assessed for their perceived problem-solving abilities, social support, anxiety, depression and physical well-being. At three months postdischarge, 85 of these caregivers (83% retention) were reassessed on the same measures. In addition, their levels of burden and perceived difficulties were also measured. RESULTS: Using multiple regression, overall self-appraised problem-solving abilities and its subscale 'confidence in problem-solving' at one week before discharge were significant predictors of caregiver perceived social support (R(2) = 29%) and perceived physical well-being (R(2) = 42%) at three months postdischarge. Other relationships were non-significant. CONCLUSIONS: Caregivers' perceived social support and physical well-being were significantly predicted by confidence in problem-solving. RELEVANCE TO CLINICAL PRACTICE: This study is timely given the challenges facing health systems in Hong Kong to effectively manage chronic illness through family-centred care. The significant relationships between caregiver self-appraised problem-solving, perceived social support and well-being suggest that interventions maximising caregiver confidence in problem-solving might be valuable in supporting family caregivers of stroke survivors. Nurses working with families caring for stroke survivors both close to discharge and in the early transition stages back at home may be in an ideal position to offer this support.
Assuntos
Cuidadores/psicologia , Resolução de Problemas , Apoio Social , Acidente Vascular Cerebral/enfermagem , Adaptação Psicológica , Adulto , Família/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Estresse Psicológico , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Informal carers frequently suffer adverse consequences from caring. General practice teams are well positioned to support them. However, what carers of stroke survivors want and expect from general practice, and the practical support measures they might like, remain largely unexplored.The aims of this study are twofold. Firstly it explores both the support stroke carers would like from general practice and their reactions to the community based support proposed in the New Deal. Secondly, perceptions of a general practice team are investigated covering similar topics to carer interviews but from their perspective. METHODS: Semi-structured interviews were conducted with 13 stroke carers and 10 members of a general practice team. Carers' experiences and expectations of general practice and opinions of support measures from recent government policy were explored. General practice professionals were asked about their perceived role and their perceptions of carers' support needs. Interviews were content analysed. RESULTS: Carers' expectations of support from general practice were low and they neither received nor expected much support for themselves. General practice was seen as reactive primarily because of time constraints. Some carers would appreciate emotional support but others did not want additional services. Responses to recent policy initiatives were mixed with carers saying these might benefit other carers but not themselves.General practice professionals' opinions were broadly similar. They recognise carers' support needs but see their role as reactive, focussed on stroke survivors, rather than carers. Caring was recognised as challenging. Providing emotional support and referral were seen as important but identification of carers was considered difficult. Time constraints limit their support. Responses to recent policy initiatives were positive. CONCLUSIONS: Carers' expectations of support from general practice for themselves are low and teams are seen as reactive and time constrained. Both the carers and the general practice team participants emphasised the valuable role of general practice team in supporting stroke survivors. Research is needed to determine general practice teams' awareness and identification of carers and of the difficulties they encounter supporting stroke carers. Carer policy initiatives need greater specificity with greater attention to diversity in carer needs.
Assuntos
Cuidadores , Medicina Geral , Apoio Social , Acidente Vascular Cerebral , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Acidente Vascular Cerebral/terapia , SobreviventesRESUMO
AIM: To understand how people with stroke and carers adapt over time, and how health professionals support transition to home. METHOD: A multi-perspective, prospective, qualitative, longitudinal study was conducted using in-depth semi-structured interviews one and six months after inpatient discharge. Twenty-four participants (eight triads, including people with stroke, carers and health professionals) were included. Thematic and narrative analysis facilitated identification of cross-cutting themes according to individual trajectories post-stroke. FINDINGS: A major theme: "regaining control of life" suggested a shift in perspective after six months at home. Four sub-themes help to understand the triads' perspectives over time: i) importance of team involvement; ii) differences in perceived roles within the triad; iii) differences in expectations and collaboration within the triad and iv) planning a different future. People who were involved in supporting adaptation and rehabilitation processes were reported differently between triads and over time, showing the complexity of interrelations. A reduction in professional involvement was matched by changes in participants' goals and expectations. CONCLUSION: Findings suggest the importance of a dyadic perspective and a gradual increase in people with stroke and carers' active engagement. Professionals' approach throughout rehabilitation should be modified according to people with stroke and carers' changing needs and expectations.IMPLICATIONS FOR REHABILITATIONDivergence in perspectives about priorities and goals between the person with stroke their carers and healthcare professionals can lead to the creation of different agendas within rehabilitation.An open dialogue and decision-making process that involves both the person with stroke and carers is highly recommended for the identification of shared rehabilitation goals and to support ongoing recovery post discharge.A tailored approach to rehabilitation is required which focusses on shared priorities and includes individual or collective support for the person with stroke and their carers.Ongoing consultation about the desires of the person with stroke about rehabilitation, priorities and goals is important in order to tailor the professional approach to the stage individuals are at with their coping and adjustment post stroke.
Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Assistência ao Convalescente , Cuidadores , Humanos , Estudos Longitudinais , Alta do Paciente , Estudos Prospectivos , Pesquisa QualitativaRESUMO
Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched. The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/no, multiple-response and open-ended questions, was codesigned with people living with young onset dementia. The survey was promoted via networks and online platforms. Data were collected from August to October 2019. Survey respondents across the United Kingdom (n = 55) who had received a diagnosis of young onset dementia were aged between 45 and 64, were at different stages of dementia and had been diagnosed with thirteen different types of dementia. Of the 55 respondents, 71% (n = 39) had received assistance from family members when completing the survey. The main financial impact of a diagnosis of young onset dementia resulted from premature loss of income and reduced and often deferred pension entitlements. In some cases, care-costs became unaffordable. Lack of clarity of processes and procedures around needs assessments, carers' assessments and financial assessments by different organisations resulted in some families having to ask for legal advice and, in some cases, involved lengthy appeal processes. Future research needs to involve Adult Social Care and Third Sector organisations to help codesign and test financial management interventions to support people affected by this progressive health condition.
Assuntos
Demência , Cuidadores , Demência/diagnóstico , Família , Humanos , Pessoa de Meia-Idade , Inquéritos e Questionários , Reino UnidoRESUMO
BACKGROUND: Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services. METHODS: Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers. RESULTS: Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers. CONCLUSIONS: GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.