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1.
Health Soc Care Community ; 28(2): 568-575, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31682034

RESUMO

Little is known about how parents' experiences of respite services or 'short breaks' for a child with complex medical needs relate to family functioning and the manner in which parents cope. The aim of this study was to examine the relationship between parents' satisfaction with short breaks, family functioning and parental coping and to determine whether these variables change over time. The sample included 32 families receiving short breaks. A repeated measures quantitative design was used, with data collected at baseline and 12 months. The main outcome variables were satisfaction with short breaks, family functioning and parental coping. At baseline, descriptive statistics showed positive levels of satisfaction with services and coping, while family functioning scores suggested more negative profiles. Also at baseline, significant negative correlations were identified between the age of the child receiving short breaks and certain approaches to parental coping. At Time 2 (n = 17, 73% of possible responses), satisfaction with services was significantly positively correlated with aspects of family functioning and coping. Using dependent t tests, no evidence was found of significant change overtime in satisfaction or family functioning for the sample who completed data collection at both time points. However, a significant decrease in use of certain coping approaches was found over time. While parents' satisfaction levels with short breaks were high across test occasions, there is need for service development aimed at providing interventions that are tailored to ameliorate tension within the family and promote active parental coping over time.

2.
Child Abuse Negl ; 99: 104121, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31838224

RESUMO

BACKGROUND: The literature is inconsistent as to the relationship between age at time of abuse and time to disclosure of child sexual abuse (CSA) and the factors that influence early disclosure. OBJECTIVE: This study sought to investigate the relationship between age of child at time of disclosure, taking account of age at time of abuse, delay in disclosure, and the relationship, if any, between factors influencing disclosure (feeling distressed, being believed, fear, contact with alleged perpetrator, difficulty saying it, and being asked) and age at time of disclosure. PARTICIPANTS AND SETTING: The files of children (n=273) seen for evaluation in a child sexual abuse (CSA) centre were reviewed. METHOD: Demographic information and data relating to the child's experience of informal disclosure were extracted from children's evaluation reports, based on interviews with children and their parents, where professionals deemed that a credible account of CSA has been given. RESULTS: A significant relationship was found between age at time of abuse and age at time of disclosure (χ2 (16) = 261.434, p < 0.05), whereby children were more likely to tell within the developmental period during which they were abused than within any other period; this pattern increased across each age category. Overall, no specific psychological factors were found to be predictive of early disclosure. CONCLUSIONS: The findings suggest that children of all ages need to be targeted for prevention efforts and a larger study is needed to investigate whether some psychological factors are more predictive of disclosure than others.

3.
Eur J Gen Pract ; 26(1): 33-41, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31686571

RESUMO

Background: Out-of-hospital cardiac arrest (OHCA) is a major cause of premature mortality. Survival is possible when timely cardiopulmonary resuscitation and defibrillation are available in the community. GPs are well placed to provide early OHCA care and significantly increased rates of survival are achieved when GPs participate in resuscitation. A novel project alerts volunteer GP first responders to nearby OHCAs in Ireland.Objectives: To explore the reasons why GPs volunteer to be OHCA first responders and their experience of participation.Methods: A qualitative study involving in-depth, semi-structured interviews followed by thematic analysis was undertaken in 2017/18. Fourteen GPs from differing geographical areas in Ireland, who volunteered as OHCA first-responders were recruited to participate by purposive methods.Results: GP participation in OHCA voluntary first response was understood as a function of GPs relationship to the community, their ability to manage competing demands in their personal and professional lives and also specific participatory gains. GPs expressed both altruistic motivations and a sense of obligation. GPs described a complex, multifaceted role in providing OHCA first response; they derived an inherent sense of satisfaction in delivering potentially life-saving interventions but also in the provision of holistic, compassionate end-of-life care for patients and their families. Participation was not without psychosocial risk for GPs.Conclusion: GPs volunteer to provide early OHCA emergency care because of their relationship to the community. Care provided is complex and includes both resuscitation and end-of-life care.

4.
J Child Health Care ; : 1367493519875593, 2019 Oct 08.
Artigo em Inglês | MEDLINE | ID: mdl-31594387

RESUMO

Previous research has reported that the families of children with enduring and life-limiting health conditions are at risk of negative psychosocial effects. Adjunct to medical interventions, specialist camp programmes have been developed to promote familial adjustment. However, limited research has been carried out in this area. The aim of this study was to describe the core features and outcomes of a specialised camp programme for children with life-limiting conditions (LLC) and their family. Semi-structured interviews were conducted with four professionals, three volunteers involved in facilitating the programme and two mothers representing families that attended the programme. Multiple perspectives were sought to gain a detailed understanding of the programme and outcomes. Data were analysed through an inductive thematic approach. There was considerable overlap among participant groups on the core features and outcomes of the programme. Thematically, core features are described in terms of familial togetherness, peer interaction, safety and positive experiences. Noted outcomes include lasting memories, continued peer relations for parents and siblings and enhancement of relationships between family members and professionals. Findings suggest that specialised camp programmes may provide families of children with LLC with positive experiences that support adjustment, although further research is required.

6.
BMJ Open ; 9(8): e029015, 2019 08 08.
Artigo em Inglês | MEDLINE | ID: mdl-31399458

RESUMO

OBJECTIVES: To explore the reasons why lay community first responders (CFRs) volunteer to participate in out-of-hospital cardiac arrest response and the realities of their experience in providing this service to the community. DESIGN: A qualitative study, using in-depth semistructured interviews that were recorded and transcribed. Thematic analysis was undertaken and credibility checks conducted. SETTING: Nine geographically varied lay CFR schemes throughout Ireland. PARTICIPANTS: Twelve experienced CFRs. RESULTS: CFRs were motivated to participate based on a variety of factors. These included altruistic, social and pre-existing emergency care interest. A proportion of CFRs may volunteer because of experience of cardiac arrest or illness in a relative. Sophisticated structures and complex care appear to underpin CFR involvement in out-of-hospital cardiac arrest. Strategic and organisational issues, multifaceted cardiac arrest care and the psychosocial impact of participation were considered. CONCLUSIONS: Health systems that facilitate CFR out-of-hospital cardiac arrest response should consider a variety of relevant issues. These issues include the suitability of those that volunteer, complexities of resuscitation/end-of-life care, responder psychological welfare as well as CFRs' core role of providing early basic life support and defibrillation in the community.

7.
J Affect Disord ; 256: 358-363, 2019 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-31207559

RESUMO

BACKGROUND: Complicated grief encompasses various presentations where aspects of grief do not become integrated into the bereaved person's life. Professionals' attitudes to complicated grief may impact how they engage with bereaved patients/clients. The aim of this study was to empirically examine the attitudes of mental health professionals, specifically psychologists, psychiatrists and counselor/psychotherapists, regarding complicated grief and to investigate any between profession-differences. METHOD: Psychiatrists, counselor/psychotherapists and psychologists were recruited using publicly available databases managed by professional bodies. A total of 185 professionals (71.8% female), returned a questionnaire containing usable data (23.8% response rate). RESULTS: Over two-thirds of the professionals (68.5%) supported the inclusion of complicated grief in diagnostic manuals while only a quarter (25.1%) thought that recognition of complicated grief might lead to the pathologization of 'normal' grief. The majority of respondents (83.0%) thought that diagnosing complicated grief would increase the likelihood of clients accessing support and there was no significant difference between the groups. LIMITATIONS: Although the response rate compares favorably with other studies it is nonetheless somewhat lower than optimum, and it is possible that those who responded were more interested in bereavement and consequently, that the attitudes held by participants are different from those who did not participate. CONCLUSION: The attitude to a diagnosis of complicated grief was more positive than the specialist literature suggests, with the benefits of having a diagnosis of complicated grief outweighing the risks of pathologization.

8.
Cochrane Database Syst Rev ; 5: CD012628, 2019 05 31.
Artigo em Inglês | MEDLINE | ID: mdl-31149734

RESUMO

BACKGROUND: Periodontal (gum) disease and dental caries (tooth decay) are the most common causes of tooth loss; dental plaque plays a major role in the development of these diseases. Effective oral hygiene involves removing dental plaque, for example, by regular toothbrushing. People with intellectual disabilities (ID) can have poor oral hygiene and oral health outcomes. OBJECTIVES: To assess the effects (benefits and harms) of oral hygiene interventions, specifically the mechanical removal of plaque, for people with intellectual disabilities (ID). SEARCH METHODS: Cochrane Oral Health's Information Specialist searched the following databases to 4 February 2019: Cochrane Oral Health's Trials Register, the Cochrane Central Register of Controlled Trials (CENTRAL; Cochrane Register of Studies), MEDLINE Ovid, Embase Ovid and PsycINFO Ovid. ClinicalTrials.gov and the World Health Organization International Clinical Trials Registry Platform were searched for ongoing trials. The Embase search was restricted by date due to the Cochrane Centralised Search Project, which makes available clinical trials indexed in Embase through CENTRAL. We handsearched specialist conference abstracts from the International Association of Disability and Oral Health (2006 to 2016). SELECTION CRITERIA: We included randomised controlled trials (RCTs) and some types of non-randomised studies (NRS) (non-RCTs, controlled before-after studies, interrupted time series studies and repeated measures studies) that evaluated oral hygiene interventions targeted at people with ID or their carers, or both. We used the definition of ID in the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10). We defined oral hygiene as the mechanical removal of plaque. We excluded studies that evaluated chemical removal of plaque, or mechanical and chemical removal of plaque combined. DATA COLLECTION AND ANALYSIS: At least two review authors independently screened search records, identified relevant studies, extracted data, assessed risk of bias and judged the certainty of the evidence according to GRADE criteria. We contacted study authors for additional information if required. We reported RCTs and NRSs separately. MAIN RESULTS: We included 19 RCTs and 15 NRSs involving 1795 adults and children with ID and 354 carers. Interventions evaluated were: special manual toothbrushes, electric toothbrushes, oral hygiene training, scheduled dental visits plus supervised toothbrushing, discussion of clinical photographs showing plaque, varied frequency of toothbrushing, plaque-disclosing agents and individualised care plans. We categorised results as short (six weeks or less), medium (between six weeks and 12 months) and long term (more than 12 months).Most studies were small; all were at overall high or unclear risk of bias. None of the studies reported quality of life or dental caries. We present below the evidence available from RCTs (or NRS if the comparison had no RCTs) for gingival health (inflammation and plaque) and adverse effects, as well as knowledge and behaviour outcomes for the training studies.Very low-certainty evidence suggested a special manual toothbrush (the Superbrush) reduced gingival inflammation (GI), and possibly plaque, more than a conventional toothbrush in the medium term (GI: mean difference (MD) -12.40, 95% CI -24.31 to -0.49; plaque: MD -0.44, 95% CI -0.93 to 0.05; 1 RCT, 18 participants); brushing was carried out by the carers. In the short term, neither toothbrush showed superiority (GI: MD -0.10, 95% CI -0.77 to 0.57; plaque: MD 0.20, 95% CI -0.45 to 0.85; 1 RCT, 25 participants; low- to very low-certainty evidence).Moderate- and low-certainty evidence found no difference between electric and manual toothbrushes for reducing GI or plaque, respectively, in the medium term (GI: MD 0.02, 95% CI -0.06 to 0.09; plaque: standardised mean difference 0.29, 95% CI -0.07 to 0.65; 2 RCTs, 120 participants). Short-term findings were inconsistent (4 RCTs; low- to very low-certainty evidence).Low-certainty evidence suggested training carers in oral hygiene care had no detectable effect on levels of GI or plaque in the medium term (GI: MD -0.09, 95% CI -0.63 to 0.45; plaque: MD -0.07, 95% CI -0.26 to 0.13; 2 RCTs, 99 participants). Low-certainty evidence suggested oral hygiene knowledge of carers was better in the medium term after training (MD 0.69, 95% CI 0.31 to 1.06; 2 RCTs, 189 participants); this was not found in the short term, and results for changes in behaviour, attitude and self-efficacy were mixed.One RCT (10 participants) found that training people with ID in oral hygiene care reduced plaque but not GI in the short term (GI: MD -0.28, 95% CI -0.90 to 0.34; plaque: MD -0.47, 95% CI -0.92 to -0.02; very low-certainty evidence).One RCT (304 participants) found that scheduled dental recall visits (at 1-, 3- or 6-month intervals) plus supervised daily toothbrushing were more likely than usual care to reduce GI (pocketing but not bleeding) and plaque in the long term (low-certainty evidence).One RCT (29 participants) found that motivating people with ID about oral hygiene by discussing photographs of their teeth with plaque highlighted by a plaque-disclosing agent, did not reduce plaque in the medium term (very low-certainty evidence).One RCT (80 participants) found daily toothbrushing by dental students was more effective for reducing plaque in people with ID than once- or twice-weekly toothbrushing in the short term (low-certainty evidence).A benefit to gingival health was found by one NRS that evaluated toothpaste with a plaque-disclosing agent and one that evaluated individualised oral care plans (very low-certainty evidence).Most studies did not report adverse effects; of those that did, only one study considered them as a formal outcome. Some studies reported participant difficulties using the electric or special manual toothbrushes. AUTHORS' CONCLUSIONS: Although some oral hygiene interventions for people with ID show benefits, the clinical importance of these benefits is unclear. The evidence is mainly low or very low certainty. Moderate-certainty evidence was available for only one finding: electric and manual toothbrushes were similarly effective for reducing gingival inflammation in people with ID in the medium term. Larger, higher-quality RCTs are recommended to endorse or refute the findings of this review. In the meantime, oral hygiene care and advice should be based on professional expertise and the needs and preferences of the individual with ID and their carers.


Assuntos
Deficiência Intelectual , Saúde Bucal , Higiene Bucal , Doenças Periodontais/prevenção & controle , Placa Dentária , Humanos , Escovação Dentária/métodos
9.
PLoS One ; 14(5): e0216600, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31086377

RESUMO

Involving patients in research broadens a researcher's field of influence and may generate novel ideas. Preclinical research is integral to the progression of innovative healthcare. These are not patient-facing disciplines and implementing meaningful public and patient involvement (PPI) can be a challenge. A discussion forum and thematic analysis identified key challenges of implementing public and patient involvement for preclinical researchers. In response we developed a "PPI Ready" planning canvas. For contemporaneous evaluation of public and patient involvement, a psychometric questionnaire and an open source tool for its evaluation were developed. The questionnaire measures information, procedural and quality assessment. Combined with the open source evaluation tool, researchers are notified if public and patient involvement is unsatisfactory in any of these areas. The tool is easy to use and adapts a psychometric test into a format familiar to preclinical scientists. Designed to be used iteratively across a research project, it provides a simple reporting grade to document satisfaction trend over the research lifecycle.


Assuntos
Pesquisa Biomédica/normas , Comunicação , Participação do Paciente/métodos , Opinião Pública , Projetos de Pesquisa/normas , Pesquisadores/normas , Comportamento Cooperativo , Feminino , Humanos , Masculino , Inquéritos e Questionários
10.
J Med Internet Res ; 21(3): e11123, 2019 03 07.
Artigo em Inglês | MEDLINE | ID: mdl-30843863

RESUMO

BACKGROUND: By adaptation of the face-to-face physiotherapist-training program previously used in the Self-management of Osteoarthritis and Low back pain through Activity and Skills (SOLAS) feasibility trial, an asynchronous, interactive, Web-based, e-learning training program (E-SOLAS) underpinned by behavior and learning theories was developed. OBJECTIVE: This study investigated the effect of the E-SOLAS training program on relevant outcomes of effective training and implementation. METHODS: Thirteen physiotherapists from across Ireland were trained via E-SOLAS by using mixed methods, and seven physiotherapists progressed to implementation of the 6-week group-based SOLAS intervention. The effectiveness of E-SOLAS was evaluated using the Kirkpatrick model at the levels of reaction (physiotherapist engagement and satisfaction with E-SOLAS training methods and content), learning (pre- to posttraining changes in physiotherapists' confidence and knowledge in delivering SOLAS content and self-determination theory-based communication strategies, administered via a SurveyMonkey questionnaire), and behavior (fidelity to delivery of SOLAS content using physiotherapist-completed weekly checklists). During implementation, five physiotherapists audio recorded delivery of one class, and the communication between physiotherapists and clients was assessed using the Health Care Climate Questionnaire (HCCQ), the Controlling Coach Behaviour Scale (CCBS), and an intervention-specific measure (ISM; 7-point Likert scale). A range of implementation outcomes were evaluated during training and delivery (ie, acceptability, appropriateness, feasibility, fidelity, and sustainability of E-SOLAS) using a posttraining feedback questionnaire and individual semistructured telephone interviews. RESULTS: With regard to their reaction, physiotherapists (n=13) were very satisfied with E-SOLAS posttraining (median 5.0; interquartile range 1.0; min-max 4.0-5.0) and completed training within 3-4 weeks. With regard to learning, there were significant increases in physiotherapists' confidence and knowledge in delivery of all SOLAS intervention components (P<.05). Physiotherapists' confidence in 7 of 10 self-determination theory-based communication strategies increased (P<.05), whereas physiotherapists' knowledge of self-determination theory-based strategies remained high posttraining (P>.05). In terms of behavior, physiotherapists delivered SOLAS in a needs supportive manner (HCCQ: median 5.2, interquartile range 1.3, min-max 3.7-5.8; CCBS: median 6.6, interquartile range 1.0, min-max 5.6-7.0; ISM: median 4.5, interquartile range 1.2, min-max 2.8-4.8). Fidelity scores were high for SOLAS content delivery (total %mean fidelity score 93.5%; SD 4.9%). The posttraining questionnaire and postdelivery qualitative interviews showed that physiotherapists found E-SOLAS acceptable, appropriate, feasible, and sustainable within primary care services to support the implementation of the SOLAS intervention. CONCLUSIONS: This study provides preliminary evidence of the effectiveness, acceptability, and feasibility of an e-learning program to train physiotherapists to deliver a group-based self-management complex intervention in primary care settings, which is equivalent to face-to-face training outcomes and would support inclusion of physiotherapists in a definitive trial of SOLAS.


Assuntos
Instrução por Computador/métodos , Dor Lombar/terapia , Osteoartrite/terapia , Autogestão/métodos , Feminino , Humanos , Masculino
11.
J Adv Nurs ; 75(2): 313-326, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30168164

RESUMO

AIMS: To identify the key common components of knowledge transfer and exchange in existing models to facilitate practice developments in health services research. BACKGROUND: There are over 60 models of knowledge transfer and exchange designed for various areas of health care. Many of them remain untested and lack guidelines for scaling-up of successful implementation of research findings and of proven models ensuring that patients have access to optimal health care, guided by current research. DESIGN: A scoping review was conducted in line with PRISMA guidelines. Key components of knowledge transfer and exchange were identified using thematic analysis and frequency counts. DATA SOURCES: Six electronic databases were searched for papers published before January 2015 containing four key terms/variants: knowledge, transfer, framework, health care. REVIEW METHODS: Double screening, extraction and coding of the data using thematic analysis were employed to ensure rigour. As further validation stakeholders' consultation of the findings was performed to ensure accessibility. RESULTS: Of the 4,288 abstracts, 294 full-text articles were screened, with 79 articles analysed. Six key components emerged: knowledge transfer and exchange message, Stakeholders and Process components often appeared together, while from two contextual components Inner Context and the wider Social, Cultural and Economic Context, with the wider context less frequently considered. Finally, there was little consideration of the Evaluation of knowledge transfer and exchange activities. In addition, specific operational elements of each component were identified. CONCLUSIONS: The six components offer the basis for knowledge transfer and exchange activities, enabling researchers to more effectively share their work. Further research exploring the potential contribution of the interactions of the components is recommended.


Assuntos
Troca de Informação em Saúde , Transferência de Tecnologia , Pesquisa Médica Translacional/métodos , Serviços de Saúde , Humanos
12.
Am J Hosp Palliat Care ; : 1049909118806461, 2018 Oct 25.
Artigo em Inglês | MEDLINE | ID: mdl-30360632

RESUMO

BACKGROUND:: Effective palliative care requires a strong evidence base to advance clinical practice and policy-making. Calls for more collaborative and strategic approaches to research have resulted in the development of research networks at national and wider regional levels. AIM:: The aim was to synthesize the learning arising from the activities of the Palliative Care Research Network from the island of Ireland, in order to identify the overarching messages from these activities. The ultimate aim is to promote the communication of these messages to practice. DESIGN:: The study developed a systematic search process influenced by Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines, with analysis of data adopting a qualitative critical interpretative synthesis approach using thematic synthesis. PARTICIPANTS:: In total, 142 dissemination products were sourced from 22 associated projects, including peer-reviewed publications, conference presentations, reports, and web/social media posts. RESULTS:: The synthesis of dissemination products identified 4 key themes relating to palliative care research and practice: (1) addressing the needs of patients while recognizing the caregiver role, (2) equal access to connected services, (3) general and specific needs in palliative care research, and (4) challenges in palliative care research. CONCLUSIONS:: The key themes identified relate to challenges in both practice and research, highlighting the complexity of palliative care provision that aims to support both patients and carers, and research in this area. However, an important implication is the need for a broader approach to dissemination (beyond traditional academic activities) to ensure that research in palliative care is well placed to inform both practice and policy.

13.
BMJ Evid Based Med ; 23(4): 131-136, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-29941656

RESUMO

In order to ensure the effective transfer of research knowledge to those who can effect positive changes in practice, models of knowledge transfer and exchange (KTE) are required. Limited evidence exists as to how palliative care researchers use existing models to support their practice and to what extent they are perceived as effective. We set out to identify factors that influence KTE planning and implementation through semistructured interviews with experienced palliative care researchers in Ireland. Issues around KTE were drawn out through thematic analysis. Nine interviews were held with investigators on eight research projects. Ten themes were identified and categorised as either barriers or facilitators to KTE. Perceived barriers included inadequate time and funding, limited institutional capacity, competing priorities, weak communication channels and negative perceptions of palliative care. Perceived facilitators included dedicated time and resources, aligned priorities, strong professional networks, multipronged approach and KTE experience. In order to improve the quality, acceptability and reach of palliative research, it is vital that researchers improve their understanding of KTE within the context of palliative care, moving beyond academic dissemination to achieve research-informed practice by overcoming barriers to KTE through facilitated action. This study provides an overview of factors that influence KTE planning and implementation among palliative care researchers.


Assuntos
Pesquisa sobre Serviços de Saúde , Cuidados Paliativos , Pesquisa Médica Translacional , Prioridades em Saúde , Pesquisa sobre Serviços de Saúde/economia , Humanos , Comunicação Interdisciplinar , Percepção , Apoio à Pesquisa como Assunto , Participação dos Interessados , Pesquisa Médica Translacional/economia
14.
Am J Hosp Palliat Care ; 35(10): 1304-1308, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29730936

RESUMO

BACKGROUND: Although the provision of palliative care (PC) is fundamental to the role of the physician, little research has assessed the competence of trainee and experienced physicians in PC. AIM: To describe the development of a competence questionnaire and assess the level of competence of medical doctors in Ireland to provide PC to individuals with life-limiting conditions and their families. DESIGN: A survey-based cohort study was employed using a questionnaire based on the Palliative Care Competence Framework, developed specifically for this study. SETTING: The sample was accessed via the Royal College of Physicians of Ireland. All specialties in adult medical care and direct patient contact were included. RESULTS: A pilot study demonstrated comprehensiveness and ensured face validity. In the main study, all subscales showed internal reliability and evidence of a normal distribution. Strong correlation was noted between knowledge and behavior while moderate correlations were noted between attitudes and behavior and attitudes and knowledge, respectively. As expected, palliative-trained participants scored significantly higher in attitudes, behavior, and knowledge. CONCLUSIONS: The study provides baseline data on the level of competence of PC of doctors working in Ireland. The study also offers a novel assessment tool that has the potential to be used for future research.


Assuntos
Competência Clínica/normas , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos/normas , Médicos/normas , Inquéritos e Questionários/normas , Adulto , Estudos de Coortes , Feminino , Humanos , Irlanda , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Psicometria , Reprodutibilidade dos Testes
15.
Death Stud ; 42(9): 593-603, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29338601

RESUMO

While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection, and staff interviews to highlight the themes of Searching & Finding, Getting to Know, Finding the Balance, and Joining. Developing opportunistically through internal and external factors, the camp's evolution represents a closing of the loop, from supporting families of living children to also supporting the families of children who have died. Understanding the camp's evolution may facilitate other programs by highlighting the challenges in developing the program and the lessons learned.


Assuntos
Luto , Morte , Família/psicologia , Terapia Recreacional/métodos , Adulto , Criança , Feminino , Humanos , Masculino
16.
BMC Palliat Care ; 17(1): 9, 2017 Jul 14.
Artigo em Inglês | MEDLINE | ID: mdl-28705196

RESUMO

BACKGROUND: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. MAIN BODY: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities. CONCLUSIONS: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.


Assuntos
Demência/terapia , Educação/tendências , Cuidados Paliativos/normas , Demência/psicologia , Humanos , Estudos Interdisciplinares , Irlanda , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências
17.
J Appl Res Intellect Disabil ; 30(6): 1065-1075, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28670757

RESUMO

BACKGROUND: The dearth of literature regarding how or when to intervene when an adult with intellectual disability is bereaved may impede clinical practice; this study therefore aimed to explore the current clinical psychology response, so as to enhance understanding of the role of the profession in supporting grief within this population. METHOD: A collective case study design was used. Data for six persons with intellectual disability, including interviews with parentally bereaved persons and involved staff members, were integrated into individual case stories for cross-case synthesis. RESULTS: Data were analysed using thematic analysis. Five overarching themes illustrated that the clinical psychology role is broadly distributed and identified potentially complicating factors such as "gatekeeping" and "staff uncertainty." CONCLUSIONS: A model of bereavement supports reflecting that by Read (Learning Disability Practice, 8, 2005, 31) is being approximated in clinical practice; further research is required to determine how best to implement this, and whether this meets the true needs of the population.


Assuntos
Crianças Adultas/psicologia , Luto , Deficiência Intelectual/psicologia , Pessoas com Deficiência Mental/psicologia , Apoio Social , Adulto , Humanos , Modelos Psicológicos , Pais , Psicologia Clínica
18.
Patient Educ Couns ; 100(8): 1447-1458, 2017 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-28320560

RESUMO

OBJECTIVE: A systematic review and qualitative synthesis was undertaken to deduce the knowledge, attitudes, skills and training of mental health professionals regarding complicated grief (CG). METHODS: PsychInfo, Embase, Medline, CINAHL, PBSC, Web of Science and ERIC databases were used to identify relevant literature. Searches were executed from inception to September 2014. RESULTS: The electronic search yielded 305 results. Forty-one papers were selected for full text review, 20 were included for analysis. 6 examined primary data, the remaining 14 being reviews, opinion or guideline pieces. CONCLUSIONS: Despite the lack of consensus on terminology, criteria and diagnosis, it appears that there is more than sufficient agreement within the CG research community regarding the knowledge and skills required to assist someone presenting with CG. A palpable fear of medicalising grief exists, but this would seem to be based on a conflation of normal grief and CG. This review highlights the mainly unidirectional nature of current research, the voice of the practitioner being largely unheard. A need for and an interest in training in CG was expressed. PRACTICE IMPLICATIONS: There is an urgent need to translate research findings into clinical practice. Training must take account of attitudinal barriers to implementation, balancing evidence and stories.


Assuntos
Pesar , Conhecimentos, Atitudes e Prática em Saúde , Psiquiatria/educação , Psicologia/educação , Humanos
19.
BMC Res Notes ; 9(1): 478, 2016 Oct 21.
Artigo em Inglês | MEDLINE | ID: mdl-27769317

RESUMO

BACKGROUND: Research networks that facilitate collaborative research are increasing both regionally and globally and such collaborations contribute greatly to knowledge transfer particularly in health research. The Palliative Care Research Network is an Irish-based network that seeks to create opportunities and engender a collaborative environment to encourage innovative research that is relevant for policy and practice. The current review outlines a methodology to identify cross-cutting messages to identify how dissemination outputs can be optimized to ensure that key messages from this research reaches all knowledge users. METHODS/DESIGN: Preferred reporting items for systematic review and meta-analysis protocol guidelines will inform the search and analysis plan to ensure that the synthesis of the data is as rigorous as possible. An approach based on critical interpretative synthesis will be adapted to include a thematic synthesis for the identification of higher-order themes and messages from a body of dissemination products generated by the Palliative Care Research Network. DISCUSSION: The thematic synthesis outlined in the present protocol offers a novel method of synthesising data from a focused research network that employs a variety of dissemination materials as a means of identifying key themes and messages from a specific body of research. The high-level themes and messages will be identified from the thematic synthesis, widely disseminated and targeted towards a range of stakeholders and knowledge users such as carers, health and social care professionals, policy makers and researchers.


Assuntos
Protocolos Clínicos , Cuidados Paliativos , Humanos , Revisão Sistemática como Assunto
20.
Harv Rev Psychiatry ; 24(3): 202-13, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27148912

RESUMO

BACKGROUND: Suicidality in people with intellectual disability has not been extensively researched. AIM: To identify the nature of the research that has actually been conducted on this topic. METHOD: A search of research databases was conducted according to predefined criteria. Key information was extracted and rated for methodological merit. RESULTS: Twenty-four studies met the inclusion criteria for this systematic review. The aspects of suicidality investigated, which varied among studies, included suicidal attempts, behavior, ideation, and completed suicide. Thirteen studies highlighted risk factors for suicidality in this population. The most frequently noted risk factors were a concurrent mental health difficulty and the level of intellectual disability. Eight studies referred to people with intellectual disabilities' understanding of the concept of death or suicide. Various methodological issues were identified in the studies included. CONCLUSIONS: In what we believe to be first systematic review of suicidality in people with intellectual disabilities, it was apparent that well-designed, standardized research studies on the topic are scarce. There is consequently limited evidence to guide prevention and intervention strategies for suicidality in this population.


Assuntos
Deficiência Intelectual , Suicídio , Humanos , Deficiência Intelectual/epidemiologia , Suicídio/estatística & dados numéricos
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