Pub Date : 2024-08-30DOI: 10.1080/09602011.2024.2391338
Anna Volkmer, Alessa Hausmann, Avanthi Paplikar, Petronilla Battista, Regina Jokel
Primary progressive aphasia (PPA) describes a group of language-led dementias. Speech and language therapy is the main available intervention for people with PPA. Despite best practice recommendations for speech and language therapy to include access to group therapies (Volkmer et al, 2023a), research evidence to date has predominantly focused on delivery in individual sessions. The aim of this study was to gather the collective intelligence of expert speech and language therapists/pathologists delivering group therapy for people with PPA to synthesize guidance for clinicians. This paper describes a qualitative study using narrative synthesis methods. Data were collected using the Template for Intervention Description and Replication - TIDiER. Eight respondents described a total of 17 different groups. Respondents worked across healthcare, research clinics and third sector organizations in Australia, Canada, Spain, the USA and the UK. For the purposes of analysis, groups were divided into two main types: (1) groups delivering specific therapy interventions; and (2) groups providing broader opportunities for conversational practice and support. This initial synthesis of the current state of the art in PPA therapy groups highlights several important considerations around candidacy, content and ecological validity of delivering group intervention for people with PPA.
原发性进行性失语症(PPA)是一组以语言为主导的痴呆症。言语和语言治疗是针对 PPA 患者的主要干预措施。尽管最佳实践建议言语和语言治疗应包括团体治疗(Volkmer et al, 2023a),但迄今为止的研究证据主要集中在个人治疗方面。本研究旨在收集为 PPA 患者提供团体治疗的专业言语和语言治疗师/病理学家的集体智慧,为临床医生提供综合指导。本文介绍了一项采用叙事综合法进行的定性研究。数据收集使用了干预措施描述和复制模板(Template for Intervention Description and Replication - TIDiER)。八名受访者共描述了 17 个不同的小组。受访者在澳大利亚、加拿大、西班牙、美国和英国的医疗保健机构、研究诊所和第三部门组织工作。为了便于分析,小组主要分为两类:(1) 提供特定治疗干预的小组;(2) 为对话实践和支持提供更广泛机会的小组。对当前 PPA 治疗小组研究现状的初步综述强调了为 PPA 患者提供小组干预的候选资格、内容和生态有效性方面的几个重要考虑因素。
{"title":"Group interventions for people with primary progressive aphasia and their care partners: Considerations for clinical practice.","authors":"Anna Volkmer, Alessa Hausmann, Avanthi Paplikar, Petronilla Battista, Regina Jokel","doi":"10.1080/09602011.2024.2391338","DOIUrl":"https://doi.org/10.1080/09602011.2024.2391338","url":null,"abstract":"<p><p>Primary progressive aphasia (PPA) describes a group of language-led dementias. Speech and language therapy is the main available intervention for people with PPA. Despite best practice recommendations for speech and language therapy to include access to group therapies (Volkmer et al, 2023a), research evidence to date has predominantly focused on delivery in individual sessions. The aim of this study was to gather the collective intelligence of expert speech and language therapists/pathologists delivering group therapy for people with PPA to synthesize guidance for clinicians. This paper describes a qualitative study using narrative synthesis methods. Data were collected using the Template for Intervention Description and Replication - TIDiER. Eight respondents described a total of 17 different groups. Respondents worked across healthcare, research clinics and third sector organizations in Australia, Canada, Spain, the USA and the UK. For the purposes of analysis, groups were divided into two main types: (1) groups delivering specific therapy interventions; and (2) groups providing broader opportunities for conversational practice and support. This initial synthesis of the current state of the art in PPA therapy groups highlights several important considerations around candidacy, content and ecological validity of delivering group intervention for people with PPA.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-29"},"PeriodicalIF":1.7,"publicationDate":"2024-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114868","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-29DOI: 10.1080/09602011.2024.2387376
Rebecca Roberts, Reena Vohora, Nele Demeyere
ABSTRACTEmotional difficulties are common after stroke and up to one third of stroke-survivors develop post-stroke depression. Psychological distress in this population remains poorly understood, despite high prevalence and secondary implications. One established predictor of depressive symptoms after stroke is cognitive impairment, however, the mechanism underlying this relationship is unclear. This research investigated the potential role of stroke-related illness appraisals as a mediating factor to this known association. Seventy-seven participants, aged 45-94, were consecutively recruited from inpatient stroke units in Oxfordshire over 15-months and completed assessments of mood, cognition and illness appraisals, which were analyzed cross-sectionally. As expected, cognitive impairment significantly predicted depressive symptoms. Importantly, this relationship was shown to be mediated by perceptions of threat and control. Higher levels of cognitive impairment were significantly associated with lower perceived control and higher perceived threat, which partially explained the relationship between cognitive impairment and depressive symptoms. Perceptions of illness coherence were predictive of depressive symptoms but not associated with degree of cognitive impairment. This research has implications for the management of cognitive impairment in the early stages after stroke and suggests that illness appraisals may be an important intervention target for reducing depressive symptoms in patients with post-stroke cognitive impairments.
ABSTRACTEmotional difficulties are common after stroke and up to one third of stroke-survivors develop post-stroke depression.尽管发病率高且具有次要影响,但人们对这一人群的心理困扰仍然知之甚少。认知障碍是中风后抑郁症状的一个既定预测因素,但这种关系的内在机制尚不清楚。本研究调查了中风相关疾病评价作为这一已知关联的中介因素的潜在作用。在 15 个月的时间里,从牛津郡的中风住院部连续招募了 77 名年龄在 45-94 岁之间的参与者,他们完成了对情绪、认知和疾病评价的评估,并对评估结果进行了横截面分析。不出所料,认知障碍能明显预测抑郁症状。重要的是,这种关系受到威胁感和控制感的影响。认知障碍程度越高,感知到的控制力越低,感知到的威胁越高,这在一定程度上解释了认知障碍与抑郁症状之间的关系。对疾病连贯性的感知可预测抑郁症状,但与认知障碍程度无关。这项研究对脑卒中后早期认知障碍的管理具有重要意义,并表明疾病评价可能是减少脑卒中后认知障碍患者抑郁症状的一个重要干预目标。
{"title":"Understanding the role of illness perceptions in the relationship between cognitive and emotional difficulties after stroke.","authors":"Rebecca Roberts, Reena Vohora, Nele Demeyere","doi":"10.1080/09602011.2024.2387376","DOIUrl":"10.1080/09602011.2024.2387376","url":null,"abstract":"<p><p><b>ABSTRACT</b>Emotional difficulties are common after stroke and up to one third of stroke-survivors develop post-stroke depression. Psychological distress in this population remains poorly understood, despite high prevalence and secondary implications. One established predictor of depressive symptoms after stroke is cognitive impairment, however, the mechanism underlying this relationship is unclear. This research investigated the potential role of stroke-related illness appraisals as a mediating factor to this known association. Seventy-seven participants, aged 45-94, were consecutively recruited from inpatient stroke units in Oxfordshire over 15-months and completed assessments of mood, cognition and illness appraisals, which were analyzed cross-sectionally. As expected, cognitive impairment significantly predicted depressive symptoms. Importantly, this relationship was shown to be mediated by perceptions of threat and control. Higher levels of cognitive impairment were significantly associated with lower perceived control and higher perceived threat, which partially explained the relationship between cognitive impairment and depressive symptoms. Perceptions of illness coherence were predictive of depressive symptoms but not associated with degree of cognitive impairment. This research has implications for the management of cognitive impairment in the early stages after stroke and suggests that illness appraisals may be an important intervention target for reducing depressive symptoms in patients with post-stroke cognitive impairments.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-19"},"PeriodicalIF":1.7,"publicationDate":"2024-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114869","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A bacterial brain abscess (BA) is a focal brain infection with largely unknown long-term implications. This prospective study assessed the frequency of fatigue and symptoms of depression at 8 weeks and 1 year after BA and examined the relationship between fatigue, depressive symptoms, and cognitive status. Twenty BA-patients (age 17-73; 45% female) were assessed for fatigue, depression, memory, and executive functions. Fatigue rates were 40-65% at 8 weeks and 25-33% at 1 year on various fatigue questionnaires. Patient Health Questionnaire indicated symptoms of depression in 10% at the 8-week follow-up only. Relevant comorbidities and vocational outcomes were not associated with fatigue or symptoms of depression. Mean fatigue scores improved significantly between the two-time points. Greater fatigue was related to subjective problems with working memory, inhibition, self-monitoring, and emotional control and worse objective verbal memory performance. Symptoms of depression were associated with one out of two fatigue measures. We conclude that fatigue is common in the first year after BA, and higher levels of fatigue are related to more cognitive problems. Symptoms of clinical depression were rare. These findings underscore fatigue as an important consequence of BA and emphasize the necessity for targeted rehabilitation interventions.
细菌性脑脓肿(BA)是一种局灶性脑部感染,其长期影响尚不清楚。这项前瞻性研究评估了脑脓肿术后 8 周和 1 年的疲劳频率和抑郁症状,并研究了疲劳、抑郁症状和认知状况之间的关系。研究人员对 20 名 BA 患者(17-73 岁;45% 为女性)进行了疲劳、抑郁、记忆和执行功能评估。在各种疲劳问卷中,8周时的疲劳率为40%-65%,1年时为25%-33%。患者健康问卷显示,仅在 8 周随访时有 10% 的患者出现抑郁症状。相关合并症和职业结果与疲劳或抑郁症状无关。在两个时间点之间,平均疲劳评分有了明显改善。更严重的疲劳与工作记忆、抑制、自我监控和情绪控制方面的主观问题以及更差的客观言语记忆表现有关。抑郁症状与两项疲劳测量中的一项相关。我们的结论是,疲劳在 BA 后的第一年很常见,疲劳程度越高,认知问题越多。临床抑郁症状很少见。这些发现强调了疲劳是脑损伤后的一个重要后果,并强调有必要采取有针对性的康复干预措施。
{"title":"Fatigue and depression at 8 weeks and 1 year after bacterial brain abscess and their relationship with cognitive status.","authors":"Ane Gretesdatter Rogne, Solrun Sigurdardottir, Rune Raudeberg, Bjørnar Hassel, Daniel Dahlberg","doi":"10.1080/09602011.2024.2393361","DOIUrl":"https://doi.org/10.1080/09602011.2024.2393361","url":null,"abstract":"<p><p>A bacterial brain abscess (BA) is a focal brain infection with largely unknown long-term implications. This prospective study assessed the frequency of fatigue and symptoms of depression at 8 weeks and 1 year after BA and examined the relationship between fatigue, depressive symptoms, and cognitive status. Twenty BA-patients (age 17-73; 45% female) were assessed for fatigue, depression, memory, and executive functions. Fatigue rates were 40-65% at 8 weeks and 25-33% at 1 year on various fatigue questionnaires. Patient Health Questionnaire indicated symptoms of depression in 10% at the 8-week follow-up only. Relevant comorbidities and vocational outcomes were not associated with fatigue or symptoms of depression. Mean fatigue scores improved significantly between the two-time points. Greater fatigue was related to subjective problems with working memory, inhibition, self-monitoring, and emotional control and worse objective verbal memory performance. Symptoms of depression were associated with one out of two fatigue measures. We conclude that fatigue is common in the first year after BA, and higher levels of fatigue are related to more cognitive problems. Symptoms of clinical depression were rare. These findings underscore fatigue as an important consequence of BA and emphasize the necessity for targeted rehabilitation interventions.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-24"},"PeriodicalIF":1.7,"publicationDate":"2024-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114867","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-27DOI: 10.1080/09602011.2024.2393465
Sonya Kim, Frederick W Foley, Vance Zemon
An existing scale of personal growth in caregivers of people with multiple sclerosis (MS) was expanded for use with an acquired brain injury (ABI) population, and was modified following additional psychometric analyses. A cross-sectional online survey was administered to 315 caregiving partners of persons with MS and 310 family caregivers of persons with ABI. Principal component analysis (PCA) performed on the original 32-item instrument yielded a 4-component, 17-item solution with correlated subscales with solid psychometric properties. Subscales were labelled Appreciation, Positivity, Adjustment, and Spirituality. Secondary PCA conducted revealed three subscales (five items each) correlated moderately while the fourth, Spirituality, remained distinct. The sum of the three five-item subscales may serve as a total score. Reliability analysis yielded acceptable-to-high internal consistency. Comparisons of the PGS with existing instruments demonstrated its discriminant/convergent validity. Two kinds of latent class analyses were conducted on the 15-item PGS to identify three latent classes that spanned the neurologic groups, revealing that measurement invariance was held for the instrument in this sample. An instrument with sound psychometric properties was established, designed to assess personal growth in caregivers of individuals with ABI or MS. Future work should explore its value in other populations and as a metric of changes over time.
{"title":"Personal growth in caregivers of persons with brain injury or multiple sclerosis.","authors":"Sonya Kim, Frederick W Foley, Vance Zemon","doi":"10.1080/09602011.2024.2393465","DOIUrl":"https://doi.org/10.1080/09602011.2024.2393465","url":null,"abstract":"<p><p>An existing scale of personal growth in caregivers of people with multiple sclerosis (MS) was expanded for use with an acquired brain injury (ABI) population, and was modified following additional psychometric analyses. A cross-sectional online survey was administered to 315 caregiving partners of persons with MS and 310 family caregivers of persons with ABI. Principal component analysis (PCA) performed on the original 32-item instrument yielded a 4-component, 17-item solution with correlated subscales with solid psychometric properties. Subscales were labelled <i>Appreciation, Positivity, Adjustment, and Spirituality</i>. Secondary PCA conducted revealed three subscales (five items each) correlated moderately while the fourth, <i>Spirituality,</i> remained distinct. The sum of the three five-item subscales may serve as a total score. Reliability analysis yielded acceptable-to-high internal consistency. Comparisons of the PGS with existing instruments demonstrated its discriminant/convergent validity. Two kinds of latent class analyses were conducted on the 15-item PGS to identify three latent classes that spanned the neurologic groups, revealing that measurement invariance was held for the instrument in this sample. An instrument with sound psychometric properties was established, designed to assess personal growth in caregivers of individuals with ABI or MS. Future work should explore its value in other populations and as a metric of changes over time.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-25"},"PeriodicalIF":1.7,"publicationDate":"2024-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142074601","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-12DOI: 10.1080/09602011.2024.2384521
Sharon A Savage, Marina G Cavuoto, Kerryn E Pike
People with transient epileptic amnesia (TEA) experience deficits in memory, however, little is known about their everyday experience of this, and no memory intervention studies have been conducted within this group. Using a two-part qualitative method, this study explored the lived experience of people with TEA and possible avenues for memory intervention. Fourteen people with TEA participated in either a focus group (n = 7) or an online survey (n = 7) to answer questions regarding their memory difficulties, impact on their lives, and strategies to mitigate these problems. Perceived barriers and facilitators to participating in a group memory intervention program were discussed. Thematic content analysis identified key themes regarding impacts on the individual and their relationships. Although some positive outcomes regarding family support and personal acceptance were described, most participants described negative impacts on relationships and mood. A range of strategies to mitigate memory problems were reported, although some people did not use any. Participants identified practical and socio-emotional advantages to memory intervention, with perceived barriers around individual applicability, preferences, and ability to engage. While individual preferences need to be considered, a group-based memory intervention may help address cognitive and mental health concerns, particularly for those newly diagnosed with TEA.
{"title":"Exploring the everyday impacts and memory intervention needs of people with transient epileptic amnesia: A qualitative study.","authors":"Sharon A Savage, Marina G Cavuoto, Kerryn E Pike","doi":"10.1080/09602011.2024.2384521","DOIUrl":"https://doi.org/10.1080/09602011.2024.2384521","url":null,"abstract":"<p><p>People with transient epileptic amnesia (TEA) experience deficits in memory, however, little is known about their everyday experience of this, and no memory intervention studies have been conducted within this group. Using a two-part qualitative method, this study explored the lived experience of people with TEA and possible avenues for memory intervention. Fourteen people with TEA participated in either a focus group (<i>n</i> = 7) or an online survey (<i>n</i> = 7) to answer questions regarding their memory difficulties, impact on their lives, and strategies to mitigate these problems. Perceived barriers and facilitators to participating in a group memory intervention program were discussed. Thematic content analysis identified key themes regarding impacts on the individual and their relationships. Although some positive outcomes regarding family support and personal acceptance were described, most participants described negative impacts on relationships and mood. A range of strategies to mitigate memory problems were reported, although some people did not use any. Participants identified practical and socio-emotional advantages to memory intervention, with perceived barriers around individual applicability, preferences, and ability to engage. While individual preferences need to be considered, a group-based memory intervention may help address cognitive and mental health concerns, particularly for those newly diagnosed with TEA.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-25"},"PeriodicalIF":1.7,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141918125","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-06DOI: 10.1080/09602011.2024.2387065
Hugo Câmara-Costa, Georges Dellatolas, Claire Jourdan, Alexis Ruet, Eléonore Bayen, Claire Vallat-Azouvi, Philippe Allain, Mathilde Chevignard, Philippe Azouvi
{"title":"The 20-item dysexecutive questionnaire after severe traumatic brain injury: Distribution of the total score and its significance.","authors":"Hugo Câmara-Costa, Georges Dellatolas, Claire Jourdan, Alexis Ruet, Eléonore Bayen, Claire Vallat-Azouvi, Philippe Allain, Mathilde Chevignard, Philippe Azouvi","doi":"10.1080/09602011.2024.2387065","DOIUrl":"https://doi.org/10.1080/09602011.2024.2387065","url":null,"abstract":"<p><strong>Trial registration: </strong>ClinicalTrials.gov identifier: NCT01437683..</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-22"},"PeriodicalIF":1.7,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141898931","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-05DOI: 10.1080/09602011.2024.2384518
Funda Ertas-Spantgar, Helmut Hildebrandt, Alexander Gabel, Ina Schiering, Sandra Verena Müller
Individuals with intellectual disabilities often fail to learn complex tasks. Modified Goal Management Training (mGMT) or Errorless Learning combined with assistive technology (App + EL) can help. The goal is to demonstrate the effectiveness of mGMT and/or App + EL in learning complex tasks. We employed a randomized controlled crossover design. One group started with mGMT (N = 16), and the other with App + EL (N = 15). We compared their performance with that of a passive control group (N = 15). The training consisted of six sessions of 30 minutes each. Success was analyzed using the Goal Attainment Scale (GAS). Three different tasks were assessed before and after each intervention period: "Practiced", "Non-Practiced", or "Previously Practiced". Generalization was evaluated through neuropsychological tests. Results indicated that both interventions significantly improved "Practiced" tasks compared with "Non-Practiced" tasks and the control group. Crossing the intervention did not interfere with the stable performance on the "Previously Practiced" task. However, starting with mGMT reduced, but did not eliminate, the efficacy of App + EL after crossing, but this pattern was not observed for the reverse sequence. Only the Tower of London task documented improvements related to interventions. In conclusion, the mGMT and App + EL were effective in learning complex tasks and retaining performance after learning a second task.Trial registration: German Clinical Trials Register identifier: DRKS00021674.
{"title":"Enhancing task performance in adults with intellectual disability through modified goal management training and assistive technology with errorless learning: A randomized controlled trial.","authors":"Funda Ertas-Spantgar, Helmut Hildebrandt, Alexander Gabel, Ina Schiering, Sandra Verena Müller","doi":"10.1080/09602011.2024.2384518","DOIUrl":"https://doi.org/10.1080/09602011.2024.2384518","url":null,"abstract":"<p><p>Individuals with intellectual disabilities often fail to learn complex tasks. Modified Goal Management Training (mGMT) or Errorless Learning combined with assistive technology (App + EL) can help. The goal is to demonstrate the effectiveness of mGMT and/or App + EL in learning complex tasks. We employed a randomized controlled crossover design. One group started with mGMT (<i>N</i> = 16), and the other with App + EL (N = 15). We compared their performance with that of a passive control group (N = 15). The training consisted of six sessions of 30 minutes each. Success was analyzed using the Goal Attainment Scale (GAS). Three different tasks were assessed before and after each intervention period: \"Practiced\", \"Non-Practiced\", or \"Previously Practiced\". Generalization was evaluated through neuropsychological tests. Results indicated that both interventions significantly improved \"Practiced\" tasks compared with \"Non-Practiced\" tasks and the control group. Crossing the intervention did not interfere with the stable performance on the \"Previously Practiced\" task. However, starting with mGMT reduced, but did not eliminate, the efficacy of App + EL after crossing, but this pattern was not observed for the reverse sequence. Only the Tower of London task documented improvements related to interventions. In conclusion, the mGMT and App + EL were effective in learning complex tasks and retaining performance after learning a second task.<b>Trial registration:</b> German Clinical Trials Register identifier: DRKS00021674.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-22"},"PeriodicalIF":1.7,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141894900","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-05DOI: 10.1080/09602011.2024.2384519
Sarah Louise Mason, Roger Alistair Barker, Katie Andresen, Fergus Gracey, Catherine Ford
Although one of the most prevalent and impactful features of Huntington's disease (HD), little is known about the impact of apathy on HD caregivers, although there is evidence it affects perceptions of distress and burden. Given the importance of the caregivers, we aimed to explore the lived experience of people supporting someone with HD and associated apathy. Semi-structured interviews were conducted with 11 caregivers and analysed using reflective thematic analysis, informed by a phenomenological framework. Five overarching themes were produced: (1) What even is apathy? (2) It makes my life harder: the practical impact of apathy, (3) They haven't forgotten me, but they have forgotten that they ever loved me, (4) I'm grieving for someone who hasn't died yet, and (5) I need a safe space to say what I really feel without fear of judgement. Inter-woven between these themes were complex narratives about the unspoken nature of HD, the invisibility of caregivers who felt trapped and unheard, and the one-sided nature of loving someone with the disease. Findings are discussed in relation to theoretical frameworks of anticipatory grief and ambiguous loss, and situated within the wider literature on caregiving for people with a neurodegenerative condition.
冷漠是亨廷顿氏病(Huntington's disease,HD)最普遍、影响最大的特征之一,但人们对冷漠对 HD 护理人员的影响却知之甚少,尽管有证据表明它会影响对痛苦和负担的感知。鉴于照护者的重要性,我们旨在探究照护 HD 患者及相关冷漠症患者的生活经历。我们对 11 名护理人员进行了半结构式访谈,并在现象学框架的指导下采用反思性主题分析法对访谈内容进行了分析。共产生了五大主题:(1)冷漠到底是什么?(2)它让我的生活更加艰难:冷漠的实际影响;(3)他们并没有忘记我,但他们已经忘记了他们曾经爱过我;(4)我在为一个还没有死去的人悲伤;(5)我需要一个安全的空间来说出我的真实感受,而不用担心别人的评判。这些主题之间交织着复杂的叙述,涉及 HD 的不可言说性、照顾者的无形性(他们感到被困和无人倾听)以及爱一个患病者的片面性。研究结果将结合预期悲痛和模糊损失的理论框架进行讨论,并与更广泛的神经退行性疾病患者护理文献相结合。
{"title":"The meaning of apathy in Huntington's disease: A qualitative study of caregiver perspectives.","authors":"Sarah Louise Mason, Roger Alistair Barker, Katie Andresen, Fergus Gracey, Catherine Ford","doi":"10.1080/09602011.2024.2384519","DOIUrl":"https://doi.org/10.1080/09602011.2024.2384519","url":null,"abstract":"<p><p>Although one of the most prevalent and impactful features of Huntington's disease (HD), little is known about the impact of apathy on HD caregivers, although there is evidence it affects perceptions of distress and burden. Given the importance of the caregivers, we aimed to explore the lived experience of people supporting someone with HD and associated apathy. Semi-structured interviews were conducted with 11 caregivers and analysed using reflective thematic analysis, informed by a phenomenological framework. Five overarching themes were produced: (1) What even is apathy? (2) It makes my life harder: the practical impact of apathy, (3) They haven't forgotten me, but they have forgotten that they ever loved me, (4) I'm grieving for someone who hasn't died yet, and (5) I need a safe space to say what I really feel without fear of judgement. Inter-woven between these themes were complex narratives about the unspoken nature of HD, the invisibility of caregivers who felt trapped and unheard, and the one-sided nature of loving someone with the disease. Findings are discussed in relation to theoretical frameworks of anticipatory grief and ambiguous loss, and situated within the wider literature on caregiving for people with a neurodegenerative condition.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-30"},"PeriodicalIF":1.7,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141894901","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-02DOI: 10.1080/09602011.2024.2383340
Jill H A Hwang, Marina Downing, Jennie L Ponsford
Changes in sexual functioning and wellbeing after a traumatic brain injury (TBI) are common but remain poorly addressed. Little is known about the lived experiences and perspectives of individuals with TBI. Through semi-structured interviews with individuals with TBI (n = 20), this qualitative study explored their experiences with post-TBI sexuality, along with their needs and preferences for receiving sexuality support and service delivery. Three broad themes were identified through reflexive thematic analysis of interview transcripts. First, individuals differed significantly at the start of their journeys in personal attributes, TBI-associated impacts, and comfort levels in discussing sexuality. Second, journeys, feelings, and perspectives diverged based on the nature of post-TBI sexuality. Third, whilst responses to changes and preferences for support varied widely, individuals felt that clinicians were well-placed to help them navigate this area of their lives. The impacts felt by individuals with TBI, and the infrequency of clinical discussions highlight the need for clinician education and clinically validated assessment and treatment tools to improve how post-TBI sexuality is addressed and managed.
{"title":"\"Maybe if this was addressed sooner, maybe things might be different in our relationship. I don't know. But who knows?\" Sexuality after TBI and its place in healthcare: A qualitative exploration of survivors' experiences.","authors":"Jill H A Hwang, Marina Downing, Jennie L Ponsford","doi":"10.1080/09602011.2024.2383340","DOIUrl":"https://doi.org/10.1080/09602011.2024.2383340","url":null,"abstract":"<p><p>Changes in sexual functioning and wellbeing after a traumatic brain injury (TBI) are common but remain poorly addressed. Little is known about the lived experiences and perspectives of individuals with TBI. Through semi-structured interviews with individuals with TBI (<i>n</i> = 20), this qualitative study explored their experiences with post-TBI sexuality, along with their needs and preferences for receiving sexuality support and service delivery. Three broad themes were identified through reflexive thematic analysis of interview transcripts. First, individuals differed significantly at the start of their journeys in personal attributes, TBI-associated impacts, and comfort levels in discussing sexuality. Second, journeys, feelings, and perspectives diverged based on the nature of post-TBI sexuality. Third, whilst responses to changes and preferences for support varied widely, individuals felt that clinicians were well-placed to help them navigate this area of their lives. The impacts felt by individuals with TBI, and the infrequency of clinical discussions highlight the need for clinician education and clinically validated assessment and treatment tools to improve how post-TBI sexuality is addressed and managed.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"1-22"},"PeriodicalIF":1.7,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141879842","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-01Epub Date: 2023-09-14DOI: 10.1080/09602011.2023.2256964
Luke R Miller, Ross Divers, Christopher Reed, Jared Cherry, Abihail Patrick, Matthew Calamia
Meaningful steps have been taken toward using holistic approaches in outpatient rehabilitation for traumatic brain injury (TBI) (i.e., treating the whole individual); however, research and practice continue to disproportionately focus on adapting to physical and cognitive changes. Research suggests treatment focusing on individual values may be important for psychological adjustment after TBI. The current study sought to explore individual values across multiple life domains in those with TBI as well as what values outpatient rehabilitation was helpful for, and to examine discrepancies between these factors (i.e., value-consistent rehabilitation) in relation to important long-term treatment outcomes. 215 adults with a history of TBI who had participated in outpatient rehabilitation completed online surveys assessing how consistent outpatient rehabilitation was with individual values, psychological flexibility, and quality of life. The life domains with the greatest discrepancies between individual importance and rehabilitation helpfulness were spirituality, intimate relations, and family relations. Greater value-consistent rehabilitation was associated with higher levels of psychological flexibility and quality of life beyond demographics and injury characteristics. Our findings provide further support in favour of holistic, client-centred approaches that are facilitated by neurological rehabilitation programs.
{"title":"Value-consistent rehabilitation is associated with long-term psychological flexibility and quality of life after traumatic brain injury.","authors":"Luke R Miller, Ross Divers, Christopher Reed, Jared Cherry, Abihail Patrick, Matthew Calamia","doi":"10.1080/09602011.2023.2256964","DOIUrl":"10.1080/09602011.2023.2256964","url":null,"abstract":"<p><p>Meaningful steps have been taken toward using holistic approaches in outpatient rehabilitation for traumatic brain injury (TBI) (i.e., treating the whole individual); however, research and practice continue to disproportionately focus on adapting to physical and cognitive changes. Research suggests treatment focusing on individual values may be important for psychological adjustment after TBI. The current study sought to explore individual values across multiple life domains in those with TBI as well as what values outpatient rehabilitation was helpful for, and to examine discrepancies between these factors (i.e., value-consistent rehabilitation) in relation to important long-term treatment outcomes. 215 adults with a history of TBI who had participated in outpatient rehabilitation completed online surveys assessing how consistent outpatient rehabilitation was with individual values, psychological flexibility, and quality of life. The life domains with the greatest discrepancies between individual importance and rehabilitation helpfulness were spirituality, intimate relations, and family relations. Greater value-consistent rehabilitation was associated with higher levels of psychological flexibility and quality of life beyond demographics and injury characteristics. Our findings provide further support in favour of holistic, client-centred approaches that are facilitated by neurological rehabilitation programs.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":" ","pages":"955-973"},"PeriodicalIF":1.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10244015","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}