No description available.

Yes / Background. Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes. Methods. We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews. Results. Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family’s (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia. Conclusion. Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently / This research was supported by the UK Economic and Social Research Council and the National Institute of Health Research Grant number NIHR/ESRC (S.R., P.R, L.M., G.L., C.C., S.C., ES/L 001780/1); the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care North Thames at Bart’s Health NHS Trust (SR, PP, GL); the UCLH NIHR Biomedical Research Centre (GL, CC); and the Johns Hopkins Alzheimer’s Disease Research Center (C.L., P50AG005146, PI: Albert).

No description available.

Research in the area of caregiving has tended to focus on the impact of the caregiving experience itself without consideration of continued psychological distress for caregivers after institutionalisation or death. Seven caregivers of loved ones with Alzheimer's Dementia (mostly spousal) were interviewed about their experiences of caregiving and their emotional well-being after placement of their loved one into a residential care facility or death. The nature of the carers relationship with their loved one (e.g. highly dependent), lack of social supports, inactivity and a poor experience of transition into care seemed to be factors relating to poorer outcomes for these caregivers. Utilisation of social supports, involvement in pleasant events, adequate preparation and information relating to the disease and collaboratively planned transition into care played protective roles for the remaining carers who reported decreased levels of anxiety, guilt, depression and stress post-institutionalisation/death. The implications of the current research for practise, policy change and prevention are extensive and suggest that risk factors may be identifiable and thus poorer mental health outcomes in caregivers preventable. A need for greater support to be made available to caregivers is necessary.

Purpose/Objectives: To explore the experience and processes of hope for older women who are bereaved palliative caregivers and to develop a substantive theory of their hope experience.<p> Design/Research Approach: Qualitative, constructivist grounded theory <p> Setting: Participants homes in a small Canadian city<p> Sample/Participants: Thirty interviews with thirteen women, ages 60-79, within the first year of bereavement after providing care to a spouse with terminal cancer, also twelve hope diaries<p> Methods/Methodologic Approach: Open-ended, in-depth audio-taped interviews, hope diaries, transcribed verbatim and analyzed using constant comparative analysis<p> Main Research Variables: Participants descriptions of their experience of hope Findings: Participants defined hope as a gradual process of regaining inner strength and building self-confidence, to make sense of their totally changed situations. They were learning to stay positive, and move ahead with their lives. Hope was very important to the participants. The participants main concern was losing hope which they dealt with by searching for new hope through finding balance, finding new perspectives, and finding new meaning and purpose. The theoretical model resembles a spiral and takes place within a social context.<p> Conclusions: Older women who are bereaved after caregiving for a palliative cancer patient are at risk for losing hope and require support as they search for new hope and move through the complex processes of bereavement. <p> Implications for Nursing/Interpretation: Health care professionals can provide appropriate and effective care that facilitates positive and healthy bereavement outcomes by monitoring bereaved palliative caregivers at risk for losing hope and supporting them as they search for new hope to find their own way through bereavement.

Purpose/Objectives: To explore the experience and processes of hope for older women who are bereaved palliative caregivers and to develop a substantive theory of their hope experience.<p> Design/Research Approach: Qualitative, constructivist grounded theory <p> Setting: Participants homes in a small Canadian city<p> Sample/Participants: Thirty interviews with thirteen women, ages 60-79, within the first year of bereavement after providing care to a spouse with terminal cancer, also twelve hope diaries<p> Methods/Methodologic Approach: Open-ended, in-depth audio-taped interviews, hope diaries, transcribed verbatim and analyzed using constant comparative analysis<p> Main Research Variables: Participants descriptions of their experience of hope Findings: Participants defined hope as a gradual process of regaining inner strength and building self-confidence, to make sense of their totally changed situations. They were learning to stay positive, and move ahead with their lives. Hope was very important to the participants. The participants main concern was losing hope which they dealt with by searching for new hope through finding balance, finding new perspectives, and finding new meaning and purpose. The theoretical model resembles a spiral and takes place within a social context.<p> Conclusions: Older women who are bereaved after caregiving for a palliative cancer patient are at risk for losing hope and require support as they search for new hope and move through the complex processes of bereavement. <p> Implications for Nursing/Interpretation: Health care professionals can provide appropriate and effective care that facilitates positive and healthy bereavement outcomes by monitoring bereaved palliative caregivers at risk for losing hope and supporting them as they search for new hope to find their own way through bereavement.

A qualitative study was carried out to explore foster carers’ perceptions of respite care and their perceptions of the psychosocial effects of this service for the children in their care. In order to achieve this aim an Interpretative Phenomenological Analysis approach was utilised for data collection and analysis. This yielded six themes: carers’ perceptions being influenced by variants of the respite care environment, respite care being beneficial and necessary, concerns about agency provision of respite, factors carers attribute as contributing to its psychosocial effects on foster children, the observed psychosocial effects on foster children, and ways respite care could be improved. An additional finding was also reported, as foster carers’ views of fostering and their foster children appeared to be a modifying variable influencing carers’ perceptions of respite care. These findings illustrated that there are differential effects of respite for carers compared with foster children in some cases, resulting in a tension between meeting carers’ needs and the needs of the children in their care. Comparisons and corroboration of findings from existing literature is included in the discussion as well as the implications of these findings and future research directions.

Yes / Objectives: A novel model of resilience was tested in caregivers of people with mild-to-moderate dementia and was extended to explore whether including self-efficacy, optimism, and self-esteem improved its predictive value. Design: Cross-sectional. Setting: Data from the IDEAL cohort were used. Participants: The study comprised 1222 caregivers of people with dementia. Measurements: A composite resilience score was calculated from five measures. Multivariable regressions were used to investigate factors associated with resilience. Results: Greater resilience was associated with being older, being male, and caregiving for older people with dementia. Greater resilience was also observed when people with dementia had fewer functional difficulties and/or fewer neuropsychiatric symptoms, there was a stronger dyadic relationship, and the caregiver had fewer social restrictions, less neuroticism, and greater perceived competence. Surprisingly, caregiver self-efficacy, optimism, and self-esteem were unrelated to resilience. Conclusion: Caregivers of people with mild-to-moderate dementia generally scored well for resilience. Resilience was associated with both the personal characteristics of caregivers and level of care need among people with dementia. Future work is needed to determine whether the caregivers in this cohort appeared resilient because the care recipients had relatively low care needs and consequently placed fewer demands on caregiver well-being than would be the case where dementia is more advanced. / ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J.A. Pickett, C. Quinn, J. Rusted, J. Thom. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001. Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, J. Rusted. This report is independent research supported by the National Institute for Health and Care Research Applied Research Collaboration South-West Peninsula. L. Clare acknowledges support from the NIHR Applied Research Collaboration South-West Peninsula.

本文主旨在於由少年家庭照顧者的觀點，詮釋自身之照顧歷程。透過敘事研究法深入少年家庭照顧者的內心世界，探討少年家庭照顧者角色形成因素、照顧歷程之主觀感受與經驗詮釋、承擔照顧責任對少年發展的影響、因應壓力方式以及社會福利層面及個人之需求，並根據研究結果提出對國內家庭照顧者服務及少年福利服務之建議。 本研究共訪談四位有效受訪者，經過整理分析研究結果發現，少年家庭照顧者角色形成的因素，包含「文化規範」、「交換的報答回饋」、「情感性因素」、「潛在照顧者的缺乏」及「家庭系統分工考量」五個層面。 少年照顧者的感受可歸納為以下幾點：1.少年失去了童年與少年時期應享有的福利；2.成年家屬花費許多時間和精力在失能家屬身上，忽略了家中其他成員；或因轉而對少年照顧者產生過份的期待；3.永無止盡的工作常令少年家庭照顧者感到疲累不堪；4.失能家屬往往會有突發狀況發生，照顧者必須隨時隨地陪伴在失能家屬左右，沒有自己的時間與空間；5.少年家庭缺乏足夠的經濟支持，除了負擔家務照料失能家屬外，少年仍必須工作賺取薪資。 照顧角色對少年發展的助益包括：少年照顧者會建立出一套個人對生活、責任、情感的架構，將負面情境視為對生命的正向考驗，且較其他同儕更為實際與成熟的思考態度與挫折容忍適應程度，且因未來的規劃而產生自我督促的力量。另外少年照顧者較具同情心與利他主義，對於自身存在的價值有高度的評價，亦更具有關懷弱勢者與體恤他人的能力。 對少年發展的限制方面，少年家庭照顧者不易保有自我的自主性及獨立性。受訪者產生心理分離的矛盾與衝突，既渴望保有自我獨立性，卻又無法放下家人的負擔。而日以繼夜的制式化生活，可能有礙個體發展自我獨特的心理社會價值觀。另外，角色逆轉導致少年照顧者承受角色衝突，出現焦慮、怨恨的情緒。 照顧責任對少年家庭照顧者生活的影響包括：家庭凝聚力與成員間親密感增進；唸書時間與照顧時間互相擠壓而無法兼顧學業與照顧；照顧工作影響少年參與社交活動的時間；對未來的考量安排必須符合現實生活的所需。 少年照顧者感到一般壓力情境包括：遭遇到生活事件改變或接踵而來的事件；人際關係的壓力以及課業成績的壓力；因照顧責任所衍生的壓力則包括受照顧者的不合作與責備、父母不合理的期望、家庭經濟壓力，擔心未來沒有人照顧失能家屬，社會他人的異樣眼光、及外人與社會道德期待也都是少年照顧者因為照顧者角色所必須額外面對的壓力。少年照顧者因應壓力所採行的策略包括：透過傾訴宣洩情緒、轉移注意力，找其他的事作、暫時離開現場、積極地強調正面意義，或以快速轉換念頭的方式調整負面情緒。最後研究分析少年家庭照顧者所使用的社會資源及其需求，少年家庭照顧者的人際支持網絡十分薄弱，使用的資源有限。絕大多數的社會支持均以經濟層面的協助為主。少年照顧者的需求包括：替代性照顧服務、期待社會以平等的眼光看待失能家屬、充足的資訊和心理輔導以及能夠獨處喘息的時間。 因應研究結果，研究者提出政策及實務上之建議，首要保障少年照顧者身為 少年的人權，提供符合少年照顧者需求之福利服務，並結合所有相關單位共同合作滿足少年照顧者的獨特需求。 / The purposes of this qualitative research include: (1)Analyze the factors of young carer’s becoming. (2) Understand young carer’s feelings about care experience. (3) Understand what kind of influences when teenagers must care for disabled family members. (5) Analyze young carer’s pressures and how they coping with. (6) Accord to research findings to propose welfare organizations and government some suggestions. Four young carer have interviewed. The research discovered the factors of young carer’s becoming are including culture standard , exchanging to pay back, emotions with family members, lacked potential carer and family system factors. Young carer’s feeling about care experiences are including they lost their childhoods, their parents have excessive hopes to young carer, too many works made young carer feel tired, and they have no time to play with their friends or to do other things. The influences about teenager care for disabled family members are including the positive and the negative sides. The positive side is young carer have more eympathy and maturation than other same generations. The negative sides are they lost decision-making powers and institutionalized life style will let them feel depressed. Young carer’s pressures are including teenager’s and carer’s pressures. The way that they cope with the pressures are leading off feelings, transfering attention, doing other things, impermanent leaving or to find front meanings. Finally this research discovered young carer with weak support . They need rest time, enough information, and psychology counseling etc. According to research discoveres, researcher propose three suggestions about policy and welfare organzations. ◆ To ensure young carer’s human rights , remember they still are teenagers. ◆ Providing welfare services which fitting in with young carer. ◆ Connecting with all related units to satisfy young carer’s individual needs.

The current study set out to explore the affect and significance of differing parental conditions on the experiences commonly reported by young carers. Previous studies on young caring have reflected on the impacts of caring for parents with particular `types' of conditions (normally physical disability or mental health problems) or a specific diagnosis. However, these have not contrasted or discriminated young carers' experiences according to different parental conditions. To address this gap in knowledge, the current study considered the experiences of young carers supporting parents with different `types' of conditions, namely physical disability, mental health problems and substance misuse. The participants discussed the impact of caring on a range of areas such as their education, social life, health, spatial transitions, relationships and role reversals. Additionally, definitional issues were considered. This included young carers own understanding and subscription to the term `young carer' and the significance of this to their identification. In terms of methodology, the study was firmly grounded within the qualitative domain and influenced by a constructive-interpretive paradigm, specifically symbolic interactionism. Within this, the grounded theory approach was used insofar as it provided a method to conduct the study. A range of data-collection techniques were employed. Semi-structured interviewing was the principal method used, with additional data gathered through a self-esteem tool, observations and diaries. The sample consisted of 30 young carers. The results showed firstly that the participants did not necessarily comprehend the term `young carer' or apply it to their own caring roles at home. Arguably, this contributed to their `hidden-ness' (i. e. invisibility) and as a result their needs were overlooked. The need for a new definition which embraces their understandings, together with appropriate awareness-raising programmes within schools and for key social care and health professionals was evidenced and called for. Secondly, whilst the participants shared common experiences regardless of the nature of the parental condition, other issues reported were specific to particular situations. Those most adversely affected were caring in the contexts of parental substance misuse or parental mental health problems. Such young carers were dually disadvantaged, as they experienced the most extreme difficulties, yet their caring roles and needs were least likely to be addressed. The experiential differences reported by young carers in different caring contexts have important practice implications. Nevertheless, the extent to which the experiences reported could be wholly attributed to the caring role, rather than other structural and socio-economic factors was questionable.