Jeg vil være oppegående så lenge jeg kan : En kvalitativ studie av livet med funksjonsnedsettelser og tekniske hjelpemidler

Formål: Hensikten med denne studien er å undersøke hvilken betydning det har å leve med funksjonsnedsettelser og tekniske hjelpemidler. Tilnærmingen er todelt; å redegjøre for hvordan hjelpemiddelbrukere opplever å leve med funksjonsnedsettelse og tekniske hjelpemidler, samt å utdype hvordan man kan forstå deres opplevelser. Teoretisk forankring: Studien har en teoretisk forankring innen «Disability studies» med fokus på ulike forståelser av funksjonshemning. Både den medisinske, sosiale og relasjonelle modellen for funksjonshemning er viktige teoretiske referanser som deltagernes fortellinger forstås i lys av. Sentrale teoretiske tilnærminger til normalitet og avvik har dessuten en vesentlig plass i studien. Metode: Kvalitative forskningsmetoder med en kombinasjon av (deltagende) observasjon og intervju har vært utgangspunkt for å skape det empiriske materialet i studien. Det er i alt fire deltagere som er blitt observert og intervjuet i studien. Materialet består av tekst fra feltnotater og transkriberte intervju som er meningsfortettet. Materialet fra begge metodene inngår i studien og anvendes sammen i analysen. Resultat: Deltagerne konstruerer til dels forskjellige betydninger av hvordan de opplever å leve med funksjonsnedsettelse, samtidig som de også beskriver felles opplevelser. Det kan være vanskelig å forholde seg til en identitet som funksjonshemmet og/eller syk. Ønsket om å være normale, oppegående mennesker på tross av sin funksjonshemning fremstår som sentralt. Synligheten av deres funksjonsnedsettelse er bestemmende for hvordan andre forstår den, og andres forståelse har konsekvenser for hvordan de forstår seg selv. Å bli utsatt for det som oppfattes som negativ oppmerksomhet kan være hemmende for deltagernes livsførsel. De forteller dessuten om ubehagelige følelsesmessige reaksjoner i møte med andres «blikk» på dem og på rullestolen. Samtidig fremkaller også fysiske barrierer i samfunnet sterke reaksjoner og er av betydning for deres liv. Konklusjon: Studien viser at mange forhold har betydning for hvordan det å leve med funksjonsnedsettelse og hjelpemidler oppleves. Forholdene er komplekst forbundet, og det er behov for forskning som kan kaste lys over de komplekse sammenhengene knyttet til funksjonsnedsettelse og hjelpemiddelbruk

MODEL KEPEMIMPINAN KEPALA SEKOLAH DALAM PENINGKATAN MUTU SEKOLAH DI SMA NEGERI I DUKUPUNTANG KABUPATEN CIREBON

Yoyoh Rokayah : Masalah pendidikan merupakan kegiatan yang kompleks. Pemberian otonomi yang luas kepada sekolah dalam mengembangkan kurikulum dan pembelajaran beserta sitem evaluasinya merupakan kepedulian pemerintah terhadap upaya peningkatan mutu pendidikan. Peningkatan mutu menjadi semakin penting bagi institusi yang digunakan untuk memperoleh kontrol yang lebih baik melalui usahanya sendiri. Keberhasilan institusi pendidikan dalam menjalankan program yang telah direncanakan perlu didukung dengan sebuah kepemimpinan kepala sekolah, mengingat kepemimpinan merupakan motor penggerak bagi sumber daya yang dimiliki lembaga. Rumusan masalah dalam penelitian ini adalah: a. Bagaimanakah model kepemimpinan kepala sekolah ? b. Bagaimanakah standar sekolah yang bermutu, dan c. Apa model kepemimpinan dan pelaksanaan kepemimpinan yang cocok dilaksanakan di sekolah SMA Negeri I Dukupuntang dalam peningkatan mutu sekolah ?. Tujuan penelitian meliputi: a. Menjelaskan model kepemimpinan kepala sekolah, b. Menjelaskan standar sekolah yang bermutu, c. Menjelaskan model dan pelaksanaan kepemimpinan kepala sekolah yang cocok dilaksanakan di SMA Negeri I Dukupuntang. Penelitian ini merupakan penelitian kualitatif dengan menggunakan langkah-langkah observasi, pengamatan, studi dokumen, dan informan. Kesimpulan: a. Model kepemimpinan kepala sekolah adalah berkisar kepada model dan model kepemimpinan yang mana yang paling efektif dan efisien dalam mencapai tujuan lembaga. Dalam implementasinya, kepala sekolah sebagai leader dapat dianalisis dari model kepemimpinan, yaitu; Model kepemimpinan pada umumnya adalah model kepemimpinan pribadi, Model kepemimpinan non pribadi, model kepemimpinan otoriter, model kepemimpinan demokratis, model kepemimpinan paternalistis, model kepemimpinan menurut bakat. Di samping model-model kepemimpinan tersebut, ada pendapat yang mengemukakan menjadi tiga model antara lain : Otokratis, Demokratis, dan Laisezfaire. b. Mutu Sekolah berkenaan dengan penilaian bagaimana suatu produk memenuhi kriteria standar atau rujukan tertentu. Rumusan mutu pendidikan bersifat dinamis dan dapat ditelaah dari berbagai sudut pandang. Standar sekolah yang bermutu adalah meliputi; 1) standar isi, 2) standar proses, 3) standar kompetensi lulusan, 4) standar kompetensi pendidik dan tenaga kependidikan, 5) standar sarana dan prasarana, 6) standar pengelolaan, 7) standar pembiayaan dan, 8) standar penilaian pendidikan. c. Model Kepemimpinan Kepala Sekolah yang cocok dilaksanakan oleh kepala sekolah Di SMA Negeri I Dukuputang Kabupaten Cirebon dalam Peningkatan Mutu Sekolah adalah model Kepemimpinan demokratis dan transformasional

Factors predicting a successful post-discharge outcome for individuals aged 80 years and over

<p><strong>Introduction and background</strong>: The early post-discharge period is a vulnerable time for older patients with complex care requirements. This paper identifies factors predicting a self-reported successful post-discharge outcome for patients aged 80 and over by exploring factors related to the discharge process, the provision of formal home-care services, informal care and characteristics of the patients.</p><p><strong>Methods:</strong> The study reports results from survey interviews with patients admitted from home to 14 hospitals in Norway and later discharged home. Logistic regression analysis was performed to assess the impact of a number of factors on the likelihood that the patients would report that they managed well after discharge.</p><p><strong>Results:</strong> The odds of managing well after discharge were more than four times higher (OR=4.75, p= .022) for patients reporting that someone was present at homecoming than for those who came home to an empty house. Patients who reported receiving adequate help from the municipality had an odds four times (OR 4.18, p= .006) higher of reporting that everything went well after discharge than those who stated the help was inadequate.</p><p><strong>Conclusions:</strong> Having someone at home upon return from hospital and having adequate formal home-care services are significantly associated with patient-reported success in managing well.</p

Implementation fidelity in a complex intervention promoting psychosocial well-being following stroke: an explanatory sequential mixed methods study

publishedVersio

Nurses’ and occupational therapists’ experiences of conducting a home-based psychosocial intervention following stroke: a qualitative process evaluation

Background: Persons with stroke are susceptible to psychosocial problems, and express disappointment at how health care professionals fail to meet their psychosocial needs following discharge to home. The responsibility of nurses and occupational therapists in stroke rehabilitation is to assist the persons and their families during the recovery and adjustment process. A home-based dialogical intervention aiming to enhance psychosocial support was therefore developed and tested in a randomized controlled trial. This study is a part of the process evaluation conducted alongside the trial. The aim was to explore the nurses’ and occupational therapists’ experiences of conducting the intervention. Methods: Eighteen nurses and four occupational therapists participated in six focus groups to explore their experiences when providing the intervention. The themes discussed in the focus groups were the aspects that facilitated the delivering of the intervention and the challenges they encountered during the study period. The interviews were analysed using qualitative content analysis. Results: The analysis generated two themes. The theme Developing a supportive relationship to facilitate the adjustment process following stroke had two subthemes: Getting personally involved and Handling challenges. This theme reveals how the nurses and occupational therapists experienced their relationship with the persons with stroke and potential threats which challenged them while conducting the intervention. The theme Developing professional skills in providing psychosocial support had two subthemes: Becoming confident in conducting dialogues and Integrating psychosocial topics. This theme reveals the aspects that the nurses and occupational therapists perceived as facilitating the development of their professional skills in conducting the dialogues. Conclusion: Delivering the psychosocial intervention was perceived as deeply meaningful and increased the nurses’ and occupational therapists’ understanding of how to support stroke survivors to live with the consequences of stroke. However, balancing the professional and the personal relationship was challenging. A basic educational programme, training, supervision and having dedicated time were crucial elements to instil confidence in professionals conducting theme-based dialogues to promote post-stroke psychosocial well-being. Individual clinical experience and knowledge of stroke care were considering important to enable professionals to integrate psychosocial rehabilitation into community health care.publishedVersio

Perceived study-induced influence on the control group in a randomized controlled trial evaluating a complex intervention to promote psychosocial well-being after stroke: a process evaluation

Background A commonly applied control condition in trials evaluating complex interventions in rehabilitation research is “usual care.” The main challenge is to ensure that the control group receives genuine usual care as delivered in everyday clinical practice. The assessment interviews and dialogues with the data collectors may influence the control group participants’ reflections on their condition and adjustments. This represents a threat to the internal validity of the trial. Thus, the aim of this study was to explore the perceived study-induced influence of assessment interviews on the adjustment of the members of a control group in a randomized clinical trial. The aim of the trial was to test a dialogue-based psychosocial intervention aiming at promoting the psychosocial well-being and adjustment of stroke survivors. Methods Fifteen participants in the control group of a multicenter stroke rehabilitation trial participated in narrative semi-structured interviews. Ricoeur’s interpretation theory guided the analysis. Results The perceived study-induced influence of the assessment interviews on the adjustment process of members of the control group varied considerably. The results demonstrated that the assessment interviews facilitated some participants’ feelings of control and their ability to cope. Other participants’ statements indicate that they relied on their existing personal capacity to cope and adjust and that the assessment interviews did not make any difference either on their coping ability or on their process of adjustment. Five themes were identified that described the perceived study-induced influence of the assessment interviews in the control group. The themes illustrated that the assessments served as a safety net, enhanced awareness and understanding, encouraged seeking support, allowed the opportunity to vent disappointment, or did not make any difference either way. Conclusions RCT assessment interviews may influence the adjustment process and represent a serious problem in measuring interventions over time in trials of complex interventions in rehabilitation research. To uphold rigor and stringency, the usual care control conditions should be thoroughly assessed and described. Informing participants only about the treatment they were allocated to receive might counteract the potential to dilute the difference between the two arms of the trial

Promoting psychosocial well-being following stroke: study protocol for a randomized, controlled trial

Source at https://doi.org/10.1186/s40359-018-0223-6.Background: Stroke is a major public health threat globally. Psychosocial well-being may be affected following stroke. Depressive symptoms, anxiety, general psychological distress and social isolation are prevalent. Approximately one third report depressive symptoms and 20% report anxiety during the first months or years after the stroke. Psychosocial difficulties may impact significantly on long-term functioning and quality of life, reduce the effects of rehabilitation services and lead to higher mortality rates. The aim of the study is to evaluate the effect of a previously developed and feasibility tested dialogue-based psychosocial intervention aimed at promoting psychosocial well-being and coping following stroke among stroke survivors with and without aphasia. Methods: The study will be conducted as a multicenter, randomized, single blind controlled trial with one intervention and one control arm. It will include a total of 330 stroke survivors randomly allocated into either an intervention group (dialogue-based intervention to promote psychosocial well-being) or a control group (usual care). Participants in the intervention group will receive eight individual sessions of supported dialogues in their homes during the first six months following an acute stroke. The primary outcome measure will be psychosocial well-being measured by the General Health Questionnaire (GHQ). Secondary outcome measures will be quality of life (SAQoL), sense of coherence (SOC), and depression (Yale). Process evaluation will be conducted in a longitudinal mixed methods study by individual qualitative interviews with 15–20 participants in the intervention and control groups, focus group interviews with the intervention personnel and data collectors, and a comprehensive analysis of implementation fidelity. Discussion: The intervention described in this study protocol is based on thorough development and feasibility work, guided by the UK medical research council framework for developing and testing complex interventions. It combines classical effectiveness evaluation with a thorough process evaluation. The results from this study may inform the development of further trials aimed at promoting psychosocial well-being following stroke as well as inform the psychosocial follow up of stroke patients living at home. Trial registration: NCT02338869; registered 10/04/2014 (On-going trial).</p

Perspectives of people with Parkinson's disease and family carers about disease management in community settings: A cross-country qualitative study

Aim: To explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease. Background: Resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting. Design: A qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ. Methods: Individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings. Results: Forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management. Conclusions: An integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions. Patient or Public Contribution: The Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings. Relevance to Clinical Practice: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson’ disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journeyAlzheimer´s Society; Autonomous University of Madrid and the Ministry of Universities of the Spanish Government (Recovery, Transformation and Resilience Plan); DAM Foundation; EU Joint Programme - Neurodegenerative Disease Research; Innovation Fund Denmark; Research Council of Norwa

Indispensable intermediaries. The role of informal caregivers in the discharge process of older relatives

Frail, older individuals are especially vulnerable in the discharge process due to complex continuing care needs. Patients and informal caregivers frequently experience the discharge planning as fragmented. Informal caregivers can play an important role in securing patients’ autonomy and in supporting their older relative during the discharge process. This dissertation within the field of health services research was designed to describe the informal caregivers’ participation in the discharge process using a mixed methods design with a sequential explanatory approach. Recruitment of participants and data collection for this PhD study was carried out in two phases between October 2007 and July 2010. A cross-sectional study using structured questionnaire interviews with a consecutive sample of 254 patients and 262 informal caregivers was followed by a qualitative interview study with 19 informal caregivers. The specific aims of this dissertation were to describe the informal caregivers’ participation in the discharge planning, to describe which factors contributed to a successful post-discharge outcome, and to explore the informal caregivers’ experiences of influencing decision-making at and after hospital discharge. This doctoral dissertation highlights how the younger and older generations of informal caregivers experience the discharge process differently. The younger generation caregivers, mainly adult children, appear to be better informed and they engage in dialogue and cooperate with the personnel at the hospital to a greater degree than the older generation caregivers, mainly consisting of spouses. Only half of the informal caregivers in the study reported participation in the discharge process. The informal caregivers appear to be indispensable intermediaries without whom the patients become even more vulnerable in the discharge process