scholarly journals Sustaining Community Archives

2021 ◽  
Author(s):  
◽  
Joanna M A Newman

<p>All over New Zealand there are collections of archives, representing the recorded memory of their communities. They play an important role in our heritage and cultural well-being but the quality of care they receive and their accessibility vary greatly, giving rise to concerns about the longevity of some. This research investigates the factors required for maintenance of community archives over the long-term and assesses how well a selection of New Zealand Archives display these factors. A methodological framework for assessing likely sustainability of Community Archives was developed, based on requirements for managing community (or local history) archives documented by United States archivists. Four different Community Archives in New Zealand were then studied and the findings compared. Results show that many of the factors required for maintenance are inter-related and inter-dependent but that, above all, organisational factors have a significant impact on the maintenance of the archival records and the evidential value they contain. Different organisational structures and governance characteristics, and their consequent impact on other factors, indicate that, by addressing these aspects of Community Archives, their sustainability could be greatly enhanced. The study could, therefore, provide guidance for archivists and policy makers in future decision-making relating to Community Archives.</p>

2021 ◽  
Author(s):  
◽  
Joanna M A Newman

<p>All over New Zealand there are collections of archives, representing the recorded memory of their communities. They play an important role in our heritage and cultural well-being but the quality of care they receive and their accessibility vary greatly, giving rise to concerns about the longevity of some. This research investigates the factors required for maintenance of community archives over the long-term and assesses how well a selection of New Zealand Archives display these factors. A methodological framework for assessing likely sustainability of Community Archives was developed, based on requirements for managing community (or local history) archives documented by United States archivists. Four different Community Archives in New Zealand were then studied and the findings compared. Results show that many of the factors required for maintenance are inter-related and inter-dependent but that, above all, organisational factors have a significant impact on the maintenance of the archival records and the evidential value they contain. Different organisational structures and governance characteristics, and their consequent impact on other factors, indicate that, by addressing these aspects of Community Archives, their sustainability could be greatly enhanced. The study could, therefore, provide guidance for archivists and policy makers in future decision-making relating to Community Archives.</p>


2020 ◽  
Author(s):  
Hiran Thabrew ◽  
Karolina Stasiak ◽  
Harshali Kumar ◽  
Tarique Naseem ◽  
Christopher Frampton ◽  
...  

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S161-S161
Author(s):  
Rebecca L Mauldin ◽  
Kathy Lee ◽  
Antwan Williams

Abstract Older adults from racial and ethnic minority groups face health inequities in long-term care facilities such as nursing homes and assisted living facilities just as they do in the United States as a whole. In spite of federal policy to support minority health and ensure the well-being of long-term care facility residents, disparities persist in residents’ quality of care and quality of life. This poster presents current federal policy in the United States to reduce racial and ethnic health disparities and to support long-term care facility residents’ health and well-being. It includes legislation enacted by the Patient Protection and Affordable Care Act of 2010 (ACA), regulations of the U.S. Department of Health and Human Services (DHHS) for health care facilities receiving Medicare or Medicare funds, and policies of the Long-term Care Ombudsman Program. Recommendations to address threats to or gaps in these policies include monitoring congressional efforts to revise portions of the ACA, revising DHHS requirements for long-term care facilities staff training and oversight, and amending requirements for the Long-term Care Ombudsman Program to mandate collection, analysis, and reporting of resident complaint data by race and ethnicity.


2004 ◽  
Vol 13 (1) ◽  
pp. 49-56 ◽  
Author(s):  
Sigrid Pemberger ◽  
Reinhold Jagsch ◽  
Eva Frey ◽  
Rosemarie Felder-Puig ◽  
Helmut Gadner ◽  
...  

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.


2021 ◽  
Author(s):  
◽  
Sera Tapu-Ta'ala

<p>Background Pacific people are dying younger compared to other New Zealanders because of complications resulting from uncontrolled type 2 diabetes mellitus. Good diabetes control is achievable with early use of insulin because of its effectiveness, and proven long term benefits to quality of life. An understanding of how Samoan people with type 2 diabetes make their transition to insulin therapy will assist in understanding how insulin is perceived, which will inform health care professionals in their work with those diagnosed with diabetes. Aim of Research The aim of the research is to explore and describe how Samoan people with type 2 diabetes in New Zealand made the transition to insulin therapy for better glycaemic control. Design The Fonofale Model was used as the theoretical framework, from which to understand Samoan peoples' experiences. This research used a qualitative descriptive methodology. In-depth interviews were used to gather the stories of four Samoan participants over the age of 18 years diagnosed with type 2 diabetes. The data was analysed using thematic analysis. Findings Three major themes emerged from the analysis of the participants' stories. These were: living with diabetes, making the transition to insulin therapy and realisation. The findings led to the creation of the Ia Malu model, which describes the experiences of the participants in this study. Conclusion This study confirmed that there are immense challenges and struggles encountered by people with diabetes. Their adjustment to the illness as well as making the transition to using insulin takes time. As a result of this, it is fundamental for nurses/health care professionals to understand that this is the reality for these people, and they must therefore provide time for people to adjust.</p>


2021 ◽  
Vol 9 (1) ◽  
pp. 39
Author(s):  
Evgenia Stasinopoulou ◽  
Margarita Giannakopoulou ◽  
Georgios Fildisis ◽  
Maria Kalafati ◽  
Chryssoula Leomonidou

Background: Investigating quality of life (QoL) is of crucial importance for the scientific community as it could function not only as an indicator of prognosis and post-traumatic clinical and psychological changes in patients who have suffered from acute brain injury (ABI), but also as an indicator of the effectiveness of their treatment and social rehabilitation. In addition, it can highlight changes in the carer’s health, social life and well-being. This study examined the QoL of patients following ABI and the needs of their carers.Material and methodology: This study was conducted in patients suffering from ABI, who were admitted to the General Hospital of Attica “KAT” and to the National Rehabilitation Center and on their carers. Data collection including demographics and Quality of Life After Brain Injury Questionnaire (QOLIBRI) and the Family Needs Questionnaire (FNQ) was performed during patients’ rehabilitation, while six months after release, a follow-up survey was conducted using the same questionnaires. Statistical analysis of data was performed using SPSS.Results: We analysed 50 patients with mild ABI (GCS ≥ of 13/15) during rehabilitation and six months after release and found that their QoL improves and is positively related to improvement of health status (i.e. in terms of thinking ability, QoL improves from r = 2.33, p < .01 to r = 3.37, p < .001). We also found that “Age” has the greatest impact on the patient’s progress for recovery and the general QoL after ABI (r = -0.423, p < .01). In addition, it was found that carers of patients with ABI are confronted with the burden of care, while they record both fulfilled and unmet needs regarding their individual needs (i.e. only for 30% of the sample the need for help in preparing them for the worst is met).Conclusions: Our study confirms previous findings that underline that ABI has a major impact on QoL of both patients and their carers providing them with long-term daily care. Although it has been found that over time there is an improvement in the QoL of patients with ABI, the absence of an official support network for carers from public health system, hospitals and rehabilitation centers may adversely affect the QoL of patients and their carers. Therefore, more structured, long-term family-wide monitoring and support is needed, focusing on identifying those at risk of social isolation and incomplete social networking.


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