21 research outputs found

    Palliative and end-of-life care research in Scotland 2006-2015: A systematic scoping review

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    Background: The Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016–2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step. The aim of the review was to quantify and map palliative care research in Scotland over the ten-year period preceding the new strategy (2006–15). Methods: A systematic scoping review was undertaken. Palliative care research involving at least one co-author from a Scottish institution was eligible for inclusion. Five databases were searched with relevant MeSH terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added. Results: In total, 1919 papers were screened, 496 underwent full text review and 308 were retained in the final set. 73% were descriptive studies and 10% were interventions or feasibility studies. The top three areas of research focus were services and settings; experiences and/or needs; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer – nearly one fifth of all papers published. Few studies focused on ehealth, health economics, out-of-hours and public health. Nearly half of all papers described unfunded research or did not acknowledge a funder (46%). Conclusions: There was a steady increase in Scottish palliative care research during the decade under review. Research output was strong compared with that reported in an earlier Scottish review (1990–2005) and a similar review of Irish palliative care research (2002–2012). A large amount of descriptive evidence exists on living and dying with chronic progressive illness in Scotland; intervention studies now need to be prioritised. Areas highlighted for future research include palliative interventions for people with non-malignant illness and multi-morbidity; physical and psychological symptom assessment and management; interventions to support carers; and bereavement support. Knowledge exchange activities are required to disseminate research findings to research users and a follow-up review to examine future research progress is recommended

    Use of an iPad App (Aid for Decision-making in Occupational Choice) for Collaborative Goal Setting in Interprofessional Rehabilitation: Qualitative Descriptive Study

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    BackgroundGoal setting is a key part of the rehabilitation process. The use of technology and electronic tools such as smartphone apps and websites has been suggested as a way of improving the engagement of users in meaningful goal setting and facilitating shared decision-making between patients and health professionals. ObjectiveThis study aims to describe experiences of health professionals and patients in the use of the English language version of the iPad app Aid for Decision-making in Occupational Choice (ADOC) to facilitate collaborative goal setting in rehabilitation. MethodsWe recruited participants from 3 acute and postacute care rehabilitation wards in both public and private organizations in New Zealand. Participants were registered allied health professionals, including physiotherapists, occupational therapists, and speech-language therapists, who engage in goal setting as part of their normal work, and their adult patients. We collected data via semistructured interviews to gather information about the experiences of the participants in the use of ADOC for goal setting. Data were analyzed with thematic analysis. ResultsA total of 8 health professionals and 8 patients participated in the study. Six main themes emerged from the data: changing patients’ perspective on what is possible, changing health professionals’ perspective on what is important, facilitating shared decision-making, lack of guides for users, logistic and organizational barriers, and app-related and technical issues. ConclusionsHealth professionals and patients found ADOC to be a valuable tool when setting shared rehabilitation goals. The use of ADOC promoted a patient-centered approach that empowered patients to engage in collaborative goal setting. The technological limitations of the app that negatively impacted experiences can be addressed in the future implementation of ADOC in rehabilitation settings

    Impact of bowel dysfunction after oncologic sigmoid resection on quality of life

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    Cultural factors influencing the uptake of pulmonary rehabilitation by Maori in New Zealand: A grounded theory investigation.

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    There is little research on experiences of rehabilitation among indigenous people in colonised countries (370 million people worldwide).1 This New Zealand (NZ) study examined the influence of cultural factors on uptake of pulmonary rehabilitation (PR) – an intervention known to improve function and quality of life in people with chronic obstructive pulmonary disease (COPD).2,

    Whakawhanaungatanga: culturally-meaningful connections as a pathway to better health for Maori with chronic obstructive pulmonary disease - a qualitative study

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    Background: Pulmonary rehabilitation is known to improve function and quality of life for people with chronic obstructive pulmonary disease (COPD). However, little research has been conducted on the influence of culture on experiences of pulmonary rehabilitation. This study examined factors influencing uptake of pulmonary rehabilitation by Māori with COPD in New Zealand. Method: Grounded theory nested within kaupapa Māori methodology. Transcripts were analyzed from interviews and focus groups with 15 Māori and ten New Zealand non-Māori invited to attend pulmonary rehabilitation for COPD. Māori participants had either attended a mainstream hospital-based program, a community-based program designed “by Māori , for Māori ”, or had experienced both. Results: Several factors influencing uptake of pulmonary rehabilitation were common to all participants regardless of ethnicity: 1) participants’ past experiences (eg, of exercise; of health care systems), 2) attitudes and expectations, 3) access issues (eg, time, transport, and conflicting responsibilities), and 4) initial program experiences. These factors were moderated by the involvement of family and peers, interactions with health professionals, the way information on programs was presented, and by new illness events. For Māori, however, several additional factors were also identified relating to cultural experiences of pulmonary rehabilitation. In particular, Māori participants placed high value on whakawhanaungatanga: the making of culturally meaningful connections with others. Culturally appropriate communication and relationship building was deemed so important by some Māori participants that when it was absent, they felt strongly discouraged to attend pulmonary rehabilitation. Only the more holistic services offered a program in which they felt culturally safe and to which they were willing to return for ongoing rehabilitation. Conclusion: Lack of attention to cultural factors in the delivery of pulmonary rehabilitation may be a barrier to its uptake by indigenous, minority ethnic groups, such as New Zealand Māori . Indigenous-led or culturally responsive health care interventions for COPD may provide a solution to this issue
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