End-of-Life care in a community garden: Findings from a Participatory Action Research project in regional Australia

Marsh, Pauline; Gartrell, Gabrielle; Egg, Gwen; Nolan, Andrew; Cross, Merylin

doi:10.1016/j.healthplace.2017.03.006

Cited by 33 publications

(41 citation statements)

References 31 publications

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“…12,21,67,75 Even when partic-ipatory methods were used, inequalities of power and influence were reported, the experiential knowledge of patients/carers could be overshadowed by academics’ research knowledge, and the drive for research usually came from academics. 63,70,71,76 The importance of bridging different world views was highlighted. 72 Sometimes patients felt obliged to take part in involvement or were concerned about possible repercussions to their care if they expressed negative opinions.…”

Section: Resultsmentioning

confidence: 99%

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

et al. 2019

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Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. Design: Qualitative evidence synthesis using an integrative review approach and thematic analysis. Data sources: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. Results: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. Conclusion: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

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Section: Resultsmentioning

confidence: 99%

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

et al. 2019

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“…Going forward, CHC scholars can mobilize embodiment theorizing in new and creative directions. Critical embodiment sensibilities complement participatory action research, community based participatory research, and artsbased research methods particularly well because of their emphasis on material conditions and health disparities (e.g., Greiner, 2012;Marsh et al, 2017;Kennelly, 2018). Another generative site for embodiment theorizing in CHC is the digital domain, including studies of health information on the internet, online social support groups, telemedicine, and big data analyses of how consumer bodies are commodified and marketed to pharmaceutical companies (e.g., Selke, 2016;Gregory, 2018;Robitaille, 2018).…”

Section: Resultsmentioning

confidence: 99%

Embodied Methods in Critical Health Communication

Ellingson

2019

Front. Commun.

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At the center of critical questions posed about power and health communication are issues of embodiment-whose bodies are judged to be healthy and whose are not, which identities are affirmed and privileged and which are stigmatized and marginalized, which material practices are pathologized and which are lauded. Critical health communication (CHC) research may be enacted by critical-interpretive researchers who employ critical embodiment theorizing frameworks that guide their questions posed, co-construction of data, and forms of analysis and representation. CHC researchers are uniquely poised to attend to the embodied aspects of health, illness, health care delivery, and public health in order to improve the health of local and global communities.

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“…In fact, although specifically focused on a group of teenagers, our action-research study allowed the implementation of an education program about palliative care to parents and other citizens of the local community. Furthermore, our study used an action-research approach, which is considered both to be a relevant approach in palliative care research and in health education and promotion [27–29, 31–34, 53]. The inclusion of a wide range of instruments and techniques for data collection ensures the validity and reliability of our findings [40–49].…”

Section: Discussionmentioning

confidence: 99%

Towards a public health approach for palliative care: an action-research study focused on engaging a local community and educating teenagers

2018

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BackgroundEducation sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose of this study was therefore to (i) implement an education program about palliative care among teenagers and (ii) to investigate the impact of the program on the participants.MethodsAn action-research study was conducted at a local community parish in Portugal in November 2015. An education programme was purposively built about palliative care, using active educational strategies adapted for teenagers. Quantitative and qualitative techniques and instruments were used for data collection: questionnaire; reflective diaries; interviews and written testimony. The program had three stages: preparation; intervention; and evaluation. Qualitative data were analysed using thematic content analysis; quantitative data were analysed descriptively.Results69 people (47 teenagers) participated in the education program. Findings show that the education program contributed to creating awareness about palliative care. Both the teenagers and other participants assessed the education program positively. At the end of the program, teenagers had a constructive message about palliative care.ConclusionsThe education-intervention contributed to create awareness about palliative care among the participant teenagers, who ended the program with a positive message about palliative care. Based on our findings, the following policy implications can be drawn: (1) Further research is needed to evaluate the effect of education programs about palliative care among younger age groups (teenagers and children), particularly in relation to the changing of attitudes toward palliative care. (2) Education about palliative care should be promoted to local communities, involving all age groups, to foster involvement, participation and empowerment. (3) Compassionate communities should be promoted to enhance the health and wellbeing of all citizens at the end of their life.

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End-of-Life care in a community garden: Findings from a Participatory Action Research project in regional Australia

Cited by 33 publications

References 31 publications

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Embodied Methods in Critical Health Communication

Towards a public health approach for palliative care: an action-research study focused on engaging a local community and educating teenagers

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