Māori Research(er) in Three Poems

2018 ◽  
Vol 2 (1) ◽  
pp. 35
Author(s):  
Jacquie Kidd
Keyword(s):  
Palliative Care ◽  
Health Literacy ◽  
Cultural Identity ◽  
Focus Groups ◽  
Health Professionals ◽  
Bell Hooks ◽  
Face To Face ◽  
The Third ◽  
Ruth Behar ◽  
Seeking Help

These three poems re-present the findings from a research project that took place in 2013 (Kidd et al. 2018, Kidd et al. 2014). The research explored what health literacy meant for Māori patients and whānau when they accessed palliative care. Through face-to-face interviews and focus groups we engaged with 81 people including patients, whānau, bereaved loved ones, support workers and health professionals. The poems are composite, written to bring some of our themes to life. The first poem is titled Aue. This is a Māori lament that aligns to English words such as ‘oh no’, or ‘arrgh’, or ‘awww’. Each stanza of the poem re-presents some of the stories we heard throughout the research. The second poem is called Tikanga. This is a Māori concept that encompasses customs, traditions and protocols. There are tikanga rituals and processes that guide all aspects of life, death, and relationships. This poem was inspired by an elderly man who explained that he would avoid seeking help from a hospice because ‘they leave tikanga at the door at those places’. His choice was to bear his pain bravely, with pride, within his cultural identity. The third poem is called ‘People Like Me’. This is an autoethnographical reflection of what I experienced as a researcher which draws on the work of scholars such as bell hooks (1984), Laurel Richardson (1997) and Ruth Behar (1996). These and many other authors encourage researchers to use frustration and anger to inform our writing; to use our tears to fuel our need to publish our research.

Humor, Well-Being, and Health Literacy

2022 ◽  
pp. 256-272
Author(s):  
Patrícia Rodrigues ◽  
Manuela Soares Rodrigues ◽  
Diana Pinheiro ◽  
Cecília Nunes
Keyword(s):  
Oral Health ◽  
Health Literacy ◽  
Health Professional ◽  
Therapeutic Relationship ◽  
Health Professionals ◽  
Well Being ◽  
Clinical Environment ◽  
Future Health ◽  
Face To Face ◽  
Difficult Situations

Health influences general well-being, and well-being affects future health. Oral health professionals report a decreased well-being and a higher burnout. This chapter measures and evaluates the perception of the health professional and the patient about factors of stress and well-being. It evaluates the strategies used to overcome the anxiety and stress that involve the meeting. Two surveys applied by questionnaire, with face-to-face and online dissemination, the first to patients and second to dentists, were done. Of the 245 patients, 46% consider themselves to be anxious. The instruments used in a clinical environment cause discomfort, and their noise is the predominant cause for this fear. Of the 306 dentists, 80% show the ability to face difficult situations. Finally, 90% have an awareness that contributes to the well-being of others. Oral health professionals should prepare themselves with techniques to develop a therapeutic relationship that is more positive, calm, and less stressful.

scholarly journals Cultural health literacy: the experiences of Māori in palliative care

2018 ◽  
Vol 25 (4) ◽  
pp. 15-23 ◽  
Author(s):  
Jacquie Kidd ◽  
Stella Black ◽  
Rawiri Blundell ◽  
Tamati Peni
Keyword(s):  
Palliative Care ◽  
New Zealand ◽  
Health Literacy ◽  
Health Information ◽  
Health Professionals ◽  
Health Resources ◽  
Structured Interviews ◽  
Aotearoa New Zealand ◽  
Palliative Care Setting ◽  
Maori Health

Abstract: Health literacy is a concept that is frequently applied to the patient’s ability to find and comprehend health information. However, recent literature has included the skill of the health professional and the accessibility of health resources as important factors in the level of health literacy achieved by individuals and populations. In 2014 a qualitative study undertaken in Aotearoa New Zealand, investigated the context of health literacy for Māori in a palliative care setting (Māori are the indigenous people of Aotearoa New Zealand). The study included the experiences of patients, whānau (families), and health professionals. Method: Individual semi-structured interviews were held with 21 patients, whānau and six key informants: a medical specialist, a service leader involved in developing culturally specific responses to patients, two Māori service managers, and two Māori health team leaders. Focus groups were held with a total of 54 health professionals providing palliative care services. Data analysis: A thematic analysis was undertaken using a general inductive approach. The trustworthiness and reliability of the analysis was supported by sharing analysis of the transcripts among the research team. Member checking or respondent validation was used in seeking confirmation of the interim findings at five hui (meetings) with the research communities involved. Findings: This study found that the shock and grief that attends a life-limiting illness made hearing and processing health information very difficult for patients and whānau. Further, ‘hard conversations’ about moving from active treatment to palliative care were often avoided by health professionals, leaving patients and whānau distressed and confused about their choices and prognosis. Finally, poor cultural health literacy on the part of organisations has likely impacted on late access to or avoidance of palliative care for Māori.

Implementation and evaluation of clinical supervision for support workers in a paediatric palliative care setting

2021 ◽  
pp. 135910452110555
Author(s):  
Jonathan Beavis ◽  
Sian McKenzie ◽  
Lucy Davis ◽  
Nell Ellison
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Clinical Supervision ◽  
Thematic Analysis ◽  
Online Survey ◽  
Care Setting ◽  
Peer Supervision ◽  
Face To Face ◽  
Paediatric Palliative Care ◽  
Palliative Care Setting

Support workers represent a large proportion of the NHS workforce and yet their supervisory needs are often overlooked. This study focused specifically on a cohort of support workers in a community paediatric palliative care setting. Peer supervision was implemented for this group, initially face to face and then virtually. The experiences of clinical supervision for this group were investigated through responses to an online survey ( n = 25) and two focus groups ( n = 7). Survey data were analysed concurrently with a thematic analysis. The following themes and sub-themes were developed from transcribed focus groups: (1) Barriers to engagement (2) Being Listened to (3) What Worked Well: Logistics. Overall, delivery of supervision was effective to a mixed degree – though support workers appreciated a space to be listened to, their distrust of colleagues and other barriers impeded the capacity of supervision to achieve more than support and catharsis for this group. Future projects should focus on introducing more preliminary interventions to promote reflection and peer support for these groups as well as continue to consider the supervisory needs of support workers.

Behavioral Health Professionals’ Perceptions on Outcomes of Patient-Controlled Granular Information Sharing Study: Focus Groups and Survey (Preprint)

2020 ◽  
Author(s):  
Julia Ivanova ◽  
Tianyu Tang ◽  
Nassim Idouraine ◽  
Anite Murcko ◽  
Adela Grando ◽  
...  
Keyword(s):  
Focus Groups ◽  
Information Sharing ◽  
Behavioral Health ◽  
Health Professionals ◽  
Medical Information ◽  
Health Data ◽  
Health Record ◽  
Team Members ◽  
Patient Study ◽  
Actual Patient

BACKGROUND Granular information sharing studies rarely use actual patient electronic health record (EHR) information. In a previous study, behavioral health patients categorized their own EHR data into sensitive categories (e.g. mental health) and chose which care team members (e.g. pharmacists) should have access to those records. In this study, behavioral health professionals are provided access to the outcomes of a previous patient study to better understand the perspectives of health professionals on patient-controlled granular information sharing. OBJECTIVE Assess behavioral health professionals’: (1) perspectives on understanding and opinions about granular information sharing; (2) accuracy in assessing redacted medical information; (3) reactions to patient rationale for health data categorization, assignment of sensitivity, and sharing choices; and (4) recommendations on how to improve the process of granular health information sharing. METHODS Four two-hour focus groups and a pre- and post-survey were conducted at two integrated health facilities. During the focus groups, outcomes from a previous study on patients’ medical record sharing choices were shared. Thematic analysis and descriptive statistical analyses were conducted. RESULTS Twenty-eight professionals were initially unaware of or provided incorrect definitions of granular information sharing (56.0%). After having access to outcomes from a previous patient study, professionals increased their mixed perspectives (21.4% to 37.1%) on granular information sharing. A majority (81.3%) identified that key medical data had been redacted from the study case. Many (66.1%) stated they did not understand patient rationale for categorization or medical sharing preferences. Finally, participants recommended that a variety of educational approaches be incorporated to inform patients about granular information and health record sharing processes. CONCLUSIONS This study provides detailed insights from behavioral health professionals on patient-controlled granular information sharing. Health professionals accurately identified information gaps resulting from patient-directed data redaction, improved in their overall concept comprehension, underscored the fine line between patient safety and patient rights, and expressed a commitment to help patients appreciate the risks and benefits associated with granular information sharing. Outcomes will inform the development, deployment and evaluation of an electronic consent tool for granular health data sharing.

scholarly journals What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Psychological Needs ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Complex Needs ◽  
Sequential Explanatory ◽  
Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

scholarly journals Barriers and facilitators to e-learning in palliative care

2020 ◽  
Vol 26 (8) ◽  
pp. 394-402
Author(s):  
Joanne Callinan
Keyword(s):  
Palliative Care ◽  
Administrative Support ◽  
Healthcare Professionals ◽  
Computer Training ◽  
Barriers And Facilitators ◽  
Cross Sectional ◽  
Face To Face ◽  
Course Work ◽  
E Learning ◽  
Prior Experiences

Background: E-learning provides opportunities for flexible learning to those who cannot access palliative education in the traditional classroom setting, but it also presents learners with challenges. The study aims to identify the barriers and facilitators to accessing e-learning courses in palliative care. Methods: Cross-sectional surveys were developed, piloted and disseminated to healthcare professionals (HCPs) working in palliative care on the island of Ireland (Republic of Ireland and Northern Ireland). Results: Important factors that motivated HCPs to participate in e-learning are: dedicated time; quick technical and administrative support; computer training before completing an e-learning course; and regular contact with the tutor in online course work. Some 50% indicated face-to-face assistance and hands-on training sessions as the type of support that they would like to receive. Conclusions: Healthcare professionals' prior experiences and attitudes towards e-learning will guide educators developing programmes. This study indicates the prerequisite for organisational supports and practical considerations to facilitate the uptake of e-learning.

scholarly journals 3 The use of online videoconferencing for focus groups in palliative care research

2021 ◽  
Author(s):  
Rebecca Gemmell ◽  
Alison Allam ◽  
Margaret Perkins ◽  
Joanne Droney
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Care Research

scholarly journals A qualitative exploration of patients’ experiences, needs and expectations regarding online access to their primary care record

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044221
Author(s):  
Brian McMillan ◽  
Gail Davidge ◽  
Lindsey Brown ◽  
Moira Lyons ◽  
Helen Atherton ◽  
...  
Keyword(s):  
Primary Care ◽  
Focus Groups ◽  
Negative Consequences ◽  
Face To Face ◽  
Primary Care Record ◽  
Online Access ◽  
Additional Support ◽  
The Uk ◽  
Records Access ◽  
Qualitative Exploration

ObjectivesPrimary care records have traditionally served the needs and demands of clinicians rather than those of the patient. In England, general practices must promote and offer registered patients online access to their primary care record, and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients’ needs and expectations regarding online access to their record. This study explored what patients and carers want from online access to their electronic primary care health record, their experiences of using it, how they would like to interact with their record and what support they may need.DesignFocus groups and semistructured interviews using purposive sampling to achieve a good sociodemographic spread. Interviews were digitally audiorecorded, transcribed and coded using an established thematic approach.SettingFocus groups and interviews were conducted in community settings in the UK.ParticipantsFifty-four individuals who were either eligible for the National Health Service Health Check, living with more than one long-term condition or caring for someone else.ResultsParticipants views regarding online access were categorised into four main themes: awareness, capabilities, consequences and inevitability. Participants felt online access should be better promoted, and suggested a number of additional functions, such as better integration with other parts of the healthcare system. It was felt that online access could improve quality of care (eg, through increased transparency) but also have potential negative consequences (eg, by replacing face to face contact). A move towards more online records access was considered inevitable, but participants noted a need for additional support and training in using the online record, especially to ensure that health inequalities are not exacerbated.ConclusionsDiscussions with patients and carers about their views of accessing online records have provided useful insights into future directions and potential improvements for this service.

How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals

2021 ◽  
pp. 026921632110265
Author(s):  
Hannah Seipp ◽  
Jörg Haasenritter ◽  
Michaela Hach ◽  
Dorothée Becker ◽  
Lisa-R Ulrich ◽  
...  
Keyword(s):  
Home Care ◽  
Focus Groups ◽  
Health Professionals ◽  
Care Delivery ◽  
Death And Dying ◽  
Theory Approach ◽  
Palliative Home Care ◽  
Palliative Care Teams ◽  
Key Issues

Background: Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders. Aim: To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care. Design: We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach. Setting/participants: All specialised palliative home-care teams ( n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations ( n = 5), and interviewed patients ( n = 14), relatives ( n = 14) and health professionals working in or collaborating with specialised palliative home-care ( n = 30). We also conducted focus groups ( n = 4) with health professionals including a member check. Results: Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination. Conclusions: Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care. Trial registration: German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de .

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