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Article ; Online: The intentional pursuit of everyday life while dying: A longitudinal qualitative study of working-aged adults living with advanced cancer.

Brose, Julie M / Willis, Eileen / Morgan, Deidre D

2023 Volume 37, Issue 8, Page(s) 1210–1221

Abstract: Background: People living with advanced cancer experience functional decline and increasing difficulty participating in activities of daily living over their final year of life, consequently reducing quality of life. Palliative rehabilitation may serve ... ...

Abstract	Background: People living with advanced cancer experience functional decline and increasing difficulty participating in activities of daily living over their final year of life, consequently reducing quality of life. Palliative rehabilitation may serve to mitigate some of these challenges by optimising function. However, limited research and theory explore the rehabilitative process of adaptation amid increasing dependency, often experienced by people living with advanced cancer. Aim: To explore the lived experience of everyday life for working-aged adults living with advanced cancer, and how this changes over time. Design: A longitudinal hermeneutic phenomenological approach was employed, using in-depth semi-structured interviews. Data was analysed using inductive thematic analysis, and findings mapped against the Model of Human Occupation and illness experience literature. Setting/participants: Purposively sampled working-aged adults (40-64 years) with advanced cancer were recruited by a rural home care team in Western Canada. Results: Thirty-three in-depth interviews were conducted over 19 months with eight adults living with advanced cancer. Advanced cancer and other losses have a disruptive impact on daily life. Despite experiencing progressive functional decline, these adults intentionally sought to participate in valued everyday activities. Adaptation to ongoing deterioration occurred through engagement in daily life. Conclusions: Despite experiencing disruption to routines and daily life, people living with advanced cancer seek to continue doing what is important to them, albeit in a modified form. Adaptation to functional decline is an active, ongoing process and occurs through continued engagement in activities. Palliative rehabilitation can facilitate participation in everyday life.
MeSH term(s)	Humans ; Adult ; Middle Aged ; Activities of Daily Living ; Quality of Life ; Home Care Services ; Longitudinal Studies ; Qualitative Research ; Neoplasms
Language	English
Publishing date	2023-06-13
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163231180911
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Article ; Online: Occupational adaptation for adults living with advanced cancer: A phenomenological longitudinal study.

Brose, Julie M / Willis, Eileen / Morgan, Deidre D

Australian occupational therapy journal

2023 Volume 71, Issue 1, Page(s) 52–63

Abstract: Introduction: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation ...

Abstract	Introduction: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation to how they engage in their occupations. Theoretical frameworks on the process of occupational adaptation often do not address the implications of progressive functional decline. Methods: A longitudinal phenomenological design was used to understand the lived experience of occupational engagement for working-aged adults living with advanced cancer. A semi-structured interview series explored participants' experience of occupational engagement and how this changed over time. Data were analysed thematically and mapped against the Model of Human Occupation (MOHO). Findings: Eight adults (40-64 years old) participated in 33 interviews over 19 months. Three themes were constructed from the data: ongoing adaptation through doing, the significance of volition in adaptation, and everyday life is contingent on my environment. Study findings demonstrate that the process of adaptation occurs through occupational engagement, is motivated by volition, and is affected by the environment. Volition and the environment play a more central role in occupational adaptation than occupational competency for the advanced cancer cohort. Conclusion: Study findings further MOHO's theoretical conceptualisation of occupational adaptation by identifying the centrality of volition and the environment in the process of adaptation. For people living with advanced cancer, disease progression results in unremitting functional decline, thus rendering competency an unstable and untenable construct. Rather, this paper argues that occupational adaptation is facilitated by volition (i.e., the motivation behind the doing) and the environment, thus fostering a sense of identity and meaning at the end of life. Occupational therapists' awareness of the significance of volition and the environment can thus foster continued occupational engagement and meaning at the end of life for people living with advanced cancer.
MeSH term(s)	Adult ; Humans ; Middle Aged ; Occupational Therapy ; Longitudinal Studies ; Occupational Therapists ; Neoplasms ; Death
Language	English
Publishing date	2023-10-08
Publishing country	Australia
Document type	Journal Article
ZDB-ID	604554-6
ISSN	1440-1630 ; 0045-0766
ISSN (online)	1440-1630
ISSN	0045-0766
DOI	10.1111/1440-1630.12908
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Article ; Online: Managing multimorbidity: a qualitative study of the Australian general practitioner experience.

Damarell, Raechel A / Morgan, Deidre D / Tieman, Jennifer J / Senior, Tim

Family practice

2023 Volume 40, Issue 2, Page(s) 360–368

Abstract: Background: Multimorbidity is prevalent in general practice and general practitioners internationally report challenges in its management. Understanding the perspectives of general practitioners at the frontline of care is important for system ... ...

Abstract	Background: Multimorbidity is prevalent in general practice and general practitioners internationally report challenges in its management. Understanding the perspectives of general practitioners at the frontline of care is important for system sustainability and accessibility as populations age. Objective: To explore Australian general practitioner perspectives on managing multimorbidity, the factors supporting their work, and those impeding their ability to meet their own standards of care provision. Method: A qualitative study conducted with Australian general practitioners using semistructured, in-depth interviews and inductive thematic data analysis. Results: Twelve interviews with general practitioners were conducted. Three main themes were constructed from the data: Multimorbidity as an encounter with complexity and contingency; Evidence constraints in multimorbidity care; and Concerns for patient safety. System structure and the Australian general practice model restrict general practitioners' ability to provide care to their level of satisfaction by linking short consultation times to practice remuneration. Attitudes toward the applicability of guideline evidence were mixed despite most general practitioners questioning its generalizability. Patient safety concerns pervaded most interviews and largely centered on system fragmentation and insufficient intersectoral communication. General practitioners rely on multiple sources of information to provide patient-centered care but chiefly the accumulated knowledge of their patients. Conclusions: Australian general practitioners share many multimorbidity concerns with international colleagues. While multimorbidity-specific evidence may be unrealistic to expect in the immediate term, system investment and adaptation is needed to support general practice sustainability and clinician ability to provide adequate multimorbidity care, suitably remunerated, into the future.
MeSH term(s)	Humans ; General Practitioners ; Multimorbidity ; Australia ; Qualitative Research ; General Practice
Language	English
Publishing date	2023-02-17
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	605939-9
ISSN	1460-2229 ; 0263-2136
ISSN (online)	1460-2229
ISSN	0263-2136
DOI	10.1093/fampra/cmac096
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Article ; Online: Allied health professionals' contribution to care at end of life in aged care settings.

Tieman, Jennifer / Morgan, Deidre / Jones, Kelly / Gordon, Sue / Chakraborty, Amal

Australian journal of primary health

2023 Volume 29, Issue 4, Page(s) 341–348

Abstract: Background: The Australian population is aging, and the proportion of older Australians will continue to grow over the coming decades. However, there is a lack of research published on the specific roles and responsibilities of allied health ... ...

Abstract	Background: The Australian population is aging, and the proportion of older Australians will continue to grow over the coming decades. However, there is a lack of research published on the specific roles and responsibilities of allied health professionals (AHPs) providing palliative care within an aged care context. Understanding the roles and needs of AHPs providing care during the last months of life in the community and aged care facilities could contribute to workforce planning, targeted information and improved care. Methods: In total, 108 eSurveys were collected between November 2019 to May 2020 from three allied health professions working in government-funded aged care; the majority of these being in residential aged care. Descriptive data are reported on the provision of care in key palliative care domains, care settings and practice activity. Results: Nearly all respondents reported they had worked with older Australians who had palliative care needs. However, over one-third of respondents reported low levels of confidence in supporting clients or residents with palliative care needs. The majority indicated they would benefit from additional education and training and support in palliative care. Conclusions: This study investigated the role of the allied health workforce in contributing to the care of older Australians at the end of life. It has also demonstrated that there are gaps in practice activity and work role that must be addressed to ensure this workforce can support older people with palliative care needs in receipt of aged care services.
MeSH term(s)	Humans ; Aged ; Australia ; Palliative Care ; Allied Health Personnel ; Aging ; Death
Language	English
Publishing date	2023-02-03
Publishing country	Australia
Document type	Journal Article
ZDB-ID	2566332-X
ISSN	1836-7399 ; 1448-7527
ISSN (online)	1836-7399
ISSN	1448-7527
DOI	10.1071/PY22178
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Article ; Online: Experience and acceptability of a carer-focussed intervention in acute oncology settings: A qualitative study of people with advanced cancer and their carers.

Marston, Celia / Morgan, Deidre D / Philip, Jennifer / Agar, Meera R

Australian occupational therapy journal

2023 Volume 70, Issue 5, Page(s) 570–580

Abstract: Objectives: Providing optimal support for carers of people with advanced cancer is critical to facilitating discharge home from hospital. Carer Support Needs Assessment Tool-Intervention (CSNAT-I) has shown promise in supporting carers' needs in this ... ...

Abstract	Objectives: Providing optimal support for carers of people with advanced cancer is critical to facilitating discharge home from hospital. Carer Support Needs Assessment Tool-Intervention (CSNAT-I) has shown promise in supporting carers' needs in this context. This study aimed to explore patient and carers experiences with and views on the acceptability of the CSNAT-I delivered by occupational therapists in an acute oncology setting. Methods: People with advanced cancer and their carers who had previously received the CSNAT-I as part of usual care while admitted to an Australian specialist cancer centre or acute hospital were invited to participate in interviews exploring their perceptions of the intervention. Data were analysed thematically. Results: Two patients and 10 carers participated in semi-structured interviews. Three themes were constructed from the data: Carers viewed the CSNAT-I as comprehensive process that (1) 'covered everything' related to discharge planning; (2) generated an 'increased awareness of needs' for themselves, patients, and clinicians; and (3) triggered an emotional response of feeling 'wrapped up in care' that was maintained as they moved from hospital to home. Conclusion: This study has demonstrated that the CSNAT-I was highly acceptable to carers as part of existing discharge processes supporting them through the transition from hospital to home and can be delivered by occupational therapists and other clinicians with a natural synergy to discharge planning. These findings will inform further development and testing of the delivery model of the CSNAT-I in future trials.
MeSH term(s)	Humans ; Caregivers/psychology ; Australia ; Occupational Therapy ; Qualitative Research ; Palliative Care/psychology ; Neoplasms
Language	English
Publishing date	2023-06-04
Publishing country	Australia
Document type	Journal Article
ZDB-ID	604554-6
ISSN	1440-1630 ; 0045-0766
ISSN (online)	1440-1630
ISSN	0045-0766
DOI	10.1111/1440-1630.12887
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Article ; Online: Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review.

Smith, Suzanne E / Chowdhury, Mostofa Kamal / Doherty, Megan / Morgan, Deidre D

Palliative medicine

2022 Volume 37, Issue 4, Page(s) 602–626

Abstract: Background: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would ... ...

Abstract	Background: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care. Aim: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation. Design: Scoping review methodology. Data sources: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990-2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist. Results: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident. Conclusion: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.
MeSH term(s)	Child ; Humans ; Bangladesh ; Disabled Children ; Palliative Care/methods ; Hospice Care ; Hospices
Language	English
Publishing date	2022-11-25
Publishing country	England
Document type	Review ; Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163221136896
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Article ; Online: Supporting Carers as Patients Move between Hospital and Home: A Systematic Review of Interventions to Support These Transitions in Care.

Marston, Celia / Morgan, Deidre D / Philip, Jennifer / Agar, Meera

Journal of palliative medicine

2022 Volume 26, Issue 2, Page(s) 270–298

Abstract: Background: ...

Abstract	Background:
MeSH term(s)	Humans ; Caregivers ; Hospitals ; Patient Transfer ; Prospective Studies
Language	English
Publishing date	2022-10-13
Publishing country	United States
Document type	Journal Article ; Review ; Systematic Review
ZDB-ID	1427361-5
ISSN	1557-7740 ; 1096-6218
ISSN (online)	1557-7740
ISSN	1096-6218
DOI	10.1089/jpm.2022.0221
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Article ; Online: Patterns of Religiosity, Death Anxiety, and Hope in a Population of Community-Dwelling Palliative Care Patients in New Zealand-What Gives Hope If Religion Can't?

Byrne, Catherine M / Morgan, Deidre D

The American journal of hospice & palliative care

2019 Volume 37, Issue 5, Page(s) 377–384

Abstract: This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is ... ...

Abstract	This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is protective against death anxiety for this population. Early studies showed religious faith helps relieve death anxiety, but later work suggests this may only be the case in societies which are generally religious. Very little research has been conducted on this topic in New Zealand, from which recent censuses indicate is an increasingly secular country. If religion is not an important source of hope for dying, it is important to explore what factors do help relieve existential anxiety and to consider their clinical relevance. This study confirmed that organized religion was not a major support factor. Yet several people who declared themselves nonreligious scored highly for intrinsic religiosity and were among the most hopeful participants. This could suggest that spirituality may be more relevant than organized religion in relieving existential distress. The main source of hope for most participants was joyful memories and meaningful relationships. Fear of being a burden and of causing family suffering were the most significant causes of distress. Systematic spiritual assessment for all patients, not just those with a declared religious faith, a biography service, and psychotherapy, may all have a role in managing death anxiety at the end of life. Further work with larger and more diverse populations would be needed to confirm these findings.
MeSH term(s)	Aged ; Aged, 80 and over ; Anxiety/psychology ; Attitude to Death ; Cross-Sectional Studies ; Female ; Hope ; Humans ; Male ; New Zealand ; Palliative Care/psychology ; Psychological Distress ; Religion ; Spirituality
Language	English
Publishing date	2019-12-09
Publishing country	United States
Document type	Journal Article
ZDB-ID	1074344-3
ISSN	1938-2715 ; 1049-9091
ISSN (online)	1938-2715
ISSN	1049-9091
DOI	10.1177/1049909119891148
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Article ; Online: Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey.

Eva, Gail / Morgan, Deidre

Palliative medicine

2018 Volume 32, Issue 5, Page(s) 960–968

Abstract: Background: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing ... ...

Abstract	Background: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. Aim: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services. Design: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). Results: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Conclusion: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.
MeSH term(s)	Adult ; Cross-Sectional Studies ; Europe ; Female ; Health Care Surveys ; Humans ; Male ; Middle Aged ; Occupational Therapy/statistics & numerical data ; Palliative Care
Language	English
Publishing date	2018-05-23
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/0269216318758928
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Article ; Online: General practitioner strategies for managing patients with multimorbidity: a systematic review and thematic synthesis of qualitative research.

Damarell, Raechel A / Morgan, Deidre D / Tieman, Jennifer J

BMC family practice

2020 Volume 21, Issue 1, Page(s) 131

Abstract: Background: General practitioners (GPs) increasingly manage patients with multimorbidity but report challenges in doing so. Patients describe poor experiences with health care systems that treat each of their health conditions separately, resulting in ... ...

Abstract	Background: General practitioners (GPs) increasingly manage patients with multimorbidity but report challenges in doing so. Patients describe poor experiences with health care systems that treat each of their health conditions separately, resulting in fragmented, uncoordinated care. For GPs to provide the patient-centred, coordinated care patients need and want, research agendas and health system structures and policies will need to adapt to address this epidemiologic transition. This systematic review seeks to understand if and how multimorbidity impacts on the work of GPs, the strategies they employ to manage challenges, and what they believe still needs addressing to ensure quality patient care. Methods: Systematic review and thematic synthesis of qualitative studies reporting GP experiences of managing patients with multimorbidity. The search included nine major databases, grey literature sources, Google and Google Scholar, a hand search of Journal of Comorbidity, and the reference lists of included studies. Results: Thirty-three studies from fourteen countries were included. Three major challenges were identified: practising without supportive evidence; working within a fragmented health care system whose policies and structures remain organised around single condition care and specialisation; and the clinical uncertainty associated with multimorbidity complexity and general practitioner perceptions of decisional risk. GPs revealed three approaches to mitigating these challenges: prioritising patient-centredness and relational continuity; relying on knowledge of patient preferences and unique circumstances to individualise care; and structuring the consultation to create a sense of time and minimise patient risk. Conclusions: GPs described an ongoing tension between applying single condition guidelines to patients with multimorbidity as security against uncertainty or penalty, and potentially causing patients harm. Above all, they chose to prioritise their long-term relationships for the numerous gains this brought such as mutual trust, deeper insight into a patient's unique circumstances, and useable knowledge of each individual's capacity for the work of illness and goals for life. GPs described a need for better multimorbidity management guidance. Perhaps more than this, they require policies and models of practice that provide remunerated time and space for nurturing trustful therapeutic partnerships.
MeSH term(s)	Evidence-Based Practice ; General Practice/methods ; General Practice/organization & administration ; General Practice/trends ; Health Transition ; Humans ; Multimorbidity/trends ; Needs Assessment ; Patient Care Management/methods ; Patient-Centered Care/organization & administration ; Patient-Centered Care/standards
Language	English
Publishing date	2020-07-01
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't ; Systematic Review
ISSN	1471-2296
ISSN (online)	1471-2296
DOI	10.1186/s12875-020-01197-8
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