Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

  • 2 November 2020
  • Author: CareSearch
  • Number of views: 0
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Bindley K, Lewis J, Travaglia J, DiGiacomo M.

Background:
Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life.

Aim:
To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage.

Design:
An interpretive descriptive study employed in-depth, qualitative interviews to explore participants' reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach.

Setting/participants:
Twenty-one workers employed within three public services in Western Sydney were recruited.

Results:
Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural.

Conclusions:
Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

Palliative care needs and utilisation of different specialist services in the last days of life for people with lung cancer

  • 2 November 2020
  • Author: CareSearch
  • Number of views: 0
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Ding J, Johnson CE, Qin X, Ho SCH, Cook A.

Objectives:
To (a) compare palliative care needs of lung cancer patients on their final admission to community-based and inpatient palliative care services; and (b) explore whether and how these care needs affect their utilisation of different palliative care services in the last days of life.

Methods:
Descriptive study involving 17,816 lung cancer patients who received the last episode of palliative care from specialist services and died between 1 January 2013 and 31 December 2018.

Results:
Both groups of patients admitted to community-based and inpatient palliative care services generally experienced relatively low levels of symptom distress, but high levels of functional impairment and dependency. "Unstable" versus "stable" palliative care phase (Odds ratio = 11.66; 95% Confidence Interval: 9.55-14.24), poorer functional outcomes and severe levels of distress from many symptoms predicted greater likelihood of use of inpatient versus community-based palliative care.

Conclusions:
Most inpatient palliative care admissions are not associated with high levels of symptom severity. To extend the period of home care and rate of home death for people with lung cancer, additional investment is required to improve their access to sufficiently skilled palliative care staff, multi-disciplinary teams and 24-hour home support in community settings.

An advance care planning educational intervention for healthcare workers in a HIV service

  • 2 November 2020
  • Author: CareSearch
  • Number of views: 0
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Williams E, Collins D, Vujovic O, Bulda H, F Hoy J. 

No abstract available

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

  • 2 November 2020
  • Author: CareSearch
  • Number of views: 0
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Gill FJ, Hashem Z, Stegmann R, Aoun SM.

Background:
Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs.

Aim:
To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs.

Design:
A scoping review.

Data sources:
MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF).

Results:
Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs.

Conclusion:
Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

Mental health and older adults: adapting acceptance and commitment therapy

A guest blog by Felicity Chapman, Mental Health Clinician and Aged Care Specialist

  • 29 October 2020
  • Author: Guest
  • Number of views: 658
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Mental health and older adults: adapting acceptance and commitment therapy

Mental health issues for older people are common and can include wide-ranging problems such as complicated grief, stress, depression, anxiety and trauma. In her second blog in this series, Felicity Chapman a Mental Health Clinician and Aged Care Specialist, explores the range of evidence-based options to treat mental health issues, focusing on the use of Acceptance and Commitment Therapy (ACT) to support older people.

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