What do patients and family-caregivers value from hospice care? A systematic mixed studies review

BMC Palliative Care 2019, 18:18 (Published on: 8 February 2019)
Nicole Marie Hughes, Jane Noyes, Lindsay Eckley and Trystan Pritchard

This is the first review to explore what patients and carers value from hospice care. Findings strengthen the existing evidence base and provide new insights beyond symptom management and health outcomes.  With large disparities in the availability of services, however, the underrepresentation of patients with nonmalignant diseases and the limited evidence base demonstrating adequate support for the social needs of carers, there continues to be considerable gaps. 

Fulltext available in BMC Palliative Care 

Managing medicines for patients dying at home: a review of family caregivers' experiences

Journal of Pain and Symptom Management, September 2018
Wilson, Eleanor; Caswell, Glenys; Turner, Nicola; Pollock, Kristian

The aim of the article is to explore the literature focused on family caregivers' experiences of medications management for patients being cared for and dying at home.  The authors concluded that as increasing demands are placed on family caregivers, there remains limited acknowledgement or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, family caregivers need access to 24hrs support and medication reviews to rationalise unnecessary medications.  The ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

Fulltext available in Journal of Pain and Symptom Management

Providing comprehensive, person-centered assessment and support for family carers towards the end of life

Hospice UK, April 2018
Ewing, Gail; Grande, Gunn

A report that discusses that comprehensive person-centered support for family carers during end of life care requires whole-systems change within healthcare organisations. This document outlines the structures and processes that need to be in place to deliver such change in the form of 10 recommendations.

To download the document click here

Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries

Palliative Medicine; 2018, 32 (5), 950-959
Thomas, Carol; Turner, Mary; Payne, Sheila; et al

The aim of this qualitative cross-sectional observational study was to illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult.  Four case studies are presented where the worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries.

The nourishing role: exploratory qualitative research revealing unmet support needs in family carers of patients with advanced cancer and eating problems

Cancer Nursing; Mar 2018; vol. 41 (no. 2); p. 131-138
Hopkinson, Jane B

This study revealed that family carers needed information and support not only on how to provide nutritional care for the patients but also to manage their own nutritional risk.

Psychological impairments burden and spirituality in caregivers of terminally ill cancer patients

European Journal of Cancer Care; 2018 27(1)
Lai, C; Luciani, M; Di Mario, C; Galli, F; Morelli, E; Ginobbi, P; Aceto, P; Lombardo, L

Spirituality is mostly studied in the context of terminally ill patients but this study investigates the association between spirituality, burden, and psychological state in caregivers of terminally ill cancer patients.  The authors conclude that in these caregivers, higher levels of intrinsic spirituality predicted a higher amount of time devote to caregiving, and also protected against the emotional distress linked to providing assistance.

Does respite care address the needs of palliative care service users and carers? Their perspectives and experiences

International Journal of Palliative Nursing; Apr 2017; vol. 23 (4) p 174-185
Wolkowski, Anna; Carr, Susan M

This research revealed that although there is a need for respite care and that it's valued by service users and carers, there are some fundamental tensions in service models which limit its potential. The authors conclude that reframing respite care as an empathic response within a new palliative care approach is needed. 

Available in print in Arthur Rank Hospice Library, Cambridge

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool

Palliative and Supportive Care, 2017 15(1) 32-43

Aoun, S., Deas, K., Kristjanson, L., & Kissane, D. 

The caregivers who took part in this study identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care”. It was found that the CSNAT was judged to be relevant and useful by both caregivers and care advisers, providing a structured approach to facilitating discussions and addressing needs.

Fulltext available in Palliative and Supportive Care

Caregivers' perspectives on the use of long-term oxygen therapy for the treatment of refractory breathlessness: a qualitative study

Journal of Pain and Symptom Management, 2017, 53(1) 33-39

Collier, Aileen; Breaden, Katrina; Phillips, Jane L; Agar, Meera; Litster, Caroline; Currow, David C

The benefits of long-term oxygen therapy are often overestimated and its potential harms are underestimated.   The authors argue that caregivers should be provided with opportunities to collaborate with clinicians in evidence-based decision making and efforts should be made to provide them with information and education about the most effective pharmacological and nonpharmacological strategies to manage refractory breathlessness in a palliative care setting, including the appropriate use of LTOT, to enable them to do so.

Developing a policy to empower informal carers to administer subcutaneous medication in community palliative care; a feasibility project

International journal of palliative nursing; Aug 2016; vol. 22(8) 369-378

Lee, Louise; Howard, Kay; Wilkinson, Lyn; Kern, Cheryl; Hall, Sarah

This article describes the development and implementation of a policy to support community professionals to train informal carers to give, 'as required ', subcutaneous medications to their relative. From the small numbers audited it could be suggested that if the process is well managed and the informal carers feel supported they can safely and effectively administer subcutaneous injections in community palliative care. 

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Compromised autonomy: when families pressure patients to change their wishes

Journal of Hospice and Palliative Nursing, Aug 2016, vol. 18, no. 4, p. 284-289

Blackler, Liz

When patients are unduly pressured by their families to make medical decisions that are not in line with previously held values, beliefs, or perspectives, autonomy is compromised. Decision making in the context of family involvement and relational autonomy will be explored along with effects of caregiver stressors, patient/family disagreements, and the nuances of substituted judgment. The article also discusses strategies for best working with and advocating for patients who are experiencing compromised autonomy.

The mental health and mortality impact of death of a partner with dementia

International Journal of Geriatric Psychiatry, Aug 2016, vol. 31, no. 8, p. 929-937

Shah, Sunil M, Carey, Iain M, Harris, Tess, DeWilde, Stephen, Victor, Christina R, Cook, Derek G

The health in the year before and after loss of a partner with dementia compared with other bereavements is described.  In the year before bereavement, partners of individuals dying with dementia experience poorer mental health than those facing bereavement from other causes, and their partner is less likely to receive palliative care. In the year after, individuals whose partner died with dementia experience some attenuation of the adverse health effects of bereavement. Services need to address the needs of carers for individuals dying with dementia and improve access to palliative care. 

Respite for patients and carers in neurodegenerative disease: a grounded theory study

European Journal of Palliative Care, July/August 2016, Volume 23 Number 4, p175-9

Diane Laverty, Anne Arber and Sara Faithfull

The authors present the results of a grounded theory study that aimed to determine what residential respite care can offer to patients with neurodegenerative diseases and their carers, the issues and concerns for the carer in relation to respite and how respite can be used to provide a therapeutic outcome for patients and carers.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

A systematic review and meta-analysis of meditative interventions for informal caregivers and health professionals

BMJ Supportive and Palliative Care, 2016 6(2) 160-169 

Marisa Dharmawardene, Jane Givens, Amy Wachholtz, Suzana Makowski, Jennifer Tjia

The aim of this study was to review the evidence for meditative interventions on physical and emotional markers of well-being as well as job satisfaction and burnout among informal caregivers and health professionals.  It concludes that meditation provides a small to moderate benefit for stress reduction but that more research is needed to establish the effects on burnout and caregiver burden.

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Evaluating the effects of mindfulness-based interventions for informal palliative caregivers: a systematic literature review

Palliative Medicine, Feb 2016, vol. 30, no. 2, p. 117-131Jaffray, Linda, Bridgman, Heather, Stephens, Miranda, Skinner, Timothy

Mindfulness-based interventions may have application in the setting of palliative caregiving. The aim of this review is to describe, evaluate and synthesise the peer-reviewed literature on the effects of mindfulness-based interventions for informal palliative caregivers. Results suggest that mindfulness-based interventions are feasible and acceptable to offer to this group and may provide benefit, particularly in terms of reducing depression and caregiver burden and increasing quality of life. However, effects were not as robust as findings in the wider mindfulness intervention literature. 

Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study

BMC palliative care, Jan 2015, vol. 14, p. 22

Knighting, Katherine, O'Brien, Mary R, Roe, Brenda, Gandy, Rob, Lloyd-Williams, Mari, Nolan, Mike, Jack, Barbara A

The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff to help avoid crisis situations for the carer and avoidable hospital admissions.  The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer.

Fulltext available in BMC Palliative Care

 

Difficulties in caring for a patient with cancer at the end of life at home and complicated grief

American Journal of Hospice and Palliative Medicine, Mar 2015, vol. 32, no. 2, p. 173-177

Ando, Michiyo, Ninosaka, Yasuyoshi, Okamura, Kazuhisa, Ishi, Yoko

This study aimed to investigate difficulties in caring for a patient with cancer at the end of life at home and to examine relationships between difficulties with care and complicated grief.  The results suggest that the condition of the patient, the view of the caregiver on home care, and the absence of other support are important factors contributing to difficulties of family caregivers, and that these difficulties may lead to complicated grief.

Dying at home: a qualitative study of family carers' views of support provided by GPs community staff

British Journal of General Practice, December 2014, vol./is. 64/629(e796-803)
Seamark D, Blake S, Brearley SG, Milligan C, Thomas C, Turner M, Wang X, Payne S 

Bereaved carers in this qualitative study were interviewed to ascertain what community support made death at home possible. Family carers suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.

"It's alright to ask for help": findings from a qualitative study exploring the information and support needs of family carers at the end of life

BMC Palliative Care, 2014, vol./is. 13/(22)

Harrop E, Byrne A, Nelson A

Results from four focus groups with Clinical Nurse Specialists, healthcare assistants, former and current carers at a hospice in the UK, suggest three domains which could underpin the development of educational or information based resources for carers: developing knowledge and competence; facilitating preparedness; supporting role recognition and confidence building.

Full text available from Proquest in BMC Palliative Care

Full text available from BioMedCentral in BMC Palliative Care

Facilitating change and adaptation: the experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease

Journal of Palliative Medicine, April 2014, vol./is. 17/4(421-7)

Philip J, Gold M, Brand C, Miller B, Douglass J, Sundararajan V

This study seeks to understand the experiences and needs of family carers of people with severe COPD.  The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.