Home Care in the Last Year of Life: Family Member Perceptions of Unmet Need Associated With Last Place of Care

Nanda, Aman; Bourbonniere, Meg; Wetle, Terri; Teno, Joan M.

doi:10.1016/j.jamda.2009.07.011

Cited by 10 publications

(10 citation statements)

References 13 publications

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“…We also had data from four major cities, all in the top ranks of the Global Power City Index: rankings are as follows: London 1, Dublin 33, New York 2 and San Francisco 18 [ 55 ], Cities are becoming the norm for many societies, and so our focus on cities makes our findings highly relevant to care for the future. We had a response similar to or better than similar mortality follow-back surveys [ 16 , 56 ]. We focussed on the last 3 months of life, when it is known that formal care costs increase especially [ 7 – 10 ].…”

Section: Discussionmentioning

confidence: 99%

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Higginson

Johnston

et al. 2020

BMC Med

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Background At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Methods Mortality follow-back postal survey. Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). Participants: Informal carers (ICrs) of decedents who had received palliative care. Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. Results We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. Conclusions Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

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Section: Discussionmentioning

confidence: 99%

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Higginson

Johnston

et al. 2020

BMC Med

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“…Ghio et al 2014; Houtjes et al 2011; Johnston et al 2011; Li et al 2012; McCausland et al 2010; Quail, Wolfson and Lippman 2011; Shooshtari, Naghipur and Zhang 2012; Stobbe et al 2015) or with palliative care needs ( e.g. Nanda et al 2010; Ventura et al 2014) represents a significant part of existing literature, nevertheless these two types of unmet need often extend beyond social care and are thus outside the remit of the present paper.…”

Section: Conceptualising Unmet Need For Social Carementioning

confidence: 99%

Unmet need for social care among older people

Vlachantoni

2017

Ageing and Society

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Understanding the nature and extent of unmet need for social care among older people is a critical policy priority in the United Kingdom and beyond, as national governments juggle the provision of adequate social care for a growing older population with competing funding priorities. Several factors can heighten the experience of unmet need among older people, for instance their family environment, and their health and socio-economic status. This paper contributes empirical evidence on the patterns of unmet need for social care among older people in England today, focusing on the individual characteristics associated with experiencing unmet need in relation to mobility tasks, activities of daily living (ADLs) and instrumental activities of daily living (IADLs). The results show that about  per cent of older individuals with an ADL difficulty had unmet need, compared to  per cent of those with an IADL difficulty and  per cent of those with a mobility difficulty. Characteristics reflecting greater vulnerability were more strongly associated with the risk of experiencing unmet need for ADLs, and such vulnerability was greater for particular ADLs (e.g. bathing), and for a higher number of ADLs. The findings reaffirm the complexity of conceptualising and empirically investigating unmet need in later life, and add to our understanding of the challenges of providing adequate and appropriate social care to older people.KEY WORDS -unmet need, social care, English Longitudinal Study of Ageing.

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“…Ten of these studies related to the meaning of homecare needs. The remaining studies focused on patient needs (83), carer needs (29), patient and caregiver needs (32), and telehealth and device use (28).…”

Section: Review Methodologymentioning

confidence: 99%

“…29,30 Unmet needs cover all areas, including activities of daily living (especially fall management), mental health, accompanying acute health problems, family caregiver burden, transportation, housing, and general practitioner lack of knowledge. 25,[29][30][31] Concerns are raised about the resultant impact, such as increased nursing home admissions (eg, patients are 1.8 more times likely to be admitted when they have unmet needs). 29 A lack of recognition of self-harm ideation and untreated depression leads to increased morbidity and mortality, increased nursing home institutionalization, and increased caregiver distress.…”

Section: Unmet Needs (15 Studies)mentioning

confidence: 99%

“…25,[29][30][31] Concerns are raised about the resultant impact, such as increased nursing home admissions (eg, patients are 1.8 more times likely to be admitted when they have unmet needs). 29 A lack of recognition of self-harm ideation and untreated depression leads to increased morbidity and mortality, increased nursing home institutionalization, and increased caregiver distress. 32,33 Critics highlight that many avoidable risks are not given high priority, eg, fall prevention, oral care, and foot care.…”

Section: Unmet Needs (15 Studies)mentioning

confidence: 99%

See 1 more Smart Citation

Homecare user needs from the perspective of the patient and carers: a review

Keeling¹

2014

SHTT

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There is a global shift towards a blending of care delivery within formal and informal environments in direct response to economic and demographic pressures. Homecare is at the hub of this activity, enabling people to age in place and keeping families intact. However, our understanding of patient and carer needs is fragmented; understandably so, given the complexity of these needs. This descriptive review offers a content analysis of papers focused on patients' and carers' needs and homecare published between January 2010 and October 2013. It is evident that homecare is an intensely researched area, yet it is disjointed. Emerging research emphasizes the need to take a holistic approach. Firstly, incorporating emotional psychosocial and cultural elements will help to draw together our current understanding within a more cohesive framework. Secondly, tensions that hinder communication and collaboration between stakeholders must be resolved. Thirdly, information and communications technology is rapidly becoming synonymous with homecare, and offers solutions for facilitating care delivery, collaboration, and training of future professionals. The rate of international activity promises much for future research collaborations to compare, contrast, and identify best practices for the future of homecare as we endeavor to meet the ever-increasing pressures on health and social care systems.

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Home Care in the Last Year of Life: Family Member Perceptions of Unmet Need Associated With Last Place of Care

Cited by 10 publications

References 13 publications

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Unmet need for social care among older people

Homecare user needs from the perspective of the patient and carers: a review

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