This article uses information gained from people who participated in research concerned with the experience and needs of people with life-limiting conditions. The focus is on the home care element of findings and highlights people’s need for greater control and choice regarding the management and practice of home care.
People with life-limiting conditions who rely on home care staff have strong views on how that care should be delivered, finds research described here by Phil Cotterell, Di Cowdrey, John Kapp and Mandy Paine
A life-limiting condition is conventionally considered to be one that has no cure and where normal life expectancy is unlikely. The focus has been primarily on people who have cancer that has failed to respond to treatment. But people with respiratory and neurological problems are now also seen as possibly having life-limiting conditions and therefore have similar needs to those who have cancer.(1)
Despite this changing perception there has been little research on the experiences and needs of people with life-limiting conditions. The Influencing Palliative Care study sought to address this by looking at the social factors that may influence the experiences and needs of this group of people.(2)
Twenty-five people participated in face-to-face interviews and small discussion groups. A separate group formed the Service User Research Advisory Group (Surag), which was an integral part of the research. Such involvement aimed to ensure that the experiences, needs and insights were continually kept to the fore throughout the study. The researcher and Surag members conducted thematic analysis of data collectively. Participants discussed social care as part of their experience of living with their conditions and identified concerns and ideas for improving provision.
All lived at home and most received home care so many accounts concerned these services. It is this element of the research that is focused on here. A report by the Commission for Social Care Inspection on older people’s experiences of home care concludes that people “are frequently not satisfied with the way services are currently provided”.?(3)
Evidence from our research broadly supports this claim. There was little praise for home care, but many responses were critical. Positive experiences primarily concerned individual workers who had good personal skills, including the ability to communicate and who knew the client. Wendy, who had a subarachnoid haemorrhage making it difficult for her to communicate and to use her left arm and leg, drew attention to this: “Home helpshe’s really nicecommunicatesand she helps a lotknows exactly what to get, food wise. She knows me.”
Having regular workers who learned about individuals’ needs and preferences and who were thoughtful in their practice was appreciated. Unfortunately, most accounts illustrated negative experiences of home care and of home care workers who, it was felt, failed to focus on individual needs. Nor were they respectful. And some home care workers were accused of being insensitive and patronising. This concurred with findings from a report from the Social Care Institute for Excellence.(4)
For example, Jess, 50, who lives alone and has multiple sclerosis, raised how this insensitivity and lack of awareness of a person’s feelings manifested itself. Jess spoke of home care workers who apparently did not want to be doing the job. “I think you have to really want to work with people and do the job. ‘Can you hurry up and get out of bed because I’ve got six more people to do’. Somebody said that to me once. That’s the way I’ve been treated.”
The management of home care was also a source of comment. There was a perception that those in managerial positions held fixed assumptions about people and failed to recognise them in their social context.
Clare, an unpaid carer and partner of Chris who was debilitated after a stroke, felt there was a lack of respect. “We’re just that old couple ‘Oh he’s bedridden, incontinent’, and this is how they talk about youth management of the care. They come to assess your needs as if you’re some sort of dog they’re going to put in Battersea Dogs’ Home.
“Both Clare and Chris, now in their sixties, had had professional careers but now felt vulnerable, dependent and disrespected.
Further points made by another participant, Hazel, who was in her fifties and has myalgic encephalomyelitis, concerned an inflexible home care service and the difficulty in persuading managers to understand her needs and to change how assistance was delivered.
Others reinforced this perception of disorganisation. Lily, who was in her eighties and has ovarian cancer, said: “There’s nobody supervising them they’re sent out from these agencies the agencies don’t know what they do.”
For those receiving direct payments, there were more positive accounts about home care services and workers. Clients reported a greater sense of control and involvement in decisions that affected their lives. There was more choice concerning the type and level of support, although there was still a perception that finding the right workers was problematic. The accounts provided by people with life-limiting conditions in this research raise some important points for the provision and practice of home care.
Being treated with respect and dignity by home care workers involves individual workers adapting to each person and communicating effectively.
For example, some workers apparently shouted or talked incessantly that made weak and tired clients feel worse. Being rushed while being helped with personal care was also distressing as was continually changing workers and the consequential need to explain needs repeatedly. These points are specific both to people with life-limiting conditions and all those who receive home care.
Clearly, people with life-limiting conditions in this study were frustrated by home care workers who appeared to be “just doing a job”.
Receiving personal assistance was appreciated but how this was organised and delivered was seen to be of great importance.
Experience of home care was positive when regular workers were involved and when these workers showed a genuine and respectful interest and concern for people. Home care services are required to respond to people’s unique needs, but this involves having reasonable time to deliver assistance, flexibility to adjust visits to people and having regular workers.
This research has highlighted that, despite having a life-limiting condition, people want greater control and choice over services and assistance. This corresponds with recent Department of Health guidance(5) and constitutes a challenge to providers and workers in home care.
Phil Cotterell is a research fellow in the research and development department at Worthing and Southlands Hospitals NHS Trust. He has previously worked as a nurse specialist in a hospice and his research interests include service user involvement in research and non-cancer conditions. Di Cowdrey, John Kapp and Mandy Paine are members of the Service User Research Advisory Group.
Training and learning
The author has provided questions about this article to guide discussion in teams. These can be viewed at www.communitycare.co.uk/prtl and individuals’ learning from the discussion can be registered on a free, password-protected training log held on the site. This is a service from Community Care for all GSCC-registered professionals.
(1) House of Commons health committee, Palliative Care. Fourth Report of Session 2003-04. Volume 1, The Stationery Office, 2004
(2) P Cotterell, Living with Life Limiting Conditions: A Participatory Study of People’s Experiences and Needs, unpublished PhD thesis, 2006
(3) Commission for Social Care Inspection, Time to Care? An Overview of Home Care Services for Older People in England 2006, CSCI, 2006
(4) P Beresford, M Shamash, V Forrest, M Turner, F Branfield, Developing Social Care: Service Users’ Vision for Adult Support, Social Care Institute for Excellence, 2005
(5) Department of Health, Our Health, Our Care, Our Say: A New Direction for Community Services, 2006
This article appeared in the 18 January issue under the headline “How home care can help”