Background
Carer strain and burden
Methods
Phase | Aim | Design & data type | Participants |
---|---|---|---|
Phase 1a
| To capture carers’ experiences, identify factors causing stresses/burdens during the caring experience and views on the use of a carer’s alert tool | Prospective semi-structured interview study with carers (qualitative data) | 18 carers (14 current carers and 4 carers who were bereaved during the study) |
Months 1-16 | |||
Phase 1b
| Same as Phase 1a | Focus group study with carers (qualitative data) | 5 focus groups at carer centres and a hospice involving 25 carers (19 current carers and 6 bereaved carers) |
Months 1-16 | |||
Phase 2
| To gain consensus on the most important factors to be included from Phase 1 for inclusion in the CAT | A two round Delphi survey (quantitative and qualitative data) | 151 surveys were completed across the two rounds by 126 participants. |
Months 17-18 | Round 1: 44 items across 8 topic domains | Round 1 = 43 professionals, 42 carers | |
Round 2: 29 items across 8 topic domains | Round 2 = 44 professional, 22 carers | ||
Professionals were from charities, carer’s centres, university, hospices, NHS Trusts (Primary Care, Community Care, Hospitals), local authority and personal social services (n = 81) | |||
Carers were current and bereaved carers (n = 45) | |||
Phase 3
| To seek expert panel review of the top ranked factors of carer burden from Phase 2, and consensus selection of the final list of 10 items for the pilot CAT | Consultation and consensus selection (quantitative and qualitative data) | 6 professionals from national and regional organisations with a strategic role in End of Life care and carer support and 4 carers who participated in Phase 1 and 2 of the study. |
Month 19 | |||
Phase 4
| To pilot the readability and usability of the initial CAT | Pilot study of the initial CAT (quantitative and qualitative data) | 8 professionals across 4 clinical sites: |
Month 20–24 (Official end of study) | • 4 District Nurses across two Community NHS Trusts | ||
• A Clinical Services Manager at an adult hospice, | |||
• Two Clinical Nurse Specialists and a Social Worker at a tertiary cancer centre. | |||
7 current carers across the sites | |||
Phase 5
| To review the findings of the pilot and consult with potential user groups on any revisions to be made to the CAT tool | Consultation review meetings with potential users (quantitative and qualitative data) | • 18 carers at a carers centre |
Months 30-35 | • Consultation meetings with lead professionals at the pilot clinical sites and with professionals attending a national consultation day organised by a national nursing organisation. Professionals included Palliative Care Consultants, District Nurses and Team Managers, Community Matrons, NHS Commissioners, Nurse Educator, Chief Executive of a national nursing organisation, and Managers of voluntary organisations supporting carers (n = 33). |
Results
Phase 1: item generation
Recruitment
Procedure
1. Demographic information
| a) Age |
b) Employment status – current, previous, reasons for stopping work, how long ago stopped work | |
c) Relationship with person currently caring for | |
d) Any previous caring roles | |
2. Perception of carers
| a) Would you describe yourself as a carer? |
b) If not, how do you see your role as being different to that of a carer? | |
3. Current caring role
| a) How long have you looked after ………….? |
b) Can you describe some of the things that you do for…? (physical, social, psychological) | |
c) Looking back at the time you have been caring for …., have you seen a change in how you care for ….? | |
(Changes, increases in care required) | |
d) Have there been any occasions when you have found caring to be challenging? (examples & context) | |
e) Looking back on the …. months that you have been caring for …., what were the most challenging things youhave had to deal with, and why? | |
f) Is it difficult to say that there have been problems or challenges? Or to ask for help? | |
g) What helps you to cope with the challenges? (what helps most, least) | |
h) Is there anything positive that has come out of your caring role with ….? | |
4. Support and assessments
| a) What support or help have you received whilst caring for …? |
b) Is there any help or support you feel you might have benefited from but did not receive? | |
c) Have you had any assessments since you started caring for ….? | |
d) Did those assessments result in any additional support? | |
e) Do you think regular assessment of carers needs would be helpful? | |
f) Are there any areas in particular that you feel should be assessed? | |
g) How would you feel being asked about your needs on a regular basis by someone who comes into your homeregularly, such as a district nurse? (Any other professional you would prefer?) | |
5. Open ended question
| Is there anything else you’d like to add to what you’ve said today? |
Analysis
Phase 2: item selection
Delphi development
Domain | Qualitative data summary | Survey item example | Number of items |
---|---|---|---|
“How important is it to assess…..” | |||
1. Understanding the current caring context
| Carers spoke about the importance of understanding their ‘lived situation’ such as who they were caring for, other demands on their time, and their understanding of the diagnosis and prognosis of the person they were caring for | …if the carer understands the expected progress of the condition of the person they are caring for? | 10 |
2. Current care provided by the carer
| Carers were providing many different levels of care including physical, emotional and practical care | …if the carer feels able to support the emotional needs of the person they care for? | 4 |
3. Carer’s relationship with professionals
| Carers spoke about their relationships with multiple professionals who were providing care or treatment to the person they cared for, whether they felt excluded or included in discussions about the care of the person they cared for and about their relationships with professionals supporting their own health and social care. | … if the carer feels that professionals involve them in decision making by seeking their knowledge and expertise about the care needed by the person they care for? | 4 |
4. Respite and emergency care support
| Carers spoke about the need for a break or respite care and their concerns about what would happen to the person they care for in an emergency or if they were unable to provide care | … if the carer has planned what should happen in an emergency if they were unable to provide care, e.g. if they become ill or go into hospital? | 3 |
5. Financial support and assessments
| Carers spoke of the stress caused by financial issues and the lack of systematic assessment or support for carers generally | …if the carer knows of and has applied for all appropriate funding, such as benefits, mobility schemes? | 7 |
6. Carer’s own health and well-being
| Carers tended to put their own needs after those of the person they care for but many carers had their own health concerns and some spoke of the importance of needing time for themselves. | … if the carer is able to balance their own health needs with the demands of caring? | 6 |
7. Support for the carer
| Carers spoke of ‘not knowing what support was available’ until they met a ‘gateway’ person who provided information or access to services. | … if the carer has received information about the carer support available in their area? | 6 |
8. End of Life (EoL) Care and planning
| Carers spoke of needing to focus on the current caring situation rather than EoL planning but recognised the importance of knowing the person’s wishes | … if the carer knows the wishes and preferences of the person they care for, and they have been written down and shared, e.g. advance care planning (ACP) document? | 4 |
Round 1
Round 2
Domain | Round 1 ranking | Round 2 ranking |
---|---|---|
Domain 1 Understanding the current caring situation |
1st
|
1st
|
Domain 2 Current care provided by the carer | 4th | 4th |
Domain 3 Carer’s relationship with professionals | 5th | 5th |
Domain 4 Respite and emergency care needs | 6th | 6th |
Domain 5 Financial support and assessments | 7th | 7th |
Domain 6 The carer’s health and well-being |
2nd
|
2nd
|
Domain 7 Support for the carer | 3rd | 3rd |
Domain 8 End of life care and planning |
8th
|
8th
|
Phase 3: expert panel consultation
“I feel that this is a comprehensive list of the issues that are important to carers” (Professional, P3 panel).“I found this quite hard to choose a top ten because if an important element of the support is missing it has a domino effect on the quality of support the carer can give the patient. Most carers will put their needs bottom of the list and some will not seek carer support in their area.” (Carer, P3 panel)
Domain theme | Item | Ranking | Mean ranking* (SD) |
---|---|---|---|
D1: Understanding the current caring situation | …if the carer understands the expected progress of the condition of the person they are caring for? | 1 | 2.88 (2.64) |
D2: Current care provided by the carer | … if the carer feels able to support the psychological/emotional needs of the person they care for? | 2 | 3.25 (3.86) |
D3: Carer’s relationship with professionals | … if the carer feels that professionals involve them in decision making by seeking their knowledge and expertise about the care needed by the person they care for? | 3 | 3.88 (1.55) |
D4: Respite and emergency care needs | … if the carer would like support with a break from caring such as using a sitting service in their home for a few hours or to use respite care for a longer break? (if services available) | 4 | 4.00 (2.12) |
D3: Carer’s relationship with professionals | … if the carer feels they are receiving the support they need from professionals at the time they need it? | 5 | 4.13 (2.17) |
D2: Current care provided by the carer | … if the carer has a named person or number to call in an emergency or with any concerns about the person they care for? | 6 | 4.50 (2.98) |
D1: Understanding the current caring situation | … if the carer has responsibility for making decisions about the care of the person they care for, due to their condition or mental capacity? | 7 | 5.20 (3.27) |
D5: Financial support and assessments | … if the carer knows of and has applied for all appropriate funding, such as benefits, mobility schemes? | 8 | 5.86 (1.86) |
D7: Support for the carer | … if the carer feels they are currently receiving enough support? | 9 | 6.00 (3.35) |
D6: The carer’s health and well-being | … if the carer is able to balance their own health needs with the demands of caring? | 10 | 6.11 (3.41) |
Phase 4 & 5: CAT pilot and consultations
Rigour
Results of the pilot and consultations
Recommendations on implementing the CAT
Summary of the CAT
Discuss the following areas with the carer to identify any alerts requiring action. | |
---|---|
[x] = person being cared for e.g. husband or wife. | |
(A) CURRENT CARING SITUATION
| |
Q1
| Do you have any needs or concerns about caring for your [x]? |
Q2
| Do you need any information about the condition your [x] has and how the care needed might change over time? |
Q3
| Do you need any help to provide any of the physical or general daily care your [x] requires? |
Q4
| Do you need any help to provide any emotional or spiritual care your [x] requires? |
Q5
| Do you have a named person to call in an emergency or out-of-hours to discuss any concerns about your [x]? |
(B) CARER’S HEALTH AND WELL-BEING
| |
Q6
| Do you feel involved in discussions and listened to by professionals about the care needed by [x]? |
Q7
| Do you need any help or information about money or legal issues? |
Q8
| Do you need a break from caring during the day or overnight? |
Q9
| Do you need any help to balance your own needs with the demands of caring? (e.g. attend own health appointments, social activities) |
Q10
| If appropriate include: Do you know your [x]’s wishes and preferences for EoL care? (If known, have they been written down and shared, e.g. advance care planning (ACP) doc?) |