Challenges of research with carers in a hospital setting in Australia: trialling the Carer Readiness Tool

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  • 1 Central Coast Local Health District, , Australia
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A tool to help carers gauge their readiness to provide care to a patient on discharge from acute care – the Carer Readiness Tool – was implemented on two cancer/renal inpatient units. Data on carer needs and concerns obtained from the Carer Readiness Tool revealed that relatively inexperienced carers focused their concerns on practical aspects of care, such as mobility, transfers, aids and equipment, transport and parking. More experienced carers reported fewer needs but more concerns, including respite from caring, costs of caring and end-of-life care. Challenges in engaging carers in research, which impacted the formal evaluation of the Carer Readiness Tool, are discussed.

Abstract

A tool to help carers gauge their readiness to provide care to a patient on discharge from acute care – the Carer Readiness Tool – was implemented on two cancer/renal inpatient units. Data on carer needs and concerns obtained from the Carer Readiness Tool revealed that relatively inexperienced carers focused their concerns on practical aspects of care, such as mobility, transfers, aids and equipment, transport and parking. More experienced carers reported fewer needs but more concerns, including respite from caring, costs of caring and end-of-life care. Challenges in engaging carers in research, which impacted the formal evaluation of the Carer Readiness Tool, are discussed.

Introduction

People with chronic or life-limiting health conditions may experience acute exacerbation of their illness that requires admission to hospital. Successful patient discharge from acute care to home is dependent on many factors, with one of the most important being carer readiness to provide care (Boughton and Halliday, 2009; Coleman and Roman, 2015; Rodakowski et al, 2017; Reinhard et al, 2019). Barriers to effective support for carers during discharge of the person they are providing care for include: failure to correctly identify carers (White et al, 2019); lack of communication with carers and poor discharge planning; and unrealistically high expectations of the carer’s ability to provide personal, emotional, financial and often highly technical healthcare (Reinhard et al, 2019).

We have reported on barriers to the correct identification of caring relationships (White et al, 2019) and on the development and implementation of a Carer Readiness Tool (CRT), using a co-design process with carers (White et al, 2021). The purpose of the CRT is to provide carers with an opportunity to consider and communicate their needs and concerns to the inpatient multidisciplinary team. The CRT provides carer details and information on competing demands on their role, and highlights concerns around the practical, psychological and emotional aspects of caring for the person on their return home. For the complete trial CRT used in this research, see Appendix 1.

During the development of the CRT, we assessed its face validity and perceived usefulness (White et al, 2021). This article reports an evaluation of the CRT in an inpatient setting from the carer perspective and highlights the challenges to conducting formal research with carers.

Methods

The CRT was piloted on the two wards in which it had been developed, namely, two acute cancer/renal inpatient units at a regional hospital in New South Wales, Australia (White et al, 2021). Carers of patients admitted to the pilot wards were identified, and those assessed as being suitable to take part in the study were invited to participate. Carers were excluded if they met any of the following criteria: they were providing care to patients at the end of life or about to be transferred to residential aged care; the caring relationship required complex intervention by a social worker; and the patient and/or carer was unwilling to participate. Formal consent was required from patients before their carer could be approached, and consent was sought from carers to, first, complete the CRT and, second, participate in the formal evaluation of the tool.

Two complete sets of data were collected from participants: baseline demographic data and data derived from the completed CRTs. The project team also planned to interview carers by telephone post-discharge. The project (Application ID: 2019/ETH12562) was approved under the low-risk review pathway by the Human Research Ethics Committee, Hunter New England Local Health District, New South Wales, Australia.

Results

Caring relationships were identified for 263 patients admitted to the target wards between January and March 2020. Of their carers, 109 (41 per cent) completed the CRT. Adjusting for readmissions, a total of 91 (35 per cent) completed CRTs were received and used by the multidisciplinary clinical team to inform patient care and discharge planning.

Of the 91 carers who completed CRTs, 32 (35 per cent) consented to participate in the research project. Of the consenting carers: 47 per cent were aged 65 years or over; 81 per cent were female; 69 per cent were providing care for their spouse, while a further 28 per cent were providing care for another family member; 32 per cent were in full- or part-time employment, while 38 per cent were retired; one third (31 per cent) were new to the caring role, while two thirds (69 per cent) regarded themselves as experienced carers; and just over half (56 per cent) identified that they had health problems themselves.

Prior to patient discharge, information about carer needs was also obtained from the completed CRTs. The CRT presents carers with 17 potential areas of need and asks them to choose one of the following responses for each: ‘Do not need help’, ‘Need help’ or ‘Unsure, please talk to me’. The last two responses (combined) are reported in Table 1.

Table 1:

Carer needs

Carer needs (need help or unsure)Reported by carers (n = 32)
Mobilising11 (34.4%)
Aids and equipment10 (32.0%)
Household tasks10 (31.3%)
Driving/transport9 (28.0%)
Transfers9 (28.4%)
Parking at hospital8 (25.0%)
Toileting7 (22.4%)
Washing7 (22.4%)
Behaviour strategies6 (19.3%)
Dressing5 (16.1%)
Symptom control5 (15.7%)
Coordinating care4 (12.6%)
Finances3 (9.4%)
Eating/swallowing2 (6.2%)
Medication2 (6.3%)
Grooming1 (3.1%)
Making/keeping appointments1 (3.1%)

Six areas of need were identified by at least a quarter of participants as areas in which they needed help or needed to talk to a health professional: mobilising; transfers; aids and equipment; driving or help with transport; household tasks; and parking at the hospital. Information about carer concerns regarding their caregiving role prior to patient discharge was obtained from the completed CRTs and is presented in Table 2.

Table 2:

Carer concerns

Carer concernsReported by carer (n = 32)
Dealing with paying for costs of care10 (31.0%)
End-of-life care7 (22.0%)
Respite7 (22.0%)
Looking after own health and well-being6 (19.0%)
Carer stress levels5 (16.0%)
Impact of the patient’s health condition on the carer and others5 (16.0%)
Legal issues5 (16.0%)
Dealing with own emotions4 (13.0%)
Informing family and friends4 (13.0%)
Dealing with an emergency3 (9.4%)
Making healthcare decisions for someone else3 (9.4%)
Need for the patient’s place of residence to change3 (9.4%)
Balancing work/study/volunteering and caring2 (6.3%)
Managing medications and medical care tasks1 (3.1%)
Safety of the patient at home, including wandering0

Three areas of concern were each reported by over 20 per cent of participants: costs of care; respite from caring; and end-of-life care. All areas of concern listed were reported by one or more participants, apart from safety of the patient at home.

Of the 32 participating carers, 18 (56 per cent) took part in a post-discharge telephone interview. Reasons given for not participating in the interview were: care recipient placed in residential care following discharge from hospital (n = 3); death of the care recipient in hospital or soon after discharge (n = 10); and telephone call declined (n = 1).

Interviewer notes from the post-discharge interviews revealed three main themes: a range of feelings about preparedness for discharge, from “no surprises” to “shoved out the door”; varying levels of uptake of available services post-discharge, from active engagement to feeling overwhelmed (“too many phone numbers”) or services rejected by the care recipient; and the carer’s own health, including deferment of treatment (“now is not the time”). Researchers planned to use an outcome measure (Zwicker, 2010) to explore carer perceptions of preparedness post-discharge but found that carers were more comfortable having an unstructured discussion about their experience of the CRT and patient discharge.

Discussion

Carer involvement in formal research

Patients and carers accessing acute inpatient services are often not able, willing or motivated to participate in formal research; this was our experience in this project. Over two thirds of the carers who completed the CRT declined to participate in the subsequent research. Previous studies have identified a range of factors influencing participation in research, including: heavy existing demands on carers’ time and energy; unwillingness to engage with more ‘paperwork’ (Carduff et al, 2016); carers’ own age-related and health challenges; not seeing research as a priority; and not seeing value in research (Leach et al, 2016; Chambers et al, 2019).

Navigating the patient–carer dyad

Although there is a tendency on the part of some clinicians and researchers to view patients and carers as one unit, previous research has identified that carers and patients can have different or incongruent needs and goals (Coleman and Roman, 2015). The need for the patient’s formal consent to approach carers impacted the number of CRTs completed. A small number of patients refused the project team access to the carer, either because they did not acknowledge their carer’s role or because they felt that their carer would not be interested in “doing paperwork”. In other cases, the researchers observed obvious carer discomfort in answering some of the CRT questions, for example, questions on behaviour management or end-of-life care, at the bedside or in a shared room. Conversely, some patients encouraged the team to talk with the carer about completing the CRT but the carer was reluctant to engage. The research team acknowledge that the main reason carers visit the hospital is to see the person they provide care for, not to do research, and hypothesise that carer reluctance to engage with the project may have been due to not seeing it as a priority or of value.

Format of the CRT

The CRT was developed as a hard-copy resource based on feedback from carers during a co-design process. Carers appreciated having a form they could fill in at their convenience, which prompted them to consider aspects of care they may not have thought about previously. In contrast, the use of a paper-based form was problematic for clinical staff, as most clinical record keeping in the hospital is done via electronic medical records. This tension between the preferred formats of carers and health professionals’ procedures presents an ongoing challenge.

Ticking all the boxes

Contrary to the concerns of some clinicians, carers did not tick every option available to them on the CRT, and many carers indicated that they felt confident about their readiness to provide care at home. Experienced carers tended to check more boxes in the ‘concerns’ section of the CRT, perhaps reflecting the strain of long-term caring and approaching transfer to residential aged or end-of-life care for the person they were caring for. Carers new to the role tended to check more boxes in the ‘needs’ section. This may reflect a higher level of uncertainty about physical aspects of care or that changes in the patient’s health were escalating care requirements. Responses to the 17 carer-needs options in the CRT were diverse, with 15 different types of carer concern reported. The CRT also highlighted some potential pressure points that could be addressed by the health service relatively easily, specifically driving/transport difficulties and parking at the hospital.

Applicability of the CRT

The CRT is being used in other Australian settings, and we believe that it could be adapted for use, with appropriate attribution, in international contexts. The CRT was originally developed, with permission, from the US-based Next Step in Care Project checklist for family caregivers (White et al, 2021). If the CRT is applied in other Australian or international settings, we hope that these experiences will be reported to share learning about effective ways to prepare and support carers as partners in patient discharge processes.

Limitations

Our study comprises a very small sample of carers at one regional health service, and our findings may not be applicable in other contexts. Due to the issues reported earlier, we were unable to evaluate the effectiveness of the CRT formally, despite anecdotal evidence from carers that they valued it. Our experience reflects some of the challenges faced by researchers engaging with carers who provide care to people with complex needs transitioning between acute care and home.

Funding

This work was supported by the New South Wales Department of Communities and Justice under the Carers Investment Program Grant 2018.

Acknowledgements

The authors would especially like to acknowledge the time and expertise provided by the carers and carer consultants involved in this project work; their input was invaluable.

Conflict of interest

The authors declare that there is no conflict of interest.

References

  • Boughton, M. and Halliday, L. (2009) Home alone: patient and carer uncertainty surrounding discharge with continuing clinical care needs, Contemporary Nurse: A Journal for the Australian Nursing Profession, 33(1): 3040. doi: 10.5172/conu.33.1.30

    • Search Google Scholar
    • Export Citation
  • Carduff, E., Jarvis, A., Highet, G., Finucane, A., Kendall, M., Harrison, N., Greenacre, J. and Murray, S.A. (2016) Piloting a new approach in primary care to identify, assess and support carers of people with terminal illnesses: a feasibility study, BMC Family Practice, 17(11): art 18. doi: 10.1186/s12875-016-0414-2

    • Search Google Scholar
    • Export Citation
  • Chambers, E., Gardiner, C., Thompson, J. and Seymour, J. (2019) Patient and carer involvement in palliative care research: an integrative qualitative evidence synthesis review, Palliative Medicine, 33(8): 96984. doi: 10.1177/0269216319858247

    • Search Google Scholar
    • Export Citation
  • Coleman, E.A. and Roman, S.P. (2015) Family caregivers’ experiences during transitions out of hospital, The Journal for Healthcare Quality (JHQ), 37(1): 1221. doi: 10.1097/01.JHQ.0000460117.83437.b3

    • Search Google Scholar
    • Export Citation
  • Leach, M.J., Ziaian, T., Francis, A. and Agnew, T. (2016) Recruiting dementia caregivers into clinical trials, Alzheimer Disease & Associated Disorders, 30(4): 33844.

    • Search Google Scholar
    • Export Citation
  • Reinhard, S.C., Young, H.M., Levine, C., Kelly, K., Choula, R.B. and Accius, J. (2019) Home Alone Revisited: Family Caregivers Providing Complex Care, Washington, DC: AARP.

    • Search Google Scholar
    • Export Citation
  • Rodakowski, J., Rocco, P.B., Ortiz, M., Folb, B., Schulz, R., Morton, S.C., Leathers, S.C., Hu, L. and James, A.E., III (2017) Caregiver integration during discharge planning for older adults to reduce resource use: a metaanalysis, Journal of the American Geriatric Society, 65(8): 174855. doi: 10.1111/jgs.14873

    • Search Google Scholar
    • Export Citation
  • White, S., Hart, N. and Lewis, S. (2019) Improving the identification of cancer patients’ caring relationships, International Journal of Care and Caring, 3(4): 58590. doi: 10.1332/239788219X15677825654311

    • Search Google Scholar
    • Export Citation
  • White, S., Hart, N. and Lewis, S. (2021) Engaging carers in co-design: development of the Carer Readiness Tool, International Journal of Integrated Care, 21(1): art 13. doi: 10.5334/ijic.5527

    • Search Google Scholar
    • Export Citation
  • Zwicker, D. (2010) Preparedness for caregiving scale, try this: best practices in nursing care to older adults, Hartford Institute for Geriatric Nursing, New York University. https://hign.org/sites/default/files/2020-06/Try_This_General_Assessment_28.pdf.

    • Search Google Scholar
    • Export Citation

Appendix 1

  • Boughton, M. and Halliday, L. (2009) Home alone: patient and carer uncertainty surrounding discharge with continuing clinical care needs, Contemporary Nurse: A Journal for the Australian Nursing Profession, 33(1): 3040. doi: 10.5172/conu.33.1.30

    • Search Google Scholar
    • Export Citation
  • Carduff, E., Jarvis, A., Highet, G., Finucane, A., Kendall, M., Harrison, N., Greenacre, J. and Murray, S.A. (2016) Piloting a new approach in primary care to identify, assess and support carers of people with terminal illnesses: a feasibility study, BMC Family Practice, 17(11): art 18. doi: 10.1186/s12875-016-0414-2

    • Search Google Scholar
    • Export Citation
  • Chambers, E., Gardiner, C., Thompson, J. and Seymour, J. (2019) Patient and carer involvement in palliative care research: an integrative qualitative evidence synthesis review, Palliative Medicine, 33(8): 96984. doi: 10.1177/0269216319858247

    • Search Google Scholar
    • Export Citation
  • Coleman, E.A. and Roman, S.P. (2015) Family caregivers’ experiences during transitions out of hospital, The Journal for Healthcare Quality (JHQ), 37(1): 1221. doi: 10.1097/01.JHQ.0000460117.83437.b3

    • Search Google Scholar
    • Export Citation
  • Leach, M.J., Ziaian, T., Francis, A. and Agnew, T. (2016) Recruiting dementia caregivers into clinical trials, Alzheimer Disease & Associated Disorders, 30(4): 33844.

    • Search Google Scholar
    • Export Citation
  • Reinhard, S.C., Young, H.M., Levine, C., Kelly, K., Choula, R.B. and Accius, J. (2019) Home Alone Revisited: Family Caregivers Providing Complex Care, Washington, DC: AARP.

    • Search Google Scholar
    • Export Citation
  • Rodakowski, J., Rocco, P.B., Ortiz, M., Folb, B., Schulz, R., Morton, S.C., Leathers, S.C., Hu, L. and James, A.E., III (2017) Caregiver integration during discharge planning for older adults to reduce resource use: a metaanalysis, Journal of the American Geriatric Society, 65(8): 174855. doi: 10.1111/jgs.14873

    • Search Google Scholar
    • Export Citation
  • White, S., Hart, N. and Lewis, S. (2019) Improving the identification of cancer patients’ caring relationships, International Journal of Care and Caring, 3(4): 58590. doi: 10.1332/239788219X15677825654311

    • Search Google Scholar
    • Export Citation
  • White, S., Hart, N. and Lewis, S. (2021) Engaging carers in co-design: development of the Carer Readiness Tool, International Journal of Integrated Care, 21(1): art 13. doi: 10.5334/ijic.5527

    • Search Google Scholar
    • Export Citation
  • Zwicker, D. (2010) Preparedness for caregiving scale, try this: best practices in nursing care to older adults, Hartford Institute for Geriatric Nursing, New York University. https://hign.org/sites/default/files/2020-06/Try_This_General_Assessment_28.pdf.

    • Search Google Scholar
    • Export Citation
  • 1 Central Coast Local Health District, , Australia

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