A Call to Action
Over the last 30 years, the US health care system has experienced significant changes, resulting in shorter hospital stays, fewer and shorter visits with providers in the outpatient setting, and reductions in the community resources available to patients and families. Family caregivers are being called upon to provide increasingly complex care to fill in the gaps and serve as members of the health team, often with little or no training. The medical literature increasingly describes the burden, distress, and the physical and mental health risks involved in caregiving for a patient with brain tumour.1-3 In particular, the literature confirms that the neuro-oncology caregiver is particularly vulnerable for burden and distress.4 This is due to the nature of the illness, which is both a catastrophic life threatening illness and one that has the potential to cause rapid changes in the neurologic, neuro-psychiatric, and physical condition of the patient. It was a caregiver, Jack, who met with the UCSF Neuro-oncology team and informed us that although we did a wonderful job of taking care of his wife, we did not do such a great job of taking care of him. We needed to do better! This prompted a commitment from the UCSF Neurosurgery-Neuro-Oncology leadership to improve the care that we were providing to the neuro-oncology caregiver as part of the care provided to the neuro-oncology patient.
An idea turns into a reality
In 2012 the friends and family of Gordon Murray, a former glioblastoma patient, presented UCSF with a gift that allowed for the launch of the UCSF Neuro-Oncology Gordon Murray Caregiver Programme (GMCP). This multi-dimensional programme was designed to provide an additional layer of service, as part of the care provided to the neuro-oncology patient, to specifically address and attend to the needs of the caregiver across the disease trajectory. The mission was to provide care that includes the caregiver in order to optimise the quality of life of both the patient and the caregiver. Dedicated caregiver staff were hired to provide caregivers with education, information on disease and caregiver specific resources, health navigation, emotional support and information on and referrals to peer support and professional counselling. This was to be achieved through pro-active outreach, one on one counselling, and a variety of additional caregiver specific supportive services.
Paula Sherwood’s stress response model for family caregivers of patients with a primary brain tumor5 describes the appraisals that caregivers make of the patient, the patient’s condition and the treatment needs, as well as appraisals of the internal and external resources available to them to meet the demands of the patient’s health status and care needs. External caregiver resources include tangible means of support such as educational resources, i.e., disease specific and caregiving specific information, personnel resources, both volunteer and hired help, financial resources, and social support. Internal resources are the physical and emotional characteristics inherent to each caregiver, i.e. their physical and emotional health, and traits of self-efficacy, mastery, preparedness, and optimism. The caregivers’ appraisal of the resources available to meet the demands of providing care mediates the stress response that they experience.
Additionally a common phenomenon experienced by neuro-oncology caregivers is one of isolation.4-6 Caregivers become physically isolated from friends and family as a direct result of the demands of care and the illness make it harder for them to stay in their pre-illness roles and activities. Caregivers of neuro-oncology patients also describe a sense of others “not getting it”, because despite the patient looking well, the caregiver is experiencing profound loss on many levels, including ambiguous loss and high levels of anticipatory grief. They report that they feel very alone.
In recognition of the challenges faced by caregivers, the GMCP strives to strengthen and/or supplement the resources available to the caregiver in order to decrease the caregivers’ experience of distress and isolation. This is accomplished through directly interacting with the caregiver to assess their specific needs, providing information and emotional support, identifying and strengthening of existing resources as well as introducing new resources and developing new neuro-oncology caregiver specific programming that offers a variety of opportunities for caregivers to make connections with similar others. These are described in more detail in the following sections.
A multi-disciplinary and multi-pronged approach requires dedicated programme staff which include neuro-oncologists, an experienced neuro-oncology nurse, a neuro-oncology social worker, and a programme analyst to support the efforts of the team. The team offers a variety of services with knowledge that caregivers have a high need for information early in the illness, with more emotional and practical support required as the illness progresses. This type of caregiver intervention, that includes various combinations of educational interventions, support, psychotherapy, and respite are referred to as “multi-component interventions”.7 Caregiver support is introduced and offered at diagnosis and continues to be offered at times of transition in the illness, such as at the time of emergence of new symptoms, disease progression, transfer from the hospital or rehabilitation to home, and or transition to hospice care. Support also continues through the bereavement process.
Direct one on one caregiver outreach is a key element of the support offered to caregivers. Programme staff reach out to caregivers at various times along the disease trajectory, to introduce the programme, to invite them to supportive programming, and to respond to queries or referrals to address specific needs. The hope is that by providing repeated invitations and interactions the programme team will facilitate the development of a therapeutic relationship that will allow and encourage the caregiver to reach out to the team if and when needs arise. The one on one approach also allows for a tailored intervention response to the individual caregiver (Table 1).
Table 1: Tailored outreach to caregivers
Types of caregiver outreach offered
New to Clinic
At time of first clinic visit
In person meeting with social worker or GMCP staff in the Caregiver Room. The room was designed to be different from a traditional clinic room, with soft lighting, soothing colours, and comfortable furniture. If not seen in clinic they are offered telephone follow up.
New patient and new caregiver program information includes, 1:1 assessment of needs, and “a new-patient packet” with the following information
2 weeks, and 4 weeks post first visit, and after post radiation (XRT) MRI
Email and telephone outreach
Electronic assessment tool is emailed to caregivers prior to first and third calls to assess for emerging needs.
Transition or high risk caregivers are those caring for patients with new symptoms, change in disease status, or other new needs needing attention as evaluated by health team member
Any time after establishing patient care in the clinic
Referral made by any member of health care team. Care needs triaged with caregiver programme team and telephone follow up provided by CG Programme team
1:1 assessment by telephone or in person of caregiver needs and resources available.
At time of hospice referral
GMCP RN offers telephone outreach to caregiver and local hospice agency
Hospice counseling and/or outreach is offered to educate family members about hospice services as well as what to expect as the patient enters the final phase of illness. Includes telephone outreach to the agency/team providing hospice services to introduce the patient and family, review any specific concerns or nuances of care, and provide educational materials specific to end of life care for neuro-oncology patients written for health care providers.
1 month and 6 months post death
CG team coordinates sending of sympathy card from entire health care team. GMCG RN places outreach phone call at 6 months post death
Sympathy and support via card at time of death. Telephone outreach offered at approximately 6 months. GMCP RN provides caregiver assessment for grief needs and facilitates connection to additional support if necessary.
Curating current resources and developing new resources and programming for the neuro-oncology caregiver is another important aspect of the programme. As the programme was launched, staff initiated a search to assess and curate the community caregiver support resources that were currently available as well as identify gaps in services. Ideas for new programming grew out of identified gaps and areas that would complement the services currently available.
Part of the assessment of the landscape involved developing partnerships with multi-disciplinary members of other neurologic and medical specialties known to have high caregiver burden and or those with interest in improving care provided to the caregiver. These included the teams providing care for the dementia population, the traumatic brain injury population, psycho-oncologists, neuro-psychologists, and the palliative care team. Another critical contribution was from the Family Advisory Council (FAC). The FAC is composed of past and current caregivers of patients with brain tumors. The GMCP team met with the FAC for input and suggestions on the caregiver experience and programme development. Their insight was invaluable in shaping the resources and services of the programme. It was through these partnerships that many of the resources below were developed. (Table 2)
Table 2: Resources developed by the caregiver programme staff
Type of resource
Curated information packets
• Information for newly diagnosed brain tumour patients
• Inpatient caregiver consultations provide information about the caregiver role, tips for organising care in the post-operative period for newly diagnosed brain tumour patients who are status post craniotomy
• Neuro-Oncology Caregiver Support Group developed and offered monthly by GMCP social worker and nurse to address the emotional aspects of caring for someone with a primary brain tumor.
Many of these resources can be downloaded from braintumorcenter.ucsf.edu
In addition to providing direct care to caregivers and supportive programming, programme staff offer educational outreach to others about the nuances of caring for the neuro-oncology patient and caregiver throughout the illness and at the end of life.
- Hospital Palliative Medicine Fellowship Training – The GMCP team provides the neuro-oncology content, which includes information about the importance of caregiver support.
- Community hospice outreach and education – The GMCP RN reaches out to hospice agencies at the time of patient transition to hospice. Patient and family specific information as well as neuro-oncology educational resources developed specifically for the medical professional are offered to the providers. The caregiver programme RN provides educational in-services to hospice, home care, and community agencies interested in learning more about caring for the neuro-oncology patient and family.
- Professional meetings – All members of the GMCP team take advantage of opportunities to present to multi-disciplinary providers on innovative strategies for delivering care to the neuro-oncology caregiver.
Data collection starting in 2014 through May 31, 2019 documents over 4200 caregiver programme encounters. Services provided were distributed across the disease trajectory with higher numbers of encounters occurring at diagnosis and again at disease recurrence and/or transition to hospice (Table 3).
[table id=9 /]
The kinds of care provided varied greatly (Figure A).
The most common service provided across all time points was emotional support, which included active listening, validation, and normalisation of feelings, followed by the offering of disease information and resources and assistance with navigating healthcare. Needs identified by time-point in the illness trajectory varied as well. (Table 3). At diagnosis the need for information about available resources was the highest; at stable times of illness or treatment, concerns about understanding and managing patient behavioural and personality changes was the most commonly identified need; and at recurrence and or transition to hospice the highest need was understanding the illness and physical symptoms, and “what to expect”. These data documenting high time-points of utilisation of services and categories of services provided across the illness has remained consistent through the 5 years of programming, with very minor variation over time. The number of encounters per year for the last 3 years has remained consistent at approximately 800 per year, serving over 300 families each year.
The new caregiver specific programmes such as the monthly CG support group, annual neuro oncology caregiver retreat, and the caregiver webinars offer additional opportunities for support and more importantly connection with similar others.
Although it is widely recognised that caregivers of cancer patients experience distress and burden as a result of their role, and that those caring for someone with neurological symptoms are at even greater risk for distress and burden, to date there is no roadmap for neuro-oncology caregiver specific programming. A recent Cochrane review of interventions for neuro-oncology caregivers summarised 8 small (n<100) RCT studies that employed different methodologies across different populations, with low certainty of evidence for the effectiveness of improving caregiver well-being.8 The review emphasised the need for well-designed studies in this area. The highly variable nature of the illness and symptoms experienced as well as differences in each caregivers’ internal and external resources and response may diminish the impact of “a one size fits all” approach. A programme that has the capacity to take into account and respond to the variations in patient and caregiver experiences may be necessary and prove to have greater efficacy. The ONS Putting Evidence into Practice (PEP) Resources for Caregiver Strain and Burden group have categorised multi-component interventions for caregivers as likely to be effective9. The UCSF GMCP advocates for meeting caregiver needs through a dedicated caregiver programme team to offer individualised and tailored care when possible. Caregiver specific staff allow for assessment of the external and internal resources that are available to the caregiver as well as patient specific differences in symptom burden and treatment outcomes. Experienced staff who understand the symptoms, disease trajectory, and implications for caregivers are critical. Care is tailored to each caregiver to meet their individual situation and address their specific needs. In addition to direct care, dedicated staff allow for the creation of new programming as well as the development of partnerships with other health team members, medical specialties, and caregiver advocates, raising awareness of the problems neuro-oncology caregivers face and expanding access to the resources available. 100% of caregivers responding to our annual feedback survey felt that having dedicated caregiver programme staff who have time and expertise to assess and respond to each caregiver’s unique illness experience and the demands facing the caregiver added value to the patient’s care.
Unfortunately, in today’s health climate, the resources for providing dedicated caregiver support is limited. However, the need for support remains. Neuro-oncology providers must be creative and look for various ways to provide services to the caregiver across the disease trajectory. Strategies that can be utilised by neuro-oncology teams who want to address the needs of the caregiver when resources are limited may include the following:
- First and foremost is a commitment from leadership recognising that caregivers are part of the health care team and require support
- A brief acknowledgement of the caregiver as a health team member and assessment of caregiver concerns should become a standard part of every patient visit.
- Utilise the resources that are currently available in the clinic and community, i.e. ABTA, IBTA, other brain tumour charity resources, and personnel, such as social workers and therapists who provide caregiver support.
- Identify gaps in resources and services, and set up goals or projects to meet those high need areas, avoiding duplication of existing services.
- Based on resources available and unmet needs create small single projects and goals for caregiver services and buildout additional programming as resources permit. Examples include, caregiver specific education materials, support groups and workshops that may include high need topic areas such as knowledge of available resources, talking with children, getting back to work, and what to expect with disease progression.
- Ensure check points and evaluation of outcomes. Are caregivers’ needs being adequately identified? Is the team able to meet the needs? If something is not working, stop, re-evaluate, and change course if necessary.
It has been 5 years since the UCSF GMCP began providing direct care to the caregivers of the neuro-oncology patient. A dedicated staff allowed the programme to ramp up quickly and begin providing services within the first 6 months of programme initiation. The team is consistently serving 300 families a year. Common care need themes have been identified and it is possible that these can be addressed using lower cost standardised materials and programming. However, it is important to remember that brain tumor patients are different than many other cancer patients. There are many nuances in each patient’s symptom burden as well as significant disparity in the external and internal resources available to each caregiver making a one-size fits all approach less than ideal. Caregiver specific staff allows for care to be provided that includes both practical and emotional support, and takes into account that a caregiver’s experience of the illness, although similar, is not the same as the patient’s. It also allows the staff to see the illness experience through the lens of a caregiver and advocate on their behalf. Each patient and caregiver situation is unique. For this reason, the UCSF GMCP believes that individually tailored caregiver support is a critical component of quality patient care. Further research is needed to help us advocate for this type of care.
- Arber, A., et al., Finding the right kind of support: a study of carers of those with a primary malignant brain tumour. Eur J Oncol Nurs, 2013. 17(1): p. 52-8.
- Janda, M., et al., Quality of life among patients with a brain tumor and their carers. J Psychosom Res, 2007. 63(6): p. 617-23.
- Sherwood, P.R., et al., Predictors of distress in caregivers of persons with a primary malignant brain tumor. Res Nurs Health, 2006. 29(2): p. 105-20.
- Sterckx, W., et al., The impact of a high-grade glioma on everyday life: a systematic review from the patient’s and caregiver’s perspective. Eur J Oncol Nurs, 2013. 17(1): p. 107-17.
- Sherwood, P., et al., Caregivers of persons with a brain tumor: a conceptual model. Nurs Inq, 2004. 11(1): p. 43-53.
- Schubart, J.R., M.B. Kinzie, and E. Farace, Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro Oncol, 2008. 10(1): p. 61-72.
- Sorensen, S., M. Pinquart, and P. Duberstein, How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 2002. 42(3): p. 356-72.
- Boele, F.W., et al., Interventions to help support caregivers of people with a brain or spinal cord tumour. Cochrane Database Syst Rev, 2019. 7: p. CD012582.
- ONS. Caregiver Strain and Burden. Putting Evidence into Practice 08/09/2019]; Available from: https://www.ons.org/practice-resources/pep/caregiver-strain-and-burden