The care of oncology patients often involves the assistance of informal caregivers such as family members or friends. Data from the United States reveal that an estimated 40 million caregivers provide care to adults (aged 18+) with a disability or illness. Caregiver services were valued at $470 billion per year in 2013 – up from $375 billion in 2007. With the aging population expected to double between 2000 and 2030, the impact of caregiving on healthcare will likely continue to increase (Family Caregiver Alliance, 2016; Cobb, Etkins, Nelson, Egleston, Sweeney, 2016). The important role that informal caregivers play in providing optimal care to oncology patients has been recognized by the Oncology Nursing Society and has consistently been a part of ONS’s Research Agenda since 2001 (Knobf, et al, 2015).
An initial study conducted by the PI of this study and her study team compared the reactions and experiences of informal caregivers of oncology patients to that of informal caregivers of patients with other chronic illnesses. One of the key findings of the initial study was that 78% of caregivers reported not using any outside services in providing care to patients in the home setting. A review of the literature revealed only a few research studies exploring caregiver use of outside services and potential barriers to use. In a study of informal caregivers of cancer patients 63% of the caregivers reported that they provided all of the care for the patient without assistance (vanRyn, et al., 2011). ). Green and Smith (2015) reported a systematic review related to barriers and facilitators for male carers (caregivers) in accessing formal and informal support. The findings from these studies reveal a gap in our knowledge of caregiver needs for home care support services, barriers to use of these services, how these needs change over time and how to best support caregivers in their role.
Another major finding of the initial study was that informal caregivers viewed offering emotional and psychological support to the patient as the most challenging caregiving activity. This finding was consistent with that of vanRyn et al. (2011) who found that while 71% of caregivers in their study felt “very” to “extremely” confident about providing physical care to the patient, they felt much less confident about care of the emotional needs of the patients (49% felt “very” to “extremely” confident) . The burden to support patients emotionally and psychologically falls on caregivers who also are burdened with their own emotional and psychological coping needs. Further study of what caregiver needs are in regards to emotional burdens and how healthcare providers can help in this area is merited.
Most caregiving research to date has been static and focused on a specific point in time e.g. diagnosis or palliative care phases (Stamataki, et al, 2014). Few studies have addressed how caregiver experiences and needs change over the trajectory of the cancer experience (Given, Given & Sherwood, 2012). One of the participants in Cobb’s original study remarked that caregiver “emotions change day to day, even hour to hour”. How caregiver needs and experiences may vary over time is an area of needed study
The purpose of this study is to explore the experiences and needs of informal caregivers of adult oncology patients. The primary aims of this study are to identify what information caregivers need and desire in relation to outside services to assist them in their role and to describe barriers to use of outside services by informal caregivers. Secondary aims are to explore experiences and needs of caregivers relative to providing emotional and psychological support to the care recipient (patient) and to describe how caregiver experiences and needs change over time
The methodology for this study is qualitative description using structured, open-ended individual interviews with informal caregivers. Data analysis will consist of review of interview transcripts and field notes with identification of themes and key comments. The investigator will search for themes that represent commonalities across participants’ comments.
Results: Themes will be generated inductively from responses to interview questions and field notes. Recurring ideas and perspectives will be recorded as themes. Preliminary themes will be identified as the records are reviewed. Themes will be interrelated, by juxtaposing those with similar meanings. Suggestions from study participants regarding what could be done to help them be more effective and cope better in their caregiving role will be analyzed and compiled.
The findings from this study will provide nursing and social work staff with information on how to better support informal caregivers in their very important role in the care of oncology patients. The findings may also be used to inform planning and content of caregiver education for nursing and other staff, to better meet the needs of this population.