Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model

Abstract

Background:

Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.

Objective:

To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.

Methods:

Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.

Results:

Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.

Conclusion:

Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.

Introduction

Early palliative care delivered concurrently with disease-directed cancer care has steadily developed globally and is now recommended in several national and organizational position statements.^1–3 While integrated concurrent oncology palliative care is available for inpatients and outpatients in many countries including Australia, Canada, and the United States,⁴ some countries, like Turkey, have yet to craft policy and establish models of comprehensive cancer care that reflect this integration.⁵ Turkey, like many countries, is experiencing an aging demographic trend and higher number of individuals not only living with cancer but also living longer with cancer⁶; cancer is the second leading cause of death in adults (20%),⁷ the incidence is 11 times and mortality is 15 times higher in the elderly.⁸ While the ratio of older adults (>65 years) is 8.3%, amounting to nearly 7 million people.⁹ Recognizing this trend, the Turkish Ministry of Health introduced palliative care formally in 2009 as one of the main strategic priorities of their National Cancer Control Program.¹⁰ While still a work in progress, with a high rise from 15 units (2014) to currently 316 inpatient palliative care units serving 166 hospitals in Turkey.¹¹

A critical next phase in further expanding and integrating palliative care in oncology in an aging Turkish population is the testing and development of tailored models of early concurrent palliative care that is delivered at the same time that Turkish patients receive curative cancer treatment.¹² Given the centrality of family to Turkish culture and the high dependency on families in delivering day-to-day cancer care in the home,^5,13 we believe that one of the first steps is understanding the impact of cancer on families and developing care models for patients where the role of family caregivers is central to the care model.¹³ Once family caregiver needs, perceptions, and situations can be better understood and documented, interventions and models of care can be adapted, designed, and tailored.^12,14

For this study, we aimed to take this next step by eliciting the experiences and perspectives of family caregivers of older Turkish patients with cancer and have them offer critical feedback on a model of early concurrent oncology palliative care that has demonstrated success in numerous U.S. clinical trials for both family caregivers and their relatives with cancer, called ENABLE (Educate, Nurture, Advise, Before Life Ends).^15–19 Based on Wagner's Chronic Illness Care Model, ENABLE is a multicomponent intervention initiated at the time of advanced cancer diagnosis consisting of an in-person palliative care assessment of the patient by a palliative care specialist provider, a series of weekly psychoeducational and problem-solving support telephone sessions with a nurse coach, and long-term monthly follow-up. Psychoeducational session topics included problem-solving coping, self-care, symptom management, social support, communication, decision making, and advance care planning.^16,17 The overall goal of this study was to elicit feedback from family caregivers on their experiences and on the ENABLE model of care is to use findings to modify the intervention and pilot test the adapted intervention in a Turkish population.

Methods

This was a qualitative evaluation study and the first “needs and preference assessment” phase of an intervention adaptation effort to translate and use principles from the ENABLE model of early concurrent palliative care to Turkish family caregivers of older persons with advanced cancer. Between January and April 2016, in-depth, semi-structured one-on-one interviews with family caregivers of older adults with advanced cancer were conducted. Chart reviews of family caregiver participants' relatives were also conducted to abstract additional information related to health care utilization and symptoms. The study protocol was reviewed and approved by the institutional review board (GO 15/331) of the University.

Sampling and recruitment

Family caregivers were purposively sampled and recruited from oncology inpatient services of a university oncology hospital in Ankara, Turkey. Eligibility criteria for caregivers included: (1) aged 18 years and older and (2) self-endorsing as providing care to a family member aged 65 years and older diagnosed with advanced cancer. Paid caregivers were not included in the study as the ENABLE originally developed for family caregivers. Inpatients from five oncology inpatient services were screened between February and September 2016 for potentially eligible patients with advanced cancer. Three of the inpatient services were serving for patients diagnosed with cancer and medical diseases, whereas two were specifically for oncology patients. Investigators visited the inpatient services and went over the patient list for patients aged 65 years and older diagnosed with advanced cancer. Identified patients were approached for the study. Although these patients aged 65 years and older diagnosed with advanced cancer, 14 did not have a caregiver present, 12 refused to participate, and 3 had paid caregiver. Identified patients' caregivers were approached by a study coordinator, informed about the study, and invited to participate. After informed consent, interviews were conducted by the principal investigators (I.A. and M.O.) in a private clinic room in a scheduled appropriate time for the caregiver. As this was a qualitative evaluation study, the sample size was met when data saturation was observed.²⁰

Study measures and data collection schedule

Qualitative interview guide

The interview guide was developed with open-ended questions concerning the following topics: major concerns and needs as a caregiver; physical, psychological, social, and financial aspects of care; and suggestions to adapt the ENABLE intervention (see Box 1 for interview guide questions). During initial piloting of the study protocol, all participants refused to be voice-recorded due to concerns of privacy, anonymity, and safety. To address this issue, the principal investigator took verbatim notes of all participant responses throughout interviews that were typed and uploaded into qualitative software for analysis. To ensure that participant perspectives were being documented adequately, participants reviewed the interviewer's notes for accuracy and completeness immediately following the interview. After interviews with 25 participants and preliminary analysis, the study team agreed that saturation had been reached.

Box 1.

Sample Interview Questions

Caregiving Experience

Some have said that caregiving is an expected role in Turkish culture and is not something you can choose to do or not do. What has been your experience? How did you become a caregiver? What does caregiving mean to you?

What is your typical day like? How do you feel about your responsibilities?

What impact has caregiving had on your life?

How has your physical and emotional health been since taking on the caregiving role?

Some caregivers say they have faced problems with their jobs when taking on the caregiver role. What has been your experience?

What social or financial strain have you faced in the caregiver role?

Support and Needs

What areas of caregiving do you feel you need support?

Do you think do you need additional skills or knowledge for your caregiving role?

What, if any, assistance have you received from your family and/or community? What has been the effect of your relative's cancer on your family relationships?

10.

What community resources and/or services have you used? Are there any that you did not use that would like to have?

Suggestions to Adapt ENABLE Intervention

11.

We are adapting a program to help support the quality of life and care of patients with cancer and their families called ENABLE to a Turkish population. ENABLE includes educational sessions for caregivers via phone. Before trying out this new program here in Turkey, we want to get feedback from you about what you like to get out of a program like this.

a. What information would you like to learn about in a program like this?

b. How would you like this program to be introduced to you? Would you like to receive it in-person or over the phone?

c. What topics do you think are essential to include in this program?

d. Part of ENABLE is a guidebook with information and resources relevant to caring for a person with cancer. What would you like to see in a guidebook like this?

Chart abstraction tool

A chart abstraction tool was developed with questions focusing on patients' number and reasons of emergency department (ED) visits, hospital admissions, and symptoms reported in the chart. Patient charts were retrospectively reviewed by a study coordinator for the three months before the qualitative interview. Charts were reviewed for the care, examination, and treatment provided in that process and the declared symptoms bothering in those admissions.

Data analysis

Analysis was performed using a thematic analysis approach.²¹ Interview transcripts were read repeatedly (I.A. and M.O.), and they were labeled to a section for analysis. Responses and notes were coded into themes, which were discussed with authors and thematic definitions created. Transcripts were re-read, re-coded, and revised to clarified definitions. Themes and codes represented the needs and challenges faced by caregivers, and their opinions about proposed intervention.

Data from chart review questionnaire were entered to SPSS v20. Descriptive statistics was used to present the data. The interview notes uploaded to qualitative software for analysis. To ensure that participant perspectives were being documented adequately, participants reviewed the interviewer's notes for accuracy and completeness immediately following the interview.

Results

Sociodemographic characteristics

Patients' (n = 25) sociodemographic characteristics are shown in Table 1. On average, patients were 71 years old and mostly male (60%), married (84%), and primary/secondary school educated (56%). Patients' advanced cancer diagnoses included gastrointestinal (36%), lung (20%), and hematologic (20%) malignancies. Most had been living with their cancer for an average of just over two years. Half of the patient participants (53%) had been hospitalized during the past three months, 36% were admitted to ED, and 11% to the intensive care unit (ICU). Primary reasons for ED and hospital admission were uncontrolled pain (31% and 32%, respectively), fever (25% and 21%, respectively), nausea–vomiting (ED, 25%), and fatigue (hospitalization, 26%). Reasons for ICU admissions were meningitis, ventilation problems, and intestinal obstruction.

Table 1.

Patient Characteristics

	n	%
Age, years	Mean 70.64 ± 4.55 years
65–69	11	44
70–75	10	40
76–81	4	16
Gender
Male	15	60
Female	10	40
Educational background
Primary/secondary	19	56
High school	2	8
College	3	12
Higher education	1	4
Marital status
Single	4	16
Married	21	84
Diagnosis
GI tract cancer (colon, stomach, pancreas)	9	36
Lung cancer	5	20
Hematologic cancer (lymphoma, chronic leukemia, multiple myeloma)	5	20
GU tract cancer (bladder, prostate, renal)	4	16
Other (cervix, peritoneal mesothelioma)	2	8
Diagnosis duration, years	Mean 25.36 ± 27.87 months
1	14	56
1.5–4	9	36
6–10	2	8
Resource use (past 3 months)
Hospitalization	19	52.8
ED admission	13	36.1
ICU admission	4	11.1
Patient-reported symptoms resulting in admission
ED
Pain	5	31.2
Nausea–vomiting	4	25.0
Fever/infection	4	25.0
Other (hypotension, fatigue, confusion)	3	18.8
Hospitalization
Pain	6	31.5
Fever/infection	4	21.1
Fatigue	5	26.3
Other (deterioration, weight loss, syncope)	4	21.1

ED, emergency department; GI, gastrointestinal; GU, genitourinary; ICU, intensive care unit.

Caregivers' (n = 25) sociodemographic characteristics are shown in Table 2. On average, caregivers were 47 years old and mostly female (72%), unemployed (68%), and primary/secondary school educated (48%). More than half of the caregivers (60%) were children of the patient (36% daughter, 24% son), 24% were spouse, and 16% were other relatives (e.g., father, father-in-law, daughter-in-law). Most (64%) had been caregiving for a year, 40% endorsed that their expenses were more than their income, and 44% were living with care recipient. Activities performed by caregivers included assisting with patients' personal and self-care (31%), feeding (23%), and care coordination (23%). Most caregivers felt that they had support from other family members with caregiving (88%) and that they were competent with caregiving (76%).

Table 2.

Caregiver Characteristics

	n	%
Age, years	Mean 47.04 ± 11.00 years
22–40	6	24.0
41–50	11	48.0
51–60	4	16.0
61–66	4	16.0
Gender
Male	7	28.0
Female	18	72.0
Educational background
Primary/secondary	12	48.0
High school	6	24.0
College	5	20.0
Higher education	2	8.0
Patient–caregiver relationship
Children (daughter/son)	15 (9/6)	60.0 (36.0/24.0)
Spouse	6	24
Relative (father, father-in-law, daughter-in-law)	4	16
Marital status
Single	4	16.0
Married	21	84.0
Employment status
Not employed	17	68.0
Employed	8	32.0
Financial status
Expenses > income	10	40.0
Income > expenses	4	16.0
Expenses = income	11	44.0
Living with patient
Yes	11	44.0
No	14	56.0
Caregiving duration, years	Mean 18.84 ± 24.61 months
1	16	64.0
1.5–4	7	28.0
6–8	2	8.0
Caregiving activities
Personal and self-care	12	30.8
Feeding	9	23.1
Care coordination	9	23.1
Helping with activities of daily living	5	12.8
Companionship	2	5.1
Psychosocial support	2	5.1
Are there any other people involved care?
Yes	22	88.0
No	3	12.0
Are you confident with caregiving?
Yes	19	76.0
No	6	24.0

Needs assessment and ENABLE care model preferences

Table 3 shows the main themes, exemplary quotes supporting these themes, and implications for adapting the ENABLE intervention for Turkey. Primary themes were organized under four main headings: the meaning of caregiving, the effect of caregiving on day-to-day life, education and consulting needs, and preferences about ENABLE model.

Table 3.

Summary of Themes, Supporting Quotes, and Intervention Plan

Themes	Sample quotes	Implication for ENABLE Turkey adaptation
Meaning of Caregiving Meeting self-care and psychosocial needs (n:9) Caregiving as a peace-filled and loving act (n:7) Role grounded in familial responsibility (n:4) Aim is to cure and relieve all pain (n:2) Role grounded in societies' expectation (n:1) Gods will (n:1)	“She is so helpless, so needy”—CG 02, F, 42 “I am caring with love, and thank god he is good”—CG 08, F, 60 “I am his daughter, caregiving is my responsibility, we all do what he wants, what he desires, he totally deserve this”—CG 14, M, 48 “Caregiving is a duty for me, it is told by religion, it is my faith. Trying my best to qualify this, and caring is my mission as his son”—CG 16, M, 45 “I wish I was able to take his pain away”—CG 15, F, 34 “When she smiles, everything feels good … we try to peace and ease her”—CG 16, M, 45 “I am doing my caring duty full, and I feel competent and peaceful … but I am not living …”—CG 24, F, 63 “Caring is all efforts to cure him and make him disease free”—CG 06, F, 54 “This is (disease) from god, we need to care, we will do what we can”—CG 01, M, 30	Caregivers feel caregiving as a natural role, a life mission, giving back, and full filling all basics of life of the caretaker. Session content and framing: (a) to discuss the positive and the “gift” of caregiving (b) to mention faith and spiritual conflicts about caregiving. (c) to include the limits of meeting the needs and activating patient.
Effect of Caregiving on Life Physical health deteriorated (n:19) Psychological health disrupted (n:14) Work life changed and economically strained (n:10) Self-care and social life diminished (n:9) Family life impacted (n:8) Life shifted to “living in hospital” (n:2)	“My health is affected really bad. Has been two years I managed to check my lab results with doc”—CG 03, F, 44 “Family life is really affected I can't forget my husband saying “you gave your life for your parents”—CG 03, F, 44 “I fell and my arm broken, this is while I was accompanying him at hospital for the surgery. I am doing a lot. And now they cannot administer chemo, I feel like this wastes my time and all care effort”—CG 05, F, 65 “… Feeling buried under …”—CG 08, F, 60 “I quit job, his health over all everything, my work and everything …”—CG 14, M, 48 “We bounded together interestingly”—CG 15, F, 34 “Financial hardship was the most … navigating the healthcare system for patient, communication problems strains … also trying to make decisions, to have a common sense among family is hard to manage”—CG 16, M, 45 “Really suffering extreme hardship of she is being unaware of everything … she don't know her diagnosis … keeping this secret feels very hard.… if she knows she will fell into pieces …”—CG 17, F, 50 “Traveling, walking around is a dream … I have leg pain, panic anxiety, immobility, … we were planning to travel around in those ages, but look he is sick again …”—CG 24, F, 63 “I was working as a bureaucrat back in days, I used to have my hair done daily … my husband he is in hospital, I want to do so, but not sure what people talk about me, I am having conflicts about looking after myself … this makes me feel bad”—CG 24, F, 63 “I am having mind blocks, and forgetfulness, this makes me incapacitate”—CG 09, F, 47	Caregivers experienced physical, psychosocial, and financial burden about caregiving. The hardship was raised with “cancer” diagnosis, treatment, and hospitalization. Sessions were planned to have (a) self-care activities (b) care planning (c) social and community support services (d) additional sessions in any case caregivers want to vent
Education and Consulting Needs Nutrition and meal preparation (n:6) Psychological and physical care (n:5) Illness trajectory and prognostic understanding (n:5) Emergency care (n:4) Coping strategies (n:4) Community-based support opportunities (n:4) Infection control (n:2)	“I would love to learn about more calming, and really need psychological support”—CG 03, F, 44 “Needing support with nutrition stuff, he has diarrhea and malnourished, I need support to manage this”—CG 06, F, 54 “Nutrition, hygiene!! I wish I was a doctor”—CG 10, F, 56 “I am so worried about infections, want to learn about protection”—CG 08, F, 60 “Managing appointments is really tough for me”—CG 10, F, 56 “Managing acute situations is my burning topic, also need to know how to manage my mom's psychology, mood … she is so depressed”—CG 12, F, 47 “How this disease (bladder ca) will go, how they will treat him? I have no idea”—CG 13, F, 42 “I don't know what I need to learn … I am acting instinctual, unconditionally, she has gastric cancer … the hardship of the diagnosis is feeding her … and psychological support …”—CG 16, M, 45 “He can't walk … he has very heavy pain … needs positioning … not sure I am good at positioning … wishing to have home care services …”—CG 18, F, 66 “Community services will be good to learn … QoL decreased, where to apply and what to do emergency situations …”—CG 23, M, 44	Caregivers were overwhelmed mostly with physical care, cancer prognosis, symptom management especially nutrition and psychological related, hospital-appointment arrangements. The content of ENABLE was planned to increase focus on psychological support of patient as well as caregivers' psychological support and improve physical care.
Preferences about ENABLE model In-person delivery method (n:14) Educational material support (n:23) Content of ENABLE Disease (n:8), psychological support (n:6), caregiving (n:5), nutrition (n:5), community services (n:4), communication (n:4), end-of-life and holistic care (n:4)	“I am so stressed and having hard time to remember, I would prefer face-to-face”—CG 09, F, 47 “…-to-face interaction is better”—CG 14, M, 48 “Can't live him alone I will prefer phone”—CG 08, F, 60 “Disease prognosis, end-of-life care, care about myself, stress management and physical care with face-to-face interaction and booklet”—CG 24, F, 63 “Need to learn about community services, and care support”—CG 10, F, 56 “What I will do if I can't reach out my doctor, need to learn more”—CG 11, F, 65 “Information about the disease, feeding, care, treatment, with booklet”—CG 18, F, 66 “Acute care and first aid, and where to stop in caring, especially for not making patient dependent”—CG 23, M, 44	Participants were more on need for disease, medication, and caring. And preference was in-person for recalling the information and interacting. The program was developed (a) to be an in-person approach with the opportunity to have phone call. (b) to be supported with educational material. (c) to keep core ENABLE content related to acute care, exacerbation management.

ENABLE, Educate, Nurture, Advise, Before Life Ends.

Meaning of caregiving

Almost all (84%) caregivers stated deriving some sense of satisfaction with caregiving, describing the experience as “natural,” “peaceful,” and performed with “affection” and “love.” Many spoke of it as sacred responsibility grounded in their familial obligations (e.g., “This is my responsibility as his daughter” [CG 08, F, 42]) and their religious duties to God. One-third of participants highlighted the role from a task perspective, discussing the day-to-day particulars of how they strove to meet the physical and psychosocial needs of their relative (33.3%). Some felt that they were caring in an effort to cure their relative.

Effect of caregiving on life

Nearly all (96%) participants stated that caregiving had a significant effect on one or more areas of their day-to-day life. These areas included: changes to their own physical (30%) and psychological health (21%); work life and financial situation (16%), and self-care and social health (14%); strained family dynamics (13%); and dealing with changing living situations (3%) (Table 3). One caregiver talked about experiencing several of these changes in her life: “The hardest part was the financial stress … and while caring for my father was my responsibility as a daughter, dealing with the hospital and communicating with staff every day was a heavy burden. It was also trying to have to make all of his decisions and get family to agree on things” (CG 16, M, 45). Another caregiver expressed the impact this type of strain had on their own well-being: “After a while, I started getting tired a lot and yet I was struggling to sleep at night … I keep worrying about things like our financial situation, the fact that I can't go out with my friends or that I can't go see my doctor for pain I'm having in my chest …” (CG 18, F, 66). These quotes highlight an issue frequently mentioned by participants, namely financial difficulties and having to seek additional paid work. One caregiver stated, “Because of the hospital costs, I had to find a job sewing to help support our finances” (CG 03, F, 44).

These quotes also highlight how caregiving affected participants' physical health, with caregivers mentioning “fatigue,” “physically exhaustion,” “emotional turmoil,” “sleep problems,” “high blood pressure,” “feeling like my heart is racing,” “feeling depressed,” stomach upset, loss of appetite and weight loss, and difficulties being able to visit their own doctor. Most caregivers also stated problems with maintaining family life especially around treatment decisions and having other family members help with daily tasks and coordinating care and communicating with their relative's oncology team. Because most of the responsibilities often fell on a single person, caregiver participants talked about the social isolation this caused. As one caregiver stated, “I felt like I haven't really lived these past 4 years because I haven't seen any of my friends. Time for myself has also been very limited” (CG24, F, 63). Not all caregivers reported negative aspects of caregiving, however. Several caregivers reported more closeness to their families, feeling “more connected,” “supportive,” and “bonded.”

Education and consulting needs

Participants were asked what areas of caregiving were the most problematic and hardest that could be eased with additional support. The most frequently stated activity was caring for multiple family members at the same time, spending time in the hospital, organizing and searching for health care services, keeping other family updated with the patient's situation, and coping with the “cancer” diagnosis itself (Table 3). Most caregivers (76%) expressed competency with caregiving, although 68% said that they often had to seek out education and services. Areas that caregivers expressed wanting more information about included: nutrition and feeding, infection control, psychological and physical caring, disease understanding (17%), handling emergency situations (14%), and community-based services (homecare, cleaning services) (13%) (Table 3).

Preferences about ENABLE model

Most caregivers (56%) wanted to receive support from an ENABLE-type program in-person, although some (16%) also wanted delivery to be by both phone and in-person. Nearly all participants were enthusiastic about receiving educational materials (92%). Frequently mentioned preferred topics included: disease and prognostic understanding, medication management, knowing when to call for help, receiving coping and psychological support, caregiving (providing physical and psychosocial care), nutrition and meal preparation, communication, and identifying community services.

Discussion

The purpose of this study was to elicit the experiences and feedback of family caregivers of older relatives with advanced cancer to inform the adaptation of a model of early oncology palliative care to a Turkish population (ENABLE Turkey, ENABLE-TR). The implications of the findings for informing adaptations to the ENABLE intervention for testing in a Turkish population are listed in the third column of Table 3.

Results highlighted the real-life components of caregiving for older adults with cancer in Turkey, and the foundational information for developing an intervention protocol for this population. While some core elements of the ENABLE intervention will be retained, other elements will need to be tailored for Turkish culture and health care setting. The basis of this caregiver-tailored palliative care model intervention includes functional (physical and psychosocial) status management, understanding of illness and prognosis, assistance with caring for the patient, coordination with care providers across outpatient and inpatient settings, and initiating caregivers' support early in the course of the patients' illness. The basic components included face-to-face meetings, and phone coaching and education as recommended in the American Society of Clinical Oncology (ASCO) clinical practice guideline.¹

Caregivers' physical, psychological, work, social, and family lives were affected by the care they provided and the stress of watching their loved one's disease process progress. They were also strained by spending long hours in hospital providing care to the patient, while also trying to balance managing their household. The most stressful problems were financial strain, care coordination, communication, family and visitor organization, and not having time for themselves.^22–24 However, in this study, caregivers were less likely to express “burden” and rarely used this term. This is likely attributable to their cultural beliefs of caring as a responsibility and a source of satisfaction in fulfilling this responsibility overall.²⁵ Caregivers focus was psychological changes related with process and helping patient in that area. Hence, caregivers tended to highlight their needs for educational and support, rather than to describe any personal feelings of conflict about their caregiver role. Relatedly, ENABLE-TR will emphasize building rapport, trust, and relationship with caregivers in concert with raising awareness about structure and importance of palliative care services and the expected benefits. The first session is designed to refocus the caregiver on their needs including “the role of caregiver, care story, challenges faced by caregiver.”

Education and support needs were clustered around their loved one's care needs, disease, coping, and community services. Pain, nausea, vomiting, fatigue, and deterioration were the most burdensome symptoms that led to hospital readmissions. These are some of the most common areas where palliative care can provide support.²⁶ Holtan et al. found that difficulties in pain management were often due to lack of knowledge.²⁷ Bruera and Hui emphasized that high quality of symptom management and care depends on assessment of specific needs and then referring to palliative care to meet the needs.²⁸ Palliative care with the focus on symptom management also supports caregivers who are caring for patients at home.²⁹ Complementing palliative care consultation, ENABLE emphasizes individually planned care, illness understanding, and discussing symptoms.

A number of issues arose during the interviews that helped inform the cultural aspects and tailoring of ENABLE. For example, in Turkey, it is rare for health care providers to disclose the cancer diagnosis to the patient, and therefore, health care professionals or family are often in a position of making decisions on behalf of the patient. Furthermore, it is considered culturally inappropriate or rude to discuss end of life or death. Hence, it was not surprising that caregivers did not share this concern or need. Taking this into account, ENABLE-TR is adapted to respect this cultural norm by having a greater emphasis on decision making and community resources for end of life in a more general way. With the data gathered from this study, some additional sessions will be included and coaching will be planned as indicated in the flow diagram for ENABLE-TR sessions (Fig. 1).

FIG. 1.

Flow diagram for ENABLE-TR sessions. ENABLE, Educate, Nurture, Advise, Before Life Ends.

Interview feedback was strongly in favor of ENABLE being delivered in-person with a resource book rather than by phone. This is also a norm in Mediterranean cultures who value in-person activities, so that body language and visual support can supplement the content. Caregivers in this study group desired more expert in-person guidance. Shifts in content included less emphasis on coaching about problem solving, coping and decision making, and more content on the basic disease process and what to expect, practical aspects of physical and psychological care of patient and caregiver support. ENABLE-TR is designed to provide a culturally oriented extra-layer of support that is incorporated into routine oncology care. Similar to the ASCO recommended guidelines for patients,¹ caregivers will be referred to palliative care early in the disease course.

Limitations

This study has several limitations. This adaptation study reports the first phase to assess the needs and determine the modification needs of intervention with a sample limited to primary caregivers of hospitalized older patients with cancer in Turkey. A larger sample of patient caregivers from other settings may produce broader themes. Another limitation was the inability to record the interviews, which limited the ability to get some quotations verbatim. However, we addressed this issue by having interviewers review their field notes with the participants immediately after the interview.

Conclusion

Early integration of palliative care optimizes the quality of care for persons with cancer and their family caregivers. ENABLE was identified as a good beginning to develop an early palliative care model for Turkish caregivers of persons with cancer, which is now being tailored to be culturally appropriate for the Turkish population. To this end, translation, cultural adaptation, and pilot testing the ENABLE intervention will allow researchers in Turkey build on multicomponent ENABLE intervention, model early palliative care for health care system.

Footnotes

Acknowledgments

Dr. Akyar was supported by the University of Alabama at Birmingham (UAB), School of Nursing (SON) Research Scholar award, the UAB SON Marie L. O'Koren Endowed Chair Research Fund, Hacettepe University Research Department, and a Turkish Higher Education Council grant. Dr. J. Nicholas Dionne-Odom was supported by the National Institutes of Nursing Research (K99NR015903). Dr. Bakitas was supported by the National Palliative Care Research Center Pilot/Exploratory Award, NINR R0-1 NR011871-01, American Cancer Society Research Scholar Grant (RSG#), and NINR 1 R01 NR013665-01A1. This study was funded by Hacettepe University Research Department (Registration: TUA-2015-5831).

Author Disclosure Statement

The authors declared no potential conflicts of interest with respect to research, authorship, and/or publication of the article.

References

Ferrell

, Temel

, Temin

, Alesi

, et al.: Integration of palliative care into standard oncology care: American society of clinical oncology clinical practice guideline update. J Clin Oncol, 2017; 35:96–112.

NCCN Clinical Practice Guidelines in Oncology: Palliative Care. National Comprehensive Cancer Network. www.nccn.org/professionals/physician_gls/pdf/palliative.pdf. Version 1.2018. (Last accessed July 23, 2018).

Haun

, Estel

, Ruecker

, et al.: Early palliative care for adults with advanced cancer. The Cochrane database of systematic reviews, 2017; 6:CD011129. http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD011129.pub2/abstract;jsessionid=893E293C85E3E8208D593953C4192D53.f04t02 (Last accessed July 23, 2018).

Worldwide Palliative Care Alliance and World Health Organization: Global atlas of palliative care at the end of life. London: Worldwide Palliative Care Alliance. 2014. www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf (Last accessed July 23, 2018)

Walker

, Edwards

, Bagcivan

, Bakitas

: Cancer and palliative care in the United States, Turkey, and Malawi: Developing global collaborations. Asia Pac J Oncol Nurs, 2017; 4:209–219.

Kebudi

, Cakir

: Cancer care in a country undergoing transition: Turkey, current challenges and trends for the future. In: Silbermann

(ed): Cancer Care in Countries and Societies in Transition. Cham: Springer: 2016, pp. 193–208.

International Agency for research on Cancer: GLOBOCAN: Online Analysis Estimated Cancer Incidence, Mortality and Prevalence Worldwide in. 2012. http://globocan.iarc.fr/Pages/fact_sheets_cancer.aspx (Last accessed July 23, 2018)

Yancik

, Ries

: Cancer in older persons: An international issue in an aging world. Semin Oncol, 2004; 31:128–136.

Turkish Statistical Institute: Elderly Statistics. www.tuik.gov.tr/PreHaberBultenleri.do?id=24644 (Last accessed July 23, 2018).

10.

Hacıkamiloglu

, Utku

, Cukurova

, et al.: Community palliative care in Turkey: A collaborative promoter to a new concept in the Middle East. J Public Health Manag Pract, 2016; 22:81–88.

11.

Current Situation of Palliative Care Centers. https://khgmozellikli.saglik.gov.tr/svg/palyatif.php (Last accessed July 11, 2018).

12.

Steer

: Supportive care in older adults with cancer–An update of research in 2015. J Geriatr Oncol, 2016; 7:397–403.

13.

Koll

, Pergolotti

, Holmes

, et al.: Supportive care in older adults with cancer: Across the continuum. Curr Oncol Rep, 2016; 18:1–10.

14.

Moreno

, Mangione

, Kimbro

, Vaisberg

: American Geriatrics Society Expert Panel on Care of Older Adults with Diabetes Mellitus. Guidelines abstracted from the American Geriatrics Society Guidelines for Improving the Care of Older Adults with Diabetes Mellitus: 2013 update. J Am Geriatr Soc, 2013; 61:2020–2026.

15.

Williams

, Bakitas

: Cancer family caregivers: A new direction for interventions. J Palliat Med, 2012; 15:775–783.

16.

Bakitas

, Stevens

, Ahles

, et al.: Project ENABLE: A palliative care demonstration project for advanced cancer patients in three settings. J Palliat Med, 2004; 72:363–372.

17.

Bakitas

, Lyons

, Hegel

, et al.: Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. JAMA, 2009; 302:741–749.

18.

Bakitas

, Tosteson

, Li

, et al.: Early versus delayed initiation of concurrent palliative oncology care: Patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol, 2015; 33:1438–1445.

19.

Dionne-Odom

, Azuero

, Lyons

, et al. Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III randomized controlled trial. J Clin Oncol, 2015; 33:1446–1452.

20.

Patton

: Qualitative Research & Evaluation Methods: Integrating Theory and Practice, 4th ed. Thousand Oaks, CA: Sage Publishing, 2015.

21.

Attride-Stirling

: Thematic Networks: An analytic tool for qualitative research. Qual Res, 2001; 1:385–405.

22.

Weitzner

, Haley

, Chen

: The family caregiver of the older cancer patient. Hematol Oncol Clin North Am, 2000; 14:269–281.

23.

Sano

, Maeyama

, Kawa

, et al.: Family caregiver's experiences in caring for a patient with terminal cancer at home in Japan. Palliat Support Care, 2007; 5:389–395.

24.

Northouse

, Katapodi

, Song

, et al.: Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA Cancer J Clin, 2010; 60:317–339.

25.

Daniel

: Filial Piety, Caregiving Appraisal, and Caregiving Burden. Res Aging. 2010; 32:200–223.

26.

Sandgren

, Fridlund

, Nyberg

, et al.: Symptoms, care needs and diagnosis in palliative cancer patients in acute care hospitals: A 5-year follow-up survey. Acta Oncol, 2010; 49:460–466.

27.

Holtan

, Aass

, Nordoy

, et al.: Prevalence of pain in hospitalised cancer patients in Norway: A national survey. Palliat Med, 2007; 21:7–13.

28.

Bruera

, Hui

: Integrating supportive and palliative care in the trajectory of cancer: Establishing goals and models of care. J Clin Oncol, 2010; 28:4013–4017.

29.

Lambert

, Girgis

: Unmet supportive care needs among informal caregivers of patients with cancer: Opportunities and challenges in informing the development of interventions. Asia Pac J Oncol Nurs, 2017; 4:136–139.