Acceptance Process Model of Patients ’ Life with Terminally Ill in Home Hospice and Development of a Narrative Approach for Nurses

The prime aim of this study was to find a psychological process model of patients with terminally ill in home hospice investigating the contents of a narrative, and the secondary aim was to create a narrative approach program for nurses. Ten patients narrated their thinking or feelings along with some prepared questions in two sessions. Patients’ narrative data were categorized by a qualitative analysis and 34 categories were chosen. They perceived good points in home hospice like “Being able to spend time freely”, “Close relationships with care staffs and strong confidence”, though they perceived trouble points like “Suffering from putting burden on the people around me” or “Worries about economic problems”. They perceived psychological changes through illness like “Having peace of mind and becoming kind” “Desire for a natural death”. Moreover they perceived their life like “Acceptance of one’s life including illness” “My life lived with satisfaction”. They regarded as important things such as “Spending life time usefully” “Feelings of my family members and of those around me”, and as hopes “Hope to leave my living proof” “Living left time to the fullest”. From these categories, we propose an acceptance model of patients’ life and a narrative program for nurses.


Introduction
In these days psychotherapeutic intervention is important in the view of the rising prevalence and mortality rates from cancer and other non-communicable diseases, largely due to the ageing of the world' population [1].These people feel various kind of suffering like anxiety or depression, and one of the most serious is psycho-existential suffering, which is also called spiritual pain.One of the origins of this pain is the perceived loss of a future [2].Spiritual pain consists of loss of meaning of life or loss of peace in mind.
For this suffering, there are various mental or psychotherapeutic interventions such as cognitive behavior therapy [3] or meaning-center group psychotherapy [4] for advance cancer patients.Though there are useful, terminally ill cancer patients sometimes may be hard to participate in group or formal counseling session.A life review interview was effective for spiritual pain or psychological distress [5] of terminally ill patients; however some patients did not hope to review their memories and some had severe past memories.To integrate sweet memories and severe memories of patients require professional skills for counseling for nurses.To propose psychological care by nurses, we need to develop another one.
A narrative approach was another useful psychotherapy which includes narrative theory.White and Epson demonstrated a narrative therapy [6].It comes from social constructivism, and the meaning emerged from narratives between an interviewer and an interviewee.Narrative is an important way of constructing meaning [7], and people create meaning of illness, suffering, and death through narrative, by telling a story [8] [9].A narrative approach was seemed to be suitable intervention for terminally ill patients to construct meaning.
Regarding narrative research, many are case studies.In this condition, Bronna, et al. [7] discussed the process of meaning construction, and Stanley and Hurst [8] showed a method of building empathy.Qualitative analyses of narratives at the end of life are very few; Tait, et al. [10] conducted Dignity therapy in which patients narrated their lives for legacy.Qualitative analyses were conducted by physicians who found three types: Evaluation narrative, Transition narrative, and Legacy narratives.The above studies were almost entirely conducted in hospitals or palliative care wards, not at home hospice.And most of the interviewers were conducted by psychologists, physicians, social workers, and so on, not nurses.In the near future, the number of patients who spend time at home at the end of life, and the number of visiting nurses who take care of them in home hospice will increase and psychotherapeutic intervention by nurses will be required.Then we conducted a narrative approach by nurses for terminally ill patients in home hospice, analyzed the contents of the narrative to understand patients' subjective thinking and feeling, and created a program for nurses to conduct in home hospice.

Methods
Participants: We attempted to recruit 12 patients, two declined to participate, and 10 participated.They were patients in three kinds of clinics in Japan (Table 1).The mean age was 68.9 years old.The participants had various primary diseases, and a Performance Status (PS) [11] from 2 to 4. The stage of cancer was "4" or recurrence.The inclusion criteria were terminally ill patients who used home hospice, were aged ≥ 20 years old, and had physical strength to talk about 60 minutes.The exclusion criteria were patients with cognitive impairment or serious mental illness.
Procedure: The following is the recruit method.The primary physician introduced the study to a patient who met the inclusion criteria.Patients who showed interest were registered and the researchers sent a letter about the research.After sending a letter, the researcher explained the details of the study to the candidate by telephone.If he or she agreed to participate, they decided the place and time for an interview.The interviewer visited a patient's home or a clinic, and explained about the research again, and received informed consent after agreement for participation.
In the Narrative approach, there were two sessions.We prepared some question referring to previous studies to promote patients' narrative [12] [13].
In the first session, there were the following questions, 1) How did you live before your illness? 2) How did you live after becoming ill? 3) What are difficulties in your life in home hospice, and how do you cope with them?4) What are good thing in your life in home hospice?In the second session, the following questions were asked, 5) What were the changes after getting your illness? 6) What are the most important things in your life?7) How do you think of your life? and 8) What is your hope in the future?With participants' permission, their narrative was recorded on IC recorders.Before the first session and after the second session, the participants completed questionnaires.Each session lasted about 60 minutes.They completed some psychological questionnaires; these quantitative results are reported in another occasion.This study was approved by the ethical boards of St. Mary's College.Analysis: We conducted qualitative analysis.For narrative data, we employed "qualitative analysis" by Funashima [14] based on the work of Berelson [15] which involves creating codes, subcategories and categories.These narratives were edited into the shortest statement without losing meaning and coded into one subcategory along with similar statements.Similar subcategories were then integrated into one category.To maintain reliability, categorization and coding were validated independently by researchers.Inconsistencies were discussed and negotiated until agreement was reached.

Results
We recruited 12 patients, two withdrew because of their physical condition, and 10 participated.
We indicate a category as " " and the subcategories as < > in this study.The life before illness was various and the life after illness including medical treatments or daily life was also various.Then we analyzed narratives without these questions.These two questions were useful to begin narrating their lives.
To the question of "What are good things in home hospice?", we chose categories (Table 2) 1) "Being able to spend time freely" like <spending time free-ly> or <Having fulfilling time and satisfaction>, 2) "Open relation to outside world" like <Greeting guests being able to visit freely> or <Getting energy from greeting guests>, 3) "Having much time with my family" like <Enabling me to meet family freely> or <Feeling family's warmth>, 4) "Close relationships with care staff and strong confidence" like <Getting energy from home visiting> or <Being able to ask questions anytime>, and 5) "Reduction in the number of hospital visits" like <Reduction of physical burden> or <Minimum life style change>, 6) "Keeping an independent life in mind" was also chosen."Gratitude for encountering reliable physicians" like <Encountering a reliable physician> <Encountering a cheerful physician>, 16) "Desire for a natural death" like <Staying healthy until death> <Dying while sleeping>, 17) "Consciousness of near death" like <Increasing physical and mental suffering> <Increasing sense of tiredness>, 18) "Experiencing sense of loss" like <Difficulty of emotion control> <Departing from social life>.
To the question of "What is important for you", we chose categories (   To the question of "What is your hope for the future", we chose categories (Table 7), 28) "Hope to leave my living proof" like <Hope to leave my living proof> <Hope to narrate my life to students>, 29) "Living left time to the fullest"

Discussion
1) Acceptance process model of patients' life in home hospice From selected categories, we can propose a process model of patient' life (Figure 1).In the beginning they can't accept their life, because their self-concept with cancer is not congruent with their ideal.However, they experience the above process like warm human relationships, caring with respect by physicians or nurses, their inconsistency between self-concept and their ideal is reduced.A home hospice proposes these conditions.Redundantly their self-concept and their ideal may congruent.This process is near the person centered approach by Rogers [16].Congruency promote for patients to accept their lives with illness and have peace of mind.For Japanese, the word of acceptance is near to resignation.We need to obtain the evidence of this model. 2

) Required treatments to troubles
There are some troubles in home hospice."Worries about economic problems" is related to insurance plan in Japan.Multidisciplinary workers such as social workers can support them and will be needed much more in home hospice.About "Worries about the future of people who remain", medical staffs need to assess the level or kinds of worries and try to resolve realistic problems.A factor of "Troubles caused by various physical symptoms" is the same trouble factor from previous studies [17] [18], although medical staffs proposed care as much as possible.Since physical symptoms affects mental or psychological problem [19] and medical staffs are not stay always in home hospice, explanation about them and coping methods will be needed for patients and families much more.
The factor of "Suffering from putting a burden on the people around me" is one of the factors of Good Death [20].In particular, in home hospice patients feel burden about receiving care from family member.Patients, their families, and medical staffs think and talk about plan of future.A family and a patient need to talk whether they use home hospice or not.In these days, importance of Advance Care Planning (ACP) is pointed [21].
3) Development of the narrative approach program In near future, the number of visiting nurses will increase in home hospice.And they are required mental or psychological care.A narrative approach may be useful to nurses.We propose the Narrative Approach program (Table 8) at home hospice by nurses.About questions, it is easy to talk about good points and troubles in home hospice.Then they can found changes after experience illness comparing before illness and recognize important things.They rethink their lives including their illness experience and found new hopes in near future.We set the questions.
Comparing method of life review with this narrative approach, in the life review [22], factors like "Good human relationships and transcendence" "achievement and satisfaction" or "Good memories" are primary concerns and related to high spiritual wellbeing.Also, "Human relationships" or "Pleasant memories" were primary concerns [23].In these life review method, the question of asking past memories and good memories affected the utility of life review.However, some patients do not want to remember memories.Life review is suitable for people with good memories and with integration power of good and bad memories, however, it needs professional skills like a psychologist and it is hard for a visiting nurse to conduct life review.Comparing a life review, narrative approach is not limited by memories and patients narrated freely.Visiting nurses may conduct this approach and effective.
From recent previous studies, usefulness of narrative is shown.Efficacy of narrative intervention was demonstrated in some previous studies.Lloyd-Williams et al. [12] showed the efficacy on depression; however definite question items were not showed.Wise et al. [13] showed the efficacy of Telephone-based narrative interventions on wellbeing; however since this method need telephone

Figure 1 .
Figure 1.Acceptance process model of patient' life.

Table 2 .
Categories about good points and troubles in home hospice care.What are troubles for you during home treatment?",wechose the category (Table3) 7) "Worries about economic problems" including <Anxiety of longer home treatment> or <Lack of income>, 8) "Trouble caused by various physical symptoms" like <Changing body image by ascites>, <Low CodeSub-Categories Categories  I can spend time freely at home. A day is fulfilling and I am satisfied with it. Spending time freely  Having fulfilling time and satisfaction 1) Being able to spend time freely  Students came to see me at any time. I could get energy from greeting guests. Since I live alone, I do things myself. I need to talk with someone and walk. I do what I can do myself. Maintain self-care consciousness 6) Keeping an independent life in mind To the question of "about things> <Being able to wait>, 13) "Having peace of mind and becoming kind" like <Leaving for work and having peace of mind> <Becoming kinder to others>.We chose categories, 14) "Being able to rely on others" like <Being able to express my feeling> <Relying on other for what I can't do by myself>, 15)

Table 5 )
, 19) "Spending left time usefully", like <Living usefully> or <Evaluation of my feeling>, 20) "Feelings of my family members and of those around me" like <Understanding feeling of others> or <Feeling of my family members>, 21) "Family members who take care of me" like <Family as the most important> or <Not giving troubles>, 22) "Relationships to generations and encounters with people" like <Parents who raised me> or <Encounter with a child>.Tables 3. Categories about trouble points. I am worried about my single sons' future. I am sorry for my son for taking care of me. Single son's future  Feeling sorry for taking care for me 10) Worries about the future of people who remain

Table 4 .
Categories about the changes through illness.
 Tears fall down when I am awake.I am not contacting others because I will not be able to respond in the future.Difficulty of emotion control  Departing from social life 18) Experiencing sense of loss

Table 5 .
Categories what is important for you.

Table 6 .
Categories about what do you feel about your life?

Table 7 .
Categories about what are hopes for the future.
 I want to live left time to the fullest  I want to tell my feeling to my parents. Hope to live without regret  Hope to say my feeling to my parents or friends 29) Living left time to the fullest  I want to spend limited time freely. I want to find pleasure. Hope to do things I like such as trip or tastes  Hope to find pleasure 30) Living my life enjoyably  I hope to spend daily life gently. I hope to spend daily life not giving trouble to others.

Table 8 .
Narrative approach program for patients at home hospice by nurses.