Table 1 Classification of difficulties according to the Jiro Kawakita method

1. Difficulty in performing activities of daily living

Outpatient examinations and regular hospital visits

(α = .847)

Going out and transportation methods (including the use of public transportation systems)

Taking care of myself (e.g., eating, bathing, toileting, and dressing)

Household chores (e.g., house cleaning, laundry, meal preparation, and grocery shopping)

Sex life

Your disease and treatment have made hobbies, pastimes, and social activities less enjoyable.

2. Difficulty in seeking expert advice on the disease state and treatment

Admission to, discharge from, and transfer from a hospital

(α = .909)

Consulting a specialist other than your attending physician about your disease state and treatment

You and your family cannot receive necessary psychological counseling.

In case of sudden deterioration of your physical condition, there is no guarantee that you can immediately consult any doctors at the hospital where you are currently treated (or your neighborhood hospitals or clinics).

Neither you nor your family have any primary care physicians at hospitals or clinics whom you can consult whenever necessary.

Selection of a hospital (or a physician) that will provide treatment and examinations to you

3. Complaints with health care providers

Health care providers (e.g., physicians and nurses) do not promptly deal with your physical problems.

(α = .932)

Health care providers do not recognize your emotional problems or show any concern.

Health care providers (e.g., your attending physician, physicians at other departments, your primary care physician, and nurses) do not sufficiently communicate with each other to arrange your treatment and care.

Before you choose treatment, health care providers do not sufficiently explain the beneficial and adverse effects of each treatment strategy.

Health care providers do not sufficiently explain the policy or plan of future treatment.

You cannot talk frankly with your attending physician.

4. Lack of information on treatment and disease state

You cannot obtain enough information on the methods and contents of tests.

(α = .937)

You do not know how to collect information on the treatment of your disease.

You cannot obtain enough information on various treatment methods.

You cannot obtain enough information on complementary and alternative medicine (methods that are not regarded as standard treatment at present, such as health food, hot springs, and Qigong).

You cannot obtain enough information on palliative medicine and care that alleviates pain and distress.

You cannot obtain enough information on your current disease state and prognosis.

You cannot obtain enough information on how to treat adverse effects of treatment that you receive and symptoms of your disease.

5. Lack of information on self-care

You cannot obtain enough information on what to keep an eye on in future life.

(α = .909)

You cannot obtain enough information on appropriate nutrition and dietary patterns.

You cannot obtain enough information on how to deal with anxiety and depression.

6. Conflict over family relationships

Your family do not understand your disease or treatment well and sufficiently cooperate with you.

(α = .898)

Your views on your disease and treatment differ from the views of your family.

Talking with your family about your disease

Relationship and communication with your spouse

7. Concerns for family members

Care of your family (e.g., care of your parents, child-rearing, and nursing by your spouse)

(α = .897)

Burden on your family

You cannot sufficiently take care of anxiety or concerns that your family have.

Support offered to your family (e.g., help from people around you or public services) is insufficient.

You cannot sufficiently perform your role at home.

Your family are overly worried about you.

8. Difficulty in planning life

Planning future life of you and your family

(α = .594)

Developing your plans for marriage, pregnancy, and delivery

9. Conflict over relationships with non-family members

Relationships and communication with your friends and people close to you

(α = .902)

Relationships and communication with your neighbors

Talking about your disease with people at work or in other social occasions

10. Difficulty in adapting to changes in the social environment

You have been discriminated because of your disease.

(α = .804)

The attitudes of people around you have changed after the onset of your disease.

Your looks (appearance) have changed.

11. Lack of local support services

You do not have any opportunity to talk with people with similar experiences.

(α = .902)

You are lonely.

You do not have anyone with whom you can consult or have access to services that offer consultation for the disease and medical care.

12. Difficulty in solving work-related issues

It is difficult to return to and continue work (or study if you are a student).

(α = .892)

It is difficult to take a day off from work (or school if you are a student) for treatment.

Your disease has adversely affected your promotion at work.

You have been demoted or transferred to an unimportant position at work.

You have been asked to retire or fired at work (In case of being self-employed, you have closed your business).

13. Difficulty in making financial arrangements

Medical and living expenses during treatment

(α = .824)

The use of financial services (e.g., loan, medical insurance, and life insurance)

Management of the properties of yours and your family

14. Lack of information on welfare services available during treatment

You cannot obtain enough information on available welfare services and systems (e.g., nursing-care insurance and welfare services for people with disabilities).

(α = .925)

You cannot obtain enough information on available home-based medical care services (e.g., home-visit medical treatment and nursing).

You cannot obtain enough information on support for your medical care (e.g., wig, elastic stocking, wheelchair, and special bed).