Margaret Fitch RN PhD

Toronto, Canada

Family DynamicsAssessment and Intervention

Greetings from Canada

• Define family functions, dynamics and characteristics

• Review family centered care concepts

• Discuss impact of illness on families

• Discuss assessment of family function/dynamics

• Discuss nursing role regarding family care

Plan for session

• Essentially social entities

• Born of a relationship and into a relationship

• Requires that relationship for nurture/sustenance and survival

• Family is our first exposure to a social system with human communication and behavior

Human beings

• Basic social unit

• Represents people living together by ties of marriage, blood, or adaptation, thus creating a single household

• Has the primary function of reproducing society –biologically, socially or both

• A web of interrelated/interdependent relationships with coherent behaviors and regular interactions; a system

Family: primary relationship network

• System tries to be in its own balance.

• Some systems are healthy (functional) while others are unhealthy (dysfunctional).

• Families have rules – spoken and unspoken.

• Each person has a role to play within the system.

• Each system includes boundaries – some are open and some are closed.

• There are different types of connections between individuals within the system.

Family Systems Theory

• Is a small social system

• Has its own cultural values and rules

• Has structure

• Performs certain basic functions

• Moves through stages of a life cycle

• Performs tasks are each stage in order to grow and develop as an entity

Family…universals

• Consensual

• High communication, high conformity

• Pluralistic

• High communication, low conformity

• Protective

• Low communication, high conformity

• Laissez-faire

• Low communication, low conformity

Communication in the family

• Shek, 2001

• Reported Chinese families emphasized• Harmony in family and social relationships

• Hierarchical structures

• Face saving

• Happy families embraced absence of conflict, interdependent harmony, mutuality, connectedness and positive parent-child relationships

• Contrasted to Western families who were more apt to emphasize• Open communication

• Emotional expression

Family behavior as a function of culture

• Mutuality – mutual support for family members

• Communication and cohesiveness – family members talk together, few barrier among them

• Conflict and harmony – frequent fighting among family members

• Parental concern – parents love of their children

• Parental control – parental control too harsh

Shek 2001

C-Family Assessment Index - Dimensions

• Trust one another

• Share a sense of humor

• Hold a sense of shared and individual responsibility

• Help children understand right from wrong

• Believe in upholding family traditions

• Hold a sense of hopefulness

• Adapt to change/are flexible

• Enjoy each others company

Strong families

Characteristic Healthy (functional) family Unhealthy (dysfunctional family)

Communication Clear understandable messages between family members

Each member is encouraged to express individual feelings

and thoughts

One or more family members use unhealthy behaviors:

-blaming

-manipulating

-placating

-distracting

Management Adults of family agree on important issues:

-rule making

-finances

-plans for the future

Management may be chaotic

-Child making management decisions at times

Boundaries Distinguishable boundaries between family roles

Clear boundaries defined for each member

Boundaries are clearly understood by all

Each member can function appropriately

Enmeshed boundaries

-Thoughts/roles/feelings are so blended that individuals

are unclear

Rigid boundaries

-rules and roles are inflexible

-family tends to have isolated members

Socialization All members interact/plan/adopt healthy ways of coping

Children learn to function as family and society members

Members can change as the family grows and matures

Children do not learn healthy socialization skills within

the family

Have difficulty adapting to socialization roles in the

community

Emotional –

Supportive

Emotional and social needs of family members are met

most of the time

Members are concerned about each other

Conflict and anger do not dominate

Negative emotions predominate most of the time

Members are isolated and afraid

-Do not show concern to one another

• Smaller family sizes

• Increased number of women in the workforce

• Increased number of non-traditional family constellations

• Movement of younger family members to urban settings/other countries

• Increasing costs of health care have led to reduced hospital stays

• Coverage for community health care/home care services is stretched

Societal trends – more family caregivers

• No two individuals react the same way; each is unique

• The reaction is based on cognitive appraisal (how we see the situation)

• We ask ourselves what is at stake and what are the resources we have to deal with the potential demand in the situation

• If our resources exceed what we believe we need to deal with the situation, we feel “stress”

Coping with stressful life events

• We turn first to family and friends

• Family and friends provide social support; network of support/assistance (emotional and practical)

• Offer a buffer against stress – a ‘shock absorber’

• Their support, in large measure, influences an individual’s capacity to cope with a stressful event

• But family/friends have own reactions and responses to the crisis

• Capacity to support depends on personal capabilities and resources of family/friends

In times of crisis…

• Many family members have similar reactions to those of the patients themselves

• Those who become caregivers often report higher anxiety and depression than the patients

• Chronic and long term illness takes a toll on the caregivers who can feel an increased sense of burden, poor quality of life, and lost productivity

Impact of illness on family members

• You know, when I look back at that time before we had the diagnosis, when we knew there was a hard spot but she had not seen the doctor, I was so angry with her. Why didn’t she go – get it checked out? I just knew something was wrong but she didn’t make the appointment for ages. I kept asking her about it. (Partner)

Prior to diagnosis

• I can remember waking up at night and thinking about all the possibilities. What if it was cancer? what would that mean? Would she die right away? Who would take care of the children? What would I do? But then, not wanting to think about any of that and not wanting to upset her any more, so I didn’t say anything. I didn’t tell anyone at work. And we didn’t say anything at all to the kids.

Waiting for results

• I think the biggest thing that the spouse has to deal with is the mental well-being of his wife. The mental strain that it puts on her, gets put on me…What do I say? What do I do for her? What is the best thing? How do I support her? It’s hard enough for me, but it’s worse for her.

Waiting for results

• It was devastating. I felt so helpless in that there was nothing I could do. I knew a lot about breast cancer from what I saw in the media. And at first I thought she was going to die. That is what you often see in the media. And for a while I was quite depressed…It took a while, but I started feeling better eventually.

Diagnosis

• It was unreal. I was just in shock…I was pretty naïve then, too. I mean, the only thing I could think about was that he will survive. If I knew then what I know now, my emotional state would have been a lot worse.

Diagnosis

• Cancer is a scary word. I really did not know much about it then. I did not understand about prognosis or what that meant. I’d say this is the worst thing I’ve ever gone through, all the unknowns…it is like a bad dream.

Diagnosis

• There is a feeling of helplessness about it all. It’s sort of like childbirth – similar to it. You sit on the sidelines and really there is nothing much you can do…there is nothing you can give up that will make a difference.

Diagnosis

• “….I came to my own conclusion about what stage 4 meant. You know nobody really explained what (might) we need? What to expect? What’s coming next? I feel like we got none of that information at all…” (daughter)

• “We were both desperate to know, I mean you can never know I guess, right? But desperate to… I was constantly going to the website and seeing, ok, now this is happening, now does that mean it is in a worse stage? Like how much time do you have when you are in stage four, yeah definitely trying to figure out what to plan for…” (husband)

Need for information

• Wife:

• He got so that he could hardly swallow anything. The pain was just so bad. I have to really encourage him and keep reminding him to try to drink. And I would put extra calorie things in the drink for him.

• Husband:

• If it had not been for her I probably would have given up. There was so much pain I did not want to swallow at all. But she keep after me and saying to drink, to try. She would just sit there and keep at me.

On treatment

• The nurse told us up front that my wife would have good days and she would have bad days. Right after her chemo she’d have a few bad days. Then she’d start to feel a little better. And that would continue until her next dose…so we organized around that. I took a day off work or her Mom would come over on the bad days and got the kids ready for school and looked after. When she could do that herself, then she did.

On treatment

• I had to put up all the slack quite literally. I had to do more and more chores as she did not have the energy. It really cut into my sleep time and I got more and more exhausted…I really got tired answering all the questions about how she was doing. Only one person asked about me and how I was doing.

On treatment

• My husband and I go through stages…it’s sort of like a roller-coaster where at times little stuff doesn’t matter; you know, all those trivial little fights. We didn’t fight for a long time after my diagnosis, because who cares if you pick up your clothes off the floor?...because we are in love and we have each other, and we don’t know how long that will last, and that kind of stuff.

• And we go from that to being under so much stress because of it and feeling so much fear, that we are at each other’s throat. You know, just feeling really stressed out about stuff. And sometimes not wanting to tell each other how fearful we are. He does not want to pull me down and upset me about his fears and what’s going on in his head. Yet being really stressed and you get into arguments all the time. So it’s put a lot of stress on our relationship. But it’s also brought us closer together at the same time.

On treatment

• Really, right now I am not dealing very well with it all. Her moods and reactions are really wearing me down. I can deal with the disease. But I am having extreme difficulty dealing with her. I can understand her frustrations, but I wish she wouldn’t take them out on me. I really wonder how long I can continue. Her attitude has pushed me to the limits. And sex is zero, too. I don’t think it will ever return.

Survivorship

• We are really a lot closer now than ever before. We talk a lot more. Really, you don’t realize how important someone is until you wind up potentially losing her. It makes you reassess your priorities, what you are doing with you life and what’s important to you. I was shocked at the scar in the beginning and sex is a little different now…but you adjust. You get used to it…it is better than the alternative.

After treatment

• Death is more difficult to talk about now because of the way the treatments and everything has gone; things have not gone well. Death is a real possibility now. It is closer than before.

Advanced disease

• We talked about him leaving, that the best friendship is over and will be breaking up. We talked about our child and how he will not have a father any more. It’s so hard. I hardly want to talk about it.

Advanced disease

• …there were times that, I mean, literally, we just, we wouldn’t go to sleep. And we were all so sleep deprived that it was like, wow, if I could just go to my brother’s house and sleep for 12 hours I would feel much better…you know, it actually got to be a concern that, you know, we were forgetting. You know, did somebody already give mom the pain medication or did you?… and like we were all so tired we couldn’t remember anymore. And you know, we were trying to keep a log of everything… …And I could see the fatigue on my father’s face, and the fatigue on my sister-in-law’s face. And I guess I looked like death as well…we were living for medical appointments and trying to recover from one hurdle to the next…she didn’t have any quality of life.

Caregiver burden

• When my mom was getting sicker, I was kind of waiting for them to say “Gee, how are you managing at home?” Like, my mom was living at home with my dad and my sister. We were all doing so much of the care, and my father in his seventies; he was not old, but wasn’t young.

• And I felt I often had to take the ball in my own hands, and sort of say “Gee, like isn’t there any, um, seat we can put on the toilet, like a toiletvator or whatever, or a shower chair, or a bedrail to help my Mom?”

• Because you want her to have independence, but you could see everybody was getting exhausted. And I know this service exists, because of my profession, but nobody was offering these kinds of things to us.”

Daughter or health care professional?

• “…you’re filled with guilt no matter what you do, you know, you’ve done too much, you haven’t done enough, did you do the right thing, did you say the right thing… you’re always questioning yourself. And although I felt positive about, you know, what I did for [loved one], and I know she appreciated it, but you just always feel so stressed and so guilty.” You know, I wish I could’ve done more. I felt so bad that I wasn’t able to be there for her. I felt like I was abandoning her kind of, you know, she didn’t think that, but that is what goes through your head. It’s that, “oh, I’m working and I have to work; if I didn’t have to work she could, I could stay home and she could be here.”

Advanced disease

• “...I just felt all along that our family would have been nurtured a little differently at a palliative care setting than were we were in emergency….Additionally …I think that had [my mother] been in palliative care, I would have been able to get more information about the process of dying…”

Advanced disease

• I look back and I missed her desperately at first. I could hardly stay alone at night in the house . There were just so many memories. I really never thought that she would die. But now it is a little better. I still think I will sell the house. There is just too much of her here to be around every day.

•

Grieving the loss

• You know, cancer is such a terrible disease, really. You are watching the disease take over, watching the body being destroyed, watching the person you love being destroyed. It is almost unbearable. So when it’s over there is some relief in some ways for everyone.

Grieving the loss

Developmental meaning of deathAge Concept of death Impact of death

2 - 5 years Self-centered with no concept Death – separation; need deprivation causes

distress

5 – 9 years Temporary and concrete May express little distress or fear of not being

loved

9 – 12 years Concrete and logical but unable

to grasp cause and effect;

magical thinking

May become anxious or avoid talk about death;

fear of punishment or bodily harm to self

12 – 18 years Abstract and realistic concept;

able to anticipate and predict

Threat to independence; fear of being different

from peers; may act out with anger, aggressive

behavior, drugs or alcohol

18 - 25 years Abstract and realistic Death – complex with disruption in lifestyle and

separation from peers

25 – 45 years Abstract and realistic Death = complex with disruption of family

unit/roles; threat to history and future

45 – 65 years Abstract and realistic Death = complex with disruption of productivity in

family/work

65 years - death Philosophical Death = complex with separation from support

networks

Pattern of Depression & Anxiety

47

Distress Assessment

48

• Determine if emotional distress is the most urgent symptom to be assessed

• Awareness of the risk, as well as resilience factors will aid in identifying patients who would most benefit from early intervention.

Assessing Severity of Anxiety

49

Diagnosis of depression

Over the past two weeks1. *Little interest or pleasure doing things

2. *Feeling down, depressed, or hopeless all the time

3. Insomnia, early-morning wakefulness, or sleeping too much

4. Fatigue

5. Poor appetite or over eating

6. Feeling guilty, worthless, and helpless

7. Trouble concentrating, making decisions

8. Moving slowly or Irritable, restless

9. Thoughts that one would be better off dead

Diagnosis of major depression: at least five of the nine symptoms have been present for at least two weeks, and one of these must be either low mood or loss of interests.

50

Assessing Severity of Depression

51

Factors influencing how individuals and families cope with death (or impending death)

Factor Examples

Nature and meaning of death Change to anticipate the death

Circumstances of the death (e.g., type, mode, timing , suffering)

Threat of survival

Disruption resulting from the death and related losses

Past experiences with loss

Other stressors and accompanying losses (e.g., role, identify)

Relationship to what is lost/deceased

Personal and family characteristics Age

Development level

Sex

Cultural and religious beliefs and traditions

Family rules and roles

Communication style

Flexibility

Coping skills in resolving loss

Resources to cope with the death Social network size and characteristics

Availability of support

Perception of support

Use of network and supports

• Patient centered/person-centered care

• Family centered care

• Relationship centered care

• Transpersonal caring

• Transitional care

Emerging concepts in health care

• Dignity – respect

• Collaboration

• Information sharing

• Participation in care decisions

• Strength-based

• Choices

• Communication

• Partnerships

Principles of family-centered care

• Space – to facilitate family-centered care (interactions)

• Specialty-based patient/family advisory boards/committees

• Appoint patient/family advisors to hospital/agency quality committees

• Communication between staff and patients and family members

• Strategies for sharing information with patients and family members in order to support informed decision-making about care

Achieving family-centered care

• Family assessment:

• a process of gathering and organizing information in order to prevent and solve problems

• aim to achieve a full understanding and unbiased view of family strengths, values, and goals, as well as problems.

Focus on assessment

Factor 1: Positive family functioning

• 1. Family members give emotional support to each other

• 2. Family members love each other .

• 4. Family members take care of each other .

• 5. Family member have acceptance toward each other

• 9. Family members are united .

• 17. Family members have good relationships .

• 21. Family members trust each other .

• 24. In general, I give my best when caring for my child

Factor 2: Negative family functioning (conflict)

• 13. Family members are constantly fighting .

• 16. There is no bond between family members .

• 23. In general, I don’t care for my child .

Factor 3: Tolerance among family members

• 18. Family members are willing to tolerate each

• other

• 19. Family members are patient with each other .

• 20. Family members are willing to give way/ tolerate each other

Factor 4: Parent understanding

• 25. In general, I know what my child needs .

• 26. In general, I am able to understand my child’s thoughts

• 27. In general, my child and I are able to share our thoughts with each other

• 28. In general, I am able to discuss with my child, his/her problems and ways to solve them

Chinese version –Family Assessment Index

• Work

• Finance

• Personal

• Help around the house

• Help for caregiving from others

• Help in everyday life

• Help in personal care

• Socializing

• Psychological

• Emotional distress

• Spiritual

• Worries about the future

• Finding the positive

• Information in general• Information on who to contact • Understandable/up to date information • Information for partners • Information on disease and treatment • Patient symptom management/experience • Involved in decision making/patient care • Health care professionals • Health services/availability • Support services • Practical/Instrumental support • Relationships • Caregiver role • Communication with family and friends

Review: needs assessment tools for informal caregivers – Prue et al., 2015

• Neglect• Facing inaccessibility

• Disinterest

• Discontinuity of relations

• Negligence in tailoring care and information

• Lack of respect• Perception that patients are being purposely disregarded

• Insensitive approaches to patient and family members

• Noncompliance with agreements

• Violations of privacy

Family experiences associated with low satisfactions with care (bolt et al, 2019)

• Unrealistic expectations and erroneous assumptions about outcomes acceptable to patients are drivers of misguided and goal discordant medical treatment(s)

What is needed is:

• Compassionate sharing of accurate/honest information

• Inclusion of all types of outcomes (crucial to helping patients and families know what to expect)

• Skilled communication and shared decision-making to ensure alignment with realistic and attainable goals of care

• Attention to all types of symptoms – physical, psychosocial, spiritual

• Understand what to expect

• Know what to do to comfort loved one

• Know what choices are available

• Know what supports/resources are available and how to reach them

• Be clear about what the patient wants/preferences

• Help communicate patient wishes/preferences

• Recognize own feelings, thoughts and wishes

• Have clarity about own role

Family member needs

• Improved communication with patient

• Advanced directives/living will

• Leaving a legacy

• Saying ‘good-bye’

• Examining caregiver role (feelings, ‘ups and downs’)

• Preparation for final days

Focused topics

• Emotional reactions to caregiving role

• Perceptions of relationships with staff

• Perception of care to relations

‘Family involvement’ outcomes (Maas et al 2004)

Questions or Comments?