What are the impacts and outcomes of illness from family and informal caregivers perspective? - Chapter 15

How can illness become a family affair?

Formal and informal care

The extent to which informal care is used varies from country to country, depending on the national system. Informal caregivers are often untrained family members or friends who do not have contractual hours, no clearly defined limits to their role and variable financial recompense. Approximately 70% of the recipients of care are older than 65 and therefore often have chronic diseases. Typical tasks of care include:

• Practical help.
• Emotional support.
• Help with arranging medical / care appointments.
• Management of paperwork or financial matters.
• Help with personal care tasks.
• Help with mobility.

The need for informal care is increasing since the health care system can no longer meet demand. It is estimated that three out of five people take care of a family member or friend at some point in their lives.

What are the demographic characteristics of informal caregivers?

Of all unpaid, non-professional caregivers, half to three quarters are women. The ages of these people are usually between 45 and 65. Most of these caregivers have to deal with someone with a chronic problem, such as dementia, mobility problems, and mental, emotional or neurological problems. With this branch of care, the economic benefit for society is paramount. The welfare of the carer usually receives less attention, while that is very important, also for the patient. If the patient receives good care, it also has a positive effect on the person who cares.

What is meant by expectancies of care?

Gendered expectancies

Gender bias in the role of caregiver can be the result of a higher life expectancy for women, as well as an expectation from society that care is a natural role for women, who are expected to get satisfaction from family-oriented roles. Women still dominate care statistics.

Culture and caregiving expectancies

There are cultural variations in aspects of socialism and in belief and value systems including familiarity and the obligations of respect, support and care for older family members. This is for example a core cultural expectation in Asia. In China, the expectations for care lie primarily on the eldest son.

The issue of willingness to care

The relationship between the potential caregiver and recipient and intrinsic motivation to care for as opposed to extrinsic motivation are crucial for the well-being of the caregiver. It is very important for the well-being to see possible gains in care. This also increases the chance that someone will eventually take on the role of caregiver. Giving support to each other can be seen as prosocial behavior, with characteristics of love, trust and altruism. Perhaps individuals who want to support others differ in their oxytocin levels. This raises the question whether we may be genetically prepared for the care role.

What do family systems and family members entail?

McCubbin and Patterson describe how pressure can disrupt or change a family system, with three stages in a continuum:

1. Stage of resistance: where family members try to deny or avoid the reality of what happened.
2. Stage of Restructuring: where family members begin to recognize reality and re-organize their lives around the change in the family.
3. Stage of consolidation: where newly adopted roles have become permanent. For example if recovery is not forthcoming and where new ways of thinking may emerge.

Rolland's Family-Systems Illness Model provides a more systemic view of disease and considers that a biopsychosocial model of disease must recognize the disease over time, and that all persons in a family influence the course of a disease and the well-being of someone. For this it is important to gain an understanding of how they, as a family, function together and what the expectations of care are. Three integrated dimensions of the family system have been emphasized by Olson and Stewart, cohesion, adaptation and communication, with evidence that families that are in balance with these factors have better adaptation in response to stressors, including illness.

Parents as caregivers

Different coping reactions have different influences on the functioning of a family. The use of active problem solving and less use of avoidance and passive responses is associated with less anxiety and depression from parents. Avoiding coping can be effective, but only just after diagnosis. Moreover, it seems that fathers are less eager to talk about their child's disease than mothers. Perhaps because fathers are more in the background in healthcare.

Spouses as caregivers

In the case of diseases that occur in middle age or among young elderly people, such as a stroke or Parkinson's, the primary caregiver will be the partner, who may also have health problems themselves. Among the elderly, many people, and especially women, are widows and so the care often comes down to an eldest daughter.

Children and adult children as caregivers

Children and young people (under 18) and middle-aged children run into specific things when they provide care that is atypical for a child-parent relationship. For example, it is not typical to help your parent with eating, getting dressed, or going to the bathroom. Not much is known about the long-term impact on childcare workers below eighteen. They probably lead in the academic and social field. Young caregivers often do not see themselves as caregivers, they do not always know that such behavior is not the norm. This makes it difficult to determine the prevalence. Caring for a parent requires a lot from a child, because it involves turning roles. Sons more often offer practical support than personal care or household support. However, this depends on the gender of the recipient, female caregivers feel more uncomfortable when they have to take care of their father.

What are supportive relationships?

The patient is dependent on supporting relationships for long-term care. The quality of these relationships play an important part in the recovery.

Other benefits of such relationships are:

• Better completion of treatment and self-care.
• Better emotional adjustment and handling stressful events.
• Better physiological functioning.
• Decreased mortality.
• Better marriage.

The protective effects of marriage on health and health outcomes have often been reported. It is not the absolute care that makes a difference, but especially the perceived quality and the supposed usefulness of it that benefits the patient.

Helpful and unhelpful caring

There are a number of aspects of care that have been found to be useful for patients with different diseases. Examples of these aspects are practical help, expressing love, understanding and concern. Consistency was also found in the actions that are not useful: pretending that the situation does not represent so much, acting excessively cheerfully, underestimating the effect of the disease on the patient and being critical or asking too much from the patient. People who found the help of their caregiver to be unhelpful or unpleasant were found to be less satisfied with themselves and their life partners, and show more signs of depression. The negative effect of non-useful care is proportionally greater than the positive effects of useful care. Patients who are too protected by the caregiver think they can handle less, have less self-confidence, and less motivation to recover. Women and men do not differ in their skills of providing care to their partner or in the amount of care they offer, but women are more responsive to the changing needs of their partners.

What are the consequences of caring for the caregiver?

• The emotional impact: research shows that at least three quarters of the people who care for someone have significant emotional problems. Their physical health and satisfaction with life also appear to be less. Caregivers also have depression more often than other people. The emotional problems are mainly found among female caregivers.
• The physical impact: research shows that the female partners of someone diagnosed with cancer have poorer health in the first six months after diagnosis. This effect has not (yet) been found in male partners and / or caregivers.
• The immunological impact: long-term care has often been shown to suppress the effectiveness of the immune system. For example, research shows that the life partners of someone with Alzheimer's are sick for more days a year than people in the control group. This effect of reduced resistance and the immune system working less is mainly found in older caregivers. For younger people who care for someone, the research results are less consistent. There are indications that the effects found on the immune system are related to the stress experienced by the caregiver.
• The positive effects of caring: although it may seem as if it is only having negative effects for yourself when you care for someone, luckily there are also many positive effects. When it comes to life partners, more 'quality time' is often spent together. At first there was no time to do something fun together, but as soon as someone is seriously ill, more time is taken for it and this is often also part of the care. This makes the relationship more intimate and closer. The caregiver often feels more useful and appreciated. Research should still be done into the combined effect of the positive and negative impact on caregivers.

What are the influences on the effect of care?

If the patient demands a lot from his caregiver or shows difficult behavior, it will have a greater impact on the caregiver than when the physical care is heavy. Depression among caregivers can mainly be predicted from the increase in negative characteristics of the patient. Other predictors are the patient's age and illness, the caregiver's feeling that he has a good relationship with the sick person and a change in living standards. All these determinants can change quickly and turn the total influence into a dynamic variable. When the negative traits of the sick person increase or get worse, depression predicts for the caregiver, and when the positive traits decrease, this makes the task harder for the caregiver.

The influence of caregiver characteristics and responses

• Ethnicity and culture: the benefits of caring for a partner or parent with dementia are greater in a sample of black caregivers than white caregivers. This may be due to a difference between cultures in the will to seek care within the family. Ethnicity is not the same as culture, and it is important that research into care recognizes that cultural identity can vary within people with shared ethnicity.
• Personality: Personality traits of caregivers such as optimism and neuroticism have direct effects on the mental health of the caregiver and indirect effects through the influence on perceived stress, and on the perceptions and appreciation of the level of defects of the care recipient. Resilience is a predictor of life satisfaction and good mental health, but does not predict negative mental health.
• Attachment: fearfully attached individuals are guided by attention to stress and focus on their own stress and needs, with a fear of being rejected by others because they are not good enough. This fear becomes stronger when the other person is completely swallowed up by his own situation, such as with illness. People with an avoidant attachment style are characterized by the tendency to separate their thoughts from their emotions, and to trust in themselves, which can cause emotional detachment from others. Illness in a loved one can lead to a certain distance. Securely attached adults are low in fear and avoidance, preoccupied adults are high in fear but low in avoidance, anxiously avoiding individuals are high in both fear and avoidance, and dismissing avoidant individuals are low in fear but high in avoidance. For men, finding meaning in care is associated with low avoidance of attachment, while for women it is positively associated with having social support.
• Valuation of caregivers: the underlying source of caregiver stress is due to the subjective valuation of an imbalance between the care requirements and the resources available to the caregiver. The self-efficacy of the caregiver has a significant influence on emotional outcomes and perceptions of burden. Self-efficacy consists of four factors: managing medical information, taking care of the recipient of care, taking care of yourself, managing difficult interactions and emotions. Perceptions of the disease itself also play a role, a chronic illness leads to more stress for the caregiver.
• Social support: the use of social support as a coping strategy is an important predictor for outcomes of the caregiver. It is also important to have a history of support, even if the current support is less good.
• Protection as a buffer: Partners deny or conceal negative information, thoughts or feelings for their partner to protect them, but with this they can increase their own stress. High levels of 'protective buffering' are associated with low levels of satisfaction with the relationship.

The relationship between the caregiver and the patient

The quality of relationships: Illness can cause a stress spill-over effect by contributing to existing challenges in marriage and introducing further opportunities for conflict. The quality of a relationship can moderate the effects of individual coping. The quality of relationships also interacts with motivations to start and continue to deliver care.

Couple identity

The extent to which a healthy partner regards his or her relationship with the partner's illness as part of the self-concept partly mediates the effects of tension, challenge in the relationship, and loss of independence on mental health scores.

Dyadic perceptions, shared and discrepant beliefs

Disease representations of identity, timeline, causes, consequences and control / cure can differ between patients, caregivers and significant others. Relationships with shared positive perceptions do better in terms of lower disabilities, fewer sexual difficulties, less health-related stress, better vitality and better general adaptation than relationships with negative or conflicting perceptions. More personal control is moderately associated with lower levels of stress for both the patient and partner. Patients and partners who received more support from the partner reported less stress over time, but only if they had little personal control. More longitudinal research is needed to better investigate causal relationships.

It seems that both the type of relationship and the quality of the relationship play a role in the caregiver's and patient's experience, the beliefs within the relationship about the disease, and the coping strategies that are used, all contribute.