This article is part of a special series focusing on common challenges faced by Australian families.

Other articles in this series include:

1. Challenges of Single-parent Families Due to Death or Separation
2. Challenges of Same-Sex Couple Families
3. Challenges of Blended and Step “Remarried” Families
4. Challenges of Families Who Experience Domestic Violence
5. Challenges of Families with a Parent Working Away From Home Base

Note: Refer to the first article in the series for further information about the family functions.

Have you ever experienced anyone in your family becoming seriously ill or disabled? Chances are that it was a difficult time for you. When a family member is stricken with a physical injury, illness or disability, the ramifications of that change go far beyond the physical, often causing deep-level re-alignment of membership roles, responsibilities, and expectations as the family deals with the present while attempting to adapt to a very different future than the one they had envisioned.

In terms of the functions that the family should fulfil, we can see that Function One, to do with family membership, is “front and centre” when we are talking about possible role changes. A breadwinning man, for example, may be called upon to play nursemaid, give regular shots and medications to his sick wife. Even with the best health insurance in the world and certainly without it, Function Two (economic support) may be weakened, as the family responds to the need to purchase myriad medications, supportive devices (such as wheelchairs, breathing apparatus, or prosthetic limbs). Costly lifestyle changes, such as remodelling a home to enable wheel chair access, might also be on the cards, as well as reduced income, for either the sick person or their caregiver.

The adaptations needed in order for Function Three (nurturance, education, and socialisation) may be more subtle, but are strongly in evidence. Many are the children who grew up feeling that their needs were not important because there was a chronically ill or injured sibling who received all the attention. Children who take over domestic responsibilities beyond their normal life-stage – for example, the pre-teen girl who takes up all the cooking responsibilities for the family because her mother is chronically ill – are also examples of Function Three changes in how members may become socialised (or, re-socialised).

Finally, Function Four (protection of the vulnerable) is deeply jeopardised by illness and injury. The resourcefulness of the family is most greatly challenged in attempting to protect a sick or injured – and thus hugely vulnerable – member from the threats that would befall that member without special effort on the part of the other members.

In order to understand the interwoven threads of demand made on a family by the illness/ injury challenge, we work with the framework of Carter and McGoldrick (2005), which considers the following variables:

1. Onset (how the illness or injury came on)
2. Course of the illness/injury
3. Likely outcome
4. Type and degree of disability
5. Consequent level of uncertainty

Onset

Illnesses can have either an acute onset, such as a stroke or heart attack, or gradual onset, such as with Alzheimer’s or multiple sclerosis. When the onset is acute, family changes are compressed into a very short period of time, whereas gradual onset allows for a lengthier period of adjustment. Those families whose members can show flexibility, efficient problem-solving, and capacity for resourcefulness are liable to do much better in acute onset illnesses.

Course

Chronic diseases and some injuries can progress in one of three general types of course: progressive, constant, or relapsing/episodic. In the case of progressive illness, such as in the case of neurological degenerative diseases or untreatable cancers, the family is faced with a member whose symptoms get worse over time in a gradual way. The family in these cases must deal with constant role adaptation – often without relief – as the disease progresses. Caregiver strain becomes caregiver exhaustion and then burnout. Flexible families, willing to adapt to different roles within the family but also use external resources, do better. With the constant type of illness course, the initial event (such as a brain or spinal cord injury) may be followed by recovery and then a chronic phase which includes the new, usually clear-cut limitation. The spinal cord patient, for example, can no longer walk, or the brain-injured person may not be able to cook, drive, or resume his former work.

In this scenario, family members still become exhausted with the care of the injured/ill person, but because the course of the disease is relatively stable and predictable, there are not so many new demands for role adaptation placed on the families. Relapsing illnesses/injuries have periods of low-level symptoms, interspersed with “flare-ups”. An example of this may be joint problems, asthma, or a tendency to migraines. These types of illnesses probably require the least permanent changing of roles within the family, but they do demand that families be able to move flexibly back and forth between “crisis” and “non-crisis” mode. Not knowing when the member will be functioning normally and when they will be in “flare-up” mode heightens the uncertainty, and thus the stress, of such an illness or injury.

Outcome

With the variable of outcome, we see a heightened potential for the family to respond maladaptively. If the illness or injury is one that does not affect the life span, such as allergies or arthritis, the changes required by healthy family members may not be great. But when the prognosis is for a much shorter life span, such as with metastatic cancers, the family is challenged to deal in a balanced perspective with its anticipation of loss. People may swing between desiring to be close to the sick person and feeling the urge to let go emotionally. At its most extreme, this latter attitude can result in family members seeing the unwell person as “one foot in the grave” already. They may then attempt to relieve the sick member of responsibilities which they have had (and may still be capable of performing), resulting in isolating and alienating the ill person. Sadly, this dynamic has been correlated in studies with poor medical outcomes (Campbell and Patterson, 1995).

Another maladaptive outcome is that, in cases where death is less imminent or certain, families can move to become highly protective of the symptomatic person, which also can have the unexpected outcome of causing the ill person to use that protective attitude for his/her own short-term benefit (i.e., manipulatively). An example of this might be a young girl born with, say, a lung disease such as cystic fibrosis. The family may move heaven and earth to protect and care for the girl in her vulnerability, and her response may be to learn that she is a “little princess” whose every wish is the rest of the family’s command; a narcissistic sense of entitlement in the girl may not be far behind.

Degree of disability or incapacitation

A person can become disabled through impairment of cognition (such as with Alzheimer’s or brain injury), sensation (becoming, say, blind or deaf), movement (as with a stroke or spinal cord injury paralysis), stamina (such as with heart disease), disfigurement (as with burn cases), or situations associated with social stigma (such as sexually-transmitted diseases). A person who has suddenly limited use of both cognitive and motor capacities will cause more stress in the family – and greater need for the family to re-allocate roles – than a person has motor disability (say, with a broken leg or spinal cord injury), but whose cognitive capacities have remained unchanged. In cases where the disability will become worse over time, such as with Alzheimer’s or other cases of dementia, the family has more time to adjust to changes that will be needed, and the unwell or injured person has more opportunity to be part of the family planning for them.

Uncertainty

When the pace or way of the unfolding disease/injury is not yet clear, families need to live with uncertainty. The challenge for family membership here is to sustain hope without being overcome by anticipatory anxiety. They must deal with the present, and continue to plan for the future, albeit an uncertain one. This demands of members a disidentified stance, one in which members retain their positive vision for the future while acknowledging that it may not come to pass. The resilient family holds a point of tension between many competing views (paradigms) about the person and their illness. For instance, it is crucial to continue extending support and protection (Functions Two and Four), but it is important not to see the sick person as already dead. It is beneficial to hold positive expectations for the healing that may be achieved, but damage may be done when they are unrealistic, as the sick or injured person may struggle under the weight of the expectations, feeling resentful. The member(s) holding them may feel disappointed. Impatience, intolerance, and conflict may ensue.

Phases of illness. Understanding what illness or injury means for the family also requires understanding the different tasks required from the family at different stages. We can divide the timeline of an illness or injury into the crisis, chronic, and terminal phase. The crisis phase occurs from the time of the member being symptomatic through diagnosis and initial treatment. This period of adjustment for family members is characterised by needing to engage practical, illness-related tasks, such as coping with any symptoms or disability, adapting to treatments and to the health care system, and setting up good relationships with the health care team. Most importantly here, families must find meaning in the illness/injury: that is, create a “story” about it which maximises their sense of competence and mastery. This involves acknowledging the illness as permanent while retaining a sense of hope, coping with the immediate crisis while looking to the future: a future for which hopes and dreams may need to be re-visioned.

The chronic phase (between initial diagnosis/treatment and the potential third, terminal, phase) is the “long-haul” stage, the “day-to-day” living with the problem. The key task for family formation here is to live a “normal” life – albeit one marked by heightened uncertainty. Especially in cases where the disease is fatal, the family has to learn how to live in limbo without being undone by it. When the illness is not clearly fatal, the family faces the exhausting struggle to “keep on keeping on” without any end or relief in sight, and the symptoms may be worsening throughout that time. Members may feel trapped, and sense that their only escape to normalcy will be after the sick person’s death.

At the terminal phase, death becomes inevitable, and the family must deal with issues of separation, death, mourning, and returning to “regular life” after the loss. The illusion of being able to control things no longer holds, and families need to learn to let go. Those families who cope best with this phase have taken advantage of the opportunity to share precious time among the members, acknowledge the imminent loss, deal with unresolved issues, and say goodbye. Especially in cases where there may not be a chance later on to say things or to be involved in planning (such as with dementia or with the potentially sudden death of heart disease), wise families involve the ill person in discussions and planning (such as preferences for where to die and wishes about funeral or memorial services) early in this phase (framework adapted from Carter & McGoldrick, 2005).

Illness/injury variables and the functions of the family

Let us take a moment to integrate this discussion of illness/injury variables and phases of illness with the way in which the onset of chronic disease forces changes in family functioning. Let’s say a parent – either mom or dad – develops a chronic disease when they are still in the childrearing phase of their family formation and development. The family’s capacity to stay “safe”, doing what it is supposed to do, is most severely taxed. Now instead of, say, Mum, Dad, and two kids, the family effectively has (in the case of the male parent having the disease), Mum and three kids. Especially in the case of serious conditions, the parent’s needs compete with those of the real children, and potentially scarce resources will be stretched. Further, as the other parent (the mother, in this scenario) attends to caregiving as well as childrearing, her presence and effectiveness is diminished. Now we are seriously into role-changing territory for the family, as other family members (possibly older children) are recruited to domestic tasks that they would not have needed to do beforehand, and which may be inappropriate for their age or level of development. The children’s developmental needs may be strongly compromised in order to maintain the household with priority needing to go to the sick parent.

When the illness happens to a young adult who has just been leaving home (the “launching” phase of the life cycle), it may mean that that young person needs to return to the family home in order to receive the necessary care. This may set up a long period of dependency in which each family member’s autonomy is at risk. Obviously, the young adult’s ability to set up an independent life outside the family of origin is threatened. But so, too, is the ability of the parents to pursue interests outside the family that they may have begun to develop when that child left home. More adaptable families will cope with this, returning to appropriate developmental tasks (i.e., forming an independent life for the child and developing post-child-rearing interests for the parents), but families who are dysfunctional or minimally functional may prolong this period, failing to return to the pre-illness tasks that they were undertaking, because reverting to the known roles of childrearing seems “safe”. This dynamic would tend to delay the recovery of the child.

Finally, there is the example of situations where the onset of illness forces families to “go against the grain” of transition or maintenance. For example, let’s say a family has just been through a period of major transition but come to a place of relative maintenance (stability) with their adult daughter leaving home, getting married, and setting up her own family. If it is at that stage that one of the parents becomes ill and the daughter is deemed to be needed back with the family taking care of the parent, then going into a period of transition to accommodate this change is difficult and possibly counterproductive. It would be more natural if the daughter’s caregiving were to have occurred earlier, as she was just coming into a period of transition.

“Safe” families try not to sacrifice developmental needs

When facing illness and disability, families should try to deal with the demands of the illness without forcing their members to sacrifice their own developmental needs, or the needs of the family as a system. When illness or disability forces families to change formation and take up different roles vis-a-vis one another, it is important to check whose life plans were thrown into disarray or totally scuttled in order to deal with the illness. Observant support people can minimise family strain and off-balance relationships between caregiver and sick person by helping families to strike a healthy balance between caring for an ill person and pursuing their own dreams (Carter and McGoldrick, 2005).

This article was adapted from AIPC’s MHSS Specialty Course “Supporting Challenged Families”. For more information, visit www.mhss.net.au.

References

• Campbell, T.L., & Patterson, J.M. (1995). The effectiveness of family interventions in the treatment of physical illness. Journal of marital and family therapy, 21(4), 545 – 583. Retrieved on 27 June, 2012, from: hyperlink.
• Carter, B., and McGoldrick, M. (2005). The expanded family life cycle: Individual, family, and social perspectives (third edition). Boston, Massachusetts: Allyn and Bacon.