Family: Their Role and Impact on Pain Management
How clinicians can counsel and guide both the patient and the caregiver through chronic pain.
By David Cosio, PhD, ABPP Pages 18-22
In the United States, approximately 100 million people suffer from chronic pain, and about 43% of households have at least one family member living with chronic pain.1,2 The effects of chronic pain are not independent to the patient, but also extend to their family and significant other. Intractable pain can demoralize and depress both the patient and their at-home caregivers, especially when there is no effective pain control or hope for relief.3 Conversely, there is an equally profound effect of family responses on their loved one’s pain,4 and family dynamics may contribute to the exacerbation or recovery of pain.5
There are two dimensions of life with chronic pain:
the loved one whose pain is invisible, and who may:
- fluctuate activity levels
- have unpredictable mood swings
- show signs of depression
- isolate themselves.
and the family who is unable to see the pain, and who may:
- take on more responsibility
- feel stressed, powerless, guilty, and/or anxious
- withdraw plans (for medical appointments or work disability evaluations)
- deal with emotional outbursts from the patient
- feel alienated.6,7
Thus, it is important for frontline practitioners to not only consider the person who is suffering in front of them, but also the people standing behind them who may need their own support and education about pain management.
The Spiraling Effects of Chronic Pain
Chronic pain may negatively impact the family system by intruding on every aspect of life, leading to significant consequences.2 For example, there may be a loss of sexual expression and intimacy in couples, which may lead to separation and divorce. There may be social isolation which then perpetuates further attention-seeking within the healthcare system.
Family members may experience changes in their thoughts and feelings, leading to depression or anxiety. They may engage in ongoing unexpressed family conflict and/or bring up childhood family issues. Family members may begin to believe that their loved one is attention-seeking or avoiding their responsibilities, which then negatively impacts their relationships.
Role reversals may begin to emerge between the pain sufferer and other family members. For example, one spouse may have led the household, from cooking to yardwork. If he or she begins to suffer from pain, they may be unable to maintain those tasks, leaving the partner or other family members to take them on.
Another individual may have served as the “social director” for a family, providing educational support and running errands. If this person is diagnosed with a chronic pain condition, their responsibilities may be subsumed by another family member or the duties may go unfulfilled. The struggle to recover lost functions and roles can be debilitating to a family, increasing stress, grief, and depression.
When Caregivers Reinforce Pain Behaviors
Chronic pain can also impact the family system with significant positive outcomes, although this is less common.6 For example, if a spouse was controlling before they developed a chronic pain condition, then the other family members may now have more freedom. Family members may feel good about helping a loved one if they have a strong need to help others. A decrease in intimacy may feel positive to the person who experiences intimacy, or even sex, with their loved one as unwanted. Some members of the household may get additional support or sympathy from other family members. These positive outcomes can lead to family members unintentionally trying to get the patient to maintain the “sick” role.
The presence of a familial caregiver may contribute to enhanced cohesion and resilience as everyone works together to adapt to the demands of chronic pain.5 However, the family may also be responsible, in part, for maintaining and perpetuating pain behaviors.2 Those who are nearest to the person manifesting pain behavior will almost always respond to them, for example, and their mere presence may come to serve as a cue for increased reports of pain.8 Reinforcements of maladaptive behavior may occur when family members unintentionally provide attention or react too caringly to pain complaints.9 This example is often seen in situations where the person in pain has an overprotective partner or spouse. While attention is certainly a form of love expression, it may also be a negative reinforcement if abused.
Family caregivers may also promote fear of harm; despite meaning well, they may begin taking over tasks or even speaking for their loved one who is suffering from pain in an effort to terminate the stressful impact of their pain complaints. This approach, however, may actually detract from their loved one’s independence and self-efficacy.10 It is important for the person suffering from pain to maintain their independence and that family members support them in this regard.
Some families also deal with emotional problems at a somatic level.11 In other words, they exhibit their emotional problems with physical complaints. The opposite may also be true. Those who suffer from pain may live alone and have no family nearby or support system in place. These individuals may feel ignored or express frustration because they do not have anyone to talk to about their problems.
How to Assess Family Functioning
If the family is involved in maintaining the patient’s pain, then they should also be included in the assessment and treatment of pain.12 Several self-report instruments have been developed to measure family functioning, which may be used with families of patients who suffer from chronic pain, including the:
- Family Adaptability and Cohesion Evaluation Scales (FACES II)13
- Family Environment Scale (FES)14
- McMaster Family Assessment Device (FAD).15
There are also observational measures that may be used to assess family interactions, including the:
- Revealed differences technique16
- Simulated Family Activity Measurement (SIMFAM) technique17
- Manual Interaction Coding System (MICS).18
More specifically, the practitioner should obtain a family history of pain, ideally at a first visit. In addition, information about familial interactions preceding exacerbations and the meaning or attributions ascribed to the pain are important to decipher. Self-report measures such as those listed below may be used to gather some of this information:
- Spouse’s Perception of Disease (SPOD) questionnaire19
- West Haven Yale Multidimensional Pain Inventory (WHYMPI)20
- a diary to relate pain to spouse or partner behavior.12
Finally, family members should be made to feel comfortable when asking for family or couples counseling if needed.
When to Refer Family and Couples Counseling
Frontline practitioners should refer a family or couple to counseling when there is evidence of stress, grief, anger or conflict in the relationship and when helpful to address specific issues. The family or couple may pursue family therapy along with other types of mental health or addiction treatments. Furthermore, counseling can be helpful to the patient and their family members to understand one another better and learn coping skills to bring them closer together.
Clinicians can also educate patients and their families about the benefits of counseling. For example, addressing emotions with support groups or therapy can help to strengthen the family and reduce the suffering of all involved. Research has shown that discussion groups for patients with chronic pain and their family helps to improve communication, support mutual relationships, and provide better coping strategies.21 However, reviews of randomized controlled trials have indicated that family-oriented psychotherapies used to treat chronic illnesses generally have small effects; more research is required.22 There are a number of treatment approaches involving family members that have been developed, including operant-behavioral, cognitive-behavioral, and others.
Operant-behavioral treatment is based on the operant conditioning model of chronic pain, which proposes that pain behaviors are influenced by social responses of family members. Over time, these responses may become rooted patterns which leads to increased dependency and disability.23-25 When using an operant-behavioral approach, family members are taught to validate their loved one’s pain but also disregard maladaptive behaviors and reinforce wellness behaviors.5 These interventions have been shown to be effective when combined with family support and education about coping skills.26,27
Cognitive-behavioral treatment (CBT) is based on the cognitive-behavioral transactional model.28,29 It proposes that the family develops a relatively stable set of beliefs about illness, pain, disability, and coping over time. The focus in CBT is to direct the family toward developing an adaptive problem-solving approach to pain management. This involves increasing the effective use of available family resources (time, energy, knowledge, skills/abilities), teaching family members new adaptive coping skills, and helping them draw upon available external resources (eg, schools, community centers, childcare programs, women’s centers, and other community networks). There has been empirical support for the effectiveness of CBT with spouses of chronic pain sufferers.26,30
There are three other family-oriented therapies that include the spouse or the family; these are structural, cognitive, and strategic. However, these family- oriented therapies have scant research to support their effectiveness.
Structural family therapy proposes that family system structures, such as enmeshment, roles and rules, poor communication, lack of conflict resolution, withholding feelings, and avoiding emotionally laden topics contribute to the evelopment and perpetuation of pain.12,31 Therefore, treatment concentrates on changing the structure of the family so that a new homeostasis may be reached without the patient taking on the “sick” role.
Cognitive theory focuses on self-disclosure in marriage and a resulting uptake in the couple’s closeness and intimacy.32 The couple is encouraged, for example, to share appraisals and thoughts about each other and openly express negative emotions.
Strategic perspectives, on the other hand, consist of interventions that are practical and problem-oriented; these may require a comprehensive assessment by a therapist.33
How to Encourage Family Self-Care
Members of the family should be encouraged to address their own pain and stress resulting from these circumstances.5 First and foremost, they should maintain a healthy lifestyle, including a healthy diet, exercise, relaxation, and proper sleep hygiene. These practices may not only help the family face the difficult times ahead, but may also serve as models to their loved one suffering from chronic pain. Familial caregivers should avoid coddling or being punitive toward their loved one suffering from pain and instead take on more facilitative roles.
Family caregivers can also work to acknowledge and overcome any special obstacles that may occur when communicating with a person suffering from chronic pain.34 Family members will want to learn as much as they can about their loved one’s condition and treatment options.6 However, family members need to keep in mind that when communicating with their loved one’s doctors, they must first obtain permission and consider HIPPA regulations.
Family members should be encouraged to allow the person in pain to speak directly to the doctor and to only provide additional information when specifically asked to do so. Family members may add insight into their loved one’s pain by sharing their perception using a pain score (0 to 10), describing it as it unfolds throughout the day, and helping their loved one complete a pain log or diary. They may also inquire further about the side effects and dosages of medications and/or the appropriate activity levels and limitations.
A good model may be to encourage family members to view the situation as “our fight” and not “their fight,” being careful not to take negative behaviors of the loved one too personally.6 Families and support systems work best when everyone is operating cohesively. (More on family communication for your patients.)
Frontline practitioners need to be aware of how chronic pain is associated with functional limitations due to the positive and negative reinforcements from the family dynamic in response to pain.35 It is important to include family members in pain education and treatment approaches, and to encourage communication between them, which has been shown to improve outcomes.36 •View SourcesLast updated on: December 12, 2019