Family Quality of Life and Family Quality of Life and Chronic IllnessChronic Illness

J. Aubrey Burhart, Ed.M.J. Aubrey Burhart, Ed.M.

State University of New York State University of New York at Buffaloat Buffalo

IntroductionIntroduction

• Growing recognition of quality of life Growing recognition of quality of life parallels increasing medical knowledge parallels increasing medical knowledge and technologyand technology

• Improved longevity of nation as a whole Improved longevity of nation as a whole leads to increased likelihood that more leads to increased likelihood that more people will develop chronic illness people will develop chronic illness (Lubkin & (Lubkin & Larsen, 1998)Larsen, 1998)

• When When quantity quantity of life is extended, of life is extended, quality quality of life needs to be considered.of life needs to be considered.

Defining Quality of lifeDefining Quality of life

• No universally accepted definitionNo universally accepted definition

• Subjective and objective components Subjective and objective components are typically includedare typically included

Defining Quality of LifeDefining Quality of Life

• Ferrans (1985): “A person’s sense of Ferrans (1985): “A person’s sense of well-being that stems from satisfaction well-being that stems from satisfaction or dissatisfaction with the areas of life or dissatisfaction with the areas of life that are important to him/her.”that are important to him/her.”

• Cella (1991): “Appraisal of and Cella (1991): “Appraisal of and satisfaction with their current level of satisfaction with their current level of functioning as compared to what they functioning as compared to what they perceive to be possible or ideal.”perceive to be possible or ideal.”

Recurrent Themes in Recurrent Themes in definitions of QoLdefinitions of QoL

• Multidimensionality: Multidimensionality: Dimensions vary from Dimensions vary from author to author; author to author; common themes: common themes: physical, psychological, physical, psychological, social, and spiritual well-social, and spiritual well-being, economic impactbeing, economic impact

• Interpersonal well-being: Interpersonal well-being: nonsupportive nonsupportive relationships, sense of relationships, sense of not fulfilling family rolesnot fulfilling family roles

• Subjectivity: Numerous Subjectivity: Numerous subjective attributes subjective attributes influence various influence various domainsdomains– Physical well-being: Physical well-being:

feeling sick, slow or feeling sick, slow or poor functioning, poor functioning, feeling dependent, feeling dependent, fatigued or in painfatigued or in pain

• Psychological well-being: Psychological well-being: unable to concentrate, unable to concentrate, feeling insecure, feeling insecure, questions/fears questions/fears regarding diseaseregarding disease

Physical IssuesPhysical Issues

• QoL is affected by the ability of chronically QoL is affected by the ability of chronically ill persons to continue in daily activities to ill persons to continue in daily activities to avoid decreased self-esteem and autonomyavoid decreased self-esteem and autonomy

• Symptoms/Pain: Symptoms indicate Symptoms/Pain: Symptoms indicate whether disease is present or advancing; whether disease is present or advancing; Patients who view pain as inevitable Patients who view pain as inevitable experience greater pain/more distress experience greater pain/more distress compared to those who perceived pain as a compared to those who perceived pain as a challenge challenge (Barkwell, 1991)(Barkwell, 1991)

• Patients’ families often perceive the Patients’ families often perceive the patient’s pain to be greater than the patient’s pain to be greater than the patient’s themselves reportpatient’s themselves report

Psychological IssuesPsychological Issues• Psychological well-being influences Psychological well-being influences

adjustment to chronic illness; General adjustment to chronic illness; General discomfort is thought to be negatively discomfort is thought to be negatively associated with life satisfaction and associated with life satisfaction and perceived coping abilityperceived coping ability

• Searching for meaning: Finding some Searching for meaning: Finding some purpose; “Why me?”purpose; “Why me?”– People ascribe various meanings: People ascribe various meanings:

• God has a planGod has a plan• UnluckyUnlucky• My family is now closerMy family is now closer• I deserved thisI deserved this

Social IssuesSocial Issues

• Chronic illness affects quality of patients’ Chronic illness affects quality of patients’ social relationships and roles; Patients’ social relationships and roles; Patients’ social support affects their QoLsocial support affects their QoL

• Patient support groups reinforce self-worth Patient support groups reinforce self-worth and promote adaptationand promote adaptation

• Affect and affirmation from spouses and Affect and affirmation from spouses and family correlated with less depression and family correlated with less depression and improved marriage and family functioning improved marriage and family functioning (Primomo et al., 1990)(Primomo et al., 1990)

Social Issues cont’d.Social Issues cont’d.• Social well-being contributes to QoL in Social well-being contributes to QoL in

many ways many ways (Wortman, 1984)(Wortman, 1984)::– Influences how meaning is ascribed to Influences how meaning is ascribed to

illnessillness– Alters coping strategies used to manage Alters coping strategies used to manage

stressstress– Influences motivation to employ Influences motivation to employ

adaptive behaviorsadaptive behaviors– Promotes self-esteemPromotes self-esteem– Protects individuals from negative Protects individuals from negative

effects of stress by altering their moodeffects of stress by altering their mood

Social Issues cont’d.Social Issues cont’d.

• For families, the goal is often “normalization”For families, the goal is often “normalization”

• Strategies families often employ to be Strategies families often employ to be perceived as “normal” include: perceived as “normal” include: (Knafl & Deatrick, (Knafl & Deatrick, 1986)1986)

– Engaging in activities that other families doEngaging in activities that other families do– Limiting contacts with people who are similarly Limiting contacts with people who are similarly

disabled or illdisabled or ill– Avoiding embarrassing situationsAvoiding embarrassing situations– Controlling amount of information shared with othersControlling amount of information shared with others

Factors that affect family Factors that affect family QoLQoL

(Jassak & Knafl, 1990)(Jassak & Knafl, 1990)

• Family structure/interaction patternsFamily structure/interaction patterns

• Availability of social networksAvailability of social networks

• Potential for adaptationPotential for adaptation

• Family philosophy such as beliefs, Family philosophy such as beliefs, attitudes, values, and perceived attitudes, values, and perceived stressorsstressors

• Impact of illnessImpact of illness

Spiritual IssuesSpiritual Issues

• Spirituality differs from religiosity: Spirituality differs from religiosity: “Spirituality” refers to innate, universal, “Spirituality” refers to innate, universal, human phenomenon; “Religiosity” refers to a human phenomenon; “Religiosity” refers to a system of beliefs and behaviors that reflect system of beliefs and behaviors that reflect one’s spiritualityone’s spirituality

• Spiritual well-being is believed to be Spiritual well-being is believed to be associated decreased frequently and amount associated decreased frequently and amount of painof pain

• Belief in a higher being used as a coping Belief in a higher being used as a coping mechanism by families mechanism by families

Economic IssuesEconomic Issues

• Chronic illness often precludes continued Chronic illness often precludes continued employmentemployment

• Depending on amount of assistance Depending on amount of assistance person needs, the primary family person needs, the primary family caregiver may have to terminate caregiver may have to terminate employmentemployment

• Extra costs incurred for special food, Extra costs incurred for special food, medical supplies, therapymedical supplies, therapy

• If family cannot afford assistance, family If family cannot afford assistance, family caregiver is likely to become overextendedcaregiver is likely to become overextended

Family CaregiversFamily Caregivers(Lubkin & Larsen, 1998)(Lubkin & Larsen, 1998)

• Providing care to another can enhance Providing care to another can enhance caregiver’s sense of efficacy and caregiver’s sense of efficacy and contribute to a positive self-imagecontribute to a positive self-image

• Caring for patient at home preserves some Caring for patient at home preserves some normalcy and can enhance QoL for patient normalcy and can enhance QoL for patient and familyand family

• When demands of providing care are When demands of providing care are perceived as exceeding available perceived as exceeding available resources, caregivers experience stress, resources, caregivers experience stress, powerlessness, sometimes depressionpowerlessness, sometimes depression

Family CaregiversFamily Caregivers

• Stress for families results from uncertainty Stress for families results from uncertainty regarding increased need for physical care over an regarding increased need for physical care over an indefinite periodindefinite period

• Families often report most extreme stress at onset Families often report most extreme stress at onset of symptoms, awaiting diagnosis; Stress increases of symptoms, awaiting diagnosis; Stress increases when client first moves in with caregiverwhen client first moves in with caregiver

• Families face physical and intellectual changes in Families face physical and intellectual changes in patient, loss of financial resources, loss of patient, loss of financial resources, loss of emotional support from individualemotional support from individual

• Primary caregiver may have decreased social Primary caregiver may have decreased social activitiesactivities

Family CaregiversFamily Caregivers

• Burden of caregiving can increase over timeBurden of caregiving can increase over time• Various illnesses are associated with Various illnesses are associated with

exhaustion, fatigue, nervousness, and exhaustion, fatigue, nervousness, and depression in primary caregiver, leading to depression in primary caregiver, leading to increased risk for illness (heart disease, increased risk for illness (heart disease, hypertension)hypertension)

• Anxiety and guilt are prominent regarding Anxiety and guilt are prominent regarding person’s future health and eventual death, person’s future health and eventual death, caregiver’s feelings of vulnerability and loss caregiver’s feelings of vulnerability and loss of control, effects of illness on other family of control, effects of illness on other family members, distribution of finances, learning members, distribution of finances, learning about member’s health problem and complex about member’s health problem and complex skills necessary for care, dealing with medical skills necessary for care, dealing with medical care providerscare providers

Family CaregiversFamily Caregivers

• Family might resort to criticism to Family might resort to criticism to motivate client when angry and frustratedmotivate client when angry and frustrated

• Parents QoL can be affected by pervasive Parents QoL can be affected by pervasive feelings of guilt wondering if they caused feelings of guilt wondering if they caused the illness in a childthe illness in a child

• Family may have to deal with patient’s Family may have to deal with patient’s anger and unrealistic demands; Family anger and unrealistic demands; Family often swallows their natural response to often swallows their natural response to anger which increases anxietyanger which increases anxiety

• Families often undergo isolation and “loss Families often undergo isolation and “loss of self”of self”

Chronic Disease – The nature Chronic Disease – The nature of the challengeof the challenge

• About 10-15% of children under 16 years About 10-15% of children under 16 years of age are affected by chronic illnessof age are affected by chronic illness

• Many cannot be curedMany cannot be cured• Modern medicine can control pain, Modern medicine can control pain,

reduce intensity of symptoms, limit reduce intensity of symptoms, limit likelihood of long term complicationslikelihood of long term complications

• Every individual of child’s family will be Every individual of child’s family will be changed due to this unexpected changed due to this unexpected diagnosisdiagnosis

Common Chronic IllnessesCommon Chronic Illnesses

• Cystic fibrosisCystic fibrosis

• Spina bifidaSpina bifida

• LeukemiaLeukemia

• Congenital heart Congenital heart diseasedisease

• AsthmaAsthma

• Sickle cell diseaseSickle cell disease

• Kidney DiseaseKidney Disease

• DiabetesDiabetes

• Muscular Muscular DystrophyDystrophy

• HemophiliaHemophilia

• Neurological Neurological DiseaseDisease

Concepts of Stress and Concepts of Stress and CopingCoping

• Coping: “Constantly changing cognitive : “Constantly changing cognitive and behavioral efforts to manage specific and behavioral efforts to manage specific external and/or internal demands that are external and/or internal demands that are appraised as taxing or exceeding the appraised as taxing or exceeding the resources of the person” resources of the person” (Eiser, 1993, p.94)(Eiser, 1993, p.94)

•Two ways of coping:– Attempting to change or control Attempting to change or control

some aspect of the individual or some aspect of the individual or environment (problem focused)environment (problem focused)

– By managing or regulating the By managing or regulating the negative emotions associated with negative emotions associated with the stressor (emotion-focused)the stressor (emotion-focused)

Mothers and FathersMothers and Fathers

• Mothers’ responses to chronic disease in their Mothers’ responses to chronic disease in their child have received an enormous amount of child have received an enormous amount of attention compared to other family membersattention compared to other family members

• Mothers often take responsibility for sick Mothers often take responsibility for sick child; Fathers take care of other siblings and child; Fathers take care of other siblings and maintain self-esteem through role as maintain self-esteem through role as breadwinnerbreadwinner

• These differentiations create task specific These differentiations create task specific stressors for mothers and fathersstressors for mothers and fathers

Mothers mental health Mothers mental health adjustmentadjustment

(Eiser, 1993)(Eiser, 1993)

• More likely to be anxious and More likely to be anxious and depressed depressed

• Report more mental and physical Report more mental and physical health complaintshealth complaints

• Fear the child will hate them for the Fear the child will hate them for the pain they inflict via administering pain they inflict via administering treatmentstreatments

Factors that affect mothers’ Factors that affect mothers’ mental healthmental health

• Time since diagnosisTime since diagnosis

• Age of child Age of child – preschool, adolescent age associated with preschool, adolescent age associated with

more distressmore distress

• Disease characteristics Disease characteristics – fewer conclusive studiesfewer conclusive studies

• Outside employment Outside employment – dependent on reason for employment, implicit dependent on reason for employment, implicit

rewards in the work environmentrewards in the work environment

Fathers’ responses to chronic Fathers’ responses to chronic disease in their childdisease in their child

• Appear less likely to respond by showing Appear less likely to respond by showing increased signs of depression and anxietyincreased signs of depression and anxiety

• Understand less about the diseaseUnderstand less about the disease• Less involved in everyday practical careLess involved in everyday practical care• However, less likely to be considered for However, less likely to be considered for

promotionpromotion• Fathers may interpret their role to be Fathers may interpret their role to be

supporting their wifesupporting their wife• Contribute more with choresContribute more with chores• Buffer the effects of child’s chronic disease Buffer the effects of child’s chronic disease

on mothers’ mental healthon mothers’ mental health

Impact of Chronic Disease on Impact of Chronic Disease on Family relationships Family relationships

(Garrison & McQuiston, 1989)(Garrison & McQuiston, 1989)

• Both siblings and mothers often exhibit Both siblings and mothers often exhibit increased levels of psychological distress and increased levels of psychological distress and maladaptation.maladaptation.

• Marital disharmony, not divorce, is more Marital disharmony, not divorce, is more commoncommon

• Specific family interaction patterns, such as Specific family interaction patterns, such as overprotection and high levels of conflict, as overprotection and high levels of conflict, as well as parental psychological dysfunction well as parental psychological dysfunction have been associated with child adjustment have been associated with child adjustment problemsproblems

Maintaining a Meaningful QoL:Maintaining a Meaningful QoL:Tips for CliniciansTips for Clinicians

• Provide families with disease-related Provide families with disease-related information and expected changesinformation and expected changes

• Seek out support groups for families with Seek out support groups for families with children with chronic illnesschildren with chronic illness

• Emphasize family strengthsEmphasize family strengths• Draw out family expectations of client and Draw out family expectations of client and

others; Assist in the reintegration of their rolesothers; Assist in the reintegration of their roles• Validate the unpredictability, frustration, etc.Validate the unpredictability, frustration, etc.• Differentiate between wants and needs in Differentiate between wants and needs in

order to avoid disappointment and complaintsorder to avoid disappointment and complaints

Maintaining a Meaningful QoL:Maintaining a Meaningful QoL:Tips for CliniciansTips for Clinicians

• Caregivers need a break! Encourage Caregivers need a break! Encourage them to compromise on certain aspects them to compromise on certain aspects of managing the houseof managing the house

• Families need help re-managing moneyFamilies need help re-managing money

• Facilitate caregivers’ perceptions of Facilitate caregivers’ perceptions of respite as a reasonable and appropriate respite as a reasonable and appropriate action, not personal failureaction, not personal failure

Thank You!Thank You!

ReferencesReferences

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Eiser, C. (1993). Eiser, C. (1993). Growing up with a chronic disease: The impact on children and Growing up with a chronic disease: The impact on children and their families. their families. Philadelphia: Jessica Kingsley Publishers.Philadelphia: Jessica Kingsley Publishers.

Garrison, W. T., & McQuiston, S. (1989). Garrison, W. T., & McQuiston, S. (1989). Chronic illness during childhood and Chronic illness during childhood and adolescence: Psychological aspects.adolescence: Psychological aspects. London: Sage Publications. London: Sage Publications.

Jassak, P.F., & Knafl, K. A. (1990). Quality of family life: Exploration of a concept. Jassak, P.F., & Knafl, K. A. (1990). Quality of family life: Exploration of a concept. Seminars in Oncology Nursing, 6, Seminars in Oncology Nursing, 6, 298-302,298-302,

Knafl, K. A., & Deatrick, J. A. (1986). How families manage chronic conditions: An Knafl, K. A., & Deatrick, J. A. (1986). How families manage chronic conditions: An analysis of the concept of normalization. analysis of the concept of normalization. Research in Nursing and Health, 9, Research in Nursing and Health, 9, 215-222.215-222.

Lubkin, I. M., & Larsen, P. D. (1998). Lubkin, I. M., & Larsen, P. D. (1998). Chronic illness: Impacts and interventions. Chronic illness: Impacts and interventions. Massachusetts: Jones and Bartlett Publishers.Massachusetts: Jones and Bartlett Publishers.

Primomo, J., Yates, B. C., & Woods, N. E. (1990). Social support for women during Primomo, J., Yates, B. C., & Woods, N. E. (1990). Social support for women during chronic illness: The relationship among sources and types to adjustment.chronic illness: The relationship among sources and types to adjustment. Research in Nursing and Health, 13(3), Research in Nursing and Health, 13(3), 153-161.153-161.

Wortman, C. B., & Silver, R. C. (1992). Reconsidering assumptions about coping Wortman, C. B., & Silver, R. C. (1992). Reconsidering assumptions about coping with loss: An overview of current research. In L. Montada et al. (eds.), with loss: An overview of current research. In L. Montada et al. (eds.), Life crises Life crises and experiences of loss in adulthood. and experiences of loss in adulthood. Hillsdale, NJ: Lawrence Erlbaum Hillsdale, NJ: Lawrence Erlbaum Associates.Associates.