This is the Chapter 15 of the book Introduction to Health Psychology (Val Morrison_ Paul Bennett) 4th Edition. Which is content for the exam of the component Health Psychology of Module 5 (Health Psychology & Applied Technology) of the University of Twente, in the Netherlands.

Ch.15: Impact and outcomes of illness: families/informal caregivers

Family Affair:

• Informal carers: untrained family members or friends, no clearly defined limits to their role
  • Positive effects of training caregivers in providing --> reduced caregiver burden, reduced anxiety and depression, and improved QoL for both the caregivers and their patients

Expectancies of care:

Gendered expectancies:

Societal expectation of caring being a ‘natural’ role for women, who are ‘expected’ to find family-oriented roles fulfilling, even in the absence of financial reward

• Caring becomes stressful -->  is judged as ‘going beyond the call of duty’ --> importance of identifying caregiver role expectations and their perceived spousal obligations

Culture:

• Filial piety: obligations of respecting, supporting and taking care of older family members.
  • Collectivism: belief and value systems including familism and filial responsibility or piety
  • South Asian cultures --> expectancies tend to fall on female family members
  • China --> filial obligation first extends to the eldest son, if married, his spouse.

Willingness to care:

• Caregiver well-being --> relationship caregiver and recipient from intrinsic motivations (principles) to care, as opposed to extrinsic motivations (guilt)
• Ethnic minority caregivers: emphasis on familism and filial responsibility, sense of reciprocity for former parental care and support, but also out of emotional attachment
  
  • African-American/Hispanic/Asian-American/British-Asian
• Rohr and Lang (2014): willingness to care in relation to the gains or losses anticipated from the role
• Prosocial behaviour: love, empathy, trust and altruism. Presence of the hormone oxytocin (acts as a neurotransmitter in the brain appears to reduce autonomic stress responses and associated with affiliative social behaviour) --> influence on our behaviour --> willingness to care differ in oxytocin levels.
• Caregivers may not have options other than to provide care --> demanding role seen as inescapable

Family systems:

• Stages in a continuum of adaptation (McCubbin and Patterson, 1982):

1. Stage of resistance: deny or avoid the reality
2. Stage of restructuring: acknowledge reality and start to reorganise their lives around
3. Stage of consolidation: newly adopted roles may have to become permanent

• Family-Systems Illness model (Rolland, 2012): more systemic, biopsychosocial approach to illness must acknowledge:
  • Illness and its likely characteristics over time
  • Those involved in family unit as they can ‘in turn influence the course of an illness and the wellbeing of an affected person’
  • Family goal: understanding of how they, as a family, function together and separately, with any gendered and cultural norms and expectations of caregiving also acknowledged
  • Three-dimensional model: relationship between illness type, time phases and family functioning
• Dimensions of family system functioning (Olson and Stewart, 1991): cohesion, adaptability and communication --> when balanced --> better adaptation to life stressors

Adult-child caregivers:

• Parents: balance providing care/making informed decisions on behalf of a younger child to allowing the child to develop
• Fathers: greater reporting of problem-focused coping --> attempting to gain a sense of control
• School-aged caregivers:
  
  • Academic performance and potentially their future undermined.
  • Not recognise themselves as carers, responding simply to caregiving requests of their parent in a reciprocal manner
  • Reversal of roles --> great emotional investment
  • Sons:
    
    • More likely to provide practical support
    • More likely transition parent into residential care
  • Female caregivers: uncomfortable providing personal care to fathers
• Spouses as caregivers:
  
  • Co-habiting: more hours of support, spanning the range of needs

Supportive relationships:

Presence or absence of perceived and received social support --> influence response to, and outcomes of, stressful experiences, such as illness

• Benefits of social support:
  • Increased adherence to treatment and self-care
  • Better caregiver emotional adjustment
  • Improved marital relationships
    
    • Generally point to greater ‘gain’ to husbands from wives’ support than married women seem to benefit from husband support
  • Reduced caregiver burden
  • Increased survival
  • --> such outcomes predicted by functional support: perceived quality and function of these supports, rather than structural: number of supports. Also by:
    
    • Whether support is provided willingly or reluctantly
    • Satisfaction with the received support

Helpful and unhelpful caring:

• Perceived as helpful:
  • Practical assistance
  • Expressions of love
  • Concern and understanding
  • Relative consistency in terms of actions considered to be unhelpful --> being unrealistically cheerful, underestimating the illness effects,…
• Unhelpful actions appear to have a more strongly negative effect on well-being --> Patients who perceived their caregivers’ actions as unhelpful, greater depression (Band et al. 2015)
• Over caring: can act as a form of operant conditioning in which patients are rewarded for exhibiting ‘sick role’
• Types of unsupportive interaction:

1. Insensitivity
2. Disengaging behaviour
3. Fault-finding
4. Forced optimism

Consequences of caring:

Informal caregiving, emerges either suddenly or gradually but often unexpectedly out of a familial relationship --> little training for this role

• Voluntary work: social, emotional and possibly physical well-being of the helper
  • However, in the context of illness in a loved one, threat to well-being, possibly because of the emotional bonds --> immersed in the role 24 hours a day
• ‘Caregiver burden’: objective and subjective ‘costs’ of caring to the caregiver

Emotional impact caring:

• Clinically significant distress
• Physical health and life satisfaction lower than in non-caregivers
• Feelings of loss, anxiety or depression
• Distress remained high even after cancer treatment completed --> reflecting fears of recurrence
• Young carers:
  
  • Feelings of isolation: due to not discussing role, to not be seen by peers as ‘different’, or to avoid stigma attached to the illness
  • Enhanced self-regard and self-esteem, pride was taken in performing caregiving tasks and feeling useful --> however, such gains may not outweigh the negatives
    
    • Importance role of personal resilience

Physical effects of caring:

• Increased risk of physical health complaints
  • back or joint pain
• Female caregivers: decline in their own physical health

Immunological effects of caring:

Nature, intensity, duration and frequency of stressor --> influence nature/extent immune change in a dynamic manner, dependent on the state immune system at time stressor event

• Accelerated ageing: caregiving stress influence on telomere (shorten naturally with age) length --> shorter

Influences on caring outcomes:

Features of illness:

Caregiver distress is subject to further fluctuations dependent on the care recipient’s physical and mental well-being

• Increase in negative characteristics of the care recipient predicted caregiver depression
• Caregiver burden:
  
  • Decline positive characteristics of the care recipient
  • Reduced satisfaction with their own social contacts
  • Increased concern for future care

Influence of caregiver characteristics:

• Differences willingness of caregivers and seeking support outside family in different ethnicities/cultural affiliations
  • Fear of obligation to others reduced the likelihood of South Asian family caregivers making use of a wider social network to help provide care.
  • Familism: feelings of loyalty and solidarity among family members, related to providing care
• The Sociocultural Stress and Coping Model: only theoretical model within the caregiving literature which explicitly considers the role culture plays in the stress-coping-outcome relationship

Personality:

• Optimism/Neuroticism:
  • Direct effect caregiver mental health
  • Indirect effects via influence on perceived stress, and on perceptions/appraisals of the care recipient’s level of impairment
• Resilience: ability to ‘bounce back’ in times of adversity

Attachment:

• Four prototypical styles derived from two dimensions – anxiety and avoidance
  • Anxious attached individuals: Focus on own distress and needs, with fear of being rejected by others as a result of not being good enough.
    • Motivated more by addressing emotional needs and worries, experience more distress
  • Avoidant attachment style: Separate thoughts from emotions, and to be self-reliant to the point of emotional detachment from others as perhaps a form of self-protection
    
    • Prevent accessing social interaction or, indeed, being emotionally involved in their caregiving role sufficiently to enable finding any meaning within it.

1. Secure: low in anxiety and avoidance
   • Autonomous motives for caregiving and for benefit-finding
2. Preoccupied: high in anxiety but low in avoidance
3. Fearful avoidant: high in both anxiety and avoidance
4. Dismissing avoidant: low in anxiety but high in avoidance

Caregiver appraisals:

• ‘Resistance factors’: caregiver distress appears to result from subjective appraisals of an imbalance between the demands of caring and the resources perceived
  • Intrapersonal factors: personality
  • Motivation
  • Self-efficacy beliefs
  • Socio-ecological factors: family environment and support resources
  • Stress-processing factors: cognitive appraisals of a situation and their coping responses

Protective buffering:

Spousal caregivers have been found to inhibit, deny or conceal negative information, to ‘protect’ their partners, although in doing so they may increase their own distress and even that of the patient partner

• If buffering increased, so did distress, and low levels of spousal relationship satisfaction

Relationship caregiver-patient:

• ‘Dyadic coping’: coping together, engaged in coping with the stressor, even where it is only one that is directly affected

Quality:

• Depressed caregivers: communal and intimate relationships --> restrictions on their own activities
• Resentful caregivers: less close relationships and reported their activity restriction to be predicted by severity of patient symptoms
  
  • Overly controlling and overprotective care --> undermine patient autonomy and progress
• Dyadic adjustment: open and constructive communications, joint problem-solving`

Dyadic perceptions, shared and discrepant beliefs:

• Negative perceptions --> perceptions of control/cure
  • Control beliefs: influence individuals’ responsiveness to spousal behaviour perceived as either supportive or unsupportive
    • Low personal control beliefs would be more responsive to both positively and negatively perceived support
• Shared positive perceptions --> lower disability, fewer sexual functioning difficulties, less health-related distress, greater vitality and better global adjustment
• Dyadic approach:
  
  • Guy Bodenman systemic–transactional model (STM): develops the transactional model of stress-coping of Richard Lazarus, beliefs and outcomes --> interdependent relation and reciprocal influence
  • Intradyadic stress, or relationship stress: couples relationship can be both affected by, and a source of, stress --> how members of dyad cope, either separately or together --> influence outcome