Family

JIA often has significant implications for family structure and dynamics (see Chapter 14). The effect on the family can be at many levels, such as financial, emotional, and with intra-family relationships. There may also be a negative effect on the siblings of a child with JIA.

Financially, the family may incur additional expenses in travel and health care costs. A parent or partner may be restricted in the ability to work, because of their role as carer. Adults with JIA are more likely to be unemployed or paid lower salaries than their able-bodied peers. If a patient has poor mobility, this may necessitate mobility aid provision or home remodeling. It may also influence choice of accommodation. This is particularly the case with access to the upper storey of a house: in adult patients with JIA (62), 58% of patients have difficulty climbing stairs, 33% choose to live in ground-floor accommodations, and 22% of those with stairs required assistance in the form of stair rails or a stair lift.

Families (and sometimes professionals) can become overprotective to an individual with JIA. This often leads to a family having lower expectations and setting less demanding goals for an individual. This may have a detrimental effect on transition, with lack of career maturity and work experience linked to a parent's view that work experience should occur at an average of 16 years (much later than their nondisabled peers) (63). The same research also indicates that parents often have lower expectations of their child's educational potential, despite young people with JIA either matching or outperforming their able-bodied peers' educational achievements (5,62,64).

Young people with poor self-confidence and JIA are much more likely to spend time with their family rather than with their friends/peers. This can lead to social impoverishment, loneliness, and social isolation for the individual. It can also impact on the socialization of the family, which may become more insular and inward looking as a result of the social dependence of the disabled individual within it.

Families need to develop resilient traits such as balancing illness and family needs effectively, maintaining flexibility in the family unit, remaining socially integrated, maintaining clear family boundaries, and developing collaborative rather than dependant relationships with health professionals (65). These traits are equally valuable in families where the patient is a child living with parents or an adult living with another adult. They are needed to prevent opportunities being lost for healthy family members and to avoid the dissolution of the family unit. Up to a three-fold increase of divorce in families of children with JIA has been reported (66).

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