Table 3 “In your view, what makes caring for someone with a visual impairment different to caring for someone with another chronic health condition?” (38 responses).

The difficulty of understanding visual impairment and what the person with visual impairment (PVI) sees

Participants frequently stated that it was hard for caregivers to fully understand the impact of sight loss on the PVI. Several participants referred to visual impairment being an invisible condition.

“Vision loss can’t be seen by the caregiver” (P27).

“[VI is] a hidden disability” (P14, P46, P49)

“[VI is] not obvious” (P5, P31)

“Simulation specs are useful” (P62) for allowing caregivers to see what the PVI sees.

Specific practical challenges of caregiving

Participants described the way in which sight loss can impact a significant variety of daily tasks with which caregivers may need to provide support. Providing informal care may therefore pervade all aspects of daily life. This may make it difficult to plan for where and when support for caregivers may be required.

“Sight loss impacts on most aspects of daily living which means a range of disability can be very wide.” (P50)

“Caring for someone with a visual impairment can be a 24 hours job.” (P21)

“It’s more difficult to formally recognise/quantify the level of support because it [caregiving] is often lots of very small unplanned "events" dispersed through the day, rather than a very specific single event that can be planned on a regular basis.” (P11)

Emotional impact on the caregiver-PVI together

Both PVI and caregivers may face isolation, loneliness and frustration. The mental health impacts of VI may thus create an additional challenge for caregivers. The uncertainty about the PVI’s prognosis means caregivers may have to constantly revise their expectations for the future.

“Emotional impact of sight loss can be very severe for all involved (knock-on effect).” (P14)

“Frustration with the change to their own hopes and ambitions.” (P46)

“VI increases the risk of depression for the patient which would make caregiver role more challenging, as [it’s] not just visual problems to contend with.” (P63)

“Parents of children with progressive diseases have to adapt to new reality’ every year or two, potentially with implications on hopes and aspirations for their child.” (P41).

Potential relationship strain between the caregiver and PVI

Several HCCP’s highlighted the dilemma experienced by caregivers between providing assistance and preserving the independence of the PVI. There may be mutual frustrations and divergences in the PVI’s and caregiver’s views on what may be helpful. Responses pointed to the balance required between the caregiver’s active involvement in the PVI’s life, and respect for the PVI’s autonomy and privacy.

“The patient is still capable and desires independence but still needs sometimes resented support.” (P52)

“It can be hard for the caregiver to understand the bereavement felt… Caregivers often look for solutions and are frustrated if the client doesn’t want the gadgets etc available.” (P32)

“Often doing the right thing such as tidying up can be counterproductive to the person with VI, causing friction.” (P49)

“VI… may impact on the privacy of patient due to caregiver possible need to read correspondence, [which] risks affecting [the] relationship” (P63).