Table 2

Social factors that negatively affect quality of life in patients with advanced respiratory disease, with possible solutions

Contributory factorRelevance in advanced respiratory diseasePossible alleviating factorsSources of help that clinicians can recommendRole of clinician
Poverty: anxiety about money, loss of accommodation, lack of food, difficulty in getting welfare/benefits, particularly if invisible. Concern regarding continuing benefit receipt may deter from health-promoting activities such as exercise, for fear of being reported as fraudulent.Early loss of work, possibly low-skilled with lack of savings.
Partner prevented from work by caring duties or morbidity of own.
Increased costs (e.g. heating, transport) and decreased income.
In some countries, medical costs are high.
Benefits/welfare support, although complex bureaucratic system in most jurisdictions plus some rare illnesses unfamiliar to benefits system and common ones (e.g. COPD) may not be seen as serious.Social workers where available.
Citizens advice bureau (or equivalent charity) giving voluntary help.
Charities such as Breathe Easy offer information from within network.
Foodbanks: clinicians in UK can refer to foodbanks.
If hospice/palliative care service involved, they may be able to support social referrals.
Recommending to patient/carer or referral if within clinical services.
Being aware of importance of poverty in reducing health outcomes.
Endorsing need for health reasons for patient to use all support available.
Isolation: longstanding disabling illness, absence from work, high care needs and low income lead to isolation from social networks. Very important in young people, who find it more difficult to associate with people of similar age.Isolation associated with poorer health outcomes in every illness as well as in normal health [23], through higher incidence of depression, lack of self-care, loss of social confidence, lack of mental/physical activity.Company/friendship/support where costs can be helped where necessary and which have beneficial impact on health.Pulmonary rehabilitation and other group activities.
If palliative care involved, hospice day centre or breathlessness programme/voluntary sitters (also relieves carers).
Singing for breathing, or other activities.
Other clubs and societies/professional groups that may support, e.g. AGE UK, British Legion (for ex-service people).
Other charities, e.g. Men in Sheds.
Endorsing health benefit of activity to help symptoms and improve health, promoting access to information through the clinical services, e.g. at front desk.
Carer exhaustion and breakdown in family relationships.Carers usually similar age to patient, often smokers, may have morbidity of own.
Difficult to express resentment/ambiguity at caring role and carers' health needs often unsupported.
Although may have feelings of “growth”, many sacrifices in caring role and patient partner may take out anger/frustration on carer.
Where carers are parents of young adults, there are many complex feelings.
Improvement in health/social connectedness of patient.
Improved support for carer.
Increased psychosocial support for carer, e.g. from member of clinical team (see text).
Respite for carer, e.g. volunteer sitters.
With young person, specialist family support.
Hospice team may provide support for both patient and carer.
Charities such as Breathe Easy may help.
Citizens advice bureau for carer benefits.
Getting permission to contact carers' GP/primary healthcare team to highlight difficulties for carer and refer to other agencies where possible.
Impressing on carer the need to take care of own health.