Homecare user needs from the perspective of the patient and carers: a review

Figures & data

Table 1 Patient and carer need categories related to condition or illness

Need category	Patient-related	Caregiver-related
Treatment-related	Medication (including adherence to regimen) Nursing care Prescribed treatments and procedures Dietary instructions Urination and bowel problems Physical therapy Individualization of care	Management of care needs Physical labor
Activities of daily living (ADL)	Personal care (bathing, toileting, dressing, transferring, eating) Instrumental ADL (shopping, light housework, meal preparation, money management, telephone access) Mobility (climbing stairs, getting outside the home, ability to walk) Fulfilling role commitments (care of others, work-related)	Physical burdens Restrictions on autonomy/independence Restrictions on leisure time Spillover to other areas of life
Self-sufficiency needs	Transportation Housing Legal Finance work	Increased responsibility Financial needs or burdens Transportation needs or burdens
Social needs	Interpersonal interactions Social support (from those sharing the same home or from the wider network) Open discussion Avoiding dependency or “institutionalization in the home”	Help to adapt to disorder or death Strengthening of family ties Pressure on family and friend networks Open discussion Social reintegration (especially outside the inner network) Not encouraging dependency (not “killing with kindness”)
Emotional needs	Role change (eg, from parent to “child”) or identity (self-concept) needs Loss of independence Coping with physical restrictions (anger and depression) Fears of being alone Guilt Coping with added responsibility Respite Indebtedness Demoralization	Role change (eg, from child to “parent”), impact on marriage or partnerships (eg, loss of spouse) Burnout Distress Felt responsibility Emotional labor Nonreciprocity in nature of exchange relationship (being “taken for granted”) Guilt Respite Self-esteem Desensitization to condition Demoralization Inadequacy
Informational needs	Treatment uncertainty Outcome uncertainty (eg, longevity, changing needs, “realistic” expectations, “healthy” appraisals of condition) Condition myths	Treatment uncertainty Outcome uncertainty (eg, changing needs) Condition myths (eg, fears of contagious nature of disease) Appropriate care provision

Figure 1 A framework to understand stakeholder homecare needs.

Abbreviation: ADL, activities of daily living.