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Table 2 Main themes & subthemes, supported in observations ± interviews

From: Understanding family caregivers’ needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal

ThemesSub-themesCaring activitiesSupported in observationSupported in interviews
Provision of care towards patient self-care and prevention of complicationsFamily caregivers assistance in activities of daily livingBathing
Grooming
Feeding
Toileting
Transfers
Use of wheelchair
Socialisation
Help with behaviour management (exercise and diet)
Help with medical procedures
Promotion in self-care
Family caregivers assistance towards prevention of complicationsAspiration
Dehydration
Constipation
Moisture lesions
Pressure ulcers
Ankyloses
Wandering
Falls
Perceived needsKnowledgePrevention of complications
Medicines management
Management of challenging behaviour
Access to professional support and services
 Understanding process and signs of disease progression and dying
PracticalAspiration of secretions
Transfer techniques
Techniques to prevent pressure ulcers, aspiration and ankyloses
Unknown needsPrevention of complicationsAspiration, ankyloses, dehydration, constipation and moisture lesions
KnowledgeDisease progression
Signs and symptoms complications
Medicines and side effects
Empowerment of patient’s self-care
Access to professional support and services
Family caregivers’ own physical and emotional impairmentsPhysicalSkeletal muscle health
Cardiac health
EmotionalDepression
Relationship difficulties
Balancing limited timeCaring of other family membersGrand-children, father, brother and husband
Providing incomeRaising cattle
Farming
Domestic activitiesPreparation of meals
Shopping
Financial management
Washing and ironing clothes
Cleaning
  1. Legend: subthemes ordered according to the predominance of observations and participant quotes