Table 1 Summary of thematic analysis

Living with a family member with Parkinson’s disease

Response

Expression of Emotions

Fear, confusion, worry, anger, sadness, loneliness, distress, helplessness, anxiety, unpleasantness, patience, motivation, will, effort, bad conscience, shock, resistance, disconnection, pain, neglect, denial, perseverance, humility, trust

Adaptation

Daily learning, new skills, coping with difficult situations, appreciation of what is good/healthy, accepting help, giving help, more calmness in life

Change

Role of family members

Adjustment to daily life, change in lifestyle, different activities than before, change in behaviour, increased responsibility, getting used to a different life, social isolation, inevitability, reduced quality of life, reduced activities

Patient characteristics

Dependence on help from others, inability to care for self, increased sports activity, changes in mobility, slowness, quick to take offence, self-absorption, resentfulness, intense emotions, sensitivity, listlessness, unmotivated, disinterested, denial, unpreoccupied, irritable

Family relationships

Same as before illness, more connected, closer, socially isolated, relationship problems, otherness, relationship deterioration, marital problems, relationship change

Care

Care and assistance

Care and assistance with activities of daily living, assistance with personal care, assistance with outside activities, assistance with household chores, involvement in medical treatment, encouragement to walk, service

Stress and burden

Stress, giving up, extra workload, unpredictability, disease progression, lack of awareness, complications of the disease, side effects of medication

Support

Society

Association, training, seminars, workshops, lectures, socialising, games, excursions, exchange of experiences, psychological support, networking

Inclusion in health treatment

Integrated treatment, support, specialist treatments, lack of knowledge