Table 2.

Direct support needs—FCGs’ own health and well-being needs and support measures

CSNAT-domain (main category)	Subcategories	Caregivers’ unmet needs	Supportive input/action plan
Having time for yourself in the day (90 entries)	Dealing with caregiver burden	Feels burdened Difficulties to reconcile things Only very few reserves left Patient is demanding, FCG is doing household chores and care alone Son is alone most of the time Patient does not accept assistance	Advice and information – Additional support (volunteers; community nursing; psychologist; social work) Counselling – Resources and stress factors, limits – Coping strategies – Taking breaks, walks, holidays – Support via family, friends, neighbours – Reorganising daily schedule – Talk with patient, family Coordination and arrangement – Additional care Signposting and referral – Hospice volunteer service – Care and social services
	24/7 care	Caring 24/7 for the patient, no time for own family Does not want to leave patient alone
	Fears leaving patient alone	Fear of fall Fear of convulsion Fear that patient would not eat when she is not there Fear of COVID-infection Assistance available, cannot let go Cannot confine patient to anyone
	Communication within family	Nurse shall talk to patient, that FCG needs breaks Needs break, patient should be admitted to hospital Does not want to burden adult children
	Performing activities	Wants two short breaks a day Wants to do more activities Wants to take walks Asks, if situation allows to take a break
Dealing with your feelings and worries (76 entries)	Family conflicts	Family history, difficult family situation Communication problems Additional burdens within the family Conflict with patient	Advice and information – Psycho-social services, psycho-oncology – Seeking help from family, friends – Reassuring help from PHC team – Hospice volunteer service Counselling – Listening, reassuring, relieving – Own needs, resources, limits
	Dying and death	Talking about dying and death Dying in dignity and peace Worries about drinking and eating Experiences with undignified death
Dealing with your feelings and worries (continued) (76 entries)	Burdening situations	Patient angry, aggressive Patient accuses helper Rapid deterioration Tumour recurrence Wellbeing of other family members Feels not to be taken seriously by healthcare professionals Sleep disorder Own eye surgery, worries about seeing good enough for caring Received blames Overseeing serious symptoms Corona pandemic	– Allowing emotions – Dying and death – Talking with family Coordination and arrangement – Further telephone calls and individual Counselling – Clarifying conversation with a person – Videoconference with daughter Signposting and referral – Psycho-social services, psycho-oncology – Hospice volunteer service
	Inner personal conflicts	Talking about own fears and worries Wants to enable dying at home, worries to be overburdened Wants to be a good carer, experiences too much responsibility Wants to be present, but withdraws herself Needs somebody to talk, but social network missing Worries, if delineation is right strategy in her situation Feels guilty because she thinks dying would be a salvation
Your financial, legal or work issues (38 entries)	Care allowance	Notification missing Missing documents Care level assessed too low, needs to be increased	Advice and information – Care allowance, hospice leave – Legal, financial support – Financing options Counselling – Working situation Signposting and referral – Social worker – Case and care management
	Work issues	On leave until January, what happens then? Concerns about late payment for hospice leave Possibilities to reduce working hours Wish to discuss if care leave or quit job is better
	Financial issues	Money for caring aids, bathroom remodelling Information about subsidy application live-in care Co-insured with patient—what happens after death? Do not know password of savings book any more Care financially difficult to manage
Looking after your own health (23 entries)	Individual health problems impacting on caring tasks	Needs surgery Needs rehabilitation after health issues Needs medical appointment Suffers from epilepsy, might be a challenge Suffers from stomach pain Feels physically exhausted Has problems with thyroid Gets increasingly sad Cannot lift heavy after disc surgery Has neurological problems	Advice and information – Respite care – Inpatient care – Hospice volunteer service – Psychological help – Creating care network Counselling – Importance of own health – Resources and limits – Attending medical appointments – Talking with family
	Health related questions	Worries about genetic disposition Use of sedatives for sleeping
Getting a break from caring overnight (14 entries)	Availability and worries	Does not know whom to call during night hours Burden by sleep deficiency Does not sleep well, looks several times after patient Worries, patient will stand up during the night Worries, not to hear patient during sleep	Advice and information – Live-in care – PHC Team availability 24/7 – Sensor pad – Involving family Counselling – Reassuring
Practical help around the home and elsewhere (10 entries)	Household chores	Need for help in the household (not specified)	Advice and information – Involving family, neighbours Coordination and arrangement – Household service
Your beliefs or spiritual concerns (7 entries)	Believing and pastoral care	Irritation, because patient asks for a priest, without believing Irritation, because patient do not want a priest, despite believing Thoughts about life after death	Advice and information – Availability pastoral care, priest – Anointing of the Sick Counselling – Faith, belief – Expectation, wishes, concerns