Table 1 Enabling domains - support needs & support measures
CSNAT-domain (main category) | Subcategories | Caregivers’ unmet needs | Supportive input/action plan |
|---|---|---|---|
Managing your relatives symptoms and medication (86 entries) | Dealing with symptoms | Pain Management (patient does not call attention to pain; confusing expression of pain; insufficient pain relief) Swallowing problems Fear of choking Unstable trajectory Problems with eating Sleep disorder Patient‘s behaviour (reacts harshly; does not speak; neglects side-effects) Worries about missing something | Advice & information – Medication and their administration (indication, effects and side-effects, medication plan, medication on demand, monitoring medication, discontinuing medication) – Emergency behaviour (emergency plan, emergency kit, administering emergency medication, when referring to hospital, measures against panic attacks) – Symptom control (Pain, restlessness, appetite and nutrition, oral care, dying process, symptom control via body language, tips for calming down, breathing exercises) – Technical information Coordination & arrangement – Regular phone contact with FCG – Planning pro-active asking for uncertainty – Establishing emergency management – Establishing PCA pump or other devices – Providing medication plan – Preparing medication Education and training – Administering medication – Performing subcutaneous injection – Handling PCA pump, port system – Acting in case of emergency Signposting & referral – Appointment with doctor, service provider |
Dealing with medications | Prescribed medication not sufficient Patient or FCG reject medication Problems taking medication Uncertainty preparing and administering medication More information and training required Support through health service required | ||
Emergency management | Dealing with panic and fear attacks Dealing with bleeding Patient isn´t able to speak | ||
Technical problems | Pump handling Handling devices | ||
Knowing what to expect in the future (58 entries) | Fears & challenges | Fears about future development Fears about what will happen Questions about what will happen Patient refuses options, FCG fears what will happen Patient don’t want to live anymore, spouse very sad Wonders, if she will manage everything | Advice & information – Additional services & help – Illness trajectory, symptoms expected – Dying & death: signs, duration, rituals – What to do after death – Symptoms, eating/drinking, breathing, care, emergency Counselling – Reassuring – Fears and uncertainties Coordination & arrangement – Emergency plan – Time resources for counselling Signposting & referral – Live-in care – Nursing home |
Dying & death | Questions, when death is to be expected Questions, how dying is like Knowledge, which symptoms will be expected | ||
Specific questions | Wants to be very well prepared for future Wants to get to know preventative measures Wishes that patient gets to know inpatient palliative care unit Needs more information on very fast deterioration | ||
Understanding your relative´s illness (47 entries) | Knowledge about the illness | Wants to know how things are going with his wife, why she is no longer receiving treatment, where the metastases are Requires knowledge about illness trajectory Does not feel sufficiently informed in general | Advice & information – Limited lifetime, illness trajectory, symptoms – Writing down questions Counselling – Need for talk with doctor – Commitment for support Coordination & arrangement – Round table with family & professionals Signposting & referral – Doctors, hospital |
Knowing who to contact if you are concerned about your relative (41 entries) | Availability of health care professionals | Availability during night and weekends Availability in case of emergency, fall, deterioration Availability of family doctor or PHC team Burden, nobody was available in the evening | Advice & information – PHC Team availability 24/7 – Emergency phone numbers – Responsibilities of care providers – Using baby phone Coordination & arrangement – Additional appointments – Forming formal & informal network – Emergency bracelet |
Finding the right support | Whom to ask for specific medical and caring questions | ||
Providing personal care for your relative (44 entries) | Difficulties, ambiguities within the family & others involved | Worries about increasing caring needs Patient very self-determining Difficulties performing caring tasks Cooperation with community care, doctor Patients only wants to be cared for by spouse Grandson doesn’t want to perform caring tasks | Advice & information – Suggesting further services, medication, equipment Counselling – Fears, uncertainties on bodily caring – Communication problems Coordination & arrangement – Equipment, training – Coordinating various providers Education/Training FCG & other HCP – Oral care – Incontinence care – Mobilisation – Stoma, port, wound care – Handling equipment Signposting & referral – Care & nursing services |
Burden, overload | Burdened with increasing caring needs Need for assistance in personal care tasks FCG is moving away | ||
Particular caring tasks & equipment | Questions about personal care, skin care, mobilization Problems changing incontinence pants, handling body chair Handling diarrhoea at night | ||
Equipment to care for your relative (26 entries) | Obtaining equipment | Talking about thoughts obtaining equipment Discussing need of emergency contact button, nursing bed, toilet chair, roller walker | Advice & information – Equipment obtainment, use – Payment – Clarifying who organises, who gets it Coordination & arrangement – Equipment – Training |
Accessing equipment | Knowing were to get equipment Financing of equipment Problems in accessing equipment | ||
Use of equipment | Uncertainty and questions using equipment | ||
Talking with your relative about his or her illness (26 entries) | Illness knowledge | Patient doesn’t know much about prognosis 2 of 3 children don’t know about the seriousness of the illness | Advice & information – Developing family plan – Psychosocial support – Offers to talk with FCG, patient, children – Round table Counselling – Listening, reassuring, relieving – Allowing emotions – Dying & death – Talking with family Signposting & referral – Doctors, hospital |
Illness perception | Patient doesn’t accept illness Patient hopes for healing, FCG has difficulties talking about dying Patient thinks he can do everything by himself Difficulties to accept patient´s treatment decision Change of character causes conflicts | ||
Arranging conversations | Wish for a conversation between doctor and patient Seeking contact to a self-help group | ||
Talking about dying & death | Patient wants to talk, sons not Daughter does not dare to talk about, wishes to get help from HCP Feels alone choosing treatment options Does not know how to respond to patient statements Problems to talk about deterioration Child cries, doesn’t want to talk with patient about illness Patient talks about dying, FCG can’t cope |