Table 5

‘Enabling’ domains: support for carer to care for the patient in their role as ‘co-workers’

Domains of
support needs
Key aspects of support identified in the interviews/focus groups with carers
Met needs/unmet needs with…Supportive input (received or needed)
Providing personal care for your relative
  • managing/helping patient with ADLs: (getting up in the morning/to bed at night, dressing and undressing, washing/bathing/showering, toileting—both in the day and at night, managing incontinence, dealing with soiling, managing catheters, all aspects of mobility: lifting or moving including in bed, managing patient falls, feeding the patient, including avoiding loss of weight)

  • understanding changes in mobility/movement as disease progresses

  • strain of being the only person the patient permits to help with ADLs

  • being able to give carer perspective when patient is not being fully honest about how he/she is managing

  • managing the cost of paying for private carers

Advice and information:
  • anticipatory guidance on how to manage ADLs

  • proactive advice on getting carer team input with personal care and how to access care services

  • on completing forms for continuing healthcare

  • from continence service

  • practical tips for managing outside the home,for example, how to access a radar key for disabled toilets

Education/training—needed from ‘day one’:
  • lifting and handling

  • how to do a bedbath; washing/cleansing to deal with incontinence and soiling

  • hygiene requirements for managing catheters

  • individualised dietary advice appropriate to the carer’s situation

Directly delivered input:
  • provision of equipment by different agencies (local councils, MNDA) and professionals (such as OTs) enabling carers to provide personal care, for example, sliding boards, hoists, commodes, and so on

  • help from professional care team with showering and getting patient up/to bed but requires continuity and reliable timing

  • private care assistants to do personal care

  • care packages from continuing healthcare

  • DN assistance with changing catheters

  • regular contact from DN team to see how carer was managing

  • help from neighbours when patient falls

  • help from ambulance service with lifting

  • short-term ‘emergency’ care team four times/day for 1 week on leaving hospital

Equipment to help care for your relative
  • understanding and using different types of equipment to help manage the patient’s illness

  • accessing specific pieces of equipment/aids including walking aids, seat raisers, wheelchairs, commodes, shower stools, perching stools, manger air cushions, fold up chairs that goes in car, hoists, hospital beds, special cups, special cutlery, zimmers, walking trolleys, walking sticks, hand rails, boogie board, iPads with predictive text.

  • making adaptations to the home to help with managing the needs of the person with MND: including putting in showers, wet rooms, raised toilets, full lifts, stair lifts, outside ramps

  • managing cost implications of paying for equipment/adaptations to respond to immediacy of the patients’ needs

Advice and information:
  • anticipatory guidance from HCPs on types of equipment likely to be needed during the illness

  • agencies providing different equipment (locally): therapy services, local councils, MNDA

  • website for ordering equipment accessible by carers

  • MNDA grants to help with the cost of equipment

Education/training in use of a range of equipment:
  • such as hoists, sliding mats

Directly delivered input:
  • timely referral by MND nurse to Occupational Therapist (OT) at local council for input

  • a named OT visiting regularly to review equipment needed

  • services taking account of patient/carer preferences in equipment provided

  • equipment actually wanted: for example, a hospital bed may not be a supportive input for all carers

  • equipment actually needed: for example, iPad may not help when family already has one

Managing your relative’s symptoms including giving medicines
  • managing patient symptoms: (difficulties swallowing, choking, excess secretions/saliva, breathing difficulties/shallow breathing, panic attacks, terminal agitation in the end stages)

  • using different appliances to manage symptoms including Cough Assist, suction, respirators, PEG or RIG tubes

  • dealing with responsibility for managing RIG

  • feeling helpless during a choking episode

  • managing reluctance of patient to take drugs to help with panic attacks

  • administering medicines down the feeding tube

  • accessing specialist nutrition for patient each month

Advice and information:
  • how to manage a choking episode

  • breathing problems in an emergency from ambulance service/paramedics

  • how to handle better a panic attack

  • managing communication difficulties

  • contacting the feeding company if any problems

  • managing PEG/RIG including using it to provide patient’s nutrition, cleaning it/preventing infection, clearing any blocking of the tube

  • fitting of a feeding tube prior to start of choking episodes

  • managing the patient’s respirator

  • using Cough Assist

Directly delivered input:
  • provision of oxygen in the home

  • having an efficient delivery system of specialist nutrition so that correct prescription is supplied

  • initial supervision of carer managing PEG/RIG, including when the patient returned home

  • GP help in getting medication in liquid form

  • drugs to assist carer dealing with patient panic attacks

  • local administration of Botox injections to dry up saliva rather than a 5-hour round trip to main hospital

  • setting up syringe driver to settle patient at end stage

Knowing who to contact if you are concerned about your relative
  • confusion over which professional does what and which part of the NHS they are from

  • ensuring correct details for night-time contacts

  • dealing with changes that occur and help that is needed

  • accessing MND expertise in an emergency situation

  • potential situation of carer becoming ill/has an accident/dying and patient being unable to raise alarm

Advice and information:
  • Most basic—a contact number (available 24/7, not just office hours, in primary care/GP surgery, if an answer-machine—a timely response to the message)

  • a‘contacts’ book—of numbers of HCPs including who does what

  • An emergency contact for example,‘Carers First’—provides a number the patient can ring if something happens to the carer and they organise a care team to come

Having responsive contact:
  • a person to talk to/have a conversation (who understands the caring situation in MND; who knows how to access help; to visit at home to facilitate further support and provide continuity)

Proactive contacts:
  • at regular times along the caring journey

  • a checking system in late stages of MND to ensure carer is alright

Talking to your relative about his/her illness
  • dealing with the patient’s reaction to the diagnosis,for example, denial, threats of suicide

  • patient’s refusal to let people know about the illness

  • patient’s refusal to talk about their (joint) situation of living with the disease

  • understanding the patient’s situation/mental well-being separate from the clinical condition

  • being able to discuss with the patient, the carer’s role in providing care

  • with carer’s own denial of the diagnosis

Directly delivered input:
  • an opportunity to talk about their situation as a carer

  • regular visit by MND nurse just to talk with patient and carer about their situation

  • to a counselling/support group for patient and carer

  • of the patient for counselling (was a support for the carer)

Understanding your relative’s illness
  • understanding the different stages of the illness including which stage the patient is currently at

  • understanding the speed of progression of the illness

  • knowing the restrictions of the disease

Advice and information:
  • initial general information about MND (usually from MNDA)

Directly delivered input:
  • an early (proactive) contact by healthcare professional for discussion following shock of the diagnosis

  • consultations with a person who understands MND to answer questions: specialist nurses, GPs, community matrons

  • a separate explanation to the carer about the disease they are dealing with to sensitise them to the changes

  • carer/consultant consultation to ask questions without patient present

Knowing what to expect in the future
  • fears/worries about managing next stage of deterioration

  • ambivalence of wanting to know about the future

  • talking about the dying process

  • preferred place of care discussions

  • treatment decisions (do not resuscitate (DNR)—with patient and carer and their situation as a couple, patients’ decision on DNR/or not, refusing treatment, respect from hospital about DNR signed by the patient)

  • dealing with the unpredictability of prognosis

  • understanding the proximity of death

  • issues arising after the death (moving the body after death, funeral arrangements)

Advice and information:
  • symptoms to expect as patient deteriorates

  • illness trajectory (some relied on discussion of patient symptoms in clinics as a clue to progression)

  • realistic prognosis including preparing for a short prognosis

  • signs of dying

  • services providing support like hospice at home

Directly delivered input – pro-actively:
  • revisiting what to expect over the course of the illness, not just a one off.

  • advance care planning discussions to put support in place when needed

  • DNR and advance refusal of treatment discussions as part of care from GP

  • from OT service on equipment likely to be needed

  • visits from the carers’ centre to discuss ‘what the future holds’

Openness by HCPs to talk when family ask:
  • honesty about what death involves

  • that time of death is close so family can prepare and be present

  • ADL, activities of daily living; DN, district nurse; DNR, do not resuscitate; GP, general practitioner; HCP, health care professional; NHS, National Health Service; OT, occupational therapist; PEG, percutaneous endoscopic gastrostomy; RIG, radiologically inserted gastrostomy.