EMOTIONAL WELLBEING TOOLKIT

Overview

Psychosocial wellbeing is central and integral for long term adjustment to spinal cord injury (SCI) and should be centre stage not only during the rehabilitation phase but beyond.

“Psychosocial issues are everyone’s business”

Let’s make every interaction count

Aims

• To educate and provide guidance about a client's psychosocial presentation, and your assessment using brief evidence-based, validated and standardised screening tools.
• To improve understanding, competence, knowledge and management (including referral) of psychosocial issues following SCI and to emphasise the critical role you have in assisting clients negotiate their SCI journey.
• To help when you are concerned about a client and need more information before deciding whether to refer a client to a specialist practitioner.
• To help you devise a plan for your engagement around a specific issue using the helpful and unhelpful tips.

SCI Model of Adjustment

Adjustment occurs when a person responds adaptively to the injury by modifying their behaviour, thinking and personal circumstances to achieve a satisfactory quality of life and resume a desired social role.

Adjustment is cyclic and is how people cope with the challenges and stressors involved in adjusting over time to an SCI.

Challenges will be managed based on resources available, the current and premorbid stressors and modifying factors. This will affect their perceptions and beliefs and will thus determine their choice of coping strategies, which will impact their adjustment in positive or negative ways.

When a client receives feedback following the success or failure of dealing with a problem, this influences future actions, leading to a continuing process of adjustment (either positive or negative).

Reactions to spinal cord injury: grieving vs depression

• In the acute phase, attempts to make sense of what has happened are the focus; the impact on their life, view of themself and their role within the family, work and social networks.
• Everyone responds differently to an SCI.
• It is normal, expected, and appropriate for clients to experience a range of emotions including; shock, grief, denial, anxiety, helplessness and immense sadness and anger.
• The intensity, sequence, duration, and expression of these emotions will vary. There is no common pattern or correct sequence of emotional responses, no right or wrong and no correct time for experiencing any given emotion.
• A major depressive disorder is not a normal, necessary or an essential part of the process of adjustment to an SCI. It indicates that a person is distressed and not coping well.
• The presence of depression is not related to the level or degree of injury.
• The grieving reaction may appear like depression but unlike depression will dissipate over time as the client learns to live with an SCI
• Grieving may also present with physical complaints, preoccupation with a former self-image, feelings of guilt, anger or irritability and behavioural changes, such as avoiding social activity.
• A grief reaction is characterised by a focus on loss, e.g. paralysis and the accompanying secondary emotional reactions. Coping with the losses that come with SCI and altered quality-of-life.
• In a reactive depression, the focus is self-critical with feelings such as self-worthlessness, hopelessness, helplessness, and withdrawal from others.

Tips for dealing with new SCI

Do

• Keep the concerns of the client and their family at the centre of your care.
• Listen, empathise, give comfort and support.
• Encourage a sense of hope.
• Let your client know it is ok to talk about painful things.
• Help your client to make sense of their experiences and reassure them that what they are feeling is normal.
• Support your client to develop an understanding of the injury or illness and the process of rehabilitation.
• Encourage your client to do things that they might enjoy.
• Promote self-care activities.
• Improve privacy for your client where possible.
• Encourage your client to use their supports and acknowledge their resources.
• Encourage opportunities for your client to contribute to decision making and problem-solving.

Don't

• Think that you need to have any of the answers.
• Rush to fill the silences.
• Give advice.
• Say ‘don't worry’, ‘time is a great healer’ and so on.
• Avoid difficult conversations with your clients in case they become sad, distressed, angry or cry.
• Assume that the person is always like this.
• Assume that distress is a sign of character weakness, mental illness.
• End the conversation just because they are tearful.
• Try to become a grief counsellor; refer the person to a mental health professional if necessary.

Depression

Tool 1: Patient health questionnaire-2 (PHQ-2) for depression

If you feel concerned that your client's mood is low or communicating less and they do not seem to be able to enjoy anything, use the following questions from the PHQ-2 to test your concerns.

Scores of ≥3 indicate increased risk of depression and should be investigated further by a mental health professional.

Actions

1. Document your use of the PHQ-2 and record the score.
2. If the score is three or higher, refer to a general practitioner (GP) or mental health professional for further assessment.
3. Follow up the referral in two weeks.

Tips

It is often difficult to help someone experiencing depression.

It is helpful to:

• talk about how they are feeling
• be present while you attend to your client, maintain eye contact and remain relaxed
• listen to what they are saying without being judgmental
• the optimistic and reassuring
• allow a little extra time
• provide information in small chunks to avoid overwhelming
• talk slowly when asking questions
• acknowledge that they seem a bit ‘flat’
• check that you have understood what they have said.

It is unwise to:

• rush your client
• present information to quickly
• overwhelm them with too much information
• pressure them to snap out of it, or cheer up
• stay away and avoid them.

Anxiety

Some anxiety is expected following an SCI because the client is dealing with change and a lot of new situations and experiences. For some the anxious feelings become overwhelming. An anxiety disorder is a serious condition, which disrupts the ability to cope from day to day.

Anxiety reactions

• Feeling tired constantly
• Feelings of panic and tension
• Difficulty explaining concerns or problems
• Difficulty following your response
• Getting angry or easily frustrated
• Wanting to finish the discussion before the issue is solved.

Tool 2: Generalised anxiety disorder (GAD) scale for anxiety

If you are concerned about your client’s level of anxiety you might ask the following questions from the GAD scale.

Scores of ≥3 indicate increased risk of anxiety and should be investigated further by a mental health professional.

Actions

1. Document your use of the GAD and record the score obtained.
2. If the score is three or higher, refer to a GP or mental health professional for further assessment.
3. Follow up the referral in two weeks.

Tips

It is helpful to:

• allow the person to take their time
• use a calm and reassuring tone of voice
• acknowledge that it may be difficult for them to talk about the concerns
• listen carefully and ask questions to let them to resolve the situation.

It is unwise to:

• rush them
• interrupt with your assumptions about their problem (this can compound their anxiety or make them angry)
• use a tone of voice that suggests you are bored or irritated if they are unable to explain the situation
• show frustration if they are unable to make a decision.

Post-traumatic stress disorder

Many people become distressed after a traumatic event but most recover on their own. A few people remain stressed and anxious and avoid reminders of the trauma. Those people may find it difficult to relax, have upsetting dreams or flashbacks of the incident, experience emotional numbing and a sense of helplessness. This may indicate that they have post-traumatic stress disorder (PTSD).

Tool 3: Primary care screen for post-traumatic stress disorder

The following screen can be applied if you are concerned that an individual has PTSD.

Scores of ≥3 indicate increased risk of PTSD and should be investigated further by a mental health professional.

Actions

1. Document your use of the PTSD primary care screen and record the score obtained.
2. If the score is three or higher, refer to a GP or mental health professional for further assessment.
3. Follow up the referral in two weeks.

Tips

• Encourage your client to discuss their feelings with people who understand
• Allow your client to talk; talking is a natural healing process and will assist with acceptance
• Remind your client that they are safe now and that the event is over
• Encourage relaxation, listening to music, meditation and progressive muscle relaxation or breathing exercises
• Suggest your client write about their feelings if they are unable to talk about them
• Remind them that it is natural to feel rotten after an extremely stressful event, but suggest they remember their strengths because ‘even though it's tough, you can deal with it’
• Encourage your client to cut back on tea, coffee, chocolate, soft drinks, and cigarettes as these substances will increase feelings of anxiety
• Discourage the use of drugs or alcohol as a way of coping as they can lead to more problems in the long-term
• Identify sources of support and facilitate support from others (such as partners, friends, family, work colleagues, peers) helpful social support is critical for improving one's ability to cope after a trauma.

Pain

Pain is major problem affecting at least 65% of people with an SCI. Pain may have a serious impact on quality of life; affecting sleep, reducing a person's ability to look after themselves and causing low mood. Some symptoms of pain are often called ‘nerve pain’. This does not mean that there is anything being damaged, rather it is a symptom of change in the central nervous system.

If you are concerned about the pain levels your client is reporting, the following questions may be useful to establish whether a referral or further investigation is necessary.

Tool 4: Pain basic data set (short form)

Actions

1. Document your use of the pain basic data set, and record the score obtained.
2. Arrange further investigation by an appropriate health professional, as any report of interference with day-to-day activities, mood or sleep is significant.
3. Follow up the referral in two weeks.

Tips

• Encourage your client to maintain regular activity despite the pain
• Help your client to break their activities into manageable chunks and plan for regular rest breaks
• Encourage your client to plan ahead and prioritise activities so that they do what is most important and include enjoyable activities
• Help your client to understand the benefit of establishing a regular pattern of pain medication use, rather than waiting until the pain levels become high
• Encourage planning for dealing with days when the pain is worse; share this information with family and carers so that they can help
• Encourage your client to speak with a mental health professional about mindfulness, this is a simple and very effective strategy with proven benefits for neuropathic pain
• Encourage avoidance of drugs or alcohol to cope with pain as this may lead to more problems in the long-term, such as increased tolerance and dependence on substances.

A multidisciplinary assessment is recommended to obtain a thorough understanding of a client's pain.

Psychosis

Are you worried about odd behaviour changes? If your client is confused, avoids people, or has developed delusional or strange ideas not shared by others, they may be experiencing psychosis. It is important that a mental health professional such as a psychiatrist follow this up.

Refer to a medical officer if your client exhibits, or reports, any of the following symptoms, as they may indicate a psychotic disorder.

• Stopped talking to family and friends
• Has become afraid or suspicious for no reason
• Poor sleep or is often awake much of the night
• Developed strange ideas
• Hearing voices no one else can hear
• Believes they have special powers
• Difficulty concentrating
• Saying or writing things that don't make sense
• Using alcohol or other drugs.

Tool 5: Psychotic disorders mini screen

If you are concerned about someone's behaviour you might ask the following questions.

Scores ≥ 1 indicate increased risk of psychosis and should be investigated by a mental health professional.

Actions

1. Document your use of the psychotic disorders mini screen, and record the score obtained.
2. If the score is 1 or 2, refer to a GP or mental health professional for further assessment.
3. Follow up the referral in two weeks.

Alcohol use

If you are concerned about alcohol consumption, ask the client to answer the questions in terms of standard drinks. For example, one standard drink equals 100ml of sparkling or still wine, 425ml (schooner) of light beer, 285ml (middy) regular beer and 30ml (nip) of spirits.

Tool 6: AUDIT-C for alcohol use

Scores ≥6 indicate an increased risk of harm and should be investigated further by a relevant health professional.

Actions

1. Document your use of the AUDIT-C, and record the score obtained.
2. If the score is ≥6, refer to a GP or mental health professional for further assessment.
3. Follow up the referral in two weeks.

Illicit substance use

If you are concerned about your client’s behaviour, you might ask the following questions and/or use the following tool to guide a further referral.

• What are your prescribed medications?
• Are there times when you take more of these medications than prescribed? If so, how many do you take, can you tell me what was happening for you at the time?
• How frequently are you taking these additional medications?
• Do you use anything else on top of these medications?

Also use the mini screen for illicit substance use, by asking following questions.

• Say you are going to read and a list of street drugs or medications.
• Ask ‘In the past 12 months, did you take any of these drugs more than once, to get high, to feel better or to change your mood?’
• Ask for a yes/no answer as you read the list.

TOOL 7: Mini Screen for Illicit Substance Use

Note each drug taken

Scoring

Add up the number to which they respond ‘yes’.

Scores ≥1 indicate need for further investigation by relevant health professional.

Actions

1. Document your use of the illicit drug use: mini screen, and record the score obtained.
2. If the score is one or higher, refer to a GP or mental health professional for further assessment.
3. Follow up the referral in two weeks.

Facts about traumatic brain injury and SCI

• The short and long-term effects of a traumatic brain injury will depend on the location in the brain and the extent of the damage. Each person is different: their pre-injury personality, intelligence, education, and other life factors will affect their recovery and long-term prognosis.
• Poorer psychosocial adjustment has been found among SCI clients with cognitive deficits compared to SCI patients without cognitive deficits. After a head injury, symptoms of fatigue, impaired concentration and memory deficits are common and may complicate rehabilitation tasks.
• Clients with SCI may appear unaware of their situation and may lack many common symptoms of grief and adjustment. This may be misinterpreted by staff as representing a purely psychological process, such as denial, when in fact they may have a more serious brain injury.

Short term effects following a traumatic brain injury

Physical

• Balance problems
• Blurred or double vision
• Dizziness
• Headaches
• Nausea
• Seeing stars or lights
• Sensitivity to light or noise
• Tinnitus
• Vomiting.

Behavioural and emotional

• Anxiety
• Depression
• Difficulty falling asleep
• Drowsiness
• Fatigue
• Irritability
• Lethargy
• Sleeping more than usual.

Cognitive

• Difficulty concentrating
• Difficulty remembering
• Feeling in a fog or dazed
• Feeling slowed down.

Post-traumatic amnesia

• Post-traumatic amnesia (PTA) is a loss of memory and an inability to create new memories following a head injury.
• Length of time in PTA is defined as the ‘length of time from the moment of injury until continuous memory returns’. Includes any period of unconsciousness, confusion and disorientation.
• There is considerable evidence to suggest that longer periods of PTA are associated with problems in cognition, motor ability, functional deficits, and poorer prognosis.

PTA is characterised by one or more of the following symptoms

• Confusion, disorientation and behavioural disturbances
• Reversed sleep/wake cycle
• Restlessness, thrashing, needing to wander
• Aggression and/or agitation
• Combative behaviour, for example, pulling at tubes
• Moaning, calling out, child-like behaviour
• Disinhibited or inappropriate social behaviour
• Fear and paranoia
• Over sensitivity to light
• Fatigue
• Decreased attention and/or concentration
• Fixation on a single topic
• Lack of continuous memory, for example day-to-day memory.

Management of clients in PTA

• Ensure a consistent team approach to create and maintain a non-stimulating quiet and supportive environment.
• Create a familiar environment using personal objects and photographs.
• Where possible, provide them with a single room that is safe and secure.
• Reduce external stimuli: TV, radios, bright lights, loud noise, and clutter.
• Create a consistent environment with routine and structure.
• Monitor visitors, restrict them to one or two at a time and for short periods.
• Do not allow the patient to become over-stimulated.

Facts about SCI and suicidality

• Thoughts of suicide are common after SCI, as the individual attempts to process the reality of their injury. Individuals may think, or openly talk, of death or suicide (such as ‘I’d rather be dead, I have no life now, I want to die’).
• Clients mentioning suicide can be distressing for carers and staff, however very few clients in the acute or rehabilitation phase go on to suicide.
• Clients considering suicide usually feel isolated and alone. They may feel that nobody can help them or understand their emotional pain. When they are unable to see any other way of dealing with the situation, suicide may feel like they're only option.
• Clients considering suicide often give clues about their thoughts and feelings, such as talking about feeling hopeless, helpless or worthless. This may mean that they are thinking along the lines of: ‘There’s not much point going on’, I might as well give up now, I’ve had enough’.
• Factors that help protect a client from self-harm or suicide include: strong perceived social supports, family cohesion, belonging to a group, having good coping and problem solving skills, positive values and beliefs, and the ability to seek and access help.

Tips

It is important to:

• be aware of suicidal thoughts
• take threats of self-harm seriously
• be aware of your organisation’s protocol on self-harm or suicide and the NSW Health framework for suicide risk assessment and management for NSW Health staff.
• follow up a suspected suicide risk by asking if your client is feeling suicidal.

It is helpful to:

• stay calm
• ask directly ‘Are you having any thoughts of harming or killing yourself?’ if there are indicators that your client may be considering self-harm or suicide
• if you are talking to them on the phone, find out where they are calling from and take down their name, phone number and where they are
• acknowledge their sadness and despair (say ‘I can hear that you are very upset’)
• state your concern and that you are prepared to listen (say ‘I am worried about you and I want to help’ or ‘I’m concerned about what you were saying’. Take your time
• accept what your client is telling you
• let them know that you will need to let another professional know about what they have said to you in order to get them help
• let them know you are unable to keep it a secret
• if you are in anyway unsure about how to handle this, refer to a senior staff member or colleague (say ‘I'm not sure if I'm the best person to help you any further. I think that [name of colleague] will be able to help you with this situation. If it's alright with you I organise for them to see you/speak with you’)
• contact the ‘on call’ or liaison psychiatrist (inpatient facility) or the local community mental health crisis team
• afterwards, debrief with your manager and senior staff members and document
• follow your organisation’s incident reporting guidelines relating to threats of suicide or other self-harm.

It is unwise to:

• panic
• sound shocked by anything that they tell you
• dismiss or belittle the problem
• joke about suicide
• try to cheer your client up
• assume that the situation with resolved by itself
• keep it a secret.

Interactions with others

No matter the setting, these interactions can sometimes be very challenging, both in hospital and in the community.

Clients experience a wide range of emotions following SCI, due to both physical and psychosocial factors, and may sometimes seem uncertain, unhappy and demanding. They may appear unreceptive and unwilling to hear or understand what you say and they may be antagonistic.

Tips for managing challenging behaviours

• It is important to remember that all interactions between people are two-way, and each person is influenced by what the others says and how they react.
• Being aware of your own responses to challenging behaviour is helpful.
• How you speak and what you say when you respond to challenging behaviour is important.
• Understanding the source of difficulty and emotional reactions can be helpful.
• In difficult situations, knowing how to manage your own, and other people's reactions will help you achieve positive outcomes.

PEARLS

• P – Partnership: ‘let’s work together’
• E – Empathy: ‘that sounds hard’
• A – Apology: ‘I am sorry for...’
• R – Respect: ‘I appreciate you’re…’
• L – Legitimisation: Anyone would be…’
• S – Support:– ‘I’ll stick with you’

Socially inappropriate behaviour

It is helpful to:

• remain calm
• redirect the client's attention to the task you are working on
• if possible, ignore the behaviour by focusing on the task, not giving eye contact
• if the behaviour makes you feel uncomfortable, tell them immediately that it is unacceptable, (say ‘sorry I feel uncomfortable when you say that’)
• set limits on your interaction by clearly stating that the behaviour is unacceptable (say ‘Mr Smith, I don't think that behaviour is appropriate’)
• give attention to appropriate behaviour
• talk to your supervisor or manager about what happened
• follow your organisation's incident reporting guidelines.

It is unhelpful to:

• laugh and giggle
• make jokes or dismiss comments that show you are paying attention to the behaviour
• make derogatory comments that put the client down
• make inappropriate comments yourself as this gives mixed messages.

Intoxication

It is helpful to:

• be patient
• listen to their concerns and provide brief information
• minimise the number of people involved
• get backup if you feel you need it
• assure them that you will talk about it later when everyone has calmed down.

It is unhelpful to:

• ask them if they are drunk or on drugs
• expect them to be rational
• become angry or upset.

Uncooperative behaviour

It is helpful to:

• listen first to understand your client’s perspective and concerns
• ask questions, such as ‘what do you think is a fair way to deal with this situation?’ or ‘how can I help you to resolve this problem?’
• let them know what you can do to help
• if they continue to insist on something that is unreasonable or that you can't deliver, repeat this (gently yet firmly) several times until they hear you
• use reasonable language and try to stay calm
• agree on an action plan that includes the things that you will do and the things that they need to do
• refer the person to your supervisor or manager if you are unable to resolve the problem.

It is unhelpful to:

• let the person's attitude and concerns become your problem
• become flustered
• show your frustration in your gestures, voice tone and other signals
• talk over the person
• raise your voice or shout
• withhold items.

Aggressive behaviour

It is helpful to:

• let your client speak
• listen carefully to the reasons for their anger
• show you are listening carefully by sitting or squatting to their wheelchair level, using nods, making eye contact, using a soft tone of voice, having your arms open
• acknowledge that they are upset or frustrated (say ‘you seem to be quite upset’)
• if applicable apologise for errors made by your organisation
• show that you are listening by clearly summarising the complaint in your own words
• assure them that you are interested in helping them to resolve the issue
• ask questions (say ‘Can you tell me a bit more about what happened?’).

It is unhelpful to:

• tell your client to calm down or ‘get a grip’
• raise your voice
• interrupt
• try to complete their sentences for them
• promise something that you know you can't deliver
• use the word ‘but’
• ignore them
• use punishment.

Confusion and dementia

Confusion is related to loss of orientation (knowing where the person is, who they are, the time, the date) and is often accompanied by memory loss and other cognitive changes.

It is helpful to:

• listen carefully with sincerity and understanding
• reflect their emotion
• speak softly and slowly (be mindful of hearing difficulties)
• practice patience if a person is repeating themselves
• provide reassurance for as long as needed
• be clear and simple with your instructions, and give them time to respond if they are struggling
• ensure that the environment is quiet, reducing background noise and distractions
• find a family member or carer to assist if they are struggling to comprehend you
• consider if they are more acutely confused than usual and may have behavioural changes, it might be a delirium which is a serious medical illness, contact their GP to review their health immediately, or go to the emergency department of your local hospital.

It is unhelpful to:

• correct them
• patronise them as if talking to a child
• get angry and speak with a loud voice
• appear frustrated and agitated if they are struggling to make a decision.

What is sexuality?

• Sexuality guides our natural desire to bond with others through love, affection, and intimacy, and is expressed in a number of ways.
  • Emotional intimacy – feeling close to someone, connection that results in feelings of self-satisfaction, confidence and self- worth.
  • Physical intimacy – touching, such as holding hands, hugging, kissing, cuddling, and sexual activity.
  • Sexual identity – how you think and feel about yourself, body image, self-concept, self-worth, self-perception, desires for the opposite sex, same sex, or both.
  • Gender identity – the gender you feel you are ‘inside’ (your body may or may not match the gender you feel you are).
• Loss of movement or sensation does not change the fact that a person with an SCI is still a desirable sexual being. Sexual function and intimacy remain important.

Anatomy and physiology

• Sexual function is a complex interplay of signals between the skin, sexual organs, nerves that carry messages, the spinal cord and the brain.
• After SCI, changes to sensation, sexual arousal, erection, lubrication, orgasm and fertility are common and will depend on the level of injury and completeness.
• The spinal cord itself ends at L1 or L2 and divides into a ‘tail’ of nerves. These sacral nerves are important for sensation to the genitals, for erection and ejaculation.

Sexual arousal

Arousal pathway

• Sexual arousal is the body’s response to a desire for sex. This includes an increase in heart rate, blood pressure, breathing rate, and blood flow to the genitals to ready the body for sex.
  • Women – vaginal lubrication to ready the vagina for penetration.
  • Men – erection.
• People without SCI are usually aroused through two pathways.
  • Reflex pathway – Arousal in response to sensual touching.
  • Psychogenic pathway – Arousal from psychological sexual sensations such as sexual thoughts, sights, smells, or sounds.
• Following SCI, one or both sexual arousal pathways may be blocked.
  • Arousal by sensual touching like masturbation, oral sex, and other erogenous zones may develop such as the neck, ears, nipples, and inner thighs.
  • For incomplete injuries, arousal is by psychological and sexual sensations.

Men

• Psychogenic erections begin in the brain with sexually stimulating triggers or thoughts.
  • These are controlled by nerves from T11 to L2.
  • Above T12 – erection will be impaired.
  • Below T12 – erection may be possible.

• Reflex erections are involuntary and occur without sexual thoughts (e.g. with physical contact).
  • Controlled by nerves at S2 to S4 and responsible for ejaculation.
  • Generally retained, but may not be sufficient for penetration.

• Ejaculation
  • True ejaculation is achieved by only a few men following SCI.
  • SCI between T12 and L2 will prevent ejaculation.
  • The ejaculation is often retrograde, that is semen is forced into the bladder instead of the urethra due to poor bladder neck closure.
  • A client with incomplete SCI, depending on the level, may retain sexual functioning however it is altered.
  • SCI above T6, there is the risk of autonomic dysreflexia which is potentially life threatening. Orgasm and ejaculation, rough stimulation of the genital area and use of a vibrator may trigger autonomic dysreflexia.

Women

• Psychogenic arousal (from the brain) results in clitoral engorgement, vulvar swelling vaginal lubrication.
• Reflexogenic arousal occurs with tactile stimulation of the labia and clitoris leading to clitoral erection and orgasm.
• Menstruation, infection or inflammation of the vagina or uterus and the use of a vibrator may trigger autonomic dysreflexia.

Fertility

• Following SCI, some men will not be able to ejaculate during intercourse, which affects sperm quality. Where the ejaculatory reflex is still present, techniques can be used to increase the frequency of ejaculation to maintain semen quality.
• In most women, a brief pause (up to six months) in menstrual cycle after SCI is usual. On return of the menstrual cycle women are fertile.
• Contraception is still required to avoid unwanted pregnancy.

Enhancing sexual function

• Enhancing sexual function involves all aspects of sexual activity, for example preparation, foreplay, general pleasuring (including touching), achieving and maintaining an erection, positioning, oral sex and manual stimulation.
• There are multiple alternatives to enhance sexual function with devices, medications and counselling.
  • Sensual touching in the area of sensation changes (at injury level or just above) may help.
  • Using all the senses will enhance arousal.
  • Use of a vibrator for women. (Note a vibrator may trigger autonomic dysreflexia).
  • Maximise conditions for good sex e.g. adequate sleep, reducing stress and planning.
  • Reducing smoking, alcohol and other medications that will interfere with sexual desire and arousal
  • For erectile dysfunction, the use of oral PDE5 inhibitors, such as Viagra, Levitra and Cialis (seek medical support).

Relationships and intimacy

• Being emotionally ready is equally, if not more important than the physical aspects of sex to having a satisfying relationship.
• Body image changes after SCI will impact confidence and self-esteem.
• Rekindling a physical connection with a partner takes time and exploration.
• Open communication and patience are important for couples.
• Give permission to experiment, with either a partner or on their own. Emphasise having fun and being creative.
• Occupational therapists, specialist counsellors and nurses can provide advice on positioning, equipment and preparations for sex such as catheter and bowel care.

Helpful tips to consider

• Consider sexuality as a team issue and as a positive force.
• It is never too early to introduce the topic and to explore concerns of the client and partner. Consider, age, experience and readiness.
• Discuss sexuality with ease, comfort and openness and if not possible for you recommend another person.
• Be aware of any myths or misconceptions about sexuality that you or your client may hold, as this will hinder facilitating the reconstruction of sexuality following SCI.
• Remind clients that a positive sexual experience after SCI takes time, patience and planning, and can be like having sex for the first time.
• Managing self-care routines before engaging in sexual activity is important but ‘accidents do happen’ at times.
• Remind clients there is no such as a silly question, so just ask!

Overview

• Time affects our bodies, leading to a physical decline. Successful ageing can be enhanced with an awareness of any issues that may arise, and being able to adapt and maintain functional ability.
• Independence is the most important factor for psychological health and this becomes increasingly difficult with age.
• Education about ageing is crucial for healthcare providers, specifically the psychological, social consequences.
• Changes in brain function occurs naturally with age, but SCI does not accelerate this deterioration.

Tips for maintaining psychological health for those ageing with SCI

• Discuss possible changes to expect with ageing with clients to identify preventative strategies to minimise the effects.
• Ensure that general health is maintained with a balanced diet. Monitor weight, blood pressure (in sitting and supine lying), diet, physical activity, smoking and alcohol consumption.
• Look out for signs and symptom of psychological stress and provide quality information and support to people in a timely manner.
• If it is suspected that someone has a significant psychological disorder, refer to a specialist for assessment and treatment whether through medication or psychotherapy.
• Encourage maintaining social connections and being proactive in the community.
• Help identify appropriate physical activity and encourage a hobby or activity.
• Explore the care options, as it recommended that care should not always be provided by a spouse, which may be perceived negatively with increasing age.
• Be aware of risk factors to decrease the risk of falling and to prevent injury.
• Consider introduction of adaptive equipment or technology to help maintain independence for as long as possible, as this is directly related to life satisfaction.
• Decision making and directing care remain important when physical assistance becomes necessary.
• Be sure to engage supervision by an SCI team to identify potential problems at their earliest onset.

Trauma

Psychological trauma is what happens when a person is overwhelmed by stress and feels unable to return to a ‘safe’ state. When this occurs, it may cause lasting harm to the brain’s stress responses, potentially leaving those affected by trauma feeling like they are fighting old dangers years after they have passed.

(‘t’ trauma) - little 't' trauma; Challenges we all expect to face throughout our lives.

• Relationship failures
• Loss of a job
• Death of family or friends
• Immigration by choice.

(‘T’ Trauma) – capital 'T' trauma; Significant single incident events that are life threatening, and largely out of our control.

• Natural disaster
• Robbery and assault
• Terrorist attacks
• Road accidents
• Catastrophic injury
• Seeking asylum.

Complex trauma – caused by adverse childhood experiences. These are experiences that are reported, sustained, extreme and or premeditated.

• Physical, sexual or emotional abuse
• Physical or emotional neglect
• Living with domestic violence
• Substance abuse
• Parental mental illness
• Separation and divorce
• Victims of interpersonal violence as a consequence of war, civil unrest, etc.
• Incarcerated parent.

The more adverse childhood experiences a person experiences, the harder it becomes to develop coping strategies to manage distress. The more stress a person undergoes, the higher the risks for things going wrong in that person's life.

Trauma and SCI

• All clients have different backgrounds, some more traumatic than others. An SCI generates significant distress that may be triggering for some.
• Healthcare staff are experts in treating illness and injury, restoring functioning, and saving lives. They may be less comfortable addressing the emotional and psychological impact of illness, injury, and medical treatment, or feel out of their depth when considering the impact of prior traumatic experiences on an individual’s current medical care.

Neurobiology of trauma

The science of neurobiology tells us that when we are threatened, the primitive brain (the brain stem) disconnects from the thinking brain (the cortex) activating survival mode to either run from (flight), stand (fight), become immobilised (freeze), or collapse (faint). All are appropriate mechanisms to protect from a perceived threat.

• The ‘basement’ represents the ‘freeze’ and/or ‘faint’ reactions to threat. Individuals become hypo-aroused and descend to the darkness of the basement to withdraw or become invisible.
• The ‘attic’ represents the ‘fight’ or ‘flight’ reaction to threat. Individuals become hyper-aroused in the heat of the attic and may run or stand and fight.
• The ‘lounge room’ is associated with peaceful states, with feelings of safety, contentment and connection. Here we make good choices, think, love, learn, empathise, play, explore and communicate feelings.
• People with higher adverse childhood experience scores (67% of the population have more than one adverse childhood experience score) spend significant proportions of their lives either hypo-aroused in the basement or hyper-aroused in the attic.
• Following an SCI, past trauma may be triggered and the distress will present in different forms, for example: crying, arguing, complaining, suicidal ideation, threats, withdrawal, despondency, demoralisation, impulsivity, unpredictable and controlling behaviours and aggression.

Trauma-informed care practice

Best practice advocates caring for clients using a trauma-informed care approach. That is recognising and acknowledging trauma and its prevalence and practicing a sensitivity to its dynamics. This better enables physical, emotional and psychological safety for both survivors and healthcare providers.

We need a shift in mindset from the current thinking

• Concept of problematic behaviour
• Diagnosis via sickness (a mental health diagnosis) or bad behaviour
• Patients viewed as oppositional or non-compliant
• Asking ‘what’s wrong with you?’

To a trauma-informed care approach

• Recovery orientation
• Seeing
• Hearing
• Considering ‘what’s happened to you?’.

Trauma-informed care and practice principles

• Safety
• Trustworthiness
• Choice
• Collaboration
• Empowerment

Develop trust and safety

• Remain calm in your interaction and try to understand what the distress might be communicating.
• Encourage the client to take their time and take a break if they need to.
• Follow through and demonstrate reliability.
• Develop an awareness of what the physical environment might mean for your client (a shared room might trigger a sense of threat from past trauma). Do they feel unsafe in certain environments? Consider noise, people, gender.
• Engage partners and family in conversation.
• Determine if there is anything else worrying the client and ask how they have been since arriving to assess the level of distress. Be mindful of their level of comfort.
• Listen in the right way. Do not interrupt unless there is an issue with arousal levels (are they in the attic or basement?).

Enhance a sense of choice and control

• Have an awareness of the need for psychological preparation, for example allow time for your client to absorb new information.
• Provide information in a timely manner.
• Always allow choice where possible, even if it is small, for example ‘this must be difficult, I’m sorry, this often happens. Would you prefer A or B?’ ‘I know that you are upset, is there anything that I can do for you now?’ ‘Let’s look at how this can work for all of us.’

Encourage a sense of empowerment and collaboration

• Do something with a client rather than doing something for or to them.
• Do not assume the client cannot act on their own behalf or engage in decisions and actions which affect them.
• Involve client and family in planning discussions around the client’s priorities.
• Encourage the client to set their own goals that they can work to achieve.
• Demonstrate an awareness of the need to communicate and discuss any changes to schedules and/or treatment and management plans.
• Recognise that trauma which occurs in relationships erodes self-esteem. Identify ways to make your interactions respectful, democratic and inclusive.

Tips for dealing with distressed clients

• Be mindful of your reaction and how this client makes you feel. Has your flight, fright, freeze response been activated? Are you in the attic or the basement?
• Staff sensitivities can be ignited in interactions with clients, particularly if staff themselves have unresolved trauma.
• You are not trying to change the situation or solve the problem.
• Your role is to understand your client’s perspective by trying to understand what the client might be thinking and feeling.
• Listen with awareness, observe and use unbiased and active listening.
• Find a response appropriate to the client’s level of distress, for example validation, nurturance, acceptance, compassion and genuineness.

Working with culturally and linguistically diverse clients

Culturally responsive health professionals promote confidence in the client, which increases their motivation to access health services. Consider the impact of culture on an individual’s understanding of health, wellbeing, disease and illness.

Culture can influence:

• a person and their family or community’s knowledge and beliefs about their health or treatment options
• how much family and community support they need or have access to
• their ability and willingness to engage with health
• the way people communicate, make decisions and manage their health.

What is cultural responsiveness?

Cultural responsiveness is a new way of thinking about culture. It means being:

• open to new ideas that may conflict with the ideas, beliefs and values of your own culture, and being able to see these differences as equal
• respectful of everyone’s backgrounds, beliefs, values, customs, knowledge, lifestyle and social behaviours. It helps you provide culturally appropriate care and support, so people are empowered to manage their own health.

Cultural responsiveness is important for all social and cultural groups, including:

• Aboriginal and Torres Strait Islander peoples
• people from culturally and linguistically diverse backgrounds
• refugees or displaced migrants
• people at all life stages, including end of life
• people with different abilities, including intellectual and cognitive disabilities
• LGBTIQA+ people.

Cultural responsiveness improves health outcomes by creating better access to healthcare.

• The provision of translators and interpreter services
• Greater choice of food options
• Same gender health professionals
• Appropriate provision of religious and spiritual care, especially those dealing with palliative and end of life care.

CALD principles and trauma

• Person-centred care – understanding the needs and priorities of the client, their family and carers, and tailoring services to respond to what matters to them.
• Equity – understanding the needs of the client and recognising that people may have advantages and disadvantages that affect the way they self-manage and achieve good health. Culturally responsive health services recognise and respond to these differences.
• Empowerment – drawing on cultural aspects that strengthen the client’s ability to manage their health, such as:
  • opportunities for peer support within the community, such as religious or other groups
  • knowledge and learning
  • healthy traditional foods
  • cultural practices that take a holistic view of health and aim to achieve balance and harmony between the physical, emotional, spiritual and environmental.
• Trauma and intergenerational trauma impacts identity and culture, which in turn effects a client’s confidence and ability to access healthcare and manage their own health.
• These groups experience high levels of racism, discrimination and marginalisation in Australia.
• Refugees coming to Australia after experiencing natural disasters, war, genocide and oppression will also experience displacement, and may feel both removed and disconnected from their culture and country.

See Trauma informed care and Practice.

Working with Aboriginal clients

Family and community

When working with Aboriginal people, try to involve family, community and Elders and consult them directly with the client’s permission and where appropriate. Consider engaging other key people in the client’s life to support their enablement.

Connection to Country

Connection to Country or land is important and can significantly impact how Aboriginal people access healthcare services. Explore what connection to the land means to the client and try to incorporate it into their healthcare plan.

Staying on land may also be important, providing treatment locally wherever possible. If out-of-area treatment is required, explain why it is important, where it can be provided.

Culturally responsive practice

Culturally safe and responsive practices are built on a foundation of trust. Many Aboriginal people are reluctant to engage with government employees and organisations, due to the damaging effects of past policies and legislation.

Colonisation and associated traumas have affected identity and culture over generations. Many are disconnected from their culture and connection to place, including members of the Stolen Generations.

Tips

• Consider age, gender, education and socioeconomic status.
• Consider the person’s level of proficiency in English and use interpreters where appropriate.
• Consider reason for migration and how long have they been living in Australia.
• Consider whether the person is a first, second or later generation Australian.
• People from CALD backgrounds are not homogenous- consider the extent to which a person identifies with a particular ethnic group.
• Consider a cultural support plan- person’s cultural group, important social rules for that group, significant events that may impact their ability to manage their own health, e.g. past or ongoing trauma.
• Understand the impacts of racism, discrimination, marginalisation and trauma.
• Collect and record accurate information about a client’s cultural, linguistic and religious identity. How people identify themselves is the key.
• Do not make assumptions about a person’s cultural, linguistic or religious background.
• Do not assume that a person’s country of birth is a reliable indicator of cultural identity. Give the individual the opportunity to self-identify by asking them to do so.
• Consider intergenerational issues and their impacts.

The cost of caring

Caregiving is stressful and the occupational hazards of working in healthcare, with respect to psychological distress has been found to be much higher than any other occupation.

Consider

• Your capacity to be with suffering clients and not be overwhelmed.
• How you manage stress in response to time pressures and limited resources.
• How you connect with clients so you can hear their stories, their distress, and tend to their needs and constant demands.

Compassion focussed care

• Exposure to suffering all the time takes its toll, but by developing a specific set of emotional skills, that is compassion, we can enhance our ability to provide a nurturing space for the client, to constantly care and NOT be overwhelmed by it.
• Compassion is defined as a deep awareness of the suffering of another, coupled with a wish to relieve it, which points to a need for action.
• Compassion is a key feature of effective clinical and organisational performance. Clients and family members report that receiving empathy and compassion from carers is an essential element of their care.
• Three opposing emotional states have been identified that help us to understand how acting with compassion can have a positive influence on our brain.
• The soothing, caring and contentment system functions to make us feel safe and content with the way things are, and allows us to soothe ourselves and others. It is linked with experiences of eliciting and receiving care and affection from others, acceptance, kindness, warmth, encouragement and affiliation.
• These behaviours weaken the effects of the threat and self-protection system, which picks up on threats, and the incentive and resource-seeking system, which motivates us to find resources, and create a sense of peace and safety.

Tips for developing compassion

• The simple act of imaging kindness and compassion is enough to activate the soothing system and deactivate the threat system.
• Engage in a mindfulness-based wellness program in the workplace.

Self-care

The importance of self-care

Self-care is not a luxury but is essential for health and wellbeing for those working in healthcare. To genuinely care for others, we must be intentionally present, using all our senses in all our interactions. Maintaining a balance between your professional and personal life with a focus on self-care is essential for reducing workplace stress.

Self-care begins with the awareness of personal needs and finding ways to take care of them.

Strategies for self-care

• Eat a nutritious diet.
• Regular exercise, such as walking, running, swimming, cycling, dancing, yoga, Pilates, team sports, tennis and much more. Choose an exercise you enjoy, and you will be more likely to stick with it.
• Be aware of your emotional reactions and distress when confronting others’ traumatic experiences and know what traumatic material may trigger them.
• Connect with others by talking about your own reactions with trusted colleagues or others who will listen.
• Strive to have good social networks and relationships that support you.
• Talk and debrief with colleagues, your team and your managers.
• Learn from your past successes and mistakes, and be flexible.
• Keep things in perspective and maintain and optimistic outlook.
• Accept that change is a part of living.
• Accept self-responsibility and develop realistic goals for yourself.
• Broaden your horizons and be prepared for self-discovery.
• Engage in a hobby on regular basis and if you don’t have one, find one.
• Remember the joy of music, dancing and laughter.
• Try breathing exercises e.g. pranayama.
• Get a massage or indulge in spa therapies.
• Develop a meditation and/or yoga practice, use mental imagery or visualisation.
• Try keeping a daily journal to jot down your thoughts and feelings.
• Other practices, for example gratitude or appreciation practices, have been found to be beneficial. Focusing on the good things can change your perspective and create a sense of gratitude. Keep a daily journal with a few things about your life that you appreciate and are grateful for.
• Explore the multitude of wellness and meditation apps from Apple or Google.
• Pause between clients. Just noticing your breath as you walk through a doorway can be effective. Listen to yourself and take time out if you need to, even if briefly.
• Take your lunch break and go outside for a short walk. A change of scenery works wonders.
• Drink plenty of water and eat healthy snacks.
• Leave your life stressors at home and the pressures of your work in the room on leaving. Make a list of things to follow up the next day before leaving the office.
• After a day’s work, take time to reflect on, and write down if necessary, any interactions that you had a strong reaction to. Even if you think you are OK, speak with a peer or supervisor if your reactions were strong.

Where to get help

• Employee Assistance Programme (EAP) is a valuable, free and confidential support service that assists all health employees with any organisation and or personal issue.
• Access to Psychiatrist, Psychologist and General Practitioners through the Medicare Benefits Schedule ((Better Access) is an initiative that provides Medicare rebates to anyone who wishes to access local allied mental health services provided by qualified GP's, eligible psychologists, social workers and occupational therapists.
  
  Better access to mental health care: fact sheet for patients