Occupational therapy guidelines

Darren Ayres, an occupational therapist who works for Islington Primary Care Trust, London, UK, discusses the role of occupational therapy in empowering disabled parents, and explains how his team developed a model to assess and then provide support to disabled parents.

The Islington Community Rehabilitation team’s occupational therapists see about five to 10 disabled parents a year. Due to the complexities involved in working with disabled parents, a need to create an assessment model was identified.

The primary goal of occupational therapy is to enable people to participate in the occupations which give meaning and purpose to their lives (adapted from the World Federation of Occupational Therapists 2004).

This statement can be used as a baseline in understanding some of the issues involved in the assessment and appropriate support of disabled parents.

Understanding parenting as an occupation is key. Many disabled parents that I meet have lived with their disability for some time. These individuals have developed and adapted their lives in order to function as independently as possible. For them, parenting is a new occupation and not one that is easily practised prior to the arrival of the child.

Others have acquired impairments post-parenthood and may need to adapt their parenting methods. These are two very distinct groups and we needed a model that would sit well with both.

Assessing and providing interventions for disabled parents can be daunting for an occupational therapist who is required to assess the parent’s ability to meet the needs of the child.

First, they must gain a clear understanding of how the individual’s impairments affect their current activities of daily living. Can they dress, cook a meal, go to the park and so on? This is an area that the occupational therapist will be well skilled in, as this is what we do every day.

However, assessing a child’s needs is more complex. There are many variables to consider here, such as age, physical, intellectual and social development, height, weight, behaviour, and many other factors that make every child different. Many of the challenges facing physically disabled parents and their children are related to moving and handling. Safety for the parent and child is often an issue.

Guidelines and standards of occupational therapy – parenting role was developed by Victoria Powell, clinical specialist occupational therapist to provide a structure that can be used in addition to a standard occupational therapy model, for example, Reed and Sanderson (1992) Personal Adaptation through Occupation.

The guidelines are particularly useful for new staff, who may have no experience of parenting or working with parents.

Expectant mothers

The guidelines begin with expectant mothers as we hope to receive a referral, ideally, at this stage.

At the initial assessment interview, the occupational therapist will ask the mother how she is coping with her developing pregnancy (for example, increasing weight, difficulty in bending, fatigue). They will talk about the impact her pregnancy is having on her disability, and how she may adjust as her pregnancy proceeds.

They will discuss what support she needs and whether or not she already has this in place. The occupational therapist will ask whether she has talked about her disability with her midwife and doctor, and addressed any specific needs in the maternity unit (for example, wheelchair access, wheelchair accessible cots).

The occupational therapist will also offer support with particular issues about the birth, including arranging a visit to the maternity unit and ensuring that staff are aware of any specific needs.

Discussion will also cover whether the mother has any specific plans or concerns for how she will look after her baby, to determine whether it is appropriate to make a referral to social services for a care needs assessment for support after the birth.

We try to arrange for the mother and occupational therapist to make a joint visit to DPPI at the National Centre for Disabled Parents, in London, to access information on disabled parenting support groups, try out equipment and adaptive techniques, and discuss parents’ individual issues.

Other possible interventions may include a referral to social services, if needed, and making links with other disabled parents, for example through Disabled Parents Network, which offers peer support.

The occupational therapist will discuss with the parent(s) plans for the future care of her baby, considering each area listed below, along with the client’s disability:

• bathing – equipment and positions
• dressing and nappy changing – where it will happen, and how will she carry or move equipment and items needed
• carrying her baby indoors
• carrying her baby outdoors – the use of buggies/prams and access to property
• transfers – for example, in and out of the cot, off the changing mat, out of the buggy and so on
• the suitability of different types of buggy
• feeding – types and positions, and making feeds
• attending appointments/postnatal care.

The occupational therapist will make parents aware of organisations such as REMAP and DEMAND that can, with the guidance of the occupational therapist, adapt equipment ensuring that partners and other appropriate family members are included.

Disabled parent referrals

When clients who are already disabled parents are referred to us, including those who have recently become disabled or those who are experiencing new challenges as their children develop and grow, the occupational therapist will assess both the child’s and parents’ needs and consider any problems that may be anticipated in the future.

Again, potential areas for intervention will include exploring support issues such as referral to social services; a visit to DPPI; disabled parents’ support groups. The occupational therapist will discuss with the parent(s) a plan for the child's changing needs, with particular regard to carrying/mobility indoors; outdoor mobility; preparation of food and feeding positions; dressing; and nursery/schooling, including travel.

We try to involve all occupational therapy students on placement with us in disabled parenting, which assists with their training in this area of work.

Making a visit to DPPI also enables occupational therapy students to view examples of equipment that may be of use to disabled parents and gives them ideas on how they can use their skills, plus adaptive equipment and techniques, to problem-solve issues disabled parents may have.

I urge any disabled parent to contact their local occupational therapy service for an assessment, and DPPI or other disabled parents’ groups for specialist information and support.

Please find below contact details for the organisations mentioned.

DPPI: See end of this journal.

DPN Tel: 08702 410 450

www.disabledparentsnetwork.org.uk

REMAP Tel: 0845 130 0456

www.remap.org.uk

DEMAND Tel: 01923 681800

E-mail: info@demand.org.uk

www.demand.org.uk

Next: Resources... Learning to live with Huntington’s disease