Caring for medically fragile children: stressed out parents caring for chronically sick children at home often need an extra pair of hands. Family Options is providing them and ensuring children stay out of hospital as much as possible.
Subject: Nurses (Practice)
Children (Diseases)
Children (Care and treatment)
Children (Patient outcomes)
Author: Manchester, Anne
Pub Date: 03/01/2012
Publication: Name: Kai Tiaki: Nursing New Zealand Publisher: New Zealand Nurses' Organisation Audience: Trade Format: Magazine/Journal Subject: Health; Health care industry Copyright: COPYRIGHT 2012 New Zealand Nurses' Organisation ISSN: 1173-2032
Issue: Date: March, 2012 Source Volume: 18 Source Issue: 2
Topic: Event Code: 200 Management dynamics
Product: Product Code: 8043100 Nurses NAICS Code: 621399 Offices of All Other Miscellaneous Health Practitioners
Geographic: Geographic Scope: New Zealand Geographic Code: 8NEWZ New Zealand
Accession Number: 284753716

For the last 13 years, Family Options, a programme serving the three Auckland district health boards (DHBs), Northland DHB and, since 2005, Lakes DHB, has been meeting the needs of children with complex personal health needs requiring additional support at home.

Nurse specialist Jacqui Finnigan has been involved with the programme for the last four years and its co-ordinator for the past year. She and her two specialty clinical nurses see it as a unique programme aimed at enhancing and optimising the care of medically fragile children and their families in their community.

"We can't have children going home from hospital unsupported or they will fail and need to be readmitted very quickly," she said. "As experienced nurses who understand the terminology and the challenges facing families, we can assess the family's needs using a multi-disciplinary approach, then find a suitable support worker from a service provider or private carer to provide the top-up care the family may need to survive sustainably. "

Children who are eligible for the programme will be under 16 and have a variety of complex needs. They may be dependent on technology (eg ventilator support, tube feeding or renal dialysis), have a rare syndrome (eg cranial facial problems) or complex, undiagnosed symptoms. They will have a medical condition likely to last more than six months and will be under a paediatric specialist. Their families may be facing extraordinary demands in caring for their special needs child(ren), related to the complex and combined effects of a chronic health condition.

All children will have an outreach nurse visiting regularly to manage their conditions and to give families the knowledge they need to care for their children safely. However, a nurse's time is limited. An appropriately trained support worker can provide respite for the parents, and help with feeding, suctioning and generally offer

a stressed family an extra pair of hands when they need it. Caregivers may stay overnight or may go into the home for several hours during the day. Care is individualised to the needs of each family. There are currently 50 children on the Family Options programme.

"Ideally, we would have all the funding we need to meet the needs of all the children requriing help. Unfortunately, nothing is as simple as that. We have to share out the funding as fairly as we can, based on the most needy children applying for it at the time. It's about prioritising and having to take a global view," Finnigan said.

Decisions about funding are made either by the local delegated funding group or by the regional reference group. This will include social work, nursing, needs assessment, paediatrician, Maori, Pacific and consumer representatives. Funding is allocated in periods from three to 12 months, and is reviewed quarterly. Some families, particularly Maori and Pacific families, can choose a private caregiver, with Family Options assisting to co-ordinate training for the chosen caregiver. They are paid directly from the Ministry of Health.

Family Options' underlying philosophies are to provide family-centred care and a partnership approach to care planning; to provide culturally appropriate care; and to use an interdisciplinary approach, with less emphasis on demarcation of professional roles.

"We pride ourselves on providing a flexible and responsive programme," said Finnigan. "We get some wonderful feedback from families, who often tell us they would never have coped without the additional support the programme provides."

Last July, the Ministry of Health devolved funding of its long-term supports--chronic health conditions (LTS-CHC) programme from disability support services to DHBs. The Family Options team are now managing this funding programme for the three Auckland and Northalnd DHBs, along with their core programme. This programme is for children under 16 with very high needs. Around 35 families are currently on this programme. Finnigan would like to see the two funding streams brought together to ensure equity among those families needing support.

Finnigan and her team are responsible for arranging the needs assessments of the children referred to LTS-CHC. In one case, a mother wanted to visit her very ill father overseas. "She could take one child with her but not her medically fragile child," said Finnigan. "We helped arrange for the additional help she needed to make the trip possible and to enable her husband to keep on working."

Some residential respite care is also available for families living in the Auckland region.

Specialising in community health

Finnigan specialised in children's health in the United Kingdom, completing degrees in community health care and management, before she immigrated to New Zealand in 2000. She admits that even filling any allocated registered nurse hours for these medically fragile children can be difficult. "Many nurses prefer to work in hospitals, as they fear nursing in the community could be quite isolating. Attracting nurses into the community can be quite hard."

Over the years, Finnigan has known a number of children who have died while on the Family Options programme. "We can offer some palliative support for families who are on the programme. Our aim is to meet the individual needs of each family in the circumstances they find themselves in."

Finnigan would like to see the Family Options model adopted by other DHBs around the country. Only Waikato DHB has a similar programme, though this is aimed at medically fragile children with short-term needs only. "There is no equivalent to the Family Options core programme in other parts of the country."

She often finds her role frustrating but gains much satisfaction in knowing that families are being supported. "I like a challenge. I know there is room for streamlining the service and improving the support we provide, and I hope to achieve that in the near future. Our aim is to be responsive to parents' needs, and to allocate funding as fairly and equitably as we can."

By co-editor Anne Manchester
Gale Copyright: Copyright 2012 Gale, Cengage Learning. All rights reserved.