Behind every child with special needs are parents, who without having any diagnosed condition, have special needs of their own. Lengthy dealings with various health professionals will almost certainly become part of their lives, whether their child has a learning disability, an intellectual difference, a physical challenge, or a chronic or serious illness. How can health professionals offer support to these parents at the same time that they care for their young patients?
FAMILY-CENTRED CARE AND SUPPORT FOR PARENTS
Gerry is the father of Marie-Ève who was born in Ottawa six years ago with Down syndrome. “The professionals who have been the most help to us are the ones who are open,” says Gerry. “The information flows in both directions: they’re willing to explain things, and they listen to what we can tell them about our daughter.”
Gerry is talking about the experiential knowledge that comes from living day in, day out with a child. This knowledge differs from professional expertise, but it is, nonetheless, valuable in developing a program of care. Collaborative, family-centred care recognizes that parents and professionals can work in partnership towards achieving the best outcomes for children (1).
Another aspect of family-centred care involves providing support to parents so that they feel competent to make decisions and look after their child (2). This does not mean that professionals must supply all of the emotional support, concrete assistance and information that families need. Often, informal networks are better adapted to perform those tasks. Parents usually turn to family members (their own parents, brothers and sisters) as the first source of support in times of trouble. Unfortunately, the parents’ expectations are not always met. In fact, a lack of support from family may become an additional source of stress for parents who are coping with a child’s special needs (3).
SELF-HELP GROUPS
When ‘natural’ networks cannot or will not fulfil the support needs of parents, how can professionals be of assistance? Dr Andrew Lynk, a paediatrician in Sydney, Nova Scotia, encourages parents to try self-help groups. “I’m a big fan of self-help groups,” he says. “They can be a terrific resource for practical information, moral support and advocacy. I keep a list in the office of various local support groups and websites, which parents are usually grateful to receive.”
Groups are not always available or convenient, and not all parents will want to participate in a group. Janice Mac-Aulay, author of Self Help for Parents of Children of Special Needs: A Tool Kit for Parents and Professionals (4) points out that there are many possible types of mutual aid:
Some parents, especially just after receiving a diagnosis, are better off with one-to-one matching programs. These programs can work in person or through registries that put parents of children with rare disorders in touch through the mail or phone. And more and more parents are taking advantage of the information-sharing potential of the Internet, either through Web sites or chat groups.
MacAulay’s kit includes a resources booklet with contact information for many organizations, as well as Internet addresses.
BENEFITS OF SELF-HELP
Self-help brings considerable benefits to parents, such as the following: a feeling of not being alone, the ability to handle distress better, practical everyday coping skills, information on how to get services, and an opportunity to give as well as receive support. “Right when Marie-Ève was born,” recounts Gerry, “a nurse at the hospital put us in touch with another family who’d been through the same thing. They gave us a lot of help.”
Professionals and service delivery systems also benefit from self-help groups. Professional time and institutional resources may be used better when parents receive support (and a chance to vent frustrations) outside of the formal system. As parents become better informed and more confident about their own abilities, they may choose to use more appropriate programs.
CONCERNS OF PROFESSIONALS
Nonetheless, many professionals have concerns about referring families to any form of mutual aid. Professionals may, for instance, fear that a referral to a group constitutes an endorsement of everything that occurs during sessions. Gerry observes: “They seem to think that we’re so vulnerable that we aren’t able to make our own choices.” As with all their decisions, parents are responsible for deciding whether to attend a group. When professionals provide information about the existence of a group, and at the same time make it clear that parents are free to choose how to use this group, it is not the same as making a professional referral to a specialist.
Sometimes, professionals want to protect families with a child who was recently diagnosed from getting discouraged by hearing the stories of other families. While some parents prefer not to hear what the future may bring, most parents want to know both the positive and negative aspects of what lies ahead. As MacAulay said in an interview: “Self-help groups support people going through tough times. They don’t pretend to take away the pain and distress.”
A lack of trust forms a barrier to effective partnerships between health professionals and self-help groups (5). Self-help groups fear that professionals will take over and not give sufficient attention to the experiential knowledge of members. Professionals fear that group members will try to offer medical advice. Clarifying the complementary nature of the different roles of both groups is essential to improving relations between partners. Most self-help groups have clear guidelines indicating that parents should avoid giving medical advice to other members when they share their child’s experience with a particular treatment.
BECOMING INFORMED
Effective partnerships depend on building trust through understanding and respectful communication. If health professionals are unfamiliar with the benefits of self-help, the tool kit by MacAulay (4), published in English and in French by the Canadian Association of Family Resource Programs, is a good place to start. The kit, made up of four booklets and a resource sheet, includes a discussion of the benefits of self-help for parents and for professionals, as well as information on how to start up and maintain a group. One booklet addresses the question of how self-help groups can establish links with professionals. Another booklet presents guidelines for professionals who wish to support self-help initiatives. Written in an easy-to-read style, the kit is suitable for lending to parents who wonder whether self-help is appropriate for them.
Providing family-centred care to children with special needs is a challenging task. Self-help groups can be a valuable adjunct to building a partnership between parents and professionals who seek the best outcomes for these children.
Self Help for Parents of Children of Special Needs: A Tool Kit for Parents and Professionals (4) is available for $18 (plus GST and postage) from the Canadian Association of Family Resource Programs, Ottawa, Ontario. (Également disponible en français sous le titre Groupes d’entraide pour les parents des enfants ayant des besoins particuliers : une trousse pour les parents et le corps professionnel.)
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