From the other side: parents’views of their early contacts with health professionals

Abstract

The parents of 84 school-age children with cerebral palsy were interviewed about their early experiences of dealing with health professionals. Seventy per cent of families expressed dissatisfaction with some aspects of their contact with the health services during the initial period of diagnosis and referral. Lack of explanation, either about the child's condition or the reasons for follow-up, was the commonest complaint (58%), followed by having their worries dismissed by doctors and the need to make repeated visits before their child's problem was recognized (51%). Twenty per cent complained about the manner in which they had been told about their child's disability and 5% were critical of the lack of understanding on the part of doctors of the practical difficulties they faced. A high level of dissatisfaction was found among parents of children who had recognized perinatal problems but dissatisfaction was not found to be proportional to the severity of the child's handicap. Ways in which the quality and delivery of services could be improved are discussed.

Major Elements of Parents' Satisfaction and Dissatisfaction With Pediatric Rehabilitation Services

“…Although other researchers have discussed dissatisfaction (Larsen et al, 1979;McKay & Hensey, 1990;McNaughton, 1994;Weller, 1991;Williams, 1994;Zapka et al, 1995), studies have not explicitly examined the elements of service delivery that underlie the states of dissatisfaction versus satisfaction. It generally is assumed that the elements that lead to dissatisfaction are the opposite of those that lead to satisfaction.…”

“…A review of the health care literature (encompassing the literature on adult and pediatric medical care and rehabilitation) revealed 21 articles providing information about the elements underlying satisfaction (Baker, 1990;Ben-Sira, 1976;Cook et al, 1986;DiMatteo & Hays, 1980;Donabedian, 1988;Doyle & Ware, 1977;Dutton et al, 1985;Forbes & Brown, 1995;Hall & Dornan, 1988;Knafl, Breitmayer, Gallo, & Zoeller, 1992;Krahn et al, 1990;Larsen et al, 1979;Mahoney, O'Sullivan, & Dennebaum, 1990;McCusker, 1984;McKay & Hensey, 1990;Murphy, Lee, Turbiville, Turnbull, & Summers, 1991;Simonian, Tarnowski, Park, & Bekeny, 1993;Ware & Snyder, 1975;Weller, 1991;Zyzanski et al, 1974). These articles mostly deal with adult patients' satisfaction with medical care, although some deal specifically with parents of children with special needs or children receiving medical care (e.g., S. Knafl et al, 1992;Mahoney et al, 1990;Murphy et al, 1991).…”

“…It generally is assumed that the elements that lead to dissatisfaction are the opposite of those that lead to satisfaction. Studies explicitly examining dissatisfaction indicate that the important underlying elements involve both process and structural aspects of care: lack of explanations, having worries dismissed, service providers not understanding practical difficulties, the manner in which bad news is given, receiving inappropriate services, and receiving an insufficient amount of services (McKay & Hensey, 1990;Weller, 1991).…”

“…Parents most liked the clarity of communication, short preappointment waits, and the efficiency of the clinic. McKay and Hensey (1990) examined the satisfaction of parents of children with cerebral palsy. Parents were most dissatisfied with their early contacts with health professionals when their worries were dismissed, they needed to make repeated visits before their child's problem was recognized, and there was little explanation about their child's condition or reasons for follow-up visits.…”

The Evolution of a Partnership to Meet the Special Needs of Children

“…Studies investigating parents' views of professional services in the early years include those by McKay and Hensey (1990), Sloper and Turner (1992), Wishart et al (1993), Haylock et al (1993) and Pimm (1996). They revealed that parents were generally dissatisfied with fragmented services and were given insufficient support and often contradictory advice.…”