Each day in the United States, 80 newborns are diagnosed with neonatal abstinence syndrome, in which they experience withdrawal from a drug they have been exposed to in the womb (Centers for D

OR I G I N A L A R T I C L E

“Power together”: Professionals and parents of children with disabilities creating productive partnerships

Ayala Cohen | Atalia Mosek

Department of Social Work, Tel Hai College,

Tel Hai, Israel

Correspondence

Atalia Mosek, Department of Social Work, Tel

Hai College, Tel Hai 12008, Israel.

Email: [email protected]

Abstract

Disparity of power and authority in the relationship between parents and profes-

sionals has been shown to be a major challenge in creating a successful partnership

in caring for children with disability. The goal of this article was to evaluate workshops

attended by professionals and parents of children with disability by raising awareness

to barriers related to incompatible expectations and role definitions. The research

explored the experiences of the participants in order to identify factors that facilitated

or impeded their collaborations. Data were collected from three workshops attended

by 22 mothers of children with disability and 24 professionals (most of them are social

workers). This qualitative research used interpretative phenomenological analysis to

investigate the participants' experiences. Findings showed that parents and profes-

sionals joined forces to create a productive working relationship by taking advantage

of power over and power together relationships. This mutual process required

participants to be aware, empathic, and respectful of one another's needs and

limitations; acknowledge the contribution of experiential and professional knowledge;

and co‐operate in overcoming the effects of ineffective bureaucratic service systems.

Interventions geared to contain emotional burden, acknowledge differential

knowledge and experience, and structure the use of power are suggested.

KEYWORDS

parents of children with disability, partnerships between parents and professionals, power

embedded strategies: power over, oppression, co‐operation, and collusive power, professionals

working with parents of children with disability

1 | INTRODUCTION

Power and authority disparities in the relationship between parents

and professionals have been shown to be a major challenge in creat-

ing successful lay–professional partnerships in caring for children

with disability. Such partnerships are jeopardized by failure to estab-

lish a collaborative, trusting, empowering relationship that supports

effective service delivery (Blue‐Banning, Summers, Frankland, Nel-

son, & Beegle, 2004). This article examines three workshops

attended by professionals and parents of children with disability in

order to understand the disparity of power as a contributing factor

to successful relations.

1.1 | Parents–professional partnerships

Partnership is an agreement between equivalent but not necessarily

equal partners who share an understanding about caring and working

towards mutual goals (Rommetveit, 2011), and although the term

connotes shared responsibility, this is not always the case regarding

relations between professionals and parents of children with disability

(Vincent, 2000). A partnership between parents and professionals was

defined by Summers Hoffman, Marquis, Turnbull, Poston, and Nelson

(2005, p. 3) as “mutually supportive interactions … focused on meeting

the needs of children and families, and characterized by a sense of

competence, commitment, equality, positive communication, respect,

DOI: 10.1111/cfs.12637

Child & Family Social Work. 2019; :565–573. © 2019 John Wiley & Sons Ltdwileyonlinelibrary.com/journal/cfs 56524

and trust.” This relationship should be characterized by mutual respect

and trust, shared information and decision‐making, and intervention

processes that incorporate family beliefs, needs, and preferences

(Mihee & Palisano, 2014). The following sections describe parents'

and professionals' expectations regarding their working relationships

and barriers to creating successful partnerships.

1.1.1 | Parents' perspective

Parents have identified “trust” as one of the most important factors in

a partnership with professionals (Turnbull, Turnbull, Erwin, & Soodak,

2006). They also value communication, professional competence,

respect, commitment, equality, and advocacy (Hess, Molina, &

Kozleski, 2006). In addition, they expect professionals to acknowledge

their own knowledge of their family by actively seeking their input on

their situation and preferred solutions (Fereday, Oster, & Darbyshire,

2010). When these factors are absent, parents, who are inevitably

dependent on professionals as gatekeepers of the service systems

(Tétreault et al., 2013; Wilkins, 2015), cope with humiliating and disre-

spectful regulations or deal with breakdown in their relationships with

professionals (Blue‐Banning et al., 2004).

1.1.2 | Professionals' perspective

A review of the literature showed that professionals approached their

working relationship with parents with responsibility and care. How-

ever, most do not view parents as equal partners and expect to control

the relationship (Blue‐Banning, Turnbull, & Pereira, 2000). They feel

that parents should be involved in planning for their child's care, but

only to a certain degree. In conflict situations, they tend to blame par-

ents for being unco‐operative rather than assess their own practice

(Bezdek, Summers, & Turnbull, 2010). They also expect the parents,

not themselves, to take responsibility for securing the services their

children require. However, when parents use adversarial strategies

to this end, they are reluctant to assist them in addressing inadequa-

cies in the services (Clear, 1999).

1.2 | Factors in successful partnerships

Both professionals and parents stress the importance of communica-

tion, commitment, skills, respect, and trust as foundations for success-

ful partnerships and invest in flexible relations that contextualize,

individualize, and are responsive to family concerns (Gallagher, Smith,

Hardy, & Wilkinson, 2012). A trusting relationship is likely to develop

through warmth, friendliness, and humour and by conveying

compassion, empathy, and respect (Rommetveit, 2011). Professionals

who work with culturally and linguistically diverse families need to

be cross culturally competent and value the uniqueness of each family

(Kalyanpur, Harry, & Skrtic, 2000).

1.3 | Barriers to successful partnerships

Disparity between power and authority is a major obstacle to develop-

ing successful partnerships (Davis, Ravenscroft, & Bizas, 2015). Power

differentials relate to the different hierarchic power positions profes-

sionals and parents occupy in relation to the child. Professionals, as

experts, are considered powerful, whereas parents, as caretakers,

often feel powerless (Vincent, 2000). Consequently, both sides experi-

ence emotional stress. Together with the stress created by their child's

disability, some parents develop defensive attitudes towards profes-

sionals, which the latter, in turn, assess as “pushy” and resisting assis-

tance instead of as need for support (Fereday et al., 2010). These

mindsets are exacerbated by confusion in and delayed access to

needed services (Green, 2007). To be able to support parents, profes-

sionals need to evaluate their own feelings towards raising a child with

disability and work through them (Choi, Lee, & Yoo, 2011).

Barriers to productive working relationships also often trace to

overly bureaucratic practice cultures, which are irreconcilable with

the service users' needs (Gallagher et al., 2012). Likewise, profes-

sionals are hindered by barriers such as unclear service goals,

insufficient time, excessive workload, and lack of administrative

support (Bronstein, 2003).

1.4 | Disparity between power and authority

Both service users and professionals in their everyday interactions

experience sensations of power and powerlessness (Proctor, 2002).

Relationships underpinned by inequality and objectivity tend to com-

modify caring and thereby highlight power differentials (Clear, 1999).

Recognizing these inherent power imbalances in the relationship is

considered a major factor in developing a positive partnership

(Wilkins, 2015). Guilfoyle (2011, p. 14) warns against failing to make

the power dynamics visible in practice: “If we believe … that we are

at all times inescapably immersed in power relations and dynamics …

how we can facilitate clients' participation as social beings within

social power relations?”

Parent–professional relations are governed by knowledge and

power. Foucault (2000, p. 341) defined power as “an act upon another

person and as a type of relationship between individuals.” Using this

definition, researchers understand how power dynamics shape how

practitioners convey, seek, and use knowledge (Heizmann & Olsson,

2015). Following Foucault's (1981, p. 165) view of power as “a social

relation that may open up or close off opportunities for individuals

or social groups,” Tew (2006) conceptualized its operation as a

dualistic process—oppressive or limiting in some respects and

productive or protective in others—and so proposed a matrix of power

relations designed to distinguish between different modes of its

operation (Table 1).

As shown inTable 1, both vertical operations of “power over” and

“power together” combine with “productive” or “limiting” horizontal

operations. Protective power, the productive mode of power over,

deploys power to safeguard vulnerable people and their potential for

COHEN AND MOSEK566

advancement, whereas co‐operative power, the productive mode of

power together, shares mutual support and challenges by valuing com-

monality and difference. In contrast, oppressive power and collusive

power are the limiting modes of power. The former exploits differences

to enhance one's own position and resources at the expense of others,

whereas the latter bands to exclude or suppress “otherness” either from

within or from without. In this research, Tew's (2006) typology was

used to deconstruct the power relations that played out between

parents of children with disability and professionals during three work-

shops, which enabled us better to understand the facilitative factors

and barriers to successful partnership between the two groups.

1.5 | The workshops

The workshops were part of Shemesh (“Sun” in Hebrew), a programme

initiated in 2012 by two mothers of children with disability, that

focuses on empowering the parents and the family unit. The pro-

gramme was developed and funded by governmental and philan-

thropic organizations and a private donor. The authors of this article

were involved in a 3‐year evaluation of the programme.

The goal of the workshops was to improve the working relations

between professionals and parents. The process began by allowing

participants to become acquainted with one another and identify their

assumptions, attitudes, and expectations. This, in turn, enabled partic-

ipants to identify the conditions needed to create understanding,

empathy, and trust as a foundation for effective communication and

developing fruitful relations. The process was conducted in two

stages. The preparation stage composed of three separate meetings

of parents and professionals, enabling the participants of each group

to ventilate, share personal experiences, and clarify attitudes and feel-

ings towards members of the other group. These separate group

meetings were followed by three joint meetings that focused on shar-

ing experiences, identifying parallel processes and communication bar-

riers, and proposing tools for improved relationships. All the

workshops were moderated by veteran social workers experienced

in working with families of children with disability. The research

explored the experiences of the participants in these processes in

order to understand how they affected their ability to work together

and to identify factors that facilitated or impeded their collaboration.

1.6 | Research question

How did discourses expressed by professionals and parents of chil-

dren with disability during the workshops demonstrate the use of pro-

tective, oppressive, co‐operative, and collusive power as facilitating or

impeding factors in creating successful relationships?

2 | METHOD

2.1 | Research design

The research used interpretative phenomenological analysis (IPA),

which enables investigation of significant experiences in participants'

lives (Smith, 2004). IPA is affiliated with phenomenological epistemol-

ogy (Smith, Flowers, & Larkin, 2009) and a constructionist framework

(Watkin, 2011). It seeks to explore the participants' world view and to

adopt, as far as possible, an “insider's perspective” while recognizing

the researcher's own conceptions in making sense of “that other per-

sonal world” (Brocki & Wearden, 2006). IPA is extensively used in

child and family health research due to its strength in exploring and

interpreting the ways people articulate and understand their experi-

ences (Biggerstaff & Thompson, 2008).

2.2 | Participants

The workshops were held in three cities in southern Israel. An email

invitation was sent to all parents of children with disability on

Shemesh's email list, followed by personal invitations from the site's

coordinator to parents who took part in the organization's Parent to

Parent programme (107 parents) or Parent Leadership Group (56 par-

ents). Twenty‐two parents (7.4% of those personally invited) partici-

pated in the workshops, with an average of 15 per workshop. Twenty

were mothers and two were fathers. Their ages ranged from 33 to

57 years, with an average of 46.4 years. Their formal education level

ranged from high school to postdoctoral studies, with an average of

14.9 years. Most were middle class, half employed part time, and a third

full time. The age of their children with disability ranged from 3 to

20 years, whose impairments included mild to severe levels of hearing

deficiency, mental retardation, autism, cerebral palsy, pervasive devel-

opmental disorder, and Down syndrome. All the parents were familiar

with local organizations and services that could help their children.

Recruiting professionals for the workshops was done by sending

invitations to all social welfare, education, and health service profes-

sionals who worked with parents and children with disability at the

three sites. This was followed by a phone call from the site's coordina-

tor, usually based on previous acquaintance, encouraging them to join.

Twenty‐four professionals accepted (23 women and one man), most

of whom were social workers (17). The others were two educational

representatives, three health care personnel, and two members of

non‐governmental organizations. The parents and professionals had

no prior acquaintance with each other, and both noted the limited

number of men, physicians, and psychiatrists among them. Workshop

attendance averaged 82%. One parent and three professionals did not

continue to the second stage.

2.3 | Research procedure and instruments

Ethical approval for the research was granted by the Ethical Commit-

tee of the authors' college, and the participants were informed that

TABLE 1 Matrix of power relations

Power over Power together

Productive modes of power Protective power Co‐operative power

Limiting modes of power Oppressive power Collusive power

COHEN AND MOSEK 567

the proceedings would be documented and the results published. Pro-

tection of privacy and confidentiality was assured, and all participants

provided signed informed consent forms. Shemesh site coordinators

attended all the workshops as nonparticipant observers responsible

for documenting the proceedings in light of the participants' discom-

fort in using an audio recorder. Documentation included all verbal

communications and non‐verbal cues during the sessions. To

overcome the risk of the data collectors' inadvertently interpreting

meanings rather than solely capturing them, this material was

complemented by phone interviews by the researchers with the work-

shop moderators, by the latter's reflective notes, and by follow‐up

phone interviews with available parents and professionals who

attended the workshops. For presentation in this article, quotes from

these sources were translated from Hebrew to English by a native

English speaker, and an English editor then verified their authentica-

tion by performing a reverse translation.

2.4 | Data analysis

IPA was begun by reading and rereading the documented material by

both researchers and noting initial ideas, reactions, meaning, and pat-

terns. Each researcher used a systematically inductive approach to

choose the participants' quotes that, in her opinion, represented the

major topics raised in light of how professionals and parents of chil-

dren with disability convey feelings, thoughts, and behaviours regard-

ing their working relationship during the workshops. We then

contrasted similarities and disparities and, in the next stage, reviewed

and compared our analyses of the data, clarified our interpretations,

and discussed discrepancies. In cases where agreement was not

reached, the data were not included in the identified themes. When

discussing the significance of our interpretive analysis, we focused

on answering questions identified by Braun & Clarke (2006, p. 94):

“What do these themes mean? What assumptions underpin them?

What are the implications of these themes? Why do people talk about

these things in this particular way (as opposed to other ways)? What is

the overall story that different themes reveal about the topic?” While

searching for answers to these questions, our reflections made us real-

ize that our understanding of the workshops was not detached from

our professional perceptions of social justice and evaluation of the

programme. We found that we were unable to separate our own con-

cerns regarding the impact of power relations on the parents' and pro-

fessionals' relationships. To assist us, we undertook a literature review

in search of a theoretical paradigm that could help us describe the

relationship and chose Tew's (2006) matrix of power, previously

described in Table 1, as the theoretical framework for interpreting

our research question.

3 | FINDINGS

The following findings are presented under the four modes of power

identified by Tew (2006). Power over includes protective and oppres-

sive power. Protective power is the productive form of power over

that signifies deploying power in order to safeguard vulnerable people

and advance their possibilities for advancement. Oppressive power is

a limiting form of power over that utilizes differences to enhance one's

own position and resources at the expense of others. Power together

includes co‐operative and collective power. Co‐operative power is a

productive form of power together that signifies sharing mutual sup-

po

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