Cynthia Bergeron, M.Sc, Pt1, Claude Vincent, Ph.D, OT2,3, Normand Boucher, Ph.D3, 2, 1

1 : Institut de réadaptation en déficience physique de Québec, Québec, Canada; 2 : Université Laval, Québec, Canada; 3 : Centre for interdisciplinary research in rehabilitation and social integration (CIRRIS)

Nurture caregiver To meet the physical requirements of the infant, to promote the in-fant’s wellness and to prevent their illness.

Social caregiving The variety of visual, verbal, affective, and physical behaviors parents use in engaging the infant in interpersonal exchanges.

Didactic caregiving The variety of strategies parents use in stimulating the infant to en-gage and understand the environment outside the dyad.

Material caregiving Those ways in which parents provide for and organize their infant’s physical world.

(Bornstein, 2002)

Parenting role with children between 0 to 5 years old

To learn more about the experience of parents (mothers and fathers) in wheelchairs with children between 0 to 5 and 6 to 12 years of age, three specific objectives were formulated:

•To identify the environmental and personal obstacles encountered;

•To document the personal strategies developed, and;

•To document the types of formal and informal support used.

Research question and objectives

•More individuals with motor disabilities live as couples and choose to become parents.

•11% (8.1 million) of American families (Barker & al., 1997) and 4.8% (143 000) of families in the province of Québec (Camirand & al., 2004) with minor children had at least one parent with one or more disabilities.

•There is a lack of knowledge about the perceptions of mothers and fathers in wheelchairs regarding different dimensions of their parenting experience during two child development stages, namely the infancy and toddler stage (ages 0 to 5) and the middle childhood stage (6 to 12).

Rationale

Contributors

Susan Vincelli, Programme Pa-rent Plus, Centre de réadapta-tion Lucie-Bruneau, Montreal, Canada.

Dr Michel Leduc, physiatrist, Institut de réadaptation Gin-gras-Lindsay de Montréal, Ca-nada.

Lise Vachon, Moelle épinière et motricité Québec, Canada.

Financial support

Canadian  Institutes  of  Health Research.

Acknowledgments

The diversity  of  personal  strategies  is  evidence of  the parents’ desire to develop alternative ways to overcome obstacles. 

For the group aged 0-5 year, the personal strategies aimed to “develop ways of doing things”, “carry out some physi-cal modifications” within the house, “use technical aids” and planning activities in advance were crucial to allow parents to take care of the children by themselves. 

For those aged 6-12 year, the strategies aimed to “guide the  child”,  “to  develop  his/her  social  skills”  and  “carry out some advocacy” were more important than with the other group. 

During the first year, the care provided to the child and the mobility  in  the  community were  the main  reasons to seek support with children aged 0 to 5. With children aged 6 to 12, the main reason for seeking support was accessibility limitations.

Conclusions

Qualitative research design (case study).Semi-structured one-on-one interviews at parent’s home.Thematic analysis principles (Braun and Clarke, 2006) N-Vivo 7.0.Principle of theoretical data saturation.

Target population: Parents in a wheelchair with at least one child between the ages of 6 and 12.

Inclusion criteria: Use a wheelchair for mobility before becoming a parent, have full or shared custody of the child.

Convenience sample

Research design

•13 open-ended questions based on the parenting dimensions with children aged 0 to 5 (Bornstein, 2002) and 6 to 12 (Collins et al., 2002).

•Questions were worded based on the Parenting Behaviors Questionnaire about concrete parenting activities (Katz et al., 2003). 

•The interviewer asked the parent to describe how he/she managed to perform each of the parenting activities (personal strategies), types of support used, and the obstacles encoun-tered.

Home interview

Bergeron C. L’expérience parentale vécue par des parents se déplaçant en fauteuil [Thesis]. Québec, Québec: Université Laval; 2010. 129 p.

Bergeron, C. Vincent, C and Boucher, N (accepted) Experience of parents in wheelchairs with children aged 6 to 12. Journal Technology and Disability.

Bornstein MH. Parenting Infants. In: Bornstein MH, editor. Handbook of Parenting. Volume 1: Children and Parenting. 2nd ed. Mahwah, New Jersey: Lawrence Erlbaum Associates Inc; 2002. p. 3-43.

Camirand J, Aubin J. Composition des ménages comprenant une personne avec incapacité. In: Camirand J, Aubin J, editors. L’incapacité dans les familles québécoises: composition et conditions de vie des familles, santé et bien-être des proches. Québec: Institut de la statistique du Québec; 2004. p. 77-90. [cite Feb 22, 2009]; Available from : http://www.stat.gouv.qc.ca/publications/sante/pdf2004/incap_fam_queb.pdf.

Centre Through the Looking Glass, Berkeley, California, USA; Available from : http://lookingglass.org/index.php.

Collins WA, Madsen SD, Susman-Stillman A. Parenting During Middle Childhood. In: Bornstein MH, editor. Handbook of Par-enting. Volume 1: Children and Parenting. 2nd ed. Mahwah, New Jersey: Lawrence Erlbaum Associates Inc; 2002. p 73-101.

Katz PP, Pasch LA, Wong B. Development of an instrument to measure disability in parenting activity among women with rheumatoid arthritis. Arthritis & Rheumatism 2003; 48(4): 935-43. 

Toms Barker L, Maralani V. Challenges and strategies of disabled parents: Finding from a national survey of parents with disabilities. Final report. Oakland, California: Berkeley Planning Associates; 1997.

Vincelli, Susan. Parent Plus: Guide ressource de conseils et d’aides techniques destiné aux parents ayant une incapacité physique, Montréal, Québec, Canada; 2004.pages. Available from : http://www.luciebruneau.qc.ca/pdf/guide_parents-plus_FINAL.pdf.

References

RecommendationsClinical applications:• In the rehabilitation fields, health professionals could use the results of that research as a benchmark for supporting parents in what they want to do and de-mands for resources.

Program and public services applications: • Adapting the range of services in perinatal period and creating specialized programs for parents with disabili-ties, such as Parent-Plus.• Improving the adapted transit system to take into ac-count the needs of parents with disabilities.• Improving and facilitating access to financial support (adapted sports equipment, technical aids, electric wheelchair).

Political and social applications:• Actions could be taken to eliminate environmen-tal obstacles, such as improving the accessibility of schools and recreational/sports facilities.

Managing extrafamilial       experiences

The supervision of activities taking place outside the family environ-ment (ex: school).

Facilitating positive            relationship

Helping the child develop social skills and create positive, egalitarian relationships with others.

Fostering self-management and social responsibility

Guiding the child in the development of moral values, ability to regu-late behavior and to become aware of his/her responsibilities.

(Collins et al., 2002)

Parenting role with children between 6 to 12 years old

Strategies developped by parents in wheelchair at two stages of child development, 0 to 5 and 6 to 12 years old

Conceptual Framework

0 to 5 years old Develop ways of

doing things Preplan Make physical

(architectural) modifications

Use technical aids Guide the child Equip the child Defend one’s right

6 to 12 years old Guide the child Develop ways of

doing things Preplan Equip the child Use technical aids Defend one’s right Make physical

(architectural) modifications

Environmental 0 to 12 years old Accessibility limitations Prejudices and negatives attitudes Difficulty accessing technical aids Difficult and limited access to

information Inadequate/insufficient public

programs and services Insufficient financial support Inadequate work-life balance policies 0 to 5 years old Finding adapted housing Few parents model in wheelchair 6 to 12 years old Difficulty accessing sports adapted

equipments

Personal 0 to 12 years old Financial insecurity Poor social network Ineffective parenting style Family dynamics/situation Ineffective coping strategies State of health Acceptance of support and one’s

limitations Time/energy management Upper limb disability 0 to 5 years old Difficulty in providing care in the 1st

year Difficulty to travel outside home 6 to 12 years old Limited education

OBSTACLES

0 to 5 years old Nurturant caregiver Social caregiving Didactic caregiving Material caregiving

6 to 12 years old Managing extrafamilial experiences Facilitating positive relationship Fostering self-management and social

responsibility

PARENTING ROLE

PERSONAL STRATEGIES

Informal Spouse Extended

family Child(ren) Members of

the community

Formal Policies regarding

accessibility Family policies Public programs and services Community/social

economy organiza- tions

Insurance programs

SUPPORT

Characteristics Personal Sociodemographic

PARENT Mothers(N=6) Fathers(N=6) Mothers (N=6) Fathers (N=6)

Average age (years) 40.8 SD 3.7

44.8 SD 9.5

Ethnic originNorth America Others (Europe, South America,Africa)

33

60

DiagnosisSpinal cord injury (paraplegia)Spinal cord injury (tetraplegia)Others (Spina bifida, Multiple sclerosis, Polio)

213

321

EducationLess than high schoolHigh schoolCollege or university

114

006

Family situation Couple, full custody of the childrenSingle parent, full custody of the childrenSingle parent, shared custody of the children

420

501

Source of income / OccupationSpecific insurance program Welfare (social assistance)Full-time job (self-employed)

330

402

Number of children2 or less3 or more

51

33

Type of housingSingle family home/condoApartment

33

60

Reproductive processNaturalReproductive technology Adoption

600

043

Area of residenceUrbanSuburbanRural

501

141

Participants’ profile

Results

The ability to coordinate actions, maneuver skillfully to achieve a goal or adapt to a situation.

0 to 5 years old 6 to 12 years oldDevelop ways of doing things: Nursing pillow, technique to help the child to climb on the parent or to sit the child in the seat car.

Guide the child: Supervise homework, get involved with the child, mo-tivate the child to become independent and develop his/her interests.

Preplan: Management of daily activities, anticipate danger and difficulties, verify accessibility.

Develop ways of doing things: Overcome architectural obstacles, participate in the child’s activities.

Make physical modifications: Adapted furniture, reduce architectural barriers in-side and outside the home.

Defend one’s right: Negotiate with the school authorities to make their child’s school accessible.

Use technical aids:

Bath on  wheels, motorized wheelchair, adapted car.

Equip the child: To defend himself/herself, make the child aware of the parent’s limitations, discussion about disability.

Guide the child: Consistent rules, fostering autonomy (reward).

Use technical aids: Adapted sports equipment.

Personal strategies

Direct and indirect assistance from the entourage of the parent.

0 to 5 years old 6 to 12 years oldSpouse: Team work, have a consistent approach with the child, sharing of chores, helping provide care (1st year) and outside activities (0 to 3 years old).

Spouse: Team work, communication to have a consistent approach in the educational strategies, provide assistance in places that are not accessible.

Extended family and the members of com-munity: Positive attitude and good collaboration, helping with outside activities.

Extended family and the members of com-munity: Provide assistance in places that are not acces-sible.

Child: Mutual adaptation between the child and the par-ent.

Child:Providing help in places that are not accessible (pushing the wheelchair), participating in daily chores.

Informal support

Difficulties associated with a social or physical dimension that determines the organization and context of a society.

0 to 5 years old 6 to 12 years oldAccessibility limitations: park, medical centre, day care.

Accessibility limitations: school, recreational/sports centers.

Difficult and limited access to information. Difficulty accessing adapted sports equipment.

Inadequate health services in perinatal period. Prejudices and negative attitudes: school, politicians.

Few inspiring models of parents in wheelchairs.Prejudices and negative attitudes: health services.Inadequate access to adapted transit system for parents with a child.Difficulty accessing an electric wheelchair (help for travelling with the child).

Environmental obstacles

Bureaucratic and program-oriented organizations, explicit rules and cri-teria for elligibility.

0 to 5 years old 6 to 12 years oldFamily policies: Financial support, paternity and mater-nity leave.

School bus service

Policies regarding accessibility:dentist, park, medical centre, day care.

Policies regarding accessibility:school, recreational/sports centers.

Parent Plus program of the Lucie-Bruneau Rehabilitation Centre.

Public programs and services:Adapted transport, electric wheelchair, social security.

Public programs and services:Home care services, adapted transport, electric wheelchair, social security.

Specific insurance program Adapted sports equipment.

Formal support

The parent’s own characteristics (personal and sociodemographic).

0 to 5 years old 6 to 12 years oldTo manipulate the infant before 1 year old and to give the bath before 2 years old. 

Upper limb disability.

To move outside home with the in-fant before 3-4 years old.

Level of education.

Upper limb disability. Time/energy management (work-life balance).

Time/energy management (work-life balance).Poor social network, financial inse-curity, state of health.

Personal obstacles