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Abstract

PURPOSE:

This study aimed to identify the needs and priorities of parents of children with cerebral palsy (CP) in order to improve care by increasing family participation in rehabilitation programmes.

METHODS:

This cross-sectional questionnaire-based study was conducted between January to March 2019. Convenience sampling was used to recruit 43 family members (18 years and above) of children with CP who came to the physiotherapy departments for rehabilitation services for their children. Fisher’s exact test was used to analyse the association between socio-demographic characteristics and each of the need items.

RESULTS:

Five different items were identified to be the family needs that were most frequently met: a) ‘need for active involvement in the child’s treatment and therapies’ ( $n=$ 40; 93.0%), b) ‘need for the provision of standard medical care ( $n=$ 39; 90.7%), c) ‘need for questions to be answered honestly’ ( $n=$ 38; 88.4%), d) ‘need for healthcare professionals to respect the child’s wishes’ ( $n=$ 36; 83.7%), e) ‘need for mothers to discuss their feelings (depression, stress etc.) with someone who has similar experience’ ( $n=$ 36; 83.7%). Conversely, three items were the most unmet family needs: a) ‘need to have professionals to consult whenever the child needs help’ ( $n=$ 39; 90.7%), b) ‘need to be informed about the child’s prognosis’ ( $n=$ 41; 95.3%), and c) ‘need to have financial support to provide the child with adequate care’ ( $n=$ 43; 100%).

CONCLUSION:

All participants overwhelmingly reported that their financial needs were their highest priority. The multiple needs of families of children with disabilities must be assessed and considered in rehabilitation services when treating children with CP.

Keywords

Cerebral palsy disability family needs family participation rehabilitation services Nigeria

1. Introduction

Cerebral palsy (CP) is a chronic condition resulting from permanent damage to the immature brain. It is one of the major causes of disability among children in Nigeria and contributes significantly to the poor health status of these children [1]. CP causes motor impairments which are usually accompanied by other disturbances of sensation, perception, cognition, communication, behaviour, epilepsy, and secondary musculoskeletal problems [2].

In the past, physical therapy treatment was mainly child-focused and impairment-oriented. Parents were usually not involved in the therapy for their children [3]. Recently, physical therapists have become more aware of the possible role of parents in the rehabilitation of children with CP. The parent’s role has now changed from a passive to an active one; the involvement of the parents in a child’s care is known as family-centered care [4, 5, 6]. Family-centered services are intended to promote the well-being and improve the quality of life of children and youths with cerebral palsy (CP) and their families [7, 8]. Having a child with a disability can have profound effects on the family and may place extra demands, challenges, and burdens on the family system. Such experience affects the dynamics of the lives of all the other members of the family in different ways during the different life-cycle stages [9]. Caring parents experience challenges such as the child’s feelings of incompetence and stressful behavior along with their own frustration with the care system [10]. Because of this, understanding the needs of families of children with CP is important for the delivery of family-centered services [11]. Having a child with disabilities creates a potentially wide set of challenges for families, but knowledge of adequate coping and adaptation strategies will assist families to manage the child with CP [12]. Additionally, family members are the primary caregivers of children with disabilities in Nigeria, and they are mostly within the low-income categories [13]. Family needs would likely vary according to individual family circumstances [14]. Researchers have suggested several areas that encompass the unmet needs of parents caring for children with disability, including the need for information about the condition, family and social support, financial assistance, access to community support, and information about the following areas: specialized professional services, planning for the future and the child’s disability in the future [11, 15]. Although there has been extensive exploration of the family needs of children with disability in high-income countries [16, 17, 18], in developing countries where access to health has been compromised, knowledge of the needs of families of children with CP is limited. This study, therefore, assessed the needs of families of children with CP in Kano metropolis with the view to improving family-centered care and family participation in our rehabilitation programme.

2. Materials and methods

2.1 Research design

This research was a cross-sectional study conducted to determine the needs of families of children with CP in Kano metropolis, Nigeria.

2.2 Ethical approval

The study was approved by the Biomedical research ethics committee of the Kano State Hospital management Board as well as the authors’ institution.

2.3 Research setting

The participants of this study were recruited from three outpatient pediatrics clinics attached to the Murtala Mohammed Specialist Hospital (MMSH), Mohammed Abdullahi Wase, Abdullahi Wase Specialist Hospital (MAWSH) and the Hasiya Bayero Pediatrics Hospital (HBPH). The MMSH was established in 1927 and has been the core hospital serving patients from both metropolitan and rural areas as well as some neighboring states and such nearby countries as Niger and Cameroon. The MMSH is a tertiary health institution with 500 beds that serves as a referral center for other established government hospitals and private health establishments within and outside the state. MAWSH is also a tertiary health institution under Kano state hospital management located in the metropolis with 400 beds, and it serves as a referral center. HBPH is a 200-bed capacity hospital specializing in the treatment of children only [19].

2.4 Participants

The convenience sampling technique was applied to recruit forty-three children with CP and family members who came to the Physiotherapy Department for rehabilitation services for their children from January to March 2019. The inclusion criteria were: a child’s primary diagnosis of CP, a mother/caregiver who was at least 18 years old, was willing to participate in the study, and had the ability to speak Hausa or English. The exclusion criteria were a primary diagnosis of a movement or developmental disorder other than CP, concomitant illness or disorder that may affect the quality of life such as cystic fibrosis or a major mental health disorder such as bipolar mood disorder. A parent/legal guardian or caregiver provided written informed consent. For participants who were not able to provide written consent because of their inability to read or write, oral permission was obtained and the consent form was signed by a witness. Participants were informed that they could withdraw from the study at any time during or after data collection and that the withdrawal would not cause any change in their services.

2.5 Measures

2.5.1 Standardized data collection form

A standardized data collection form was used for the collection of information on the followings:

(a)
Socio-demographic characteristics of the caregiver, such as age, gender, earning per month, occupation, level of education, and marital status.

Characteristics of the child, such as type of CP, functional ability, age of the child, and associated impairment.

2.5.2 Gross motor function classification system (GMFCS) [20]

The Gross Motor Function Classification System (GMFCS) is a five-level system instrument designed to classify the gross motor function of children and adolescents with CP based on usual performance at home, in school, and in the community. Classification of motor function is dependent on age, especially during infancy and early childhood; therefore, criteria are described by age band (less than 2 years, 2–4 years, 4–6 years, 6–12 years, and 12–18 years). Distinctions among GMFCS levels are based on functional abilities and limitations, the need for assistive mobility devices, wheeled mobility and, to a lesser extent, quality of movement. The GMFCS has evidence of content, construct, discriminative validity and inter-rater reliability [21]. This measurement would help to determine if the severity of the CP is associated with higher family needs.

2.5.3 The family needs survey

The Family Needs Survey is a self-reported questionnaire that assesses the needs of families of children with developmental disabilities. It’s a 31-item self-reported questionnaire developed to assess the needs of families of young children with developmental disabilities irrespective of participation in a rehabilitation programme. This tool is recommended because it has been widely used in clinical settings and can be administered by non-neurologists following minimal training. In this study, the items were modified to 21 and grouped into eight areas of needs to assess the expected needs of the parents/guardians of the children with CP. The areas are: 1) family-centred care, 2) standard medical care, 3) information, 4) respect of the child’s wishes, 5) discussion with someone with similar experience, 6) consultation of professionals whenever the need arises, 7) prognosis of the child and 8) financial need. Each item is rated on a 3-point scale; the met need was scored as 3, partially met as 2, and unmet as 1. The highest possible total score was 66 while the lowest total score possible was 22. Test-retest reliability over 6 months ranged from 0.68 to 0.82. Cronbach’s alpha coefficient was 0.91 for the total score and between 0.66 and 0.86 for the eight areas of need [21].

2.6 Data analysis

The Statistical Package for the Social Sciences (SPSS) (Version 21.0, SPSS Inc., Chicago IL, USA) was used to analyse the demographic characteristics of the parents/guardians and children with CP which were presented as means and standard deviations (mean $\pm$ SD) or frequencies and percentages where appropriate and depicted in tables. Continuous socio-demographic variables (age of child and age of the mother) were split into categories before the analysis (see Tables 1 and 2). Fisher’s exact test was used to analyse the association between socio-demographic characteristics and each of the need items and Bonferroni correction/adjustment was made during the analyses. All statistics were conducted at 0.01 alpha level.

Table 1
Characteristics of the mothers

Variables	Mean $\pm$ SD	$N=$ 43 (%)
Age (years)	26.8 $\pm$ 6.8
Age category
Early young adult (16–20)		23 (53.5)
Young adult (21–26)		8 (18.6)
Late young adult (27–41)		12 (27.9)
Occupation
Self-employed		10 (23.3)
Unemployed		31 (72.1)
Civil servant		2 (4.7)
Level of education
Non-formal		8 (18.6)
Primary		10 (23.3)
Secondary		19 (44.2)
Tertiary		6 (14.0)
Monthly income
Below minimum		41 (95.7)
Low income		2 (4.3)

KEY: $n=$ frequency; % $=$ percent; SD $=$ standard deviation.

Table 2

Characteristics of the children

Variables	Mean $\pm$ SD	$N=$ 43 (%)
Age (years)	3.37 $\pm$ 3.78
Age category
$<$ 2 years		8 (18.6)
2–4 years		24 (55.8)
4–6 years		6 (14.0)
6–12 years		3 (7.0)
12–18 years		2 (4.6)
Gender
Male		21 (48.8)
Female		22 (51.2)
CP type
Spastic		25 (58.1)
Athetoid		12 (27.9)
Ataxic		1 (2.3)
Mixed		5 (11.6)
Spastic type
Diplegic		20 (46.5)
Hemiplegic		8 (18.6)
Quadriplegic		15 (34.9)
GMFCS
I		1 (2.3)
II		3 (7.0)
III		6 (14.0)
IV		31 (72.1)
V		2 (4.7)
Feeding
Normal		31 (72.1)
Impaired		12 (27.9)
Communication
Normal		32 (74.4)
With difficulty		10 (23.3)
Unable		1 (2.3)
Vision
Normal		41 (95.3)
Impaired		2 (4.7)
Hearing
Normal		42 (97.7)
Need aid		1 (2.3)
Child education
Does not go to school		40 (93.0)
Going to normal school		3 (7.0)

KEY: $n=$ number; % $=$ percent; SD $=$ standard deviation; GMFCS $=$ gross motor function classification system; CP $=$ cerebral palsy.

3. Results

3.1 Characteristics of the mothers/caregivers

A total of forty-three mothers of children with CP, aged 18 to 45 years (mean age $=$ 26.8 years $\pm$ 6.8 SD), were evaluated. For easy reference, mothers’/ caregivers’ ages were classified into three: early young adults (aging from 16 to 20 years – 23 participants), young adults (aging from 21 to 26 years – 8 participants), and late young adults (aging from 27–41 years – 12 participants). Most of the participants (70%, $n=$ 31) came from rural areas and were living with five to 10 family members. A significant number of the participants (44.1%) had only secondary education, but a few among them (14.0%) had a university or equivalent qualification. Most of the participants (95.7%) had a monthly family income below the minimum wage, i.e., less than 18,000 naira (Nigerian currency; $50 US Dollars) (Table 1).

3.2 Characteristics of the children

In terms of the children’s characteristics, 48.8% were male. The ages of the children ranged from 7 months to 18 years (mean age was 3.4 years old SD $\pm$ 3.8). Twelve (27.9%) had athetoid CP, 25 (58.1%) had spastic CP, 1 (2.4%) had ataxic CP, and 5 (11.6%) had mixed CP. Only three of the children were attending school at the time of this study; 25.6% were non-verbal or had difficulty communicating, and 90% were unable to walk. Regarding motor skills, 72.1% of the children were classified in the GMFCS as Level IV, whereas only 7% were classified as Level II (Table 2).

3.3 Perceived needs of families

Participants reported various needs, which have been organized into items. The family needs with the highest percentage of respondents reporting “Met” were: a) ‘the need to be actively involved in my child’s treatments and therapies’ ( $n=$ 40; 93.0%), b) ‘need to be assured that the best possible medical care is being given to my child’ ( $n=$ 39; 90.7%), c) ‘need to have my questions answered honestly’ ( $n=$ 38; 88.4%), d) ‘need to be shown that health professionals respect my child’s needs or wishes’ ( $n=$ 36; 83.7%), e) ‘need to discuss feelings about my child with someone who has gone through the same experience’ ( $n=$ 36; 83.7%). In contrast, the family needs with the highest percentage of respondents reporting “unmet” were: ‘the need to have professionals to consult whenever the child needs help’ ( $n=$ 39; 90.7%), ‘to be told how long each of my child problems is expected to last’ ( $n=$ 41; 95.3%), and ‘the need to have financial support to provide my child with his/her therapies, treatments and care’ ( $n=$ 43; 100%). Overall, 42.7% of the expressed family needs were fully met, 8.3% were partially met, 22.3% were unmet, and 26.7% were undecided (Table 3).

Table 3
Level of satisfaction of participants’ expressed needs ( $N=$ 43)

NEED Variables	Not applicable $N$ (%)	Met $N$ (%)	Partially met $N$ (%)	Unmet $N$ (%)
I NEED to have explanations from professionals in terms I can understand	–	32 (74.4)	7 (16.3)	4 (9.3)
I NEED to be assured that the best possible medical care is being given to my child	–	39 (90.7)	4 (9.3)	–
I NEED to have my questions answered honestly	1 (2.3)	38 (88.4)	3 (7.0)	1 (2.3)
I NEED to have professionals to turn to for advice/services when my child needs help	1 (2.3)	2 (4.7)	1 (2.3)	39 (90.7)
I NEED to have my child’s teacher understand his/her problems	42 (97.7)	1 (2.3)	–	–
I NEED to be told how long each of my child problems is expected to last	–	1 (2.3)	1 (2.3)	41 (95.3)
I NEED to have information on my child’s therapy or educational progress	1 (2.3)	29 (67.4)	3 (7.0)	10 (23.3)
I NEED to have enough resources for my child (e.g., physical therapy counseling)	7 (16.3)	6 (14.0)	13 (30.2)	17 (39.5)
I NEED to be shown that health professionals respect my child’s needs or wishes	2 (4.7)	36 (83.7)	5 (11.6)	–
I NEED to be shown that my opinions are considered in planning my child’s treatment, therapies, or education	30 (69.8)	4 (9.3)	1 (2.3)	8 (18.6)
I NEED to be told regularly what is being done with or for my child	2 (4.7)	35 (59.3)	2 (4.7)	4 (9.3)
I NEED to have different professionals agree on the best way to help my child	34 (79.1)	6 (14.0)	2 (4.7)	1 (2.3)
I NEED to be actively involved in my child’s treatments and therapies	–	40 (95.2)	2 (4.8)	–
I NEED to have help from other family members in taking care of my child	8 (18.6)	15 (34.9)	3 (7.0)	17 (39.5)
I NEED to discuss feelings about my child with someone who has gone through the same experience	–	36 (83.7)	5 (11.6)	2 (4.7)
I NEED to be well-educated about my child’s disorder to be an effective decision-maker regarding the needs of my child	–	19 (45.2)	6 (14.3)	17 (40.5)
I NEED to have consistent physical therapy for my child	30 (69.8)	2 (4.7)	11 (25.6)	–
I NEED to be shown respect by the professionals working with my child	2 (4.7)	35 (81.4)	6 (14.0)	–
I NEED to have financial support to provide my child with his/her therapies, treatments and care	2 (4.7)	–	–	41 (95.3)
I NEED my child’s school to set up a specialized education plan for my child	42 (97.7)	1 (2.3)	–	–
I NEED for my spouse and me agree on decisions regarding our child	37 (86.0)	5 (11.6)	–	1 (2.3)
Summary ( $N=$ 43)	11.48 (26.7%)	18.38 (42.7%)	3.57 (8.3%)	9.67 (22.3%)

KEY: $N=$ number of the participants; % $=$ percent.

3.4 The association between family needs and the socio-demographic characteristics of the participants

Statistically significant associations were found between mothers’ age and the item ‘need to be shown that my opinions are considered in planning my child’s therapies’ ( $P=$ 0.007*); children’s age and the item ‘need to be shown respect by the professionals working with my child’ ( $P=$ 0.009*); cerebral palsy type and the items ‘need to have explanations in terms I can understand’ ( $P=$ 0.008*) and ‘need to have consistent physical therapy for my child’ ( $P=$ 0.000*). Also, a statistically significant association was found between the functional level of the child (GMFCS) and the item ‘need to have enough resources for the child (e.g., physical therapy, counseling) ( $P=$ 0.001*)’ (see Table 4).

Table 4
Association between family needs and socio-demographic characteristics of mothers and children

I NEED …	Age of mother	Education level	Age of child	CP type	GMFCS
To have explanations from professionals in terms I can understand	$X^{2}=$ 15.0
$P=$ 0.046
df $=$ 4	$X^{2}=$ 8.5
$P=$ 0.107
df $=$ 6	$X^{2}=$ 5.6
$P=$ 0.384
df $=$ 8	$X^{2}=$ 14.4
$P=$ 0.008*
df $=$ 6	$X^{2}=$ 10.8
$P=$ 0.146
df $=$ 8
To be assured that my child has the best medical care	$X^{2}=$ 2.3
$P=$ 0.908
df $=$ 4	$X^{2}=$ 1.52
$P=$ 0.889
df $=$ 6	$X^{2}=$ 0.98
$P=$ 1.000
df $=$ 8	$X^{2}=$ 3.1
$P=$ 0.368
df $=$ 6	$X^{2}=$ 4.5
$P=$ 0.417
df $=$ 8
To have questions answered honestly	$X^{2}=$ 20.6
$P=$ 0.201
df $=$ 4	$X^{2}=$ 8.42
$P=$ 0.540
df $=$ 6	$X^{2}=$ 12.15
$P=$ 0.318
df $=$ 8	$X^{2}=$ 14.63
$P=$ 0.162
df $=$ 6	$X^{2}=$ 15.08
$P=$ 0.706
df $=$ 8
To have professionals to turn to for advice/services when my child needs help	$X^{2}=$ 19.80
$P=$ 0.306
df $=$ 4	$X^{2}=$ 9.63
$P=$ 0.290
df $=$ 6	$X^{2}=$ 10.35
$P=$ 0.636
df $=$ 8	$X^{2}=$ 15.89
$P=$ 0.099
df $=$ 6	$X^{2}=$ 18.87
$P=$ 0.381
df $=$ 8
To have my child’s teacher understand his/her problems	$X^{2}=$ 9.02
$P=$ 0.186
df $=$ 4	$X^{2}=$ 3.85
$P=$ 0.326
df $=$ 6	$X^{2}=$ 7.50
$P=$ 0.140
df $=$ 8	$X^{2}=$ 4.84
$P=$ 0.419
df $=$ 6	$X^{2}=$ 12.05
$P=$ 0.023
df $=$ 8
To know how long my child’s problems are expected to last	$X^{2}=$ 10.52
$P=$ 1.00
df $=$ 4	$X^{2}=$ 7.78
$P=$ 0.167
df $=$ 6	$X^{2}=$ 13.6
$P=$ 0.056
df $=$ 8	$X^{2}=$ 9.81
$P=$ 0.336
df $=$ 6	$X^{2}=$ 10.39
$P=$ 1.000
df $=$ 8
To have information on my child’s therapy or educational progress	$X^{2}=$ 23.47
$P=$ 0.024
df $=$ 4	$X^{2}=$ 8.48
$P=$ 0.107
df $=$ 6	$X^{2}=$ 10.0
$P=$ 0.374
df $=$ 8	$X^{2}=$ 13.27
$P=$ 0.151
df $=$ 6	$X^{2}=$ 10.25
$P=$ 0.930
df $=$ 8
To have enough resources for my child (e.g., physical therapy counselling)	$X^{2}=$ 11.53
$P=$ 0.715
df $=$ 4	$X^{2}=$ 5.17
$P=$ 0.876
df $=$ 6	$X^{2}=$ 10.9
$P=$ 0.129
df $=$ 8	$X^{2}=$ 8.07
$P=$ 0.540
df $=$ 6	$X^{2}=$ 21.97
$P=$ 0.001*
df $=$ 8
To have health professionals respect my child’s needs or wishes	$X^{2}=$ 14.12
$P=$ 0.079
df $=$ 4	$X^{2}=$ 5.82
$P=$ 0.334
df $=$ 6	$X^{2}=$ 6.81
$P=$ 0.292
df $=$ 8	$X^{2}=$ 8.12
$P=$ 0.221
df $=$ 6	$X^{2}=$ 6.41
$P=$ 0.820
df $=$ 8
To be shown that my opinions are considered in planning my child’s treatment, therapies, or education	$X^{2}=$ 25.85
$P=$ 0.007*
df $=$ 4	$X^{2}=$ 13.28
$P=$ 0.051
df $=$ 6	$X^{2}=$ 14.02
$P=$ 0.075
df $=$ 8	$X^{2}=$ 14.60
$P=$ 0.081
df $=$ 6	$X^{2}=$ 17.71
$P=$ 0.141
df $=$ 8
To be told regularly what is being done for my child	$X^{2}=$ 14.67
$P=$ 0.482
df $=$ 4	$X^{2}=$ 6.05
$P=$ 0.822
df $=$ 6	$X^{2}=$ 13.03
$P=$ 0.113
df $=$ 8	$X^{2}=$ 10.39
$P=$ 0.417
df $=$ 6	$X^{2}=$ 8.87
$P=$ 1.000
df $=$ 8
To have different professionals agree on the best way to help my child	$X^{2}=$ 19.58
$P=$ 0.157
df $=$ 4	$X^{2}=$ 7.07
$P=$ 0.730
df $=$ 6	$X^{2}=$ 6.28
$P=$ 0.908
df $=$ 8	$X^{2}=$ 9.00
$P=$ 0.706
df $=$ 6	$X^{2}=$ 18.27
$P=$ 0.178
df $=$ 8
To be actively involved in my child’s treatments and therapies	$X^{2}=$ 7.793
$P=$ 0.114
df $=$ 4	$X^{2}=$ 4.84
$P=$ 0.092
df $=$ 6	$X^{2}=$ 4.94
$P=$ 0.244
df $=$ 8	$X^{2}=$ 5.78
$P=$ 0.187
df $=$ 6	$X^{2}=$ 6.29
$P=$ 0.286
df $=$ 8
To have help from other family members in taking care of my child	$X^{2}=$ 17.27
$P=$ 0.152
df $=$ 4	$X^{2}=$ 11.97
$P=$ 0.140
df $=$ 6	$X^{2}=$ 8.15
$P=$ 0.458
df $=$ 8	$X^{2}=$ 11.65
$P=$ 0.168
df $=$ 6	$X^{2}=$ 18.15
$P=$ 0.026
df $=$ 8
To discuss feelings about my child with someone who has a similar experience	$X^{2}=$ 6.05
$P=$ 0.926
df $=$ 4	$X^{2}=$ 4.99
$P=$ 0.527
df $=$ 6	$X^{2}=$ 7.41
$P=$ 0.228
df $=$ 8	$X^{2}=$ 4.08
$P=$ 0.896
df $=$ 6	$X^{2}=$ 12.35
$P=$ 0.139
df $=$ 8
To be well-educated about my child’s disorder in order to effectively make decisions regarding my child’s need	$X^{2}=$ 13.90
$P=$ 0.078
df $=$ 4	$X^{2}=$ 4.27
$P=$ 0.671
df $=$ 6	$X^{2}=$ 3.96
$P=$ 0.739
df $=$ 8	$X^{2}=$ 8.88
$P=$ 0.117
df $=$ 6	$X^{2}=$ 10.30
$P=$ 0.134
df $=$ 8
To have consistent physical therapy for my child	$X^{2}=$ 11.30
$P=$ 0.280
df $=$ 4	$X^{2}=$ 3.53
$P=$ 0.824
df $=$ 6	$X^{2}=$ 4.96
$P=$ 0 4.963
df $=$ 8	$X^{2}=$ 23.12
$P=$ 0.000*
df $=$ 6	$X^{2}=$ 5.31
$P=$ 0.939
df $=$ 8
To be shown respect by the professionals working with my child	$X^{2}=$ 10.46
$P=$ 0.343
df $=$ 4	$X^{2}=$ 5.24
$P=$ 0.467
df $=$ 6	$X^{2}=$ 14.99
$P=$ 0.009*
df $=$ 8	$X^{2}=$ 7.16
$P=$ 0.341
df $=$ 6	$X^{2}=$ 8.35
$P=$ 0.489
df $=$ 8

Table 4, continued
I NEED …	Age of mother	Education level	Age of child	CP type	GMFCS
To have financial support to provide my child with adequate care	$X^{2}=$ 3.37
$P=$ 1.000
df $=$ 4	$X^{2}=$ 6.67
$P=$ 0.017
df $=$ 6	$X^{2}=$ 1.50
$P=$ 1.000
df $=$ 8	$X^{2}=$ 2.49
$P=$ 1.000
df $=$ 6	$X^{2}=$ 10.50
$P=$ 0.037
df $=$ 8
To have my child’s school set up a specialized education plan for my child	$X^{2}=$ 9.02
$P=$ 0.186
df $=$ 4	$X^{2}=$ 3.85
$P=$ 0.326
df $=$ 6	$X^{2}=$ 7.50
$P=$ 0.140
df $=$ 8	$X^{2}=$ 4.84
$P=$ 0.419
df $=$ 6	$X^{2}=$ 12.05
$P=$ 0.023
df $=$ 8
To have my spouse and me agree on decisions regarding our child	$X^{2}=$ 11.62
$P=$ 0.374
df $=$ 4	$X^{2}=$ 6.14
$P=$ 0.356
df $=$ 6	$X^{2}=$ 8.18
$P=$ 0.287
df $=$ 8	$X^{2}=$ 9.48
$P=$ 0.175
df $=$ 6	$X^{2}=$ 7.27
$P=$ 0.861
df $=$ 8

KEY: * $=$ significant at $P<$ 0.01; GMFCS $=$ gross motor function classification system; CP $=$ cerebral palsy.

Table 5

Percentage of mothers who reported their NEEDS have been met based on the significant findings

NEED variables	Age category	$N$ (%)
I NEED to have explanations in terms I can understand	Early young adults ( $N=$ 23)
Young adults ( $N=$ 8)
Late young adults ( $N=$ 12)	21 (91.3)
8 (100.0)
3 (25.0)
I NEED to have enough resources for my child (e.g., physical therapy counselling)	Early young adults ( $N=$ 23)
Young adults ( $N=$ 8)
Late young adults ( $N=$ 12)	2 (8.7)
–
4 (33.3)
I NEED to be shown that my opinions are considered in planning my child’s treatment, therapies, or education	Early young adults ( $N=$ 23)
Young adults ( $N=$ 8)
Late young adults ( $N=$ 12)	1 (4.3)
–
3 (25.0)
I NEED to have consistent physical therapy for my child	Early young adults ( $N=$ 23)
Young adults ( $N=$ 8)
Late young adults ( $N=$ 12)	1
–
1 (8.3)
I NEED to be shown respect by the professionals working with my child	Early young adults ( $N=$ 23)
Young adults ( $N=$ 8)
Late young adults ( $N=$ 12)	23 (100.0)
8 (100.0)
4 (33.3)

Key: blank rows (–) indicate unmet needs.

3.5 Percentage of parents/caregivers who reported their NEEDS have been met/unmet based on the significant findings

The results indicate that ‘the need for adequate explanation’ and ‘the need be shown respect by the professionals working with my child’ were the items that had the highest percentages of the young adult and early young adult parents/caregivers responding that these needs were met. However, very few of the late young adult parents reported that these needs were met. In contrast, the outcomes also indicate that ‘the need tohave enough resources for the child’, ‘the need to seek parent’s opinion when planning therapy for the child’ and ‘the need to have consistent physical therapy for the child’ were the items that had the highest percentages of the young adult parents/caregivers responding that these needs were unmet. These needs were reported to have been met by a very few of early and late young adult parents/caregivers (see Table 5).

4. Discussion

The present study aimed to investigate the needs of families of children with CP in northern Nigeria. The needs that were identified as “unmet” by the highest percentage of respondents included the following three items: the need to have professionals to consult whenever the child needs help, the need to be informed about the child’s prognosis, and the need to have financial support to provide the child with adequate care. The nature of family needs reported by the participants in this study was consistent with findings in the previous studies by Hu and colleagues [22] and Nuri and coworkers [23] which specifically indicated the items, ‘need for adequate financial support, ‘need to have professionals to consult whenever the child needs help’, and ‘need to be informed about the child’s prognosis’ were the “unmet” family needs with the highest percentage of respondents among families of children with CP. However, participants in our study expressed utmost priority on financial needs before other needs such as the need to have professionals to consult whenever the child needs help and the need to be informed about the child’s prognosis. This might be attributed to the fact that the majority of the parents/guardians or caregivers of children with CP have no access to adequate financial support to take care of their children, and about 90% of the caregivers in this study earn below the minimum wage ( $<$ $\mathrm{N}\hskip-10.3pt=$ 18,000) monthly. Our results were similar to those of Emerson [24] and Sloper [25], who found that the unmet needs with the highest percentage of respondents of families of children with CP were ‘need to be informed about the child’s prognosis (information)’ and ‘need to have professionals to consult whenever the child needs help. However, their findings contradicted our result concerning the item, ‘need for adequate financial support.’ Their results indicated that this particular family need was met by the largest percentage of respondents. This could be as a result of available free social and healthcare delivery for children with disabilities in developed countries. In such countries, parents of children with CP who are in low or moderate-income levels receive child tax credits from the government to subsidize some of their costs. In some cases, parents do not pay out of pocket for medical services unlike in the countries of sub-Sahara Africa. Financial needs followed by the need for information and need for rehabilitation services were unmet for the larger percentage of participants in this study. The financial needs were direct (e.g., cost of medical and rehabilitation services) and indirect cost of care (i.e., transportation, lodging facilities and meals for the duration of seeking of health care services). The items regarding needs for information and rehabilitation services go hand in hand. Information is really important because even if the government provides rehabilitation centers/services, people might not utilize it due to lack of information. In addition, it is the right of the parents to know about the therapy of their children. Thus, we recommend that policymakers and related entities consider providing people with information about the existing government rehabilitation centers and services rendered. It is also important to further explore the reasons behind the limited access of families to these services in public facilities.

The results of the present study indicate that ‘the need for adequate explanation’ and ‘the need be shown respect by the professionals working with my child’ were met for the highest percentages of young adult and early young adult parents/caregivers. However, very few of the late young adult parents reported that these needs were met. This means that the parents/guardians or caregivers who are young adults were significantly more satisfied with the explanations provided to them when receiving care and the respect they received from the professionals about their children’s treatment or therapy than the late young adults. In contrast, this study found the highest percentage of young adult parents/guardians or caregivers reported that ‘the need to have enough resources for the child’, ‘the need to seek parent’s opinion when planning therapy for the child’ and ‘the need to have consistent physical therapy for the child’ were unmet. A possible reason could have been that the young adult parents were more educated and could check the internet about their child’s condition. Furthermore, people are gaining more awareness about their medical rights, i.e., consent, information, and right to litigate a hospital or health practitioner.

The findings of the present study are in line with those of Armstrong and Kerns [26] who reported that the categories with the highest percentage of met items in their study were: ‘questions were always answered honestly’, ‘need for provision of standard care and therapy’, and ‘need for parents to be actively involved in the child’s treatment.’ They further explained that honest answers to their questions were the met family need item with the highest percentage among the parents/guardians or caregivers of children with traumatic brain injury. This indicates that families of children with physical disabilities might share similar needs. Furthermore, the item ‘need for the provision of standard care and therapy’ was the met family need with the second-highest percentage of the respondents. This suggests that parents/guardians or caregivers of children with CP are satisfied with the standard of care and therapy received by their children. This also suggests that the provided therapies are yielding the desired results. Furthermore, the results of this study confirm the results of the study by Palisano and co-workers [11] who reported that parents of children/youth who use wheeled mobility reported the highest percentage of unmet family needs while parents of children/youth who walk without restrictions reported the fewest percentage of the unmet needs. The results of this study indicate that the highest percentage of parents/guardians or caregivers of children who have severe functional limitations reported that their needs concerning adequate physical therapy and counselling were not met. This suggests that the parents/guardians or caregivers of children with CP who were ambulatory were more satisfied with the amount of therapy and counselling they were receiving than the caregivers of children with CP who did not develop the ability to walk. Also, the results show that 90% of children with CP did not attend any school. This could be due to the severe level of their activity limitations; about 72.1% of the children were found to have GMFCS IV level of limitations. This might explain why all but one of the parents/guardians or caregivers reported that the item, ‘the need for my child to be understood by teachers’ did not apply to them.

The results of the present study have implications for policy and practice. The knowledge that family needs vary considerably is important and should be considered by healthcare organizations in anticipating the resources required to serve children with CP. For instance, families with limited support and income are likely to require more resources to meet their needs than families with high income who are well supported. Also, helping the family understand more about their child supports the practice of partnering with families to identify child, family and environmental strengths and what needs to be done to achieve the desired goals and outcomes.

5. Limitations and recommendations of the study

The study is limited with a small sample size, single geographical area, the inclusion of only one family member as a respondent, and the inclusion of only English and Hausa speaking participants. Thus, the findings of our study should be understood to be specific to families who experience this type of support. There should be further research on the needs of families of children with conditions other than CP, those who live in the community or do not have access to services at metropolitan Hospitals.

6. Conclusion

Parents/guardians or caregivers of children with CP face a multitude of challenges, in addition to the condition of the child itself, which may include financial burden, social isolation, and concerns about the future. The greatest needs identified by the participants in this study were: ‘the need for adequate financial support,’ ’the need to have professionals to consult whenever the child needs help,’ and ‘the need to be informed about the child’s prognosis.’ These findings have practical implications for service providers and policymakers. Health professionals should work closely with families to identify their priority needs, which must be considered in the interventions to improve outcomes in the care of children with CP. Policymakers must consider financial support in developing and implementing policies that target the needs of families of children with CP if outcomes of care are to improve.

Key messages

The following categories were identified as important needs for families of children with CP; ‘the need for adequate financial support, ’the need to have professionals to consult whenever the child needs help’, and ‘the need to be informed about the child’s prognosis.

Health professionals should work closely with families of children with disabilities to identify their needs and their priorities.

This study emphasized the financial needs of families of children with disability in Nigeria.

Funding

This study did not receive any funding.

Footnotes

Acknowledgments

We would like to thank Professor Jan Willem Gorter (Department of Pediatrics McMaster University, Canada) for providing his expertise as a key reviewer and guiding us in the direction of the current literature.

Conflict of interest

The authors have no conflict of interest to report.

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Assessment of family needs of children with cerebral palsy in Northern-Nigeria: A cross-sectional study

Abstract

PURPOSE:

METHODS:

RESULTS:

CONCLUSION:

Keywords

1. Introduction

2. Materials and methods

2.1 Research design

2.2 Ethical approval

2.3 Research setting

2.4 Participants

2.5 Measures

2.5.1 Standardized data collection form

2.5.3 The family needs survey

2.6 Data analysis

Table 1 Characteristics of the mothers

3.1 Characteristics of the mothers/caregivers

3.2 Characteristics of the children

3.3 Perceived needs of families

Table 3 Level of satisfaction of participants’ expressed needs ( N = 43)

Table 4 Association between family needs and socio-demographic characteristics of mothers and children

4. Discussion

5. Limitations and recommendations of the study

6. Conclusion

Key messages

Funding

Footnotes

Acknowledgments

Conflict of interest

References

Table 1
Characteristics of the mothers

Table 3
Level of satisfaction of participants’ expressed needs ( $N=$ 43)

Table 4
Association between family needs and socio-demographic characteristics of mothers and children